View Full Version : Socially failing, with a dark future...


Rhoellan
10-22-09, 07:14 PM
Hello, I am new to the forums. I am not new to ADD or ADHD though, as I was diagnosed and treated as a child (I am 38 now). I have 4 kids and my eldest, who I will refer to as "Rhoellan" was a premie and is now 11.

I have talked to doctors, read books, lived the existence and yet I (we, my wife and I) don't think anything has really helped. Rhoellan is very small for his age, weighing 68lbs in 5th grade. His 6 year old brother weighs 60, and has a similar body structure. While on medication, since 4, he will not eat. Eating is bothersome to him; a waste of time and he looks gaunt, skin and bones, you get the idea.

But, Rhoellan is brilliant. He would add up large sums of numbers on a calculator for hours at age 4. He would arrange pencils into interesting shapes and his grades have always been excellent. In fact, I went to parent teacher conferences today and was told he reads at a 9th grade, almost 10th grade level, same in math, making him in the top 3% in the country.

But Rhoellan has been odd, like a lot of ADD children. He doesn't get along with his family, doesn't keep friends and his aloof, innocent nature has progressed to one with frustration, anger and overall absurd behavior.

He twirls in restaurants, leaves his classroom when bored, distracts everyone around him, is never wrong and literally has less common sense then his 4 year old sister. He literally will forget to eat, interrupts constantly and gets reprimanded for the same things; daily.

We can live with this, but I doubt that he will be able to. His classmates can't stand him and he is honestly the most socially inept person I have met his age. Trust me, I was bad, but I am still an introvert from the lack of social interaction. I am now in sales, good at it, but go figure.

We lowered his dose of Adderall this fall and it isn't working. He is eating like a horse, but the school is ready to ship him out. He was on Vyvanse (sp) before that and did ok with it, and ate better than with other extended doses. He has also been on Ritalin, Concerta, Adderall and XR and Straterra. All seem to work for school work, but don't help him grow physically or socially. He is more "zombie like" on these medicines with very OCD behavior.

Any suggestions? We don't have the finances, but are considering specialists in the hopes that it is a dosage thing or perhaps he has something else going on.

rd_wnc
10-22-09, 07:33 PM
Has he been tested for other conditions in addition to or instead of ADD?

The math skills, reading level and grades would make me wonder if there is something else at work here.

FrazzleDazzle
10-22-09, 07:48 PM
Yah. The first thing that whhoshed through my mind early in your post was perhaps something on the autism spectum (aspie?). I know a father son pair of aspies. It sounds a little familiar.

Rhoellan
10-22-09, 08:42 PM
Wow, thank you for the quick replies. More or less, I believe he was diagnosed due to symptoms and genetics. Since I was a poster child for ADD, and the medication helped, it fit.

I thought something else might be at work, but I didn't want to "guide" the doctor to a diagnosis. I know nothing of autism, but thought it would be more noticeable. Perhaps I was stereotyping; either way, how do I get him tested? A behavioral specialist? Anything else I can look for?

THANKS SO MUCH AGAIN!

FrazzleDazzle
10-22-09, 09:10 PM
Rhoellan, have you driven over to this section (http://www.addforums.com/forums/forumdisplay.php?f=77) of the forums? You might find some of the stickies at the top helpful. Oh, and a belated welcome to the forums!

Normal Mom
10-22-09, 09:13 PM
I understand I worry that in my quest to teach my Son to be a happy, healthy, functioning adult that I am somehow forcing him to conform or stifle who he really is. But a person has to be able to socailze at least a little to get by in life.

I would also look in Aspergers or something, it seems more is going on than just ADHD.

FrazzleDazzle
10-22-09, 09:15 PM
Oh, a little about my friend's son, who has Asperger's. He graduated with honors from high school just this past June. Brilliant young man. Amazing with numbers. Painfully thin all his life. Did not get along well with his peers and more enjoyed the company of adults. Fixated on one particular thing, like military weaponry, just a bit odd and off kilter socially, also ADHD....

His folks supported him by home schooling him until his later high school years, and getting him into activities where he could shine with his gifts.

Rhoellan
10-22-09, 10:39 PM
Well, I read the stickie and it seems like it could fit him, me, my mom and my grandmother. Kind of crazy to think that this could be affecting him, through genetics and no one else knew either.

My wife wondering if you could have both, which I think you answered and secondly, where or how do you get it diagnosed? Is there even a treatment?

