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Parenting special kids


Ansamcw

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We had our team meeting this morning. It went quite well. I am glad that I insisted on including the Board of Ed advocate, because she always, always, always manages to get them to take things seriously. Where the resource teacher was trying to say that my son didn't need any further evaluation, the advocate used her pull to put a request in for a psych eval this year. She thinks it would be wise to be sure there are no underlying LD's present before we get him off to community college. I totally agree with her (because I think that there are) and I would be thrilled if they could finally put a name to them. Anyways, 3 of the 4 subject teachers attended, which was better than last year. Of course, the one who I really was hoping to talk to didn't - isn't that always the way? But I have requested a time slot in next week's "meet the teacher" evening instead. Heh, I'm nothing if not determined.

So now we wait and see if the teachers will follow through on their promises - communication with home for all assignments, breaking large projects down into smaller projects with multiple due dates, etc. Here's hoping!

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Awww, thanks for asking. :F_05BL17blowkiss: Nothing much has happened yet, though. He says that the resource teacher is getting me a big package of stuff together and will fax it to me. Probably all the past assignments that he hasn't completed so far this year. :cry4:

In other news, I took him to an endocrinologist last week, too. I don't suppose anyone has had any experience in that regard? He's 16 but looks about 11, no signs of puberty yet. Since he's been on meds (Concerta and Zoloft) for about 4 years, I'm a bit concerned that they could be delaying things. So they are running a bunch of tests.

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luckiest, my oldest DGS is 16 and has been on Ritilin since he was diagnosed ADD at age 5. He decided when he went to HS that he didn't want to be treated special anymore. Ended up flunking a couple of courses and had to go to summer school. Same thing last year. He did really well in summer school actually cause the class was 3 hours each day and they couldn't work on anything but their classwork. He is very smart, just can't organize to save his soul and forgets homework assignments, etc. Good kid, tho, thank goodness.

Unfortunately, his mom is also ADD and does next to nothing to help him. She does occasionally talk to a teacher.

He has just started getting zits, so I think puberty is finally coming. He is 6ft and skinnier than Clay was on AI2. Weighs 125 on a good day. He eats like a horse, but only in the evenings when the Ritalin has worn off.

I am helping to teach him how to drive... now that is a real challenge. He focuses straight ahead and doesn't remember to look to the sides and back. And, with our traffic here (SoCal - Orange County) that is scary. Plus, he plays guitar and sometimes gets lost in the music. He is now listening to classical in the car so he doesn't start composing guitar riffs while driving.

I am so concerned with his future. What kind of career can he go into that will accomodate his problems with disorganization and forgetfulness. I know of two successful ADD people... the owner of JetBlue and the boss of a friend of mine. He does great, but she has to take care of reminding him all the time of what he has to do for his job all day long. Sigh!

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I can sure see some similarities. My son would love nothing better than to not be treated "special" anymore and to flunk out. I guess it's his meddling mom that gets in the way of that notion. He's never failed a course (his IQ is higher than mine) and he's not about to start now. This kid is going to graduate grade 12 if it is the death of me. LOL. But if it were left up to his dad (we are separated) he would definitely flunk out, because Dad has no more organizational skills than his son. I believe he is also ADD but has never been diagnosed.

Do you think your DGS could loan my son a few inches in height? ;) He finally just hit the 5 ft mark and we had a little celebration. He eats like there's no tomorrow when his Ritalin wears off, too. Unfortunately he's gained a fair amount of weight because of it and is now quite overweight. I dread the day he decides to go and get his learner's driving permit. I can't even imagine him behind the wheel of a car, for the reasons you mention. He also plays guitar - he is quite artistic, musically and with a pencil.

I have concerns for his future as well. Right now he has his heart set on being an auto mechanic and going to community college. That is why I am so determined to make sure he will have some resource access once he gets there, by keeping his IEP up to date and hopefully getting a firm LD diagnosis before he leaves high school. I know a few successful ADD people - his dad owns his own kitchen cabinetry business, but only became successful after he let his brother run the office end of the business. My son also had a great teacher in grade 6 who was himself ADHD and who was a very positive role model for the 5 ADHD boys in his class. I am sure there are many other successful ADD people out there, but it's not always that apparent unless they choose to speak about it.

Right now I'm worried about his meds and how we will cope with school if the endocrinologist tells us that they are affecting his growth or the onset of puberty. So far we have not heard back from him with any test results, so I guess no news is good news at this point?

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ansa, how will you manage with Cait on a long trip to the Philipines? Your other two girls must be very supportive otherwise I can't see how you could do it by yourself. Have you taken her before?

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lucky, I just read an article about Ritilan and it's ineffectiveness on kids with ADHD. They also acknowledged that it could stunt growth! Sounds like your son's status but you probably knew that!

I read the news on the Google front page so maybe you can find it. It's an article from the Guardian.

I don't know how to bring things over here so can't help in that regard.

