View Full Version : My younger son...


MuscleMama
03-22-10, 07:40 PM
This is long. I just need to put it all down in writing. Any input or thoughts would be great (if you can even get thru it!) :)

I have posted quite a bit about my older son who is 8 and has adhd. His little brother is 5 and in kindergarten. He has fine and gross motor delays and lately I have been suspecting adhd, too.

Thru the pediatrician we started the evaluation process (when we saw the gross motor issues) back when he was 3. The hospital evaluation prompted us to get him evaluated by the school system where he first qualified for PT over a year ago. Their follow up suggested he get tested for OT which he also qualified for and has been receiving since Sept. They also suggested he be seen by a neurologist to rule out any physical spinal problems.

We saw a neurologist who suggested an MRI and FMAER/EEG/qEEG (I suggested the qEEG and he thought it was a good idea). The MRI was abnormal, he has a syrinx at T8 (space filled with fluid slightly larger than usual) and a thickened, fatty filum and possible tethered cord. We met with a neurosurgeon last week who thinks the syrinx is not a problem and is unsure if the fatty filum is an issue and contributing to his leg weakness (one more than the other). It can also cause pain, but he only occasionally complains of leg pain during the night which may or may not be related. We are doing some follow up testing to see if the nerves are being affected. If they are, they might do surgery which would be a quick snip of the cord in the sacrum area and relatively minor surgery.

The hospital did the FMAER and EEG, but not the qEEG which they didn't tell me until after the fact. The dr told me one thing and the testing dept told me another. It was a long story which I will spare you, but I was very upset and we are switching neurologists. The 2 tests they did had some abnormal results

From the EEG report: “There are two bursts of generalized slowing at 3 Hz with notched contours (left>right). This notching may represent admixed irregular spikes.

This EEG record is abnormal due to rare intermittent generalized slowing with notched contours.”

From the FMAER report: “The 4 Hz steady state FMAER shows a very well developed left temporal-central response. However, there is a poor right central-temporal response with a clear 4 Hz following response noted just in the right posterior temporal (T6) region.

The borderline FMAER shows a poor right sided response in the face of an excellent left sided response.The relatively deficient, although present, right sided response may have other implications as regards subtle auditory processing deficiency or right temporal dysfunction in general.”

We finally met the neurologist again today to review these results. After he realized that my son is left handed, he wondered if his brain is a mirror image of most people. He said about 50% of left handed people are right/left brain switched. If that is the case for my son then the report shows auditory processing issues.

In addition to these evaluations, we just had his 504 Plan review meeting with his school in December where I was a bit blind-sided by the many problems they told me he is having at school. Trouble with visual processing, attention, fine motor, motor planning and anxiety. Because of his fine motor trouble (his hands tremble a lot during tasks) he has trouble with cutting paper, coloring and writing. I think he sees how much his work differs from the other kids at his table and he gets anxious. He often says he can't do things and asks for help. His OT said it's like he has a block - once he perceives something as difficult he shuts down and says it's too hard or often tries to distract from the task by being funny or telling stories.

The school agreed to do CORE testing of visual perceptual skills, early academics, psychological and speech/language. We met Friday and he now qualifies for an IEP. His tests showed he was average to above average in intelligence, reading and math abilities. They all say he is a sweet boy with a great disposition, no behavioral problems. He loves the social aspect of school and has many friends.

The OT visual perceptual skills were problematic. He had difficulty tracking and scanning, crossing midline, converging/diverging, etc. This was news to me, I didn't realize.

The speech & language testing was missed so they are going to do that soon. I am going to tell them about the possible auditory issue and encourage them to do a full eval on that.

In addition to all this, around Xmas we discovered that he is color blind. He doesn't see red and green. He has trouble telling blue from purple for example. He sees colors and can often tell you if something is red or green, things just look differently to him. This is genetic from the mother and I learned that my mom's uncles were color blind, too.

The current neurologist is going to talk to the head of the testing dept to see if a qEEG or other testing can be done to help learn more about what's going on in his brain.

In June we see the new neurologist who specializes in behavioral neurology and learning disabilities and comes highly regarded.

I now suspect he doesn't have adhd, but rather these issues are the cause of his excessive talking and lack of attention. When his brother isn't around to get him riled up, he actually isn't nearly as difficult as his brother.

I also wonder what life is like for him with all these issues. How different must things look and sound to him and how much does he have to muddle thru it all? I give him a lot of credit for doing as well as he is considering all this stuff he has to deal with. I just want to help my little guy succeed and feel good about himself.

MuscleMama
03-22-10, 08:09 PM
:eek: Holy crap. I can't believe how long that is. I didn't really realize how much I've been dealing with. No wonder I've been so stressed.

I forgot to add that next week he has a full vision evaluation with a behavioral optometrist. She did a very thorough eval of my older son in Nov and I liked her. I'm curious what that will show and if we'll be able to help his visual processing skills.

In addition to all this, I've been trying to help my older son handle his adhd. We've been trying neurofeedback, unsuccessfully so far.

MyGuysMom
03-22-10, 08:14 PM
Much of this sounds like my son. Not everything, but I can empathize. Don't you keep thinking that one day you will find the key to the whole thing that will fix it??

MGDAD
03-23-10, 12:13 PM
Wow, that is a lot of information. Is there a treatment for all of the abnormal things in the neuro testing?

Ms. Mango
03-23-10, 04:45 PM
I also wonder what life is like for him with all these issues. How different must things look and sound to him and how much does he have to muddle thru it all? I give him a lot of credit for doing as well as he is considering all this stuff he has to deal with. I just want to help my little guy succeed and feel good about himself.

Yeah, you have to wonder how hard he's working everyday. I can't offer anything constructive, just that it looks like you're doing everything you can to get some answers and get him the help he needs.

MuscleMama
03-23-10, 06:29 PM
Thanks, guys. As far as what can be done, I'm not sure. The neurologist seemed to think it is a learning disability he will have to deal with.

Today I had a meeting with the neurofeedback director to go over things so far for my older son. I also told him about my younger son and what's going on with him. I asked if neurofeedback might be an option for him and he replied honestly that there is no documented research that it has helped for these issues, but maybe it can. There's no way to know for sure. He also mentioned something called a Wada test that can help figure out if a person's brain is reversed like my son's may be. I will ask the neurologist about that. He also said the pediatrician might be able to order a speech language pathologist evaluation of auditory processing.

MuscleMama
04-07-10, 08:18 AM
Last week he had the eval with the behavioral optometrist which showed a lot of issues. She noticed that he seems to have a pattern of overconvergence and his vision is tunneled down. His eyes work hard to keep things clear which causes fatigue over time. He has trouble getting his body to reproduce what his eyes see. He is delayed and still motor system dominant (as opposed to moving to visual system dominant) which is why he still constantly needs to touch everything.

She thinks he has trouble with primitive reflex integration. This is something I hadn’t heard of, but sounds like it might really help explain a lot of his issues. One fascinating example was when she asked him to stand next to her and copy what she was doing – put his heels together, point his toes out and take a few steps (walk like a duck). He really struggled to do it and really wasn't able to. While concentrating on his feet, he didn't seem to realize that he was twisting his arms outward and moving them around a lot. She then asked him to try pointing his toes in (like a pigeon) and his arms turned in and his elbows went up to his shoulders.

