At the end of my rope...

[kkver]

zithromax normally works best during PANDAS . There was a big article about it on NIMH about it's some property ( i think amino modulator ) . Last year there was a girl around 20 yrs old who has posted she went through numerous IVIG treatments in NY and was on antibiotics.

[bmom]

kkver,

When you say zithromax works best for PANDAS, do you do it daily for preventative or during outbreaks? My son is on it now treating a strep throat but it is gone today and then only lasts in the system 5 more days. I am worried when it is gone out of his system what will happen.

 

Michelle, Could you let us know how Abilify helps with the tics? My son is slightly emotional, but it is not bad. The tics go out of the roof during strep.

[michele]

We are on it for ADD and emotional liability. Tics are mostly gone since Jan. Just slight extra eye blinking here and there. He does sometimes do the noises though. Abilify is being actively used off label for tourettes and tics. It has a calming effect which must reduce the dopamine brain chemicals that can cause tics. My son's last PANDAS attack before omnisef caused him cracking tics that lasted four months. He has been exposed to strep many times while on omnicef and never had a major flare up. Obsessiveness seems much better too. No meltdowns or tantrums yet. He is getting up and getting ready for school on his own and never once causing me any anxiety. Before the Abilify it was a fight every morning. He is six but has always acted younger then his age. I am so happy with him! I talked to Dr. Murphy. Here is her reply.

 

"Tenex occasionally works well but very much a trial and error process to

find those that respond to it. Abilify works well and I have had quite

a lot of experience with it but I would not suggest using it if he is

mostly remitted but use it when his tics are flared and the symptoms do

not seem to be subsiding spontaneously. "

 

Ours PANDAS symptoms were not going completely away. They were better on the omnicef but the attention and emotional issues were still always present.

 

 

Michele

kkver,

When you say zithromax works best for PANDAS, do you do it daily for preventative or during outbreaks? My son is on it now treating a strep throat but it is gone today and then only lasts in the system 5 more days. I am worried when it is gone out of his system what will happen.

 

Michelle, Could you let us know how Abilify helps with the tics? My son is slightly emotional, but it is not bad. The tics go out of the roof during strep.

[bmom]

Thanks Michelle, What do you think caused the tics to go away? Would you say Omnisef or Nystatin? Combo? I did not quite understand Dr. Murphy - did she like Abilify over the Tenex? Did she say to use it during times of flare ups or would it be continual use?

[michele]

In regards to Dr. Murphy,

She had suggested tenex in the fall if the ADD continued to get worse. The abilify was precribed by our neurologist who felt tennex doesn't always work as well. I think the Abilify is for continued use just as ritalin would be used. However the abilfy has an mood enhancer quality that possibly ritalin doesn't have. I stopped the nystatinawhile ago. When he was having ocd urination problems I was using it more regularly. Maybe he is improving because the toxicity from the immunizations have passed. The neurologist said he may just be waning that is why he is doing so well with the tics. (He doesn't believe the antibiotic takes away the tics) I suppose time will tell. However, omnicef seemed to help almost instantly! Strep has been in his class twice and he has been exposed and had the flu and still no tics. I am on my last refill. So I will have to get a hold of the immunologist. I pray he will continue him on it, 1 tsp a day. I don't know if he will call in more or I will have to take him in again. I had to ask him to try it long term. He had never prescribed it before for PANDAS. When things seem good you don't want to change a thing!

 

Michele

 

Thanks Michelle, What do you think caused the tics to go away? Would you say Omnisef or Nystatin? Combo? I did not quite understand Dr. Murphy - did she like Abilify over the Tenex? Did she say to use it during times of flare ups or would it be continual use?

[kkver]

kkver,

When you say zithromax works best for PANDAS, do you do it daily for preventative or during outbreaks? My son is on it now treating a strep throat but it is gone today and then only lasts in the system 5 more days. I am worried when it is gone out of his system what will happen.

 

Michelle, Could you let us know how Abilify helps with the tics? My son is slightly emotional, but it is not bad. The tics go out of the roof during strep.

 

 

Bmom

Once zithromax goes out of system you might see some tics or some emotional episodes. I have only used it twice after strep but i use it for 10 days instead of 5 . I have seen some tics came back after 5 days which takes roughly 12 to 16 weeks to go way . I don't like continues use of antibiotics so have not gone on that path nor i like the other Tics controlling which have serious side affects. One thing i have seen any 5 day course of antibiotic doesn't wipe out the bug so i find it critical to use antibiotic for at least 10 days .

[Pandas_chicago]

PANDAS DENMARK, Could you tell me if your son has been symptom free since the IVIG? Was it an easy procedure with no complications or was there some side effects? Did your insurance cover it and what was the cost? How long ago was your son treated? How is he doing now? Thanks.

 

 

My son had IVIG - 2 years ago and has had a full recovery and has been symptom free for almost 21 months

[emma1]

Can someone please tell me what IVIG entails in this type of case? Are their side effects? How did you find a doctor who knew about this?