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Thanks, Toots, I'll go check it out. It seems some studies prove it, while others disprove it. LOL. So far I haven't heard a word back from the endocrinologist, but we have an appointment with the dietician next week. Hee, don't anyone tell my son that they are going to teach him how to cook! But as for whether Ritalin has an effect on ADHD....well, I tried for years to keep my son off it, usuing all sorts of natural remedies, but finally succumbed around 7 years ago. Day and night. Teachers cannot manage him in the classroom without it. And I know the second I walk through the door whether he has had his meds or not. I am sure it is not that effective for all kids. But it is for mine.

ETA: I found it. And while the growth suppression aspect of things concerns me, what I was told by my son's prescribing doctor is that it has also been proven that these kids' growth is not permanently affected....they do end up catching up in the end.

It kind of makes me laugh that the article is stressing that long-term the drug doesn't have any benefit on managing behaviour. I mean, it's a 10 hour time release medication (at least Concerta is, Ritalin is only 4 hours I believe). Why would anyone believe that it would have a long-term effect? It doesn't stay in the body. In my mind, it's a way to help him manage in a classroom, because most teachers are not really trained in how to manage ADHD behaviours. It's unfortunate, for sure, but for most of these kids it's like trying to fit a square peg in a round hole. Their brains just work differently.

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Does the growth only happen if they are off of the drug? Have they ever discussed using strattera (sp)? I think it may be in the habit forming group but it apparently works well, or at least they say it does. It's just too bad they don't understand how to manage the problem by some means other than medication.

Anyway, I'm glad you found the article! Good luck, lucky and son!

By the way, how did he do alone when you went to Vegas?

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Yeah, they've discussed strattera. Problem is he also takes an SSRI (Zoloft) and I think I remember the concern being that we'd have to discontinue it because you can't combine them. We decided not to mess with what's working. In my mind the symptoms of his anxiety and depression are far more concerning than the ADHD. He used to talk about suicide and how much he hated himself. Those things have gone by the wayside and he actually feels pretty good about himself now, for the most part.

In other news, he did well while we were gone, but he only had one full day alone. I let him miss a couple of days of school to stay at his dad's a little longer. It all worked out well. :)

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Yeah, they've discussed strattera. Problem is he also takes an SSRI (Zoloft) and I think I remember the concern being that we'd have to discontinue it because you can't combine them. We decided not to mess with what's working. In my mind the symptoms of his anxiety and depression are far more concerning than the ADHD. He used to talk about suicide and how much he hated himself. Those things have gone by the wayside and he actually feels pretty good about himself now, for the most part.

Really? When I had all that stress and they decided that I had an inherent problem, my doctor put me on both Zoloft and Straterra, none of which helped. I don't remember seeing that when I looked up drug interactions, unless this is recent, my story is from 4 or 5 years ago.

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Hmmm, maybe I'm mixing up my meds (we discussed a number of different options last year) but I'm almost positive there was some problem keeping the current dose of Zoloft. I just remember not wanting to risk making a drastic change in the middle of the school year.

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Play, what did you end up doing about your stress? Medication or therapy or just pulled yourself up by the bootstraps (does that really work)?

Lucky, how about Adderall? I know there is a problem with addiction but a friend of my family took it and was able to focus on her studies and function where she couldn't before. I don't know if I'd want anybody in my family to take it tho. I'm not even sure doctors will prescribe it!

I guess the more important question is what the hell is causing all of this shit?

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Well, the ADD and anxiety are hereditary, I would think, from his dad. But I've long thought that the correct diagnosis is Non Verbal Learning Disorder (which is opposite to what it sounds, it means that he doesn't process non-verbal cues correctly, i.e. body language, tone of voice, etc). Apparently the symptoms really mimic those of ADD and the anxiety/depression stuff. But we've had no luck getting a concrete diagnosis, so the best we can do is treat the symptoms at this point. And since we've found a combination of meds that work, I am really hesitant to experiment with others. It took us a few years to get to this combination - we previously tried Ritalin (4 hour) and Dexidrine, I think it was called.

But I got some good news the other day - the school board has agreed to fund a full psychological evaluation this year (he had the last one when he was in grade 5, and we had to fund it ourselves, it came back inconclusive because he shut down in frustration at all the timed tests). So there is the off-chance that maybe, just maybe, this time they'll come up with a diagnosis that fits. He has hopes of going to college after grade 12, so it would be nice if he could have an LD diagnosis in his back pocket - would open a lot of doors for him.

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lucky, you always have my good thoughts. Whatever news it is at least someone is delving into the problem and that has to be good...right? I really admire you for being so strong in the face of adversity. Sometimes we don't really want to be tough but we just are....you are!

Good news, good luck

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Thanks, Toots. Yeah, I have to look at it as though I asked for help, and they are helping. I talked to the woman in the endocrinologist's office this morning, and apparently one of his growth hormones is low. So they want to do some more extensive blood tests that will require him to check in as an outpatient for a morning. I actually am kind of happy because I think this might be good news for him - that maybe something can be done to help.

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lucky, could Ritalin be the cause of the low growth hormone? I appreciate your concern with trying new things now that you seem to have the symptoms under control but maybe, just maybe, they can figure out what the real problem is and fix it for life. :ura:

Do you know when they are going to do the more extensive tests and how is he reacting to all of this?