Impression and Recommendations:
DS has not fully developed his visual tracking, focus flexibility and eye teaming stamina to support maximum academic achievement. In addition, he has not fully integrated primitive reflexes and struggles with visual motor integration and higher level processing of visual information. Less than optimal visual learning abilities will impact school, sports and play (social interaction). A success based vision therapy program will help him develop his visual efficiency and processing for maximum school and life success.

MuscleMama
04-07-10, 08:22 AM
He tested as 'significantly deficient' for visual motor integration.

He tested 'moderately deficient' for visual tracking, eye team convergence, focusing, visual memory.

He tested 'normal' for smooth eye movements, laterality directionality, visualization.

She noted that his Moro Reflex and Tonic Labyrinthine Reflex were present. His Spinal Galant Reflex, ATNR and STNR were not present.

Sit-n-Spin
04-07-10, 12:26 PM
That's a lot, and you are doing so much and are on top of it. It's so great that today we can diagnose these problems more easily and with such precision.

How would the left and right brain mirror image affect him?

Ms. Mango
04-07-10, 03:03 PM
Wow. That's a lot of information to take in.

Is more intensive OT/PT recommended in addition to the vision therapy? Also, is there any connection between the physical spinal issues and these reflexes?

Justtess
04-07-10, 08:38 PM
Now I'm curious.... are you seeking vision therapy through medical insurance or through the school? The reason I ask is because the state I live in have a contradictory dilema when it comes to vision therapy and learning difficulties. Basically, if there is a medical dx, the school district will not persue treatment or special insturction outside of the regular classroom until a student falls behind grade level (aprox 2 years). On the other hand, medical insurance will not pay for any educational 'therapies' because.... it is not a medical need.


My youngest son has amblyopia where he was refered to a neuro opthamologist when he was around 5-7 yrs old. We had done many of the vision testing you had mentioned above without consistent results (with my son's amblyopia, his vision in one eye constantly changed month to month even with patching) After dealing with the politics of things, I took it upon myself to learn how to teach my son how to recognize symbols and process information visually (with the help of a dyslexia teacher).

I had thought to change the policy in my state regarding other students with amblyopia and has delt with reading difficulties however, the argument has changed over the past few years. Vision therapy is an out of pocket expense where I live with the medical and academic fields debating each other every now and then.

MuscleMama
04-07-10, 09:07 PM
That's a lot, and you are doing so much and are on top of it. It's so great that today we can diagnose these problems more easily and with such precision.

How would the left and right brain mirror image affect him?

"The borderline FMAER shows a poor right sided response in the face of an excellent left sided response. On the assumption that language resides in the usual regions of the left hemisphere, a problem with early cortical (temporal) processing of speech sounds is unlikely. The relatively deficient, although present, right sided response may have other implications as regards subtle auditory processing deficiency or right temporal dysfunction in general."

So if the assumption mentioned above is wrong because the right/left sides are switched, then the test actually does show auditory processing problems.

I should be getting his qEEG results any time now. Hopefully they will be useful.

MuscleMama
04-07-10, 09:24 PM
Wow. That's a lot of information to take in.

Is more intensive OT/PT recommended in addition to the vision therapy?

She seems to incorporate body therapy with the vision work. From her report:

The central strategy of our vision therapy program is:
1. Strengthen visual tracking skill in order to normalize the accuracy of incoming visual information.
2. Strengthen body awareness and laterality (the internal spatial map), directionality concepts and the use of vision to guide motor action.
3. Develop visual processing for improved visual attention, visual discrimination, visual organization and visual thinking.
4. Change cognitive emphasis for auditory (excessive decoding) to visual (word recognition and imagery) dominance.


I have forwarded her report to his school team for their information, for inclusion in his IEP if they do that, and asked his PT and OT for their thoughts. I also forwarded it to our pediatrician and current neurologist and hope to get their feedback.

Also, is there any connection between the physical spinal issues and these reflexes?

I wonder about this myself. It's like everything just didn't quite form and connect up correctly when he was made. :(

MuscleMama
04-07-10, 09:30 PM
Now I'm curious.... are you seeking vision therapy through medical insurance or through the school? The reason I ask is because the state I live in have a contradictory dilema when it comes to vision therapy and learning difficulties. Basically, if there is a medical dx, the school district will not persue treatment or special insturction outside of the regular classroom until a student falls behind grade level (aprox 2 years). On the other hand, medical insurance will not pay for any educational 'therapies' because.... it is not a medical need.


My youngest son has amblyopia where he was refered to a neuro opthamologist when he was around 5-7 yrs old. We had done many of the vision testing you had mentioned above without consistent results (with my son's amblyopia, his vision in one eye constantly changed month to month even with patching) After dealing with the politics of things, I took it upon myself to learn how to teach my son how to recognize symbols and process information visually (with the help of a dyslexia teacher).

I had thought to change the policy in my state regarding other students with amblyopia and has delt with reading difficulties however, the argument has changed over the past few years. Vision therapy is an out of pocket expense where I live with the medical and academic fields debating each other every now and then.

The school will continue to do OT and include more visual stuff, but I'm not sure just what they do compared to what the behavioral optometrist does for vision therapy.

The doctor doesn't even accept any insurance, but will provide a detailed receipt for people to pursue reimbursement. Unfortunately our insurance does not have any out-of-network benefits, if they even cover her services (which I doubt). Working with her will be strictly out-of-pocket (unfortunately).

*KJ*
04-08-10, 09:38 AM
Wow that IS a lot...I think I need some time to proces all that...

My initial question is about insurance...

I'm wondering why you didn't persue this testing in-network...isn't there a developmental Opt @CHOB?

I know it's been some time since I've posted (sorry!) so much has been going on, floods, strep, IEP meetings, etc. etc.

Anyhoo...we are heading back to Dr. Fruity-frozen-treat (LOL!) next month...and some of what you've said is making me want to get DS's vision tested...the school has determined that he does have a visual processing issue...and after reading the details behind a much more comprehensive test...well...

With a bill like that, I'm not sure I could swing that...I check CHOB to see what they have for staffing, but would love to hear how it was that you chose this Dr.

In terms of the the spine/reflexes...you should be able to get a consult from another part of the neuro team regarding that...you are seeing the behavioral team...I would think you'd need a member from the team that focuses on stuff like MS/MD/etc. I'll poke around that dept too and let you know what I find.

*KJ*
04-08-10, 09:54 AM
Ok, I think this (link) basically answers the insurance question...Insurance isn't going to pay for anything unproven.

However...I would imagine that Children's has figured out how to push these services through for reimbursement...generally it means the right type Dr just needs to word things correctly.

http://www.childrenshospital.org/clinicalservices/Site2760/mainpageS2760P0.html

I'm going to neurology now...

*KJ*
04-08-10, 10:06 AM
I think this is the team you'd want a consult from.

http://specialists.childrenshospital.org/directory/list.asp?shellid=400&service=8076&view=program&setsize=5

You have Dr D, right? I'd simply ask him to consult with them (which he may do automatically but I'd want to make sure it's happening) or if you could set up a consultation.

Did I tell you about our short scare with LKS? Look that one up one day...talk about scary! Anyway, we were seeing Dr. Frozen-fruity-desert and he proposed the LKS-varient dx...but couldn't really answer much of my questions...I insisted on a visit with the resident expert...Dr. R (who also happens to be the national expert...woohoo!) That guy was the best. At first I just wanted Dr. S to talk directly to him and figure it out...but that's not how he wanted to do it...anyhoo, Dr. R sat with me until ALL my questions were resolved...it was well worth it!

