View Full Version : Frustrated to tears-almost ready to throw meds out and homeschool!


moonshyne
11-13-15, 11:57 PM
Hello everyone,

I am a 40 year old mother to an amazing little 7 year old boy diagnosed with ADHD, I also have an 8 year old daughter identified as having Aspergers and a 3 year old son who has no issues..or they just haven't had time yet to slap a label on him =P I apologize now for the length of this,,it's my first post and I feel so frustrated, scared and overwhelmed that I need to vent and hopefully gain some clarity on our situation.

My son was a bundle of (crazy)energy from the day he was born..he came just a year after my daughter was born (God has a funny sense of humor, I thought I was unable to conceive) I was pretty much shellshocked with his arrival..my baby girl at the time was a happy, content baby that rarely ever cried..contrast this to this little guy who screamed the walls off for eight months straight from newborn on. Colic was the official diagnoses. He began to show aggression as early as three. The preschool program began warning me he was showing a lot of aggression. I chalked it up to just being a very spirited boy and thought they were over exaggerating the seriousness of it. I was wrong.

The first day of kindergarten came and i'll never forget the teacher came to me and said is he always so hyper. I said no, at home he wasn't hyper..mouthy yes, strong willed - check but not hyper. Well maybe he's got first day jitters. Long story short he became more and more aggressive and uncontrollable. For some reason he displays very aggressive behavior at school that I don't see from him at home. Fast forward a year, not even out of kindergarten they wanted me to put him into fresh start-a program with a low student teacher ratio that was aimed to get him back on track. Given that I'd endured a million phone calls home about his bad behavior and had to pick him up umpteen times from school I relented and agreed. Little did I know at the time it would be the start of him being bounced around from school to school, they'd say oh that programs shutting down and send him to another one.

The final straw came this year for me. I'd gone along with these people telling me what was best for my kid, apparently what's best is bouncing him around with no regard that this has greatly impacted him. he went from making friends to not even trying to make friends since he believes he will lose them anyways when he is moved yet again. Also, the program they shut down last year? well at the beginning of the year I was assured he'd be able to stay until grade 6. Then they shut the program down and I found out in May that he would have to change schools AGAIN! I was furious and so upset. The worst part? They shut the program down that was good, had experienced teachers who'd run it for years and opened a new program with totally inexperienced teachers! iT'S CRAZY!

All of this has impacted my son greatly. His behavior is worse then ever before at school. He is acting out bigtime and doing/saying things at school I could never, ever even imagine. He's physically attacking the staff (he's never hit me in his life and does not physically attack his siblings either) he's saying really horrible things at school (I want to cut your head off and watch you die) outrageous stuff I never hear at home. I'm at a loss for why he turns from being yes, a difficult kid at home to what they describe as practically the devil at school. And their methods are very questionable. Isolating him. Letting him stay inside at recess (he no longer wants to go out and play with the other kids) yet at home I will say come on Johnny lets go out and when he resists I just say well I cannot leave you here alone so lets go and he will--even if it's grudgingly. Once out he has FUN and enjoys himself. They, on the other hand, simply let him stay in when he says he wants to and when I ask why they say they are afraid pushing him to go out will cause a violent outburst. I'm floored, this is not the kid I know.

I am shocked at how different he is at home to at school. I have zero faith in this program at this school. They are inexperienced and my son is essentially a guinea pig for them. I had no idea he was being isolated until I found out by chance..they have one teacher take him and work alone ALL DAY BY HIMSELF in a separate room. This seems crazy to me..how is he to learn to interact properly in a regular class (that is the goal..to have him integrate back into a regular class) by being isolated like that?

Then there is the medication. I never ever wanted to start it but they put a lot of pressure on me to do it so I tried, I've gone along with all their crud and I regret it immensely. My son already had an increase from 18 mg to 27mg concerta in September and once I went back to the dr yesterday to discuss Johnnys worsening behavior at school and his solution was to once again up his dose to 36mg concerta AND add in intuniv. I am at my wits end. I was there with all three kids for this appt and it was mayhem. In between trying to convey my concerns the kids were sick and acting up and I kept having to constantly address them..I felt rushed and only once I was driving I thought..I really don't want to drug him up like this..another increase already?? AND a new drug I have no idea about. This FEELS WRONG. The doctor gave me no info on this drug except it could help his behavior..vague to be sure!