Good thoughts to you and young lucky.

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I am really hoping that they can answer those questions. I called her back to ask her whether or not he is to take his medications the day of the testing, and she said she'd check with the doctor. The problem we've had up until now is no one doctor wants to look at all these things together - a psychiatrist handles the prescriptions, pediatricians or GPs etc have handled the rest. So I hope that finally we can look at the big picture and see what's best for the whole child. If the Concerta (Ritalin) is somehow causing this then we will have to find an alternative solution.

The tests are set for Dec. 20th but I haven't had a chance to tell him yet. I am sure his initial reaction will be "no way, I'm not going" but he'll have a month to soften up. Heck, it's only a couple more blood tests. He wants them to get to the bottom of this as much as I do. Before then, we have the dietician to worry about! He has to track his food for 3 days. Hee, bet that will be fun. ;)

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Not sure if I'm just talking to myself in this thread now with Toots gone, but we got our results today. Growth Hormone Deficiency (GHD) is the official diagnosis, and no, the meds he takes have no bearing on it. Apparently his bones are similar to a 12 year old's, even though he's 16. The recommended treatment is growth hormone therapy, starting immediately. He will have to inject himself daily for up to 3 years (and he's terrified of needles). MRI and CAT scan ordered to check out what's going on the pituitary gland, but those are backed up for months (especially the MRI, 9 - 12 months). All this is making my head spin. Eeeeep. Well, at least we got some answers. :huh:

Oh, and the good news is that it's 100% covered by our provincial health insurance. To the tune of $40,000 - $60,000 a year. Can you imagine? OMG. Mind blowing.

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Wow, Lucky..well the good news is that you know what's going on. Sometimes not knowing can be worse. And he was taking medication that he didn't need? Full coverage that helps too. But I totally understand your son. I need to get myself together for the simple fact is that I never want to have to do an insulin stick every day. How are you. YOu must be overwhelmed. Good luck with the treatment.

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How am I? Well here I sit at 4:49 am so I guess you could say overwhelmed. Hee, can't sleep. The meds that he has been taking are for his ADHD and his anxiety/depression. He definitely needs those. The concern was that they might have caused or affected his growth. The doctor says that's not the case. So he will have to continue to take them (can't imagine he could get through this without them) and also take the daily injections. The good news is that he is warming up to the idea, even in the few hours he's had to digest the news. The thoughts of getting taller (he's currently 5 foot nuthin') and also slimming out and gaining more muscle mass (which is a benefit of this treatment) are starting to appeal to him. I also called his dad and told him in no uncertain terms that he needs to get his ass out here for next week's appt. We need to make some big decisions and he should be a part of them.

I need to do some research and hopefully find some forums or something where people discuss this stuff. There are risks and side effects that I need to look into. Wish me luck. :F_05BL17blowkiss:

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Yeah that to all of what couchie said.

And best of luck to luckiest1 and luckiestson!! I saw a show on Discovery Health (I think) about a young man who went on growth hormones, and the follow-through like they often do where you see him some years later. I believe this kid was younger than yours when he started. Anyway, he grew like 4 to 6 inches, can't remember exactly, which left him still short, but a whole lot less so. As a vertically challenged person I can relate, and I get that it must be a 1000 times harder for a boy than for a girl. My dad was 5' 6" and grew up in a time where people as a whole were a bit shorter on average, but it was still difficult for him, so I can only imagine. Hopefully the possibilities will energize him for the icky needle thing. Don't boys sometimes grow a bit even up into their 20's?? So with the help of this treatment he could grow quite a lot.

ETA: I'm glad that the medication hasn't been affecting his growth. Sometimes you just get the short end of the stick--ha ha. My mom is (or used to be) 5'4", and I have a sister that height and a brother 5' 7", but I ended up 4' 9 1/2" (and then grew a bit more after high school or the yoga did it or something so at one point I was an inch taller than that). I would've been a great deal shorter if it hadn't been for the summer I grew six inches!!

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I found a great site with lots of info if anyone is interested:

http://magicfoundation.org/www/docs/108.21...th-hormone.html

Apparently there are ramifications of the treatment beyond just helping growth. Children and adults with this condition who are not treated have much higher incidence of cardiovascular problems, have much higher percentage of body fat, cholesteral problems, etc. Some evidence of anxiety/depression/self esteem problems too. So this treatment is looking better and better. The only thing is that he is coming at it quite late - would have been much more beneficial to start him earlier. He can only grow until puberty and then his growth plates will close. But so far that's delayed and the doctor is hoping it stays delayed for a while so we can get some treatment started.

Anyways, thanks so much for the posts of support. I appreciate them.

ETA: Apparently the minimum growth for a child is 2.5 inches per year. Anything less than that is concerning and should be investigated. Since we've known for a couple of years that he has only been growing about an inch a year, you'd think someone would have referred him to an endocrinologist earlier. Especially with the weight gain and the anxiety/depression. Oh well, I guess I can only look forward and not back. BTW I am 5' 1" and his dad is 5'6". But my other son is 5'10" so go figure.

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