At your next follow-up I would ask Dr. D if your sons reflex and spine issues could be related. If he can't confidently answer it, I'd just come right out and ask him if there is someone on the neuro team that could help answer it. And go from there.

Good luck with all of this! You ARE doing a great job!

Sit-n-Spin
04-08-10, 03:17 PM
Now I'm curious.... are you seeking vision therapy through medical insurance or through the school? The reason I ask is because the state I live in have a contradictory dilema when it comes to vision therapy and learning difficulties. Basically, if there is a medical dx, the school district will not persue treatment or special insturction outside of the regular classroom until a student falls behind grade level (aprox 2 years). On the other hand, medical insurance will not pay for any educational 'therapies' because.... it is not a medical need.


My youngest son has amblyopia where he was refered to a neuro opthamologist when he was around 5-7 yrs old. We had done many of the vision testing you had mentioned above without consistent results (with my son's amblyopia, his vision in one eye constantly changed month to month even with patching) After dealing with the politics of things, I took it upon myself to learn how to teach my son how to recognize symbols and process information visually (with the help of a dyslexia teacher).

I had thought to change the policy in my state regarding other students with amblyopia and has delt with reading difficulties however, the argument has changed over the past few years. Vision therapy is an out of pocket expense where I live with the medical and academic fields debating each other every now and then.

I understand why they have to wait until a child falls behind, but boy is it a shame for the children who do really need help.

MuscleMama, have you applied for Medicaid for your son? I used to be a caseworker years ago. There were several categories of Medicaid, including something called Three Months Prior. When someone applied we'd check their income for those months with the bills from those months. So, basically if your income was $5,000 a month, but you had $6,000 in medical bills then you'd be responsible for the first $5,000 and Medicaid would cover the rest. That's the general idea. I don't know what it's like now, but just illustrating the point that some people who might not otherwise qualify for assistance actually can in certain cases so it's worth it to find out.

MuscleMama
04-08-10, 03:23 PM
KJ, thank you!!! I didn't realize Children's had any sort of vision therapy dept and will definitely follow up on that. I found the behavioral optometrist that did the eval thru a link I found on this forum last year for covd.org. She does seem to be extremely well-educated and professional. From her site:

Dr. Cathy D. Stern OD, FCOVD received her Doctor of Optometry degree from the Pennsylvania College of Optometry in 1980. She is a developmental and behavioral optometrist with specialized training in learning-related vision problems, vision rehabilitation, computer vision syndrome and sports vision strength training.

She has extensive experience working with children and adults with learning problems, add/adhd, non-verbal learning disability, cerebral palsy, autism and the multiply challenged. She also is involved with vision rehabilitation following head trauma and stroke. Dr. Stern has presented workshops and seminars for physicians, teachers, psychologists, occupational, physical, speech therapists and other professionals who work with special populations.

She is a Fellow in the College of Optometrists in Vision Development (FCOVD) and the College of Syntonic Optometry (FCSO). She is also trained in Neuro-Optometric Rehabilitation. Dr. Stern is State Director of the College of Optometrists in Vision Development, Vice President of the College of Syntonic Optometry and Massachusetts Keyperson for the American Optometric Association Sports Vision Section. The Massachusetts Society of Optometrists recently recognized her as a leader in vision therapy.

Dr. Stern maintains a private practice in Canton, MA limited to the diagnosis of developmental and behavioral vision problems and treatment of children and adults with vision therapy and vision rehabilitation.


Regarding the tethered cord team, the first doctor listed (Dr. P) is the neurosurgeon we are working with.

We are switching from Dr. C to Dr. Urion who comes highly regarded and specializes in behavioral neurology and learning disabilities. I'm hoping he becomes our 'go-to guy' and can take the lead on all these different pieces of the puzzle. I'm guessing he must have thoughts about the primitive reflex integration stuff and can't wait to hear them.

Thanks again, I appreciate the help! :)

MuscleMama
04-08-10, 03:39 PM
I understand why they have to wait until a child falls behind, but boy is it a shame for the children who do really need help.

MuscleMama, have you applied for Medicaid for your son? I used to be a caseworker years ago. There were several categories of Medicaid, including something called Three Months Prior. When someone applied we'd check their income for those months with the bills from those months. So, basically if your income was $5,000 a month, but you had $6,000 in medical bills then you'd be responsible for the first $5,000 and Medicaid would cover the rest. That's the general idea. I don't know what it's like now, but just illustrating the point that some people who might not otherwise qualify for assistance actually can in certain cases so it's worth it to find out.

Thanks, I'll keep this in mind :)

Sit-n-Spin
04-08-10, 03:49 PM
I've said to anyone who hesitates because of the stigma: It is your money, remember!

*KJ*
04-09-10, 08:51 AM
Ok, after processing, just a couple rouge thoughts...

Have they discussed anticonvulsants at all?

What are your next steps, any idea?

When do you see Dr. U? We've never seen him, but we've heard amazing things about him...all I can say is that his team is top-notch, he's gotta be doing something right to get all those great people on his team! Definately ask him about the reflex/spinal cord issues...or even the MRI/EEG results along with some of his coordination issues.

I wonder if it is determined that his motor function is a factor of neuro "issues" if any sort of therapy would be recommended...it would certainly be medical at that point...I know we've never been turned down for any therapy a neuro referred us to! Talk to Dr. U about this...particularly in terms of the vision therapy...it may be the case that he can provide the same services! He may even be able to put you intouch with a Dr @CHOB, where neuro/optho can coordinate...

Lots & lots going on...but it does sound as though you are gathering the pieces...I'll be crossing everything that these Drs help you put it all together to support your son in the best way possible!!!!

:)

MuscleMama
04-09-10, 04:11 PM
Ok, after processing, just a couple rouge thoughts...

Have they discussed anticonvulsants at all?
No, his EEG report said "there was no evidence to suggest an active seizure disorder."

What are your next steps, any idea?

I forwarded the vision report to the school, peditatrician & neurologist and am waiting for replies. I am also waiting for qEEG/spectral analysis results from Children's and speech/language testing results from the school. Also expect to hear back from the neurosurgeon about the urodynamic testing to see if he thinks surgery is needed (I'm guessing no).

When do you see Dr. U? We've never seen him, but we've heard amazing things about him...all I can say is that his team is top-notch, he's gotta be doing something right to get all those great people on his team! Definately ask him about the reflex/spinal cord issues...or even the MRI/EEG results along with some of his coordination issues.

We see him June 22. Really hoping he's as great as I've heard.

I wonder if it is determined that his motor function is a factor of neuro "issues" if any sort of therapy would be recommended...it would certainly be medical at that point...I know we've never been turned down for any therapy a neuro referred us to! Talk to Dr. U about this...particularly in terms of the vision therapy...it may be the case that he can provide the same services! He may even be able to put you intouch with a Dr @CHOB, where neuro/optho can coordinate...

Good point. I will definitely look into this. These therapy bills are tough! :(

Lots & lots going on...but it does sound as though you are gathering the pieces...I'll be crossing everything that these Drs help you put it all together to support your son in the best way possible!!!!

:)

Thank you so much!

MuscleMama
04-09-10, 04:47 PM
Retained Neonatal Reflexes
Learning difficulties, behavioural problems, poor coordination and developmental delay may be the result of retained neonatal reflexes.

What are Neonatal Reflexes?
In the womb and in the early months of life the higher centres of our central nervous system are not fully developed. During this time we are protected and assisted by involuntary (neonatal) reflexes, controlled by the lower centres of our brain.