Then i get on the internet and a half hour later I am bawling after googling this med and somehow ending up on youtube videos about kids who have died on ADHD meds. Now I am terrified to even continue the medication he is on let alone do this increase AND add in intuniv! When we first started the meds I was really worried, he seemed way too calm, pale and circles under his eyes. It affected his appetite and sleep. That has leveled off and he does look better now since switching from biphentin to concerta BUT his behavior has gotten extreme at school and he does not want to go and play anymore unless I literally make him go out. I hate this. I already wonder if the concerta is making him worse and yet the doctor increases it? I am losing all faith in both the doctor and the school system. I am going to seek out a second opinion for my son and already have a referral I am waiting for to get him therapy..find out why he is so angry inside. But I admit I am not sure what doctor I can or should trust if any...seems to me the majority are quick to medicate. My sons pediatrician who I thought was ok does nothing but prescribe..no tests, no nothing. Does this seem right? I am at my wits end and am afraid that these meds, the crazy school system that bounces my kid from school to school with no regard for how this has impacted him yet are the first to start talking about "day treatment" :eek: which I instantly said no way! I lost my patience with the principal and told her I will sooner home school my kid then stick him in some government run institution. I'm sorry this has been so long, I'm fed up, scared and confused on what is the best thing for my son. Any advice or feedback would be appreciated.

dvdnvwls
11-14-15, 02:42 AM
I can only speak for myself, but if I was your son I would be really wishing for more effective medication. ADHD is not his choice. He can only work with what he's got, and with medication he would have a much better chance of being able to cope.

If he had a heart problem, you would not be trying to keep him off of heart medication. ADHD is a real problem for him, and by withholding appropriate medication you're taking away his ability to cope. Don't listen to the scare stories. This is very hard to say, but... please do what's best for your son instead of what makes you feel good.

aeon
11-14-15, 03:03 AM
Welcome to the Forums. :)

The first step should be a thorough evaluation by a pediatric psychiatrist or other medical professional with a primary focus on child development.

Next, please get your information on medications from places that provide citations and references...because they will go by the science, and approach any discussion from a rational, clinical viewpoint.

I’ve seen a couple of those YouTube videos about ADHD meds and children dying...and not a single one provided any causative evidence. Those people are seeking to sow the seeds of fear, ignorance, and doubt. And some are good at that!

My sense is your doctor is using the process called titration. This is a good thing. It is the best way to determine if a medication is effective (or not) and suitable. And if it is both those things, your son will be taking the lowest dosage possible.

His new med, Intuniv, is an extended-release formulation of guanfacine.

My sense is that the doctor, so far, is making some good choices. And he seems to also understand the potentials of a dual med approach—each addresses some things the other does not.

Medication for ADHD is the first-line treatment for a reason. Medication works well for most people, and the stimulant medications have been studied and used for decades, and have demonstrated an excellent safety profile in clinical practice. When a doctor goes to medication first, it is a clinically-informed and rational decision that is focused on the well-being of the patient.

I wasn’t diagnosed ADHD and medicated until I was 41 years old. I am 46 now. I only wish I could have been medicated as a child.

I hear you when you say this feels wrong, and I am sorry to hear this is causing you distress. I will suggest this: learn about your son’s disorder, and learn about the meds. With that knowledge, fear about those things will be eliminated.

I absolutely value you getting a second opinion. As I mentioned above, if possible, seek out a medical professional with a primary focus on child development.

I know you want the best thing for your son. By learning about your son’s disorder and how it is treated, I think you will be in the best position to judge what that is, and see that he gets it.


