PANDAS and ADHD

[kcdc3]

Do any of you use any stimulant medication on your PANDAS child? My PANDAS daughter was presribed Ritalin by her primary care practicioner (who does not understand PANDAS). He presribed 5 mg twice a day. She already has tics, and I'm afraid they will get worse with Ritalin. Any thoughts?

[brooke]

Do any of you use any stimulant medication on your PANDAS child? My PANDAS daughter was presribed Ritalin by her primary care practicioner (who does not understand PANDAS). He presribed 5 mg twice a day. She already has tics, and I'm afraid they will get worse with Ritalin. Any thoughts?

I still have that rx filled, but given my son's reaction to every single medication we have tried, I did not administer it. I have read that for PANDAS it may not be a good idea. I think it increases dopamine, which they already have too much of?

[mom md]

My son was mis-diagnosed with ADHD instead of PANDAS and we did try several stimulants. THey all made him worse. Symptoms went back to before when we stopped but they were no help.

[Ellen]

When my son was diagnosed with PANDAS two years ago, the first neurologist we saw told us that the treatment for PANDAS related ADHD and OCD should be the same as any other kind, with stimulants and SSRIs. (No mention of antibiotics except as a possible prophylactic) He did warn us that stimulants could make tics and anxiety worse. Before trying SSRIs for the OCD (which turned out to be a disaster) he was on Vyvanse, a stimulant for ADHD, which we thought might help with his focusing issues and spacing out problems. We stopped after two days because his anxiety went through the roof and he was borderline hallucinating. It was very scary!

 

Ellen

 

Do any of you use any stimulant medication on your PANDAS child? My PANDAS daughter was presribed Ritalin by her primary care practicioner (who does not understand PANDAS). He presribed 5 mg twice a day. She already has tics, and I'm afraid they will get worse with Ritalin. Any thoughts?

[michele]

Every stimulant we have used has increased the behaviors we were trying to eliminate. We tried Adderall XR and Concerta and Strattera. None of them helped. Even celexa and zoloft made him worse and it is supposed to help with anxiety. Yes his tics did increase on some like the concerta I think. Yes his anxiety was worse on some like the celexa and klonipin. He was more hyper on the zoloft and adderall xr. He got diarrhea and encopresis on the strattera. The only meds that have helped are prozac and abilify and risperdal and clonidine. We had to stop abilify because it stopped working a 15 mg. though. Dr. T Murphy (PANDAS researcher and child psychiatrist suggested Ritalin, and clonidine and tenex for PANDAS/tourettes kids. However she never prescribed them since we were out of state. We go to a child psychiatrist in our area. Dr. Latimer suggested Clonidine patch and prozac. The prozac 5 mg and tenex 2 mg and risperdal 2 mg combination are helping with his concentration and moods for now. He is finally not arguing and yelling all the time. The clonidine .1 mg in half at night helps at bedtime. He is like a different kid and it is about time we can enjoy him again. He even notices the difference. He still needs work on his communication and social skills but we are able to help him now since he is not so angry and impulsive. Email me PM if you have any questions. I have been working on these meds for several years now and combining them for the past year. It is a full time job!

 

Michele

When my son was diagnosed with PANDAS two years ago, the first neurologist we saw told us that the treatment for PANDAS related ADHD and OCD should be the same as any other kind, with stimulants and SSRIs. (No mention of antibiotics except as a possible prophylactic) He did warn us that stimulants could make tics and anxiety worse. Before trying SSRIs for the OCD (which turned out to be a disaster) he was on Vyvanse, a stimulant for ADHD, which we thought might help with his focusing issues and spacing out problems. We stopped after two days because his anxiety went through the roof and he was borderline hallucinating. It was very scary!

 

Ellen

 

Do any of you use any stimulant medication on your PANDAS child? My PANDAS daughter was presribed Ritalin by her primary care practicioner (who does not understand PANDAS). He presribed 5 mg twice a day. She already has tics, and I'm afraid they will get worse with Ritalin. Any thoughts?

[trggirl]

So treating the PANDAS will not help the ADHD in some cases??

[EAMom]

So treating the PANDAS will not help the ADHD in some cases??

 

Treating the PANDAS (with appropriate abs, possibly IVIG or PEX) should help the ADHD (just like it helps the OCD/tics). Also, you might also try advil (Ibuprofen).

[fuelforall]

So treating the PANDAS will not help the ADHD in some cases??

 

 

 

Well, let's just say in my case it has not helped yet. The scattershot healing taking place post-IVIG is most frustrating- am I the only one with this?