At birth, a baby has minimal control over voluntary movement. Reflexes provide stereotyped, predictable reactions to certain stimuli in the early weeks but are soon transformed into more advanced motor skills. Early reflexes also provide training for many aspects of later functioning. There are reflexes for the development of muscle tone, the avoidance of noxious stimuli, postural disturbances, as well as reflexes that aid in the birthing process. They are designed to help us survive in the early stages of life, and they serve as platforms from which to develop smooth, controlled, voluntary movement.

As higher centres begin to mature enough for conscious control of activity, the involuntary, uncontrollable reflexes are integrated into higher centre control.

Examples of Neonatal Reflexes:
There are in excess of 27 known primitive reflexes. The following reflexes are a selection of those more commonly associated with learning, coordination and balance problems when they are not properly controlled by the central nervous system. For more information on each reflex, click on the associated link.

Neonatal Reflexes include:

·Fear Paralysis Reflex (http://www.activehc.com.au/RNR_fear_paralysis.asp)

·Moro Reflex (http://www.activehc.com.au/RNR_moro_reflex.asp)

·Juvenile Suck Reflex (http://www.activehc.com.au/RNR_Juvenile_Suck_Reflex.asp)

·Rooting Reflex (http://www.activehc.com.au/RNR_Rooting_Reflex.asp)

·Palmar/Plantar Reflex (http://www.activehc.com.au/RNR_Palmar_Reflex.asp)

·Palmomental and Plantomental Reflexes (http://www.activehc.com.au/RNR_PMR.asp)

·Asymmetrical Tonic Neck Reflex (http://www.activehc.com.au/RNR_ATNR.asp)

·Tonic Labyrinthine Reflex (http://www.activehc.com.au/RNR_TNR.asp)

·Spinal Galant (http://www.activehc.com.au/RNR_Spinal_Galant.asp)

·Symmetrical Tonic Neck Reflex (http://www.activehc.com.au/RNR_STNR.asp)

What Happens when Neonatal Reflexes are Retained?

The neonatal or primitive reflexes should be fully present at birth, as they guide early development, and are gradually integrated during the first 6 to 12 months of life. Primitive reflexes ideally begin to function in a particular order and are integrated in a specific sequence. If they are retained out of sequence, they disturb the development and integration of subsequent reflexes. If they are retained beyond their normal age of integration they can disturb some or all of the functions of higher centres, which includes behaviour, learning, integration of gross or fine movements, sensory perception, hand-eye coordination, structural problems and more. These learning difficulties and behavioural dysfunctions may persist to adulthood.

Current research suggests that trauma of some kind, anywhere between conception and the early months of life, may be the cause of retained primitive reflexes. There may also be familial or hereditary factors. Trauma may be physical, chemical, emotional or hormonal; although the main trauma appears to be that experienced during birth, including caesarean section and any form of induced delivery. It is also possible for reflexes that were integrated appropriately during early life, to be regained later due to trauma.

Signs & Symptoms of Retained Neonatal Reflexes:
Below is a list of the more common signs and symptoms of retained neonatal reflexes. Not all of these will be present in every case, as each primitive reflex has associated signs and symptoms. For more information about the specific effects of particular reflexes, see the links above, under “Examples of Neonatal Reflexes”

General signs and symptoms:


Dyslexia or learning difficulties
Reversals of letters/numbers and midline problems
Poor written expression & handwriting
Poor posture and/or awkward gait
Poor spatial awareness
Poor hand-eye co-ordination, poor visual function/processing skills
Difficulty learning how to swim/ride a bike
Poor gross and fine motor skills, balance problems, poor sequencing skills
Clumsiness/accident prone
Slow at copying tasks & processing information
Dyspraxia/Speech problems and language delays
Motion sickness
Bedwetting past 5 years of age
Depression, anxiety or stress
Behavioural, self-esteem and motivational problems
Quick temper/easily frustrated/short fuse
Attention and concentration problems, hyperactivity, fidgeting
Easily distracted and/or impulsive
Confusion between right and left
Hypersensitivity to sound, light, or touch
Poor sense of time, poor organizational skills

What can be done to integrate Retained Neonatal Reflexes?
The good news for children or adults who have learning difficulties or behavioural issues is that retained neonatal reflexes can be integrated. This means that the higher brain centres can be prompted to bring the neonatal reflexes under cortical control, allowing complex skills, movements and behaviours to develop properly.


Gentle alterations to the function and movement of the spine, skull, and peripheral skeleton encourage the body to integrate the reflexes that have been inappropriately retained. In some cases all of the primitive reflexes will have been retained, while in other cases there may be only one, or some present. The corrections assist people of all ages, from babies and children, to adults. As these physical blocks to development are removed, patients may notice improvements in learning, behaviour, coordination, mood and anxiety levels, hormonal imbalance, chronic structural conditions, and more.

MuscleMama
04-09-10, 04:48 PM
Moro Reflex
The Moro reflex begins to function 9-12 weeks after conception and is normally fully developed at birth. It is the baby's alarm reflex.

The newborn's higher centres have not yet developed enough to make a rational decision about whether a circumstance is threatening or not. It is protected by an involuntary reflex, with one set of physical and hormonal events which cover for most eventualities.

The reflex is set off by excessive information in any of the baby's senses. For example, a loud noise, bright light, sudden rough touch, sudden stimulation of the balance mechanism such as dropping or tilting. It is the earliest form of adrenal “fight or flight response”. This response prepares for fighting or running and if not integrated leads to hyperactivity.

As the fight or flight adrenalin response may be inappropriately turned on many times a day and is on standby most of the time, there is a constant demand on the adrenal glands which may become fatigued. These glands are very important for the immune system, and constant activation can lead to adrenal fatigue and therefore asthma, allergies and chronic illness.

If the Moro reflex persists beyond three to six months of age it becomes an automatic therefore uncontrollable overreaction, overriding the newly acquired higher centre decision making. The child/ adult may be hypersensitive to any of the senses which turn the reflex on (e.g. light, sound, touch or any stress) and so may withdraw from situations, have difficulty in socialising, accepting or giving affection, and have difficulty with new or stimulating experiences which the normal child would find exciting.

Because the reflex stimulates fight or flight responses, these responses may happen inappropriately from anything in the person's environment. Fight or flight responses prepare the body for fighting or for running, so the child (or adult) may be an aggressive, over reactive, highly excitable person, unable to turn off and relax. These responses are for pure survival, for highly focused fighting or running, not for being perceptive, sensitive or noting the subtleties of circumstances, thus the person may have difficulty functioning socially (which includes the schoolroom, playground, workplace etc.). The child (or adult) may be very difficult to understand, they may be loving, perceptive and imaginative but at the same time immature, over reactive and aggressive.

Retained Moro Reflex may lead to:


Hypersensitivity to sudden noise, light or movement
Difficulty with new or stimulating experiences
Impulsive behaviour
Distractibility– has to pay attention to everything
Anxiety, particularly anticipation anxiety
Emotional and social immaturity
Sensitivity to foods or food additives
Inappropriate behaviour
Hyperactivity
Adrenal fatigue, leading to allergy, asthma or chronic illness
With a retained Moro reflex, the child may never have fully experienced the discovery phase of development, the "terrible twos". As the Moro integrates after treatment, the child (or teenager or adult) has the opportunity to pass through this important developmental phase. "Terrible twos" may not appear appropriate in later years, but it is important that this phase of development runs its course. Emotional ups and downs are common for a short period as the nervous system and hormonal system readjust, before the benefits of correction become apparent.