Well Wishes,
Ian

Polymorphed
11-14-15, 08:38 PM
Intuniv/Guanfacine helps relax the nervous system and lower it from what you could call adrenalin-overdrive. Dosage should be started very low and titrated upwards slowly too. Common symptoms of it starting to become too relaxed are:

Xerostomia (dry mouth)
Somnolence (sleepiness)
Fatigue
Dizziness
Headache
Constipation
Abdominal pain

Just keep your eye on any of these symptoms and it may be an indication that the dose needs backing off slightly. Intuniv should help with anxiety behaviors and hyperactivity. Often stimulant medications used to treat ADHD can worsen anxiety and in children it will sometimes manifest as a perpetuation of hyperactivity. Intuniv is commonly used to treat ADHD in conjunction with a stimulant primarily to help minimise the adrenalin activating effects of the stimulant in order to achieve a better balance between anxiety and sedation. Basically if Concerta can cause too much stimulation, Intuniv can cause too much sedation, but when used together properly, they can help fine tune a therapeutic response.

Things will rarely go wrong if doses are introduced very low to begin with and increases are carefully monitored symptomatically by the parents and Dr and pathologically by the physician.

Concerta and other stimulants have been used to treat ADHD in children for decades. If the risk of death were high enough to warrant concern, the Government would jump at the opportunity to remove these category 8 (same as cocaine, heroin, meth etc.) drugs from the medical system. It is good of you to be cautious and be concerned about the use of drugs in treating your child, but don't allow hysteria to affect your judgement. The quality of life without medication vs being on an effective regime is immeasurable, really. Once the balance is achieved, you will all be so relieved and able to relax and actually enjoy everything again.

ccom5100
11-17-15, 12:53 AM
My grandson takes Tenex (a short-acting version of intuniv) and concerta. I find that they work well together and cancel out the side effects of each other. I would suggest you try the Intuniv, but not up his dosage of concerta yet. Adding Intuniv may be enough. I would also suggest you look into food sensitivities, especially avoid foods that contain artificial colors and artificial flavors. My grandson is 16 and we have been following the Feingold diet since he was 3 1/2 and was kicked out of several daycares for the types of behaviors your son's school is reporting. Because we elminate those harmful chemicals from his diet, he needs a lower dose of meds than most kids his age.

sarahsweets
11-17-15, 04:36 AM
First of all I want to tell you, you are not a bad mother or a failure. I know we can take on a lot as moms and we can think our kids' issues somehow are a reflection of our parenting skills. I urge you to ready my sticky in the childrens' diagnosis section. I would link it but I am on my tablet and its s sucky one so its a PITA. I also urge you to look into your rights as a parent of a (possibly) special needs child. Here we have IEP's and we also have PRISE ( parental rights in special education) you can google info but using the terms 'wrights law'. I know the laws are different in Canada but it could give you aa general idea. Again, I dont know how it works there but here, we have people who are child advocates. I hired one once when I was new to the school system and special needs issues. She had inside knowledge of how the school system worked, and how to demand the best most appropriate help for my son. I only needed her for the ones school year because I educated myself and was able to advocate for him after that.

The lack of consistency with your son's school environment is horrible! Any other child would have issues with this,especially a child with a disorder. Regarding meds: Concerta isnt the only one out there and some kids just dont do well on mehtylphenidate types of meds. Some kids do betther on amphetamines. Do not let youtube dictate how you treat your son. People like those in the videos always have an agenda and lack the science to back it up. You must always consider the source and the science when making medication decisions.

acdc01
11-17-15, 06:11 AM
I have a slightly different opinion I guess than most here. I don't like to medicate unless I'm sure it's necessary when it comes to kids. And I'm not just talking about ADHD meds, I'm talking about any type of long term medication.

I don't actually have kids but my niece already seems ADHD to me. I think she'll be like me . She probably will still excel at school even with ADHD and no meds. And I had friends when young, I think she'll actually do better than me in the friends department as she seems much more social than I am. So in her case, I don't think I would medicate her as a kid. She will do fine when young without them and it won't hurt her growth to live without the medications.

In your sons case, you've tried so many different schools already. I think it's a matter of luck now in terms of whether you'll find a school that works well with him. And luck doesn't seem to have been on your side so far.

So to me, for you it's either home school or medication. Can you even afford home schooling or a tutor? If the answer is no, then I only see the medication option.

If you can afford it, if you home school, will your child still grow up to be socially stunted? I'm assuming he has difficulties making friends right now and that even if he has friends, he has difficulties associating well with them.