You all have been great, keep any ideas coming, but it seems like this is a better fit, as when he is off the meds, he is ADHD, but socially inept. When he is on the meds, it handles the ADHD, but almost seems to magnify his social issues. And when I talk to him about it, it is like I am speaking a foreign language or he will say he will try and then do it again 5 minutes later...

Lady Lark
10-23-09, 12:18 PM
Autism is a spectrum disorder, so some are more severely effected then others. The "typical" mental image most people get when they think AS isn't the case for everyone. Asperger's is currently listed on the AS, but it too has a spectrum all it's own.

My son has Asperger's, as well as ADHD, as well as being gifted, so I know all too well how crazy and confusion it can make life. What helped us was a combination of medication, and play therapy. The meds to get his brain where it needed to be, and the therapy to teach him what to do. I don't believe we'd have made the progress that we have without both.

I would highly recommend getting a full evaluation done, by someone who has experience with autism. Developmental pediatricians are a good start, IMO.

Vickie
10-23-09, 04:04 PM
Since you have received great responses, I will just leave a little tidbit. My youngest was thin and we could not increase her stimulant to the fully effective dose, so the doc added guanfacine. Guanfacine (Tenex) is a 3rd line ADHD med that works better on hyperactivity and impulsivity and less on attention. It has been made into a long release med by shire, and is now available for ADHD as Intuniv: http://www.intuniv.com/consumer/new-treatment-for-adhd.aspx

This med augmented the stimulant and helped with anxiety to a certain extent, and is worth keeping in mind as you seek answers and the best treatment for your son. Everyone is different and it can take some work to get the optimal treatment for a person.

JustTired
10-23-09, 08:34 PM
Have you checked to see if he has Asperger's syndrom? I'm no scientist but research has found that Autism and ADHD share the same dna markers. I recommend reading ADHD and Me by Blake Taylor. It's a first person's experience with living with ADHD.

As far as the lack of growth I'm right there with you in dealing with my daughter. My daughter is in the 4th grade and is under 50lbs. She will sit at table eating 1st serving of soup for over an hr and half. She is now seeing an endocrinologist. She underwent testing that indicated that she is Calcium & vit D as well as Human Growth Hormone deficient. Endo recommended Periactin (Cyproheptadine generic name). We are waiting to start Hgh treatment cause MRI indicates a microandoma (micro tumor) in left pituitary gland, which could be the reason why she isn't growing.

I hope that some of this is helpful.

canukie
10-23-09, 09:14 PM
Re the weight issue, how about looking into whether your child has celiac disease....and know that some parents of autistic kids have their kids on a gluten free diet....I don't know alot about that connection but I would look into it.

Rhoellan
10-24-09, 10:46 AM
Thank you all, my wife and I have made an appointment for him on Thursday of next week (soonest we could get him in). I am not confident with many of the doctors we have seen, as they seem to look for a treatment, any treatment and never the cure or true diagnosis.

I am going to keep my mouth shut about my agreement with all of you regarding Aspergers. My concern is that they test him and hopefully conclude something, but not through our guidance and suspicions.

Is Aspergers treatable, or simply manageable?

Lastly, regarding his weight, I hope that is addressed. He was a premie, by 5 weeks, weighing in at 4lbs 7oz. I am 6'4", built pretty solidly (read: a little overweight :) and he is the spitting image of me, other than how small he is.

We upped his dose of Adderall yesterday back up to the norm and asked him how it went at school. He said, "much better", rather simply. We asked how so and he said he didn't get in trouble or yelled at. He seemed happy about this, but was quieter and more recluse-like than ever for the rest of the night. He wants to do well, which is why I believe it is either a severe case of ADD and just "him" or something else is at work here.

Lady Lark
10-24-09, 12:30 PM
Treatable, as in is there a cure? Sorry, but no. For now it's something you have for your life, and hopefully as you get older, learn more about it, and generally become more self aware, you can manage it, and how it effects you better. Like a lot of things, early intervention is key.

As for keeping your suspensions to yourself, I would suggest not. Some doctors aren't familiar with everything, and because of that they can miss something that the parents see. A good doc will listen to the parent's but not allow it to influence their decision. It's also a great way to feel out the doc and see how well they really will listen to you.

