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Tanya-Mae · 02-16-2010, 11:28 AM

Alright, tell me what you know...

I just got back from Daegan's pediatrician and got the expected ADHD diagnosis with a script for Concerta. I am told to wait before medicating him as the pediatrician wishes to just get the official blessing from him cardiologist prior to taking the med. Daegan currently has one very small VSD. He did have two VSD's and a PDA at birth... one VSD and the PDA spontaneously resolved. Daegan also had (yes, had) glaucoma in utero which has spontaneously resolved and he is followed by an opthalmologist as he is considered at risk for redeveloping it... although that risk decreases over time with no signs of active glaucoma.

Geomamma · 02-16-2010, 12:43 PM

We did a brief trial with Concerta, no success here (but we haven't had success with any of the drugs, so it's not indicative of the drug itself).

I would suggest asking your questions on this site, they have a lot of people with a TON of experience.
Learning Disabilities (LDs), ADHD and Education Support, The*SAFE*Site - Home

gogomom · 02-16-2010, 12:49 PM

I almost didn't post this because I don't want to freak anyone out with one persons experience but - Please be careful with Concerta - my best friends (11 year old) son just tried to commit suicide on it - apparently suicidal thoughts are a side effect some kids can have.

This too I'm not 100% sure I feel comfortable sharing but - I'm quite certain my DS#2 is ADHD, but I refuse to medicate him in any way shape and form. The school is big on medicating him so that he will learn the way they want him to, but I've seen so many kids who cannot deal with any emotions as soon as they start to come off the drugs that it really frightens me. I've done a lot of research but I'm at the point where I'll pull my kid out of school before putting him on mind altering drugs.

mom-to-two-boys · 02-16-2010, 12:50 PM

My oldest is on concerta and has been since day 1. I think my child should be the poster child for the drug. We saw an immediate change in his behaviours. He has had to have a few increases over the years but no real ill effects from it.

My youngest DS was also prescribed it but it did nothing for him! go figure!
a lot of it at the beginning is trial and error and with any med as my dr says 'go low and go slow' we were lucky enough to find one that worked the first time with my oldest but the youngest, I've almost lost count at the different meds/doses changes we've had and they're still not quite right

Good Luck

eversoclever · 02-16-2010, 01:27 PM

DH took it for a few weeks, but discontinued because it caused horrible headaches.

Tanya-Mae · 03-04-2010, 11:48 AM

Still holding off filing the script as I'm not getting much help from the cardiologist. He has been very vague in his wording. I have requested my pediatrician to mail me a copy of this one sentence letter to my home address.

Kari2217 · 03-04-2010, 12:14 PM

I was on it a few years ago...
The only side affect I had was appetite suppression, and I lost like 10 lbs (not good when you're already slim) so they were going to take me off unless I started to gain my weight back.
Other than that, I thought it was really good.

There are going to be side affects with any drug- you really just have to do trial and error to see which one works for your child.

barkingboys · 03-04-2010, 01:55 PM

It's been a while, I would have thought the cardiologist would give his blessing or voice his concerns very clearly. Hopefully you get some answers soon!

Tanya-Mae · 03-04-2010, 02:13 PM

Yeah, you'd think so but I've learned one thing in my life... there is often a huge discrepancy between logic and reality.

Tanya-Mae · 03-07-2010, 06:29 PM

Daegan started the meds yesterday (10:45am).

Day #1: happy, hyper chatterbox all day. I noticed he was grinding his teeth that evening. Also protruding his lower lip/jaw out a bit and his lip was downturned towards the left (not normal for him). He barely ate or drank anything. The biggest thing he had was a bagel with cream cheese at about 8pm, then some chips around midnight. He threw a fit at 1am when I had enough... tired of waiting to see if he would show any signs of slowing down which he didn't.

He popped out of bed at about 8am this morning and has been on the go ever since. He did not want to take the meds but when I told him that the doctor said it might help him make better choices and be happy, he obliged (9:00am). Again, eating and drinking very little... did not touch the pancakes he requested. Ate a strwaberrym a cookiem slice of bologne and two french fries so far (6pm) Had one huge freakout at the grocery store today, otherwise just a huge chatterbox. I'm trying to remind myself that he is happy, and that this is good for his speech, all the while warning his big sister to have extra patience with him. It wil be interesting what happens when I try to put him to bed tonight.

I am taking notes trying to document what I see... time meds taken, food intake, bedtime and general observations. I even tried to take some video last night to show the weirdness with his mouth.

Tomorrow will be his first day going to school with meds and I see the pediatrican again in about a month(ish).

MrsSunshine · 03-07-2010, 06:35 PM

hmm i have more to comment on this.(later) but very interested to hear more about the lip thing.. please let us/me know what happens with that.. does it continue.. etc.. ill explain y later..

Tanya-Mae · 03-07-2010, 06:49 PM

will do... the lip/mouth/teeth thingy is what has me most “concerned“ at the moment. No idea what to make of it.

MrsSunshine · 03-07-2010, 06:53 PM

my son has never; done the grinding thing.. but has a 'drawl' to his lower left lip when he speaks.. ykwim.. like the lip is being drawn down by a muscle.. its weird.. maybe its not related.. but how would ya know.. ykwim.

Tanya-Mae · 03-07-2010, 07:04 PM

Exactly!!! I'm wondering to myself if this observation could be linked to the notion of drawing out “ticks“? Either way, I do not like it. Not sure but he may have developed a bit of a new slur in the sound of his speech also... related to the mouth/lip position? An aspiring new generation Elvis Presley impersonator, lol? This is all just too very new for me.

Sorry, but sleep deprived me doesn't remember... is your son on meds too? Concerta for ADHD or otherwise? If so, did this lip drawl start with the meds?

MrsSunshine · 03-07-2010, 07:14 PM

he's not on Concerta anymore.. he's now on Biphentin.. its almost like he becomes 'immune' to meds after a while..he had been on it for a very long time.. however his brother was on the same thing. no lip thing..
their dr. is VERY careful with their meds. esp. when it comes to their hearts. they go for blood testing and heart monitoring every few months..
he has been to the CPRI clinic as was NOT dx with Tourettes so good news there.. feel free to pm me anytime if you need anything..