If his ADHD is interfering with his social development, I don't think home schooling will solve that problem. My dislike for long-term medications is great enough that I would home school if I thought I could afford to home school, could teach my son well, and if he could still develop his social skills well.

I suspect your son may not develop socially normal if he doesn't have meds though. In which case I think of my coworkers friend. Her son grew up to have comorbid mental illnesses and an addiction. Untreated ADHD, lots of failures and difficulties in childhood, can lead to insecurities and mental health issues as an adult. If there was a risk in my son developing properly without meds, I would give them to him.

There really isn't any proof at all that ADHD meds are more harmful than any other type of long-term medication. So if I evaluated my options and see that meds are required, then I personally would medicate my son and see it as the same as giving him any other type of long-term medication for any other illness.

aeon
11-17-15, 03:25 PM
I don't like to medicate unless I'm sure it's necessary when it comes to kids. And I'm not just talking about ADHD meds, I'm talking about any type of long term medication.

I agree with this 100%. That is why I think evaluation by a medical professional with a primary focus on child development is so necessary.

And thatís not just someone with experience in child development...it is someone who has primary focus on child development.

Any child who might be thought to have a disorder needs a thorough evaluation and differential diagnosis in order to rule things out and narrow the range of potentials.

I value the use of medication in treatment of children with the neurodevelopmental disorder we call ADHD. But for sure, there had better have been a rigorous evaluation before arriving at that diagnosis. Also, I would absolutely want screening for any cardiac abnormalities before beginning medication. And I would want any parent to keep a journal of observations, written down day by day to note the effectiveness (or not) of a medication.

Even with all that, I could not make the choice to medicate a child with any kind of ease.

But if the diagnosis was correct, it would come down to evaluating both risks and likely outcomes to see which choice would have the least risk and a likely better outcome.

If I had a child with ADHD, I would choose to medicate them, but I would only arrive at that choice after a lot of due diligence.

And even then, I would still question my judgement.


Cheers,
Ian

Lunacie
11-17-15, 04:15 PM
I agree with this 100%. That is why I think evaluation by a medical professional with a primary focus on child development is so necessary.

And thatís not just someone with experience in child development...it is someone who has primary focus on child development.

Any child who might be thought to have a disorder needs a thorough evaluation and differential diagnosis in order to rule things out and narrow the range of potentials.

I value the use of medication in treatment of children with the neurodevelopmental disorder we call ADHD. But for sure, there had better have been a rigorous evaluation before arriving at that diagnosis. Also, I would absolutely want screening for any cardiac abnormalities before beginning medication. And I would want any parent to keep a journal of observations, written down day by day to note the effectiveness (or not) of a medication.

Even with all that, I could not make the choice to medicate a child with any kind of ease.

But if the diagnosis was correct, it would come down to evaluating both risks and likely outcomes to see which choice would have the least risk and a likely better outcome.

If I had a child with ADHD, I would choose to medicate them, but I would only arrive at that choice after a lot of due diligence.

And even then, I would still question my judgement.


Cheers,
Ian

We certainly considered everything before starting my granddaughter on meds.

Including the fact that the side effects of not treating adhd can be as horrible as any side effects from meds.

CanadianDad
11-18-15, 03:15 PM
Welcome fellow Canadian parent :)

You didn't clarify how your little guy got diagnosed. Was it by the Family Doctor, Pediatrician or Psychologist/Psychiatrist? In Canada, getting a Psychologist/Psychiatrist involved is usually not covered and would have to be paid out of pocket (or employee family benefits). A school board would bring one in, but honestly, they will not give too much time for any individual case.

Since your guy is already in a diverted program, I'm thinking he probably already has an IEP. Though any benifits of that would be completely negated by being tossed around so much.

If you can afford it, you may want to look into getting a private, complete Psychological/Psychoeducational Assessment. A good one will involve around 5-8 hours of testing of the child (done over many weeks), along with interviews of parents and forms for teachers to fill out. You'd probably be looking in the $3000 - $5000 range. Some benefits packages will cover some or all of it. It's expensive, but gives you a HUGE stick when going up against Ontario Schoolboard Bureaucracy. We had our guy go through one in 1st grade, and when complete had a meeting with the school VP, Special Ed teacher, his teacher and our Psychologist. It took a whole lot of the guessing out of the equation and it's very hard for the school to argue they know best when the Psychologist is sitting right there.