My son started with a ADHD diagnosis, but after a year we knew there was more to it then that. So, while I'm waiting for my appt, I'm online reading, and I really felt that he probably had Asperger's, or he was bipolar (there's a fam history for that). When we got to his appt, I brought up my conclusions, and was shot down before I could even finish talking (apparently bipolar is the new add :rolleyes: ). We didn't go back to him.

I know it's important to keep an open mind in this, but you know your kid better then any doctor will.

JustTired
10-24-09, 12:32 PM
It wouldn't hurt to ask docs to re-evaluate his growth. They do a simple blood test to see if Hgh is being secreted and a bone age (image) test. These tests are repeated after a year. I struggle to get my daughter to eat too. I have tried Pediasure, Ovaltine, and lastly the Periactin prescription. The Periactin seems to be working. It's an antihistamine that was introduced when Benadryl was. People stopped using it because it was making them gain too much weight. So now it is prescribed for weight gain.

As far as I know Asperger's is managed. If your son is diagnosed with it and is admitted into SPED they can do a behavioral IEP that includes role playing to help him with his social skills. Or just ask the school counselor to work with him on it. Lots of schools have social skills classes that are taught by school counselor.

See if there is a local CHADD support group in your area. That will put you in touch with parents of ADHD which could lead to playdates with other ADHD children. ADHD children in general education environment usually gravitate towards one another and accept each other which helps with their self-esteem. Good luck to you and your family.

MGDAD
10-26-09, 11:59 AM
Nothing wrong with telling the doctor about your suspicions. That wont guide him to the wrong diagnosis, just allow him to have the most information availible.

Also, just because your son is not "typical" does not mean that he will be unhappy in his life. Studies have shown that "eccentrics" are more likely to be happy that any other class of people. They dont care what anyone else thinks, so they do what they need to make themselves happy.

ginniebean
10-26-09, 01:28 PM
Oh no doubt this is causing a lot of frustration and worry. My first thought too was the possibility of Aspbergers. It's something you could look up on the net. There is a high incidence of ADHD co-condition with Aspbergers.

School can be a very difficult place for any kid so when you add in disorder the difficulties can be extreme. I definitely would mention my suspicions to the specialist as the reports of parents are actually necessary. I hope you get the much needed direction you're hoping for.

Please keep us updated, we do care.

ginnie

Rhoellan
10-31-09, 10:30 AM
Thank you all for your input, here is the update. We went on Thursday at 4:00, right when his pill was beginning to wear off. We met (referred to) a ADD specialist/child psychologist who met with Rhoellan and us. He was very pleasant, asked him some very basic questions and some very specific ones.

He excused him and came back and said "WOW!" I don't know how you guys do it. He is a great kid, but in a off the cuff diagnosis, he has severe ADD in certain areas. He is very pleasant, and is the first child I have seen in a long time to jump up when I called. He said that it was great and sad that he was excited to get some help.

I told him about this board and figured he would roll his eyes. I took your advice and told him that the resounding thought was Aspergers. I said based on my own research that I had to agree and could see the symptoms.

To my surprise, he agreed with the assessment. He said he had done a lot of work with Asperger kids and that there were some signs. To my delight, he said that was his impression, nothing more. He promptly referred us to a psycho-therapist to have him tested extensively before he made any diagnosis.

He kept asking me if we heard any thing else that would fit, which gave me the impression that something else in his mind did fit, but he wanted testing to confirm. Anyways, Rhoellan was excited, really liked the doctor and for his own reasons I guess, sees some light at the end of the tunnel.

That was all I was asking for....

Thanks again! I will let you know more when I do.

FrazzleDazzle
10-31-09, 11:14 AM
That's great news, Rhoellan thanks for updating! And for a great fit with the doctor and diagnosis. Sounds like you landed an experienced caring diagnostition for your son. You sound very happy to have some confirmation. Once you have a full diagnosis in hand, you will have even more positive directions you can go in to help him.

MuscleMama
10-31-09, 11:35 AM
Sounds like good news and you're on the right track! :)

Song of Mercy
11-01-09, 11:24 AM
Thank you all for your input, here is the update. We went on Thursday at 4:00, right when his pill was beginning to wear off. We met (referred to) a ADD specialist/child psychologist who met with Rhoellan and us. He was very pleasant, asked him some very basic questions and some very specific ones.

He excused him and came back and said "WOW!" I don't know how you guys do it. He is a great kid, but in a off the cuff diagnosis, he has severe ADD in certain areas. He is very pleasant, and is the first child I have seen in a long time to jump up when I called. He said that it was great and sad that he was excited to get some help.