Could you tell me the age of your child, Michele, and weight? We are about to re examine stimulants- Tenex just made my son tired but there is a new drug out now. Don't know the name but the same active ingredient as Tenex, different release mechanisms, etc.

Prozac? I thought that was an SSRI and therefore a no no for PANDAS.

 

I sure was hoping IVIG would negate the need for these things. But...

[faith]

Trq,

maybe starting out with fish oil or omega 3 formula might help? altho some hv seen tic increase with fish oil, so that's one to watch too, but it is supposed to be helpful for focus/attention I think.

 

I am leary of the ritalin if you say your son has some tics. I guess you have to gauge which is the more problem, the adhd or the tics? I suppose you could try it and see, and stop it if his tics increase, but I know for myself, I would not, my son's tics are too many and I can't take the chance of a stimulant med, but I doneed help with focus/attention too. .... I am kind of really skiddish on trying a med for my son. maybe one of the meds used for tics, i.e. tenex or clonodine is also beneficial for adhd, but I really don't know, you might have to do a little research.

 

As far as treating the PANDAS and hopefully helping the adhd, I think it possible, for I recall when asking Dr. Latimer if the prednisone (which we did not do yet) would help with all the symptoms, she said it should, and named tics/ocd/adhd. (my son is not hyperactive but definitely has attention/focus problems).

 

Faith

[trggirl]

Faith,

 

Fish oil and any food with added omegas and flax cause her to tic. I found that out the hard way last year. A few weeks after she started ticcing last year, the teacher told me she was having trouble focusing at school. I immediately ran out and bought some fish oil and some foods with supplemented omegas and flax. She went from ticcing to almost convulsive-like movements. I stopped the fish oil and she went back to regular ticcing.

 

I was really hoping that IF it was PANDAS and we treated, the focus issues would be helped. It is really starting to affect her in every aspect of her life. Some kids were calling her stupid at school the other day. It's just heartbreaking to watch what these kids have to endure.

 

EAmom - My daughter is taking Ibuprofen now because she had strep throat this past weekend and is still not feeling well. I will definitely give it a try when things are back to normal to see if it helps.

[EAMom]

Trg girl/kcdc3:

 

Trg girl....Strep will make symptoms worse...so I'm assuming she's not on prophylactic abs? What ab (and dose and how much does she weigh) is she on right now?

Would your doc let you do a 1-2 mo. trial of a strong high dose ab like augmentin or Azith?

 

kcdc3...same question...is you dd on abs and which one?

 

Where do you guys live? (did you already post this?) Maybe someone can rec. a doc.

[michele]

Kids with tics are usually given non traditional meds like clonidine or tenex (BP meds) for attention/hyperactivity) issues. Also the neurologist said that the abilify or risperdal can improve their attention. My son is so focused now to do his homework it is amazing. His grades are great and he is following directions and doing much more independently. He no longer fights to do homework or go to tutoring. I am telling you I have a changed boy! Now if we can only keep it this way!

[faith]

trq,

yes, trq, did the doc prescribe abx? and if so, I'm wondering if this is the first time since you are looking at PANDAS that she's been on abx? you are the one that said your daughter talked excessively, correct? how is that going? if she's on abx, would you say that has calmed down? if so, than this is a clue.

 

 

Faith

[faith]

Kids with tics are usually given non traditional meds like clonidine or tenex (BP meds) for attention/hyperactivity) issues. Also the neurologist said that the abilify or risperdal can improve their attention. My son is so focused now to do his homework it is amazing. His grades are great and he is following directions and doing much more independently. He no longer fights to do homework or go to tutoring. I am telling you I have a changed boy! Now if we can only keep it this way!

 

 

michele,

you must forgive me, I want to get your story right in my head. I was under the impression things were not too good even after your visit with Dr. Latimer? or is that about issues other than attention? could you clarify that? these meds help his attention and you say he is doing very well in that area, are the ragey behaviors better too, or is that a separate issue? was it that he just did poorly on the pred? sorry, I just like to understand. great that he's doing well then on these meds, I know you've tried many.

 

Faith

[trggirl]

Faith and EAMom

 

We are not on antibiotics prophylactically. I am seeing a doctor for the first time regarding PANDAS tomorrow. I got the name of the doc from this site. I am not sure my daughter has PANDAS, but she did start ticcing for the first time three weeks after strep last year so I am going to follow this route for the time being.

 

Yes, I was the one whose daughter talked excessively. She still does. And our homework sessions are almost EXACTLY like you described in one of your posts Faith.