Having said that, our guys issues are not similar to yours. Ours is the opposite in that he's quiet, introverted, anxious, inattentive and does not easily make friends.

Now the meds stuff....... Our guy is on Byphentin, going on about 8 months now. It works for the inattentive stuff, though he does have the common sleep and appetite side effects. He also has some increased Anxiety, and we very briefly switched to Vyvanse to see if that would be better, but VERY quickly realized it had the opposite effect, and went back to Byphentin.

I know medicating a kid is heartbreaking, and my wife and I cried the first time we gave him his meds (not in front of him of course). I'm a big believer on trusting the experts. Once you find a Reputable doctor you trust, go with their recommendation. As a previous commentor said, these are real issues, and medication is a proven positive intervention technique for treatment. Patients will react differently to different medication, but a trusted doctor should not steer you wrong.

Also, stay away from Google. Go to trusted, scientific sources for information. It's a rabbit hole of misinformation and lies out there, trying to scare you and sell you snake oil. I cannot overemphasize this. Also be prepared for those who will question every decision you make from now on about how you raise your son. Meds, no-meds, therapies, discipline, parenting techniques....... all will come into question from those around you. Tell them all to get lost. Find a good circle of reputable doctors, school officials, friends/family who will have your back, and screw the rest.

Stay strong, and keep us updated.

dvdnvwls
11-19-15, 01:37 AM
It's a rabbit hole of misinformation and lies out there, trying to scare you and sell you snake oil. I cannot overemphasize this. Also be prepared for those who will question every decision you make from now on about how you raise your son. Meds, no-meds, therapies, discipline, parenting techniques....... all will come into question from those around you. Tell them all to get lost. Find a good circle of reputable doctors, school officials, friends/family who will have your back, and screw the rest.
I agree. And yet it's difficult, too, because of the potential for a parent to falsely believe that they have found a good circle of reputable doctors when in fact they've found the other kind. And then the "screw the rest" advice comes in and the parent is inadvertently blocking the child's progress by unknowingly taking that child to irresponsible doctors. So... there's no one piece of advice that will always serve well. It's necessary to keep eyes open and mind engaged, and that is easier said than done.

Especially for a parent who probably has ADHD; and if your child has ADHD then it's very likely that you do too.

Polymorphed
11-19-15, 07:16 AM
I have a slightly different opinion I guess than most here. I don't like to medicate unless I'm sure it's necessary when it comes to kids. And I'm not just talking about ADHD meds, I'm talking about any type of long term medication.

I don't actually have kids but my niece already seems ADHD to me. I think she'll be like me . She probably will still excel at school even with ADHD and no meds. And I had friends when young, I think she'll actually do better than me in the friends department as she seems much more social than I am. So in her case, I don't think I would medicate her as a kid. She will do fine when young without them and it won't hurt her growth to live without the medications.

In your sons case, you've tried so many different schools already. I think it's a matter of luck now in terms of whether you'll find a school that works well with him. And luck doesn't seem to have been on your side so far.

So to me, for you it's either home school or medication. Can you even afford home schooling or a tutor? If the answer is no, then I only see the medication option.

If you can afford it, if you home school, will your child still grow up to be socially stunted? I'm assuming he has difficulties making friends right now and that even if he has friends, he has difficulties associating well with them.

If his ADHD is interfering with his social development, I don't think home schooling will solve that problem. My dislike for long-term medications is great enough that I would home school if I thought I could afford to home school, could teach my son well, and if he could still develop his social skills well.

I suspect your son may not develop socially normal if he doesn't have meds though. In which case I think of my coworkers friend. Her son grew up to have comorbid mental illnesses and an addiction. Untreated ADHD, lots of failures and difficulties in childhood, can lead to insecurities and mental health issues as an adult. If there was a risk in my son developing properly without meds, I would give them to him.

There really isn't any proof at all that ADHD meds are more harmful than any other type of long-term medication. So if I evaluated my options and see that meds are required, then I personally would medicate my son and see it as the same as giving him any other type of long-term medication for any other illness.