I told him about this board and figured he would roll his eyes. I took your advice and told him that the resounding thought was Aspergers. I said based on my own research that I had to agree and could see the symptoms.

To my surprise, he agreed with the assessment. He said he had done a lot of work with Asperger kids and that there were some signs. To my delight, he said that was his impression, nothing more. He promptly referred us to a psycho-therapist to have him tested extensively before he made any diagnosis.

He kept asking me if we heard any thing else that would fit, which gave me the impression that something else in his mind did fit, but he wanted testing to confirm. Anyways, Rhoellan was excited, really liked the doctor and for his own reasons I guess, sees some light at the end of the tunnel.

That was all I was asking for....

Thanks again! I will let you know more when I do.


I have to tell you I nearly jumped for joy and I am typing with tears of happiness for you and your family. Yes, there is still a lot of work and learning ahead...but it sounds like you are on the path...:)

Song

zsazsa
11-01-09, 11:35 PM
Get thee to a behavioral/developmental pediatrician or child psychiatrist! Yikes, I'm a teacher with SpecEd experience with kids with dual diagnoses (Exceptional- Behavior with either Gifted/ADHD/OCD/ODD/CD/ASD/PDD/BP) and yes, it sounds like he could well fit somewhere under the ASD spectrum/PDD spectrum. Yes indeedy, ADHD can co-exist with ASD/PDD disorders. Having just ADHD is easy compared the kids who have to learn to work with more than one disorder. I've realized I'm how lucky I am to just be ADHD fter working with these kids.

He needs to have a much more indepth assessment done since it sounds like there is a lot going on with him. Don't worry about seeming to 'lead/guide' the doctors. They don't listen to parents half the time anyway (or at least some of them don't). What you would be doing is giving them as much backgound info as possible so that they could make a more accurate diagnosis much quicker!

It sounds like something else is going on other than just plain jane ADHD. None of us can make the diagnosis from here but what you're saying is making alarm bells go off for me as a teacher. I've always felt a proper diagnosis can only make things better since then you know what you're up against. It's easier to find an answer to a 'problem' when you actually know what the 'real' problem is!

Not trying to scare you but until you have an accurate diagnosis it is hard to work to make things better for him. With those preteen years coming up shortly, it's imperative that things start to get rolling for him. Good luck!

momoftwinsons
11-09-09, 03:32 PM
My son was diagnosed with ADHD and started stimulant medication at the age of 5 years old. He was very small and thin for his age. However he was intelligent and mentally capable and above his age / grade level. He did have problems in daycare and up to 4th grade with behavior problems. Other larger children would pick on him and start fights with him because of his size. Even thought he was smaller he somehow managed to protect himself. Then too when the fight would be seen by a teacher he was the one pounding the other kid. Even though he did not start the fights. He was in trouble frequently. What finally happened in 5th grade was he ended up with a teacher that spent extra time with him after school, helping him keep up with his schoolwork. She was his teacher for both 5th and 6th grade. She also helped him with his behavior. He could do the work but it bored him so much that he just would not want to do it. My son also had an IEP or was classified as Special Ed (not for lack of ability but for his ADHD), since the 1st grade, and still has an IEP in 10th grade.When my son entered puberty he grew within 6 months over half a foot and put on weight. The medication did not interfere with his growth. He is now 16 years old, still on the the stimulant medication and in the 10th grade. He started lifting weights a little over a year ago and now weights 183 lbs, solid, and is almost 6 feet tall. When I see photos of him or remember how small and frail he used to be and the worry I went through about his size... My son started twirling around when he was young. That it developed into an evening routine. Even at 16 years old he puts music on twirls in his bedroom for at least and hour every evening. He never gets dizzy, but it some how helps him relax. After reading about your son it makes me wonder if my son may have another condition. He got the ADHD label at such an early age that none of the many psychiatrists or medical doctors, counselors etc. have looked any further. I know I have concerns about my sons future, in less than 2 years he will be 18 and I don't know if he will be able to live on his own.

IwishIwasslow
11-29-09, 12:39 PM
The math skills, reading level and grades would make me wonder if there is something else at work here. something else is the matter..
a high IQ I used to be the same way Im suffering from a high iq 134 as a child i was the same way I believe he needs a different environment more stimulating more learning once that part of his brain gets tired out he may be more interested in the "other" parts of his school day ie lunch recess other people...