------------------------------------------------------------------------------------------------------------------------------------------------------
The Moro Reflex


The Moro reflex acts as a baby’s primitive fight/flight reaction. It should be inhibited by approximately four months of post-natal life to be replaced by an adult ‘startle’ reflex. If it persists in the older child, it can be associated with:

Hypersensitivity
Hyper-reactivity
Poor impulse control
Stimulus bound effect – cannot ignore peripheral stimuli to focus attention on one thing – has to pay attention to everything
Sensory overload
Anxiety – particularly anticipation anxiety
Labile emotions
Emotional and social immaturity

MuscleMama
04-09-10, 05:02 PM
Tonic Labyrinthine Reflex

The TLR begins about 12 weeks after conception. It is elicited by bending the neck forwards (flexion) or tilting it backwards (extension). It involves the vestibular system (sense of balance and position in space) and vestibular interaction with other senses. When the neck is tilted backward the limbs straighten, when the neck is bent forward the limbs bend. The reflex should be fully developed in both positions from birth, and has done its job by the end of the first year of life.

Retained flexion without extension TLR may produce the "floppy" child, while retained extension without flexion TLR, may result in a rigid, awkward person with stiff or jerky movements.

If the TLR is not integrated at the correct time it will constantly disturb the balance sense in its actions, and in its interaction with other sensory systems. Head-Righting reflexes may not develop fully. If head control is lacking, eye functioning will also be impaired. The vestibular system and hearing are very closely related, thus hearing may also be affected.

The child who still has a retained TLR when starting to walk cannot acquire true standing and walking security and may experience difficulty in judging space, distance, depth and speed.

Retained Tonic Labyrinthine Reflex can be associated with:


A “floppy” child
Poor balance
Motion sickness
Orientation and spatial difficulties
Visual problems
Difficulty judging space, distance, depth and speed
Poor concentration
Fatigue while reading or when working or studying at a desk
Bad posture when working over a desk
Difficulty coordinating movement
Sports performance below capability
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Tonic Labyrinthine Reflex

Inhibition of the tonic labyrinthine reflex is a gradual process involving the maturation of other systems. It should be completed by three and a half years of age. If it persists beyond this time, it is sometimes associated with:

Postural problems, specifically hyper- or hypo-tonus (muscle tone)
Tendency to walk on the toes
Poor balance
Motion sickness
Orientation and spatial difficulties
Oculo-motor problems – affecting reading
Visual-perceptual problems – affecting reading and writing
Dislike of Physical Education (PE)

MuscleMama
04-09-10, 05:12 PM
Primitive & Postural Reflexes

As the infant brain develops during the first year of life connections to higher centres in the brain become stronger and increasingly take over the functions of primitive reflexes. As this occurs, early survival patterns are inhibited or controlled to allow more mature patterns of response (postural reflexes) to develop in their place.

The postural reflexes support control of balance, posture and movement in a gravity based environment. Postural reflex development is mirrored in the infant’s increasing ability to control its body, posture and movements.

Some children fail to gain this control fully in the first year of life and continue to grow up in a reflexive ‘no man’s land’, where traces of the primitive reflexes remain present and the postural reflexes do not develop fully. These children continue to experience difficulty with control of movement affecting coordination, balance, fine motor skills, motor development and associated aspects of learning such as reading, writing and physical education.

Retained primitive reflexes can also affect a child’s sensory perceptions, causing hypersensitivity in some areas and hyposensitivity in others.

MuscleMama
04-09-10, 05:14 PM
I hope nobody minds me copying and pasting this info I'm finding. I see A LOT of these issues in my son. Why have I never heard about this before?

JenE
04-09-10, 06:58 PM
WOW! Tons of info! Thanks for sharing it!

Sit-n-Spin
04-16-10, 11:38 AM
This is very interesting. Keep posting. My son had problems with balance. Still does a little. He would not even swing until he was almost three years old. And he'd just stand at the top of the play equipment. I thought he was just enjoying it until they told me he probably was feeling out of balance and could not come down. I was so afraid for him to play on the playground at preschool for the first year!

MuscleMama
04-16-10, 05:44 PM
Trying to decide if I should just wait until our 6/22 appt with the new neurologist to get his thoughts and suggestions before trying anything new or should we start with the vision therapy in the meantime. It probably makes sense to wait, but I don't like it.

Still waiting for the qEEG/Beam test results - they have seriously screwed this up so badly that it's a joke at this point. :mad:

Waiting on the school speech/language testing, should be done soon.

Here was the current neurologists thoughts on vision therapy:

Actually, your timing is good. There has been an ongoing debate regarding vision therapy on the child neurology listserv (about a thousand neurologists from all over the world are on the listserv, which posts daily). Some of the older curmudgeons have posted negative comments (referring members to the “quackwatch” website where it is apparently discussed). More recently however some other contributors have posted comments that are more favorable and that consider it to be a legitimate form of therapy when done properly and with a solid scientific evidence base. I would imagine that if the ophthalmology department here at Children’s Hospital has a center for vision therapy, it is more like the latter (that is, scientific and evidence-based). Plus, I would also imagine that any program here at Children’s would take your insurance. So it may well be worth pursuing.

You certainly could look into these other options and then discuss it with Dr. Urion when you do see him.




Feeling a little frustrated and adrift at this point...

Justtess
04-17-10, 09:43 AM
When I thought of vision therapy for my younger son, that was about 7 years ago. The highly recomended office would not take insurance but they will provide all the information for you to file.

About 2 years ago, I had asked an ophtamologist professor on a university open forum(?) (specific time where profesionals will discuss a topic) why vision therapy seemed difficult for parents to obtain either through insurance or through the school. I got two interesting replies... one from a member of the ophtamology association where he suggested parents ban together to change the laws in my state. Another opthamologist said vision therapy is contraversial. They fix the sight (my question refered to amblyopia) the school fixes the reading ability through regular classroom instruction. IF reading didn't improve, it was an educational issue. ... did not mention dyslexia but I had a hunch that is what they meant.

Recognizing dyslexia in my state is also very vague. It's left to each school district to determine what it is and how they will address it. I've seen a large variety of definitions and instructional programs in my area to address dyslexia which is difficult to get for a student anyway.... usually until they fall behind 2 years from their peers. Vision therapy IM unprofessional O, seemed a lot like the types of exercises a dyslexia class uses.

MuscleMama
04-29-10, 09:18 AM
I talked to the DO (developmental optometrist) last week and we decided to start a reflex integration program while I wait for the June appt w/ the new neurologist. She did say she didn't expect the neurologist to know much about retained reflexes or vision therapy, but she had no problem with me wanting to get his input.

We met with her Tuesday and she copied some worksheets and explanations of a few exercises for him to start and went over them with us. We will do the exercises at home 3-4 times a day (about 10 minutes each time) and meet with her again in a month. I understood the program and had no trouble following along.

The thing is, when she made the copies for me, I saw her come back into the room with a spiral bound book she copied from. It was a quick glance, but I swear the cover looked very similar to the books on this site:

www.visual-dynamix.com/category_s/50.htm (http://www.visual-dynamix.com/category_s/50.htm)

I was checking out this site a few days ago and recognized the circle within a square design, although it wasn't exactly the same. You can buy their "Primitive Reflex Training Program" for $90 on the site. The DO charged me $225 for the one hour appt and wants to see us again in a month (another $225).