I definitely think the OP and indeed most parents who arrive here at addforums are turning to stimulant medications after having carefully weighed up all the pros and cons (and usually they are rather burnt out from trying everything else already).

In fact, the main motivation for my obsessive biomedical research is, as a father, to do the best I can for my children. They are both under 5 and exhibit severe symptoms of ADHD-Combined types and the oldest has (in my assessment) dual SPD-Sensory over-responsivity subtype. Many think he has autism, but his clinical psychologist and I arrived at the same conclusions regarding ADHD-C/SPD-O.

Point being, I haven't got long before the hard decision myself. How long do you leave it/put it off? How burnt out does everyone have to get? How many elimination diets, behavioral charts/strategies, parenting seminars/counselling groups does one try before considering stimulant medication?

Kids are naturally sympathetically dominant (in a higher state of 'fight or flight' mode), which they balance with an egoistic perspective, a lot of emotional outlet and 12 hours sleep (if you're lucky!). Being hyperactive and inattentive and having social/behavioral issues doesn't have the biggest impact on learning and development on preschool children. Their physiology allows them to be this way without it leading to 'failure to thrive' as it can from teenage years onwards.

But you know its a time bomb. You see their impulsivity and inattention denying them valuable lessons and their dysfunctional brain reward cascade causing them emotional conflict/distress. Their short term memory function/recall is already causing them frustration and the youngest one (whose vocabulary is amazing for his age) will often get lost after a few words and just improvise the flow of the conversation right off the planet like Chinese whispers. I can see this being a bigger problem over time! This is all assuming they don't kill themselves during one of their naughty adventures - or kill one another. Inattention plus hyperactivity = dangerous.

Any parent of an ADHD-C child knows that as soon as there is silence, RUN. They've either just escaped the house or are executing some mischievous or dangerous plan. You can never let your guard down, or it will be THAT instant that the kids hurt themselves or get up to something that some pre-parenthood people seem to believe requires hours of neglect/lack of supervision. (Not directed at anyone in particular).

With all this said, whatever choice you make - so long as you take ALL of your family's health and well being in to consideration (especially your own - as their caregiver and role-model), you will have no reason to regret it and plenty of support here too.

CanadianDad
11-19-15, 04:16 PM
I agree. And yet it's difficult, too, because of the potential for a parent to falsely believe that they have found a good circle of reputable doctors when in fact they've found the other kind. And then the "screw the rest" advice comes in and the parent is inadvertently blocking the child's progress by unknowingly taking that child to irresponsible doctors. So... there's no one piece of advice that will always serve well. It's necessary to keep eyes open and mind engaged, and that is easier said than done.

Especially for a parent who probably has ADHD; and if your child has ADHD then it's very likely that you do too.

Good points. I've been lucky in finding what I consider good doctors and supportive friends.

We were, of course, hesitant to medicate, but I think research is clear that for most, medication is an important part of a treatment plan. For sure, it's no magic pullet, and has to be supported by parenting techniques and diet/exercise. I think the red flag for me would be a doctor who thinks there is no part for medication or that medication is the only thing needed.

Just before my son was diagnosed, a co-worker new to my group approached me and told me he was ADHD, and explained some behaviours I might see in him and not to take them as personal or professional slights. With my son being diagnosed, he has been a great source of support and information. Not surprisingly, due to his age, he was diagnosed only in adulthood but suffered in school due to lack of help. When, in turn, his son was diagnosed, he swore that he would not let his son go through the hard times he had.

momto2js
12-13-15, 03:25 PM
I am answering mostly the Homeschool suggestion in your title. I did pull my oldest out of our public school, because by the time I picked him up at the end of the day, his executive functioning skills were totally exhausted and he was an explosive mess. I thought maybe if he were home with less demands and less distractions, it would be OK.

Well it took about 2 weeks for me to realize that in order for him to do any academic work, he would need some chemical help. Although he was home there was still work to do and he just couldn't get it done.

It has happened again with my youngest and we are working on getting him chemically stable too. For him, he is unable to be still enough to read anything with more than 5 words on the page. It is completely frustrating for both of us.

My point is, that homeschooling will not eliminate the need for some pharmaceutical help. It does provide more flexibility. It is an option. But only one part of the total package.