ARGHHHH | ADHD Information

Try contacting the company that makes Provigil. Many times these companies have programs to provide people with the meds they need, often for free.

My son was in a dosing study with Provigil. It was wonderful. I saw improvement the first day and we weren't even up to the target dose. The only drawback for us was the weight gain. My skinny little guy gained 35 pounds in 6 months. He went from a size 12 to a 16 husky. He went from his ribs showing  to having a little belly hanging over his jeans. We were starting to get worried because of the weight gain (10 pounds one month). He was the only one in the study to have gained that much weight.  But, the study ended when the compay decided not to seek approval for use in children. They had a case of Steven Johnson Syndrome. That was 2 years ago and he hasn't gained any more weight since. Now, he is a foot taller and skinny as a rail again.

I accidently overdosed him, gave him his meds twice one morning. At the ER, he was calm but complaining about the IV. The doctors kept asking me if he was acting OK. I had to tell them that is how he was supposed to act on his meds. The study doctors told me that you would have to take 10 times the dose before you would have a problem.

 

That is horrible about the insurance not covering his med. Can't his doctor help you fight this? Are the tics from NOT taking the med?

your son may qualify for help through social security or another program. Have you asked his pediatrician even? this really makes me mad. I would prefer my tax dollars helping out children in need of things like this than bailing out the millionaires on wall street

Have you even gone to Wrights Law? They may be able to help. I will link you. there is also a yellow pages that may have a phone number who could better direct you to an agency for help. Your son has a disorder that I believe qualifies for certain assistances. We have to find them for you!!

http://www.yellowpagesforkids.com/yp.user.guide.htm - this is the yellow pages to try to find you help

here is wrights law http://www.wrightslaw.com/

I hope this is of some help.

please keep us posted on how things are going. sending you hugs

best wishes!!

  Reruho, thank you so much for the input and advice! I wouldnt mind a little xtra weight for him, but 35 would be pretty bad. Did he just eat more, or did it change his metabolism?

                        

There must be something in the air because I had an awful week with my ds and other moms I know have also had a bad week with their kids.  My ds son aslo had the eye rolling tic.  One day last year the teacher and nurse called to tell me he was having a seizure..I assured them he wasn't!  Anyway, he is now on 36 mg of Concerta (was on 54) and 58 of straterra (18 in the a.m. and 40 in the p.m.) and along with 2 mg of tenex.  No tics except once in a while when he is really stressed.  If this doesn't work, our dr. also talked about Provigil.

I hope we all have a better week.  It is frustrating to have such touch times.

Mars

He was eating constantly, I could not keep enough food in the house. My son's weight gain was unusual and not one that the other children were experiencing. The nurse and doctor we worked with said he needed about 15 of those pounds. He was grwing out a pair of pants in two weeks. I finally went to elastic waistbands. It didn't bother my son because he isn't into clothes and it was less work.

I was so happy with this med. It had good symptom control and seemed to be a smooth transition during the day. He was even sleeping. I was very upset when the study ended.

We had another tragic event happen during the study. The nurse working with us had a massive heart attack and died the week before the study ened. He was just 35. My son was very upset. We had been working with him for 6 months.

 

  I have 3kids and a husband with adhd. Middle child also has aspergers. I am having a terrible week!! They are all freaking out this week! Full moon? No. We had a big sit down family meeting last night because no one listens, they all fight doing homework and not one of them(husband included) can just do the chores and day to day tasks given.  Im just venting!!!!!!!! Insurance wont pay for provigil for middle son, but his tics are getting worse every day. He rolls his eyes and looks like he is having a seizure. ARGHHH is right!!!



How incredibly frusterating! I myself have 2 boys, one of whom is a typically developing (albeit, very bright) 6 year old and an autistic/ADHD/whatever else you wanna throw in the mix, 9year old.

My kids fight me with doing homework (which is why we've insisted my oldest not be given homework; afternoons are his down time... and we already mess it up twice a week with private therapies in the afternoon) and chores? FORGET about it!

Not much help but I'm sure all of us can commiserate with you! IHope the situation can get resolved and you can get some rest!
  His pdoc is awesome. She called the insurance company and now they are reviewing the need. He takes ritalin and it doesnt seem to be doing as good as it was. We increased it a little and now we have horrible eye rolling, smelling his hands constntly and his mood is awful! Pdoc wants to try nonstimulant. The reason they are trying to deny the provigil is because it isnt "approved" for adhd even though it has been used for years.

Re; the eye rolling...we had the same problem and had to add Cogentin (Benztropine) to his daily cocktail.  The tics and eye rolling stopped immediately.

Paul

ah-man.  Its stinks when there's that much stress, and it seems you are surrounded right now.  Its great that your pdoc is working with/for you. 

Here's to a happy weekend!