Jump to content
ACN Latitudes Forums

What ADHD meds have worked for you? CHOP?


Recommended Posts

Hi all, I haven't been here in quite a while. I'm just finding my way back. Hope everyone is finding some success with their children!

 

After getting excluded from the IVIG study and trying every route I can think of to get it, we have hit the wall. Our insurance actually has PANDAS as a clear exclusion for IVIG. We just went to a developmental pediatrician who was probably the 8th doctor to insist he needs it, but not be able to get it. She did recommend a doctor at CHOP who is now doing IVIG for PANDAS with success. I did get Medicaid for my son so am trying now to see if they will approve it. We live in PA and CHOP is covered Whooohooo! We went there a long time ago and got nowhere. She DID clarify this is NOT Dr. Elia and said not to waste our time with her (LOL). Does anyone know about this? I called CHOP directly and they were no help routing me to this mystery doctor.

 

In the meantime, we have somewhat adjusted to this being our life. My son is for the most part, functional most of the time. ADHD is his worst, consistent symptom and has been for some time. He is downright dangerous. He has broken an arm, a toe, chipped a tooth and had other more minor injuries.

 

We tried STrattera last year and it was a DISASTER! He had a plan to kill himself with a knife while we were sleeping. He was SEVEN! I have never been so scared in my life. Needless to say, the Strattera was ended. We took several months to consider even trying something again. We tried Intuniv. Not quite as bad as the STrattera, but increased just about all of his symptoms. So now we are trying Concerta, which seems to have some positive effects.

 

The Developmental Pediatrician we went to (Dr. Senf from Good Shepherd in case anyone is familiar) is wonderful! She said he clearly needs an ADHD med but did warn us that they are very tricky for PANDAS, as one will increase anxiety, another will increase tics, etc...

 

Has anyone had success with Concerta? What others have you tried that helped without increasing other symptoms?

Link to post
Share on other sites

I have no med advice other than antibiotics and antifungal, but for us what helped my older son was supplements. Pycogenol, Omega 3's, Zinc, probiotics and multivitamin, he responded very well to supplements and calmed down for the most part. Limiting sugar helped too. Also adding vancomycin at reg dose for a week helped tame down aggression in my son.

 

I'm too scared to use meds bcuz of what I have read on this forum. I do use melatonin or clonodine on my child if needed.

 

Good luck.

Link to post
Share on other sites

My son cannot take ANY antibiotics, which is the problem. He escalated with each episode of serum sickness to swelling and vasculitis. They say the next response could be anaphalaxis and they gave us an epi pen.

 

Just out of curiosity, what IS the reasoning behind antifungals? Wondering bc he happened to get severe foot fungus and was put on the oral antifungal for that. Imentioned to the doctor that I had heard they are used but neither of us knew the reasoning. Wonder if that is actually helping him too?

Link to post
Share on other sites

Hi all, I haven't been here in quite a while. I'm just finding my way back. Hope everyone is finding some success with their children!

 

After getting excluded from the IVIG study and trying every route I can think of to get it, we have hit the wall. Our insurance actually has PANDAS as a clear exclusion for IVIG. We just went to a developmental pediatrician who was probably the 8th doctor to insist he needs it, but not be able to get it. She did recommend a doctor at CHOP who is now doing IVIG for PANDAS with success. I did get Medicaid for my son so am trying now to see if they will approve it. We live in PA and CHOP is covered Whooohooo! We went there a long time ago and got nowhere. She DID clarify this is NOT Dr. Elia and said not to waste our time with her (LOL). Does anyone know about this? I called CHOP directly and they were no help routing me to this mystery doctor.

 

In the meantime, we have somewhat adjusted to this being our life. My son is for the most part, functional most of the time. ADHD is his worst, consistent symptom and has been for some time. He is downright dangerous. He has broken an arm, a toe, chipped a tooth and had other more minor injuries.

 

We tried STrattera last year and it was a DISASTER! He had a plan to kill himself with a knife while we were sleeping. He was SEVEN! I have never been so scared in my life. Needless to say, the Strattera was ended. We took several months to consider even trying something again. We tried Intuniv. Not quite as bad as the STrattera, but increased just about all of his symptoms. So now we are trying Concerta, which seems to have some positive effects.

 

The Developmental Pediatrician we went to (Dr. Senf from Good Shepherd in case anyone is familiar) is wonderful! She said he clearly needs an ADHD med but did warn us that they are very tricky for PANDAS, as one will increase anxiety, another will increase tics, etc...

 

Has anyone had success with Concerta? What others have you tried that helped without increasing other symptoms?

 

I would ask the dr. who the "mystery doctor" is at CHOP. I haven't heard of anyone successfully getting IVIG for their child at CHOP for PANDAS, as CHOP specifically does not believe that PANDAS exists. If this pans out, I would love for you to PM me with the name (although we get it in CT). If this doesn't pan out, I would suggest you consider seeing Dr. B. in CT. We went that route in the end, and it was a lifesaver, as he found evidence of immunodeficiency, and that...when proven based on the requirements of your insurance, is how we got the IVIG approved.

 

Good luck.

Link to post
Share on other sites

My son, 7 tried many different medications for ADHD before realizing he was PANDAS. He has tics as part of his PANDAS symptoms. Concerta made his mouth move back and forth for the entire time it was in his body- 12 hours. It was so awful to watch. We tried Ritalin which increased anxiety. Stratera was the best because it held him still but it didn't help so much with attention. His dose was very low.

Link to post
Share on other sites

Hi - just a thought seing the note re fungal may be helping.. I think :) that our PANDAS/PITANDS ds4 gets the marked worsening with illness but also seems to get hyper almost as a sole symptom when we lower/forget probiotics for a bit and he also gets super hyped with lots of sugar. I know he gets yeasty as he's had a swab come back positive in the throat, had gi testing showing yeast and also had it on his boy bits.. poor critter.

 

His hyperness does seem to calm if I get his florastor in and good probiotics (we use pharmax). This doesn't do the trick when his hyper is part of a PANDAS exacerbation mind you or if it does it isn't noticeable.

 

The probiotics don't give me a night and day, sudden calming but things do seem to get better slowly.. so dunno.. it's so difficult to tell sometimes what is doing what but it may be worth a try. I have seen other folks mention yeast when kids get hyper or silly and goofy.....

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...