So I don't quite know what to do. Do I just stick with her since she knows and has evaluated my son, will closely monitor his progress and I may want to continue working with her over the summer for vision therapy -or- do I buy the program, continue the reflex integration work on my own (which I feel confident I can do) and risk an awkward encounter with the DO, jepardizing the chance of working with her down the road? Plus I still don't know if I can find vision therapy thru Children's hospital that will be less expensive and/or may be covered by insurance.

All that aside, we did the first session this morning and while it was difficult for him, he did try hard. From all the research I have been doing into retained reflexes, I really think this is going to be a very helpful therapy for him.

LynneC
04-29-10, 09:55 AM
That web site is interesting. It does say that they have a version available for professionals, so maybe that's why it didn't look exactly the same to you.

I am wondering if it would benefit my son also (he'll be 8 in June). He still touches stuff all the time (in the dr's office for his ADHD eval, standing on the exam table and touching the ceiling- the texture intrigued him) This apparently is a symtpom of immature visual learning, which can be a factor in impulsiveness.

What were the exercises like, Musclemama?

Ms. Mango
04-29-10, 09:14 PM
I haven't checked out the link yet but I will.

When ds was younger he was speech delayed. I joined an online group for parents of speech delayed children. Parents (and an ST or two) passed along therapy techniques. I had no problem implementing these techniques on my own.

We were fortunate that our insurance paid for 30 sessions/year, so I decided to find an ST to work with ds too. She did exactly what I did--for one hour/week. I worked with him every other waking minute.

So was it worth it? Yes. I thought we'd stop after our 30 sessions but wound up paying out of pocket at the end of the year. What I found out was that, for the most part, I did fine on my own, but fixing the few things she pointed out that I was doing wrong (or didn't do as well as I could have) was instrumental in ds making the rapid progress that he did. I never would have picked up on those things from what I read on the website. The ST fine tuned my approach in a way that would not have been possible without observing me.

The DO does charge a lot. But you will get the opportunity to watch her work. You can have her critique what you're doing. As you go along you will probably have some general questions and also some specific to working with your son. Use her expertise to make the therapy time you spend with your son more productive.

Being your son's therapist is a thankless job. Therapy for a child that age should be fun, but I saw the ST push ds, for brief periods of time, in ways I was not able (or willing) to. Ds enjoyed playing with the ST, but he always left her office totally wiped out.

If you go back for another session or two and don't feel you're getting anything out of it then yeah, go it alone.

MuscleMama
04-29-10, 11:57 PM
That web site is interesting. It does say that they have a version available for professionals, so maybe that's why it didn't look exactly the same to you.

I am wondering if it would benefit my son also (he'll be 8 in June). He still touches stuff all the time (in the dr's office for his ADHD eval, standing on the exam table and touching the ceiling- the texture intrigued him) This apparently is a symtpom of immature visual learning, which can be a factor in impulsiveness.

What were the exercises like, Musclemama?

I think you're right about her having the professional version. She mentioned that her friend put the book together (the pics were the authors brother) and I wouldn't be surprised if she knows Dr Mowbry who runs that site - both drs have impressive credentials.

The more I read about retained primitive reflexes the more I think this is a significant issue for MANY kids! I don't understand why nobody has heard of this or why my boys haven't been tested for this in the course of their PT and OT with the schools. There is a strong link between the reflexes and adhd, along with many learning/developmental issues.

The first exercises we start with are 'duck' and 'pigeon'.

Duck - stand up straight, turn toes out with heels touching, hold a stick in both hands (hands shoulder-width apart, palms down) level with chest, elbows slightly bent. Walk about 15' forward keeping the heels close together and stick level. Then the same walking backward.

Pigeon - same but toes are pointed in, hands are palm up

We will progress by replacing the stick with 2 smaller sticks, one in each hand. Then nothing in hands (make fist, point thumbs in/out).

MuscleMama
04-30-10, 12:08 AM
Ms Mango - good points, thx! I do think she can definitely bring value to the process.

I was surprised tonight when we showed DS1 what DS2 was doing and he tried it. He showed some retention, too! When doing 'duck' arms twist so that inner elbows face forward and when doing 'pigeon' elbows raise up and forearms hang down (like a scarecrow). This is for the moro reflex.

I also sent an email to the vision therapy contact at Children's hospital trying to find out more info.

I decided to buy the at-home program and ordered it online tonight. At the very least I can evaluate and treat DS1 with it. At best I can find vision therapy covered by insurance and treat both boys with the at-home program.

Ms. Mango
05-01-10, 04:43 PM
While the site looks interesting I am a little put off by the implication that your problems will be solved if you go through this training. Ds won't be throwing out his meds any time soon however a little symptom relief would be great.

I think the training would be beneficial; after looking around the web there appears to be (very little but some) empiracal data that show retained reflexes can account for some behavioral issues found in ADHD kids and others with LDs. In particular there is some interesting work being done by Sally Goddard Blythe (I'd love to check one of her books out of the library, unfortunately they don't have any of them).

It looks like several disciplines-OT, PT and DO-work on these types of deficit areas. I contacted a PT on Friday and will take ds in for an evaluation in a few weeks. But I may also cough up the dough for at least one of Blythe's books and perhaps this program as well.

MuscleMama
05-01-10, 04:55 PM
I agree that nobody will be 'cured' by this, but it does seem to contribute to a lot of issues (in my younger son especially). From what I've read once the reflexes are integrated then those problems are no longer there. It seems like such a foundation that things are built on that missing it must really make a big difference for those kids with retained reflexes.

I also read a lot of interesting things about Sally Goddard's books, but my library doesn't have them either. One review said that while she provides a lot of good information, she doesn't really give any sort of therapy or ways to address the issues in her books. They want you to work with the INPP directly for that.

My son's in school OT told me yesterday she recently trained in "Astronaut Training" and started it with my son. It specifically targets the vestibular system which ties into the reflexes and auditory and vision (all my son's issues). She offered to train me in it so I can do it over the summer with him. A quick google last night shows some good info on it.

I called 'patient relations' at Children's on Thursday and told them the ordeal I am having getting this particular test report. I have been waiting since February and have been given such a run-around it's ridiculous. I'm so frustrated.

Dizfriz
05-01-10, 05:08 PM
While the site looks interesting I am a little put off by the implication that your problems will be solved if you go through this training. Ds won't be throwing out his meds any time soon however a little symptom relief would be great.

I think the training would be beneficial; after looking around the web there appears to be (very little but some) empiracal data that show retained reflexes can account for some behavioral issues found in ADHD kids and others with LDs. In particular there is some interesting work being done by Sally Goddard Blythe (I'd love to check one of her books out of the library, unfortunately they don't have any of them).

It looks like several disciplines-OT, PT and DO-work on these types of deficit areas. I contacted a PT on Friday and will take ds in for an evaluation in a few weeks. But I may also cough up the dough for at least one of Blythe's books and perhaps this program as well.

Ask for an interlibrary loan. Most libraries participate in this but often it must be requested (insisted on?) as it involves some effort on the library's part.


Dizfriz

Ms. Mango
05-01-10, 05:12 PM
I took a quick look at the Astronaut Training website but I'm going outside to enjoy the rest of this fantastic day.

I'll have to come back to this after the sun goes down!

Ms. Mango
05-01-10, 05:15 PM
Ask for an interlibrary loan. Most libraries participate in this but often it must be requested (insisted on?) as it involves some effort on the library's part.


Dizfriz

Thanks Dizfriz!

Here in the Boston area we are part of the Minuteman network that comprises over 40 libraries--including some colleges--and not one has any of her books. I'm surprised! Have you read any of her work?

Ok--I'm really going outside now. Have a great rest of the day everyone!

MuscleMama
05-01-10, 08:53 PM
Here in the Boston area we are part of the Minuteman network that comprises over 40 libraries--including some colleges--and not one has any of her books. I'm surprised! Have you read any of her work?

I'm in a different library system (Old Colony Library Network) and none of the libraries have any of her books either.

MuscleMama
05-01-10, 10:34 PM
Astronaut Training: A Sound Activated Vestibular-Visual Protocol

Vestibular enhancement has always been central to sensory integration practice. However, the importance of administering precise vestibular input that is integrated with specific sound and vision input is only beginning to be acknowledged. This workshop will expand the therapist’s skills via enhanced understanding of the developmental and neurological processes of the Vestibular-Auditory-Visual Triad. Understanding how these three systems work together with the body’s senses creates a foundation for achieving competency in applying specific intervention strategies, including Astronaut Training: A Sound Activated Vestibular-Visual Protocol.

Astronaut Training provides precise input to all five vestibular receptors, along with auditory and visual input to create a comprehensive treatment protocol that integrates these three sensory systems. Core activities provide opportunities for an adaptive response to sensory input, which completes the sensorimotor neurological circuits underlying all function.

MuscleMama
05-03-10, 10:43 AM
I got a response from Children's Hospital about vision therapy:

Regarding vision therapy, we do have that facility at Childrens but limited when compared to what is done outside. I am assuming you saw an OD - specializing in developmental optometry and vision therapy in the community.

I do limited vision therapy and specifically look into visual effciency and visual information processing but the exercises I do are limited to the eyes. The plus side is insurance covers the visit as long as we have the right diagnostic code - if you have a copay you will need to pay that.

I do a visual effciency exam first which looks into specifically eye focusing, eye teaming and eye tracking skills. This is the first level in visual information processing. The next step would be to see how the brain analysis the information - which looks into more specific visual processing like visual memory, visual closure, spatial and tempral infromation processing. I do see many patients refered from our OT department who have visual motor and visual processing issues.

I also do home based vision therapy where as in the community they do more office based vision therapy.

http://www.childrenshospital.org/clinicalservices/Site2760/mainpageS2760P0.html (http://www.childrenshospital.org/clinicalservices/Site2760/mainpageS2760P0.html) gives you more information on what I do.

I would be happy to see your son for an evaluation. Let me know if you have any questions.


So I need to think this over. I could have him evaluated there and if he qualifies (I think he would) then he could be treated there for very little money. From the website:

Q. What can I expect from vision therapy services? AR: Vision therapy includes both in-office and home-based exercises. After a problem is identified, a series of exercises will be designed specifically for the individual to improve visual function. A typical program will comprise approximately 6 one-hour sessions of vision therapy scheduled at 3 week intervals. At each in-office session, the patient will be provided with instructions and materials for the exercises that should be practiced at home for about 20-30 minutes per day at least 5 days per week. The final office session is a progress evaluation that assesses the progress made during therapy. At that time it will be determined if more exercises are required.

So that would be 6 visits with a $20 copay and about 18 weeks for treatment (mostly at home). $120 for 4-5 months vs. $5K for 6 months (but with weekly visits).

Along with this I could do the reflex integration work and astronaut training on my own. I think these would target his greatest needs right now, but would like to get the new neurologists thoughts, too.

I think I'll set up an eval appt with the Children's vision therapy dept and decide after that, but I'm leaning towards it already considering the money. Input/thoughts welcome :)

*KJ*
05-03-10, 12:20 PM
I think it is definately worth checking into.

I would trust what this person tells you too.

I would ask him/her what her thoughts are on any additional benefits to supplementing what she does with what the OD can provide.

I would think that once you've exhausted her service options, there really is no loss to her whether you go to any additional services elsewhere, right?

And agree, the neuro should be able to offer some opinion too.

Good luck!

PS...we'll be in to see Dr. S next monday.

KJ

MuscleMama
05-06-10, 10:28 AM
I'm going to schedule the vision eval appt with Children's and see what they think and have to offer. I may bring DS1 for an eval there, too, since he has some issues with visual memory and visual motor integration. We have focused on neurofeedback for him, but that will be ending soon and since they take insurance, maybe it would be worthwhile. We'll see...

Last night my son told me they gave him a heavy vest and big belt to wear in school yesterday and he wore it all day. He said he liked it and wondered if we could get one. I emailed his OT last night to find out more and here is her response:

"Yesterday I gave him a weighted vest and a deep pressure belt to wear in class. The asst teacher came to me with concerns regarding his attention and arousal level in class yesterday. He seemed to be moving his body rapidly and in a repetitive motion. The tools I gave him give his body propprioceptive input and work to decrease his arousal level and increase his attention to task. When we meet I can go over it more with you. Glad to hear he liked it!"

I'm glad the school cares and is trying to help him, but I can't help but feel sad that my son is struggling like this in school. I don't see this stuff at home. :(

MuscleMama
05-14-10, 08:07 AM
Quick update. I received the primitive reflex integration program I ordered online from Visual Dynamix and it IS the same info the OD copied for me. It's very well done if anyone is looking for this type of program.

Yesterday I received an email coupon for 25% off anything on their site, but am not supposed to post the link here on the site. If anyone is interested, just PM me and I'll give you the coupon code. :)


DS2 has a vision eval appt next Friday with Children's. The expensive OD hasn't called me yet to schedule the next appt so I feel relieved, but am still trying to figure out how I will tell her I want to hold off working with her without alienating her. I may want to work with her down the road depending on how things go.

STILL waiting for Children's to give me the results of the BEAM test from February! I contacted Patient Relations who told me after a week and a half that the new neurologist (who we see for the 1st time on 6/22) is going to call me about it. That doesn't really make sense to me and I haven't heard from him yet. Seriously WTF people! :mad:

My son has been very clingy to me lately. It's cute because he's my youngest and I know these days of sitting on my lap and cuddling are coming to an end, but he's going to be 6 tomorrow and it's immature. I'm pretty sure it's a stress reaction because of his difficulties in school, but he doesn't actually complain about school or balk at going (thankfully!) He has been wearing the weighted vest when sitting at the table and seems to like it. I hope so much that these different therapies will really help him and 'cure' some of these neurological problems. I hope when he starts 1st grade in the Fall that he's much improved.

LynneC
05-14-10, 10:45 AM
Keep us posted, please!

I see the same thing re the clinginess with my 7 year old, when he's stressed. I try to be especially affectionate and physical (hugs, etc) with him when he's like this. I have to remind myself to do this sometimes because I'm not a naturally physically affectionate person.

MuscleMama
05-14-10, 11:00 AM
Haha, I'm a massage therapist so I'm very "touchy" with my kids. :)

MuscleMama
05-23-10, 12:11 AM
We had the vision eval at Children's Hospital in Waltham on Friday. The Dr was wonderful, I really liked her. Her eval was about 90 min (compared to 3 hrs with the other OD). She didn't touch on the primitive reflexes at all, but she did seem very thorough and picked up on the same things as the other OD and the school. She gave me a bunch of handouts to do with him, a few each day that work on tracking and we'll see her again in early July. She has some computer stuff we'll probably be ready for at that point which is more visual processing.

The astronaut training is good, we started doing it twice a day, along with the reflex stuff. Adding in the vision stuff is going to make it quite a bit of stuff we do each day, but so far he is compliant and I'm hopeful it will help him a lot.

My older son also seems to need a lot of these things. He has asked to do the astronaut training which surprised me and I can see that some parts are hard for him. I also want to copy the vision handouts and do them with him, too.

So we're actively working on 1) astronaut training 2) primitive reflex integration 3) vision therapy for both boys. I'm curious what the new neurologist will think about these therapies and if he will suggest anything different.

Kids Think
06-04-10, 07:07 PM
MuscleMama,

It's great seeing such an involved parent, doing everything to benefit your children.

Whether all these intervention programs and exercises cure whatever neurological anomaly your children are experiencing, is a difficult question to tackle. What is important though is that he has therapists that are trying different things with him.

The astronaut training system, which works on vestibular and visual integration, has shown to be effective with children who have attention issues, visual issues, and coordination issues among other deficits.

Have you looked into the possibility of them having any sensory issues that might be addressed?

MuscleMama
06-07-10, 01:39 PM
MuscleMama,

It's great seeing such an involved parent, doing everything to benefit your children.

Whether all these intervention programs and exercises cure whatever neurological anomaly your children are experiencing, is a difficult question to tackle. What is important though is that he has therapists that are trying different things with him.

The astronaut training system, which works on vestibular and visual integration, has shown to be effective with children who have attention issues, visual issues, and coordination issues among other deficits.

Have you looked into the possibility of them having any sensory issues that might be addressed?

Thank you :) Do you have any direct experience with the astronaut training? I'm hoping to get trained in the next level of the exercises in the next week or two so we can do it over the summer.

I think there may be some mild sensory issues. He got scratched by a cat this weekend and absolutely freaked out. He really hated seeing the scratch on his leg (it was just a minor surface scratch) and just couldn't get past it. Only lately has he let me touch his feet without wiggling away. Hopefully the new neurologist will help determine if this is an issue.

BTW I follow you on Facebook and think your site is great!

MuscleMama
06-07-10, 01:48 PM
Quick update. I sent a scathing letter to the head of patient relations at Children's Hospital last week. I have been going back and forth between doctors, techs and even patient relations trying to get the test results for the BEAM my son had done on Feb 4th. I had all the emails and supporting info. I calmly stated the facts and showed the supporting info. It was 4 pages long! :eek:

The next day she contacted me and told me that the report would definitely be there when we meet with the new neurologist on June 22nd. She said she spoke to the heads of depts almost up to the president :D

I normally do not do anything like that, but it was ridiculous! I just hope the new Dr doesn't think I'm nutjob and it starts out on a bad foot.

On a side note, last night it was bugging me (although I didn't show it) that my son was eating an ice cream sandwich and it was dripping and he couldn't understand how to lick around the edges to keep it under control. Shouldn't that just come naturally? How do you teach that? It sounds stupid, I know, it just struck me like WTF :confused: It's just part of his issues, but sometimes the things he can't do just seem so odd and disappointing.

Justtess
06-07-10, 07:08 PM
On a side note, last night it was bugging me (although I didn't show it) that my son was eating an ice cream sandwich and it was dripping and he couldn't understand how to lick around the edges to keep it under control. Shouldn't that just come naturally? How do you teach that? It sounds stupid, I know, it just struck me like WTF :confused: It's just part of his issues, but sometimes the things he can't do just seem so odd and disappointing

I had the same thoughts when my dx son's 4th grade teacher told me she had asked him to clean up the table where he dropped a few ice cubes. She gave him a wash cloth and .... well... he sort of moved the ice around trying to clean it up and made an even bigger puddle to clean up.

I forgot the proper term for it but it has to do with 'poor coordination'.

LynneC
06-07-10, 07:38 PM
On a side note, last night it was bugging me (although I didn't show it) that my son was eating an ice cream sandwich and it was dripping and he couldn't understand how to lick around the edges to keep it under control. Shouldn't that just come naturally? How do you teach that? It sounds stupid, I know, it just struck me like WTF :confused: It's just part of his issues, but sometimes the things he can't do just seem so odd and disappointing.
I admire your restraint. I've actually RIPPED the icecream cone out of my son's hand and licked the sides and yelled "See, this is how you eat an ice cream cone!" Not one of my better parenting moments, perhaps.

I wonder if it's the distractability factor? You kind of expect that sort of thing when they are 3 or 4, but mine is going on 8 and still can't eat one without needing a hose-down afterward. It's like he forgets he has it in his hand.

MuscleMama
06-07-10, 08:59 PM
I see I'm not alone LOL :D

Kids Think
06-08-10, 03:12 PM
Thank you :) Do you have any direct experience with the astronaut training? I'm hoping to get trained in the next level of the exercises in the next week or two so we can do it over the summer.

I think there may be some mild sensory issues. He got scratched by a cat this weekend and absolutely freaked out. He really hated seeing the scratch on his leg (it was just a minor surface scratch) and just couldn't get past it. Only lately has he let me touch his feet without wiggling away. Hopefully the new neurologist will help determine if this is an issue.

BTW I follow you on Facebook and think your site is great!

I don't have formal training in the astronaut training program, but I do have colleagues who have told me nice things about it,

Please keep us all informed about the results and proceedings. I'll definitely take a closer look at it.

Thanks for the kind words regarding my site (http://kidsatthought.com/), and please let me know if you want any specific topic covered.

Kids Think
06-08-10, 03:18 PM
I had the same thoughts when my dx son's 4th grade teacher told me she had asked him to clean up the table where he dropped a few ice cubes. She gave him a wash cloth and .... well... he sort of moved the ice around trying to clean it up and made an even bigger puddle to clean up.

I forgot the proper term for it but it has to do with 'poor coordination'.

You are both right. I see a lot of children with ADHD who have problems with coordination and appear to be clumsy etc.

According to a research study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2850122/pdf/nihms174623.pdf) published in the journal Child and Adolescent Mental Health in 2009, there is an undertreatment of motor problems in children with ADHD.

As if bearing the social and emotional consequences of living with ADHD isn’t enough, a large percentage of these children (40-50%) also have Developmental Coordination Disorder (DCD).


I just wrote and published an article titled "There Is No Need to Cry over Spilled Milk, But We Can Stop the Flow" (http://kidsatthought.com/2010/06/06/there-is-no-need-to-cry-over-spilled-milk-but-we-can-stop-the-flow/)about the mentioned research study and its implications for us as parents, teachers, and professionals.



Please print it out and read it and show it to your child's teachers and/or physician.

I am in the process of writing a follow up article on a proven simple 4-step approach to help children with their clumsiness.


I hope this helps a bit.

MuscleMama
06-23-10, 10:04 AM
We had the appt with the new neurologist yesterday. It went well and he seems like a good guy. He didn't really offer any new info or explanations and basically said to keep doing the therapies and he'll see him again in Nov after a couple of months of first grade to see how he's doing.

He and the therapists all say that swimming is one of the best things for my son. I have him signed up for 2 weeks of swimming lessons in July, but am going to try to do more, too.

We had a final meeting with the school and he has been moved from a 504 plan to an IEP. The speech/language testing didn't show much unusual so he won't be receiving that, but he will continue with OT and PT twice a week. He also has several classroom accomodations, mostly to help with his visual processing and anxiety issues. I hope he gets a teacher that is a good fit for him, it will make a big difference I'm sure.

I was trained in the rest of the astronaut training and made an astronaut board (with a sit n' spin as the base) for home. Now to get into a structured routine for everything...