post-PEX plan

[peglem]

How do you know how long your child has had PANDAS? My sonhas had tics (not noticeable) since he was maybe 2 and then when he was 3-1/2, they starting getting progessively worse. He now just turned 6. Does that mean he has had PANDAS for 4 years? Is that a long time? I am freaking out!

Most people who know for sure, I think, are ones who have had a very sudden and extreme flare up up symptoms or know exactly when the 1st strep infection that produced symptoms was. "Long time " is a pretty relative term. I believe we've been dealing with this for 12-13 years!

[faith]

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[faith]

mylittleangel,

could you tell me if your son gets sick often? has he had this sinus infection before? how is he doing? recall he had some vocal sounds in the summer? was he sick at all in june or july that you can remember? also, could you tell me what was the outcome of this:

 

[My naturopath also pricked my ds finger and dropped 10 drops of blood onto a film. He then mixed each droplet with a different vile of medicine. He is going to examine each mixture under a microscope to see the interactions and determine A)if my ds has an underlying virus or bacteria and B)which medicine will get rid of it. He said my ds was the first patient he is doing this for as he had just learned about this

 

 

Faith

[mylittleangel]

mylittleangel,

could you tell me if your son gets sick often? has he had this sinus infection before? how is he doing? recall he had some vocal sounds in the summer? was he sick at all in june or july that you can remember? also, could you tell me what was the outcome of this:

 

[/quote

]from some pediatricians and labs in GermanyMy naturopath also pricked my ds finger and dropped 10 drops of blood onto a film. He then mixed each droplet with a different vile of medicine. He is going to examine each mixture under a microscope to see the interactions and determine A)if my ds has an underlying virus or bacteria and B)which medicine will get rid of it. He said my ds was the first patient he is doing this for as he had just learned about this

 

 

Faith

 

My son gets sick more often than he is healthy. Since he was an infant he has had numerous bronchial infections, ear infections (which he has tubes for), sinus colds, rashes/hives. Over the past 2 years, I can connect 5 sinus colds with major flare ups of his tics. He doesn't have any separation anxiety, or OCD (he does smell his fingers a lot). I also remember in April he had an ear infection and after his round of antibiotics, his tics disappeared completely only to come back with new ones when the antibiotics were gone. He is very tiny for his age (just turned 6 and weighs 38 pounds)...not sure if that has anything to do with it. Also, my husband has psoriasis which is an autoimmune disease...again, not sure if that is related. I contacted Dr. K in Chicago and I am going to speakwith him this week. He said he would be happy to work with my pediatrician here (now I just have to convince her). I just don't know if he is PANDAS or not. Now that Faith and Char have found out they are, I feel like mine is too. I don't want to wait until it gets worse but the PANDAS treatments scare me.

[faith]

mylittleangel,

you didn't answer about that naturopath that did the dry blood test? you mentioned something about him looking for bacterial or viral infections? did anything come of that?

 

I know you've said that your son was doing well before this vocal tic, does he seem to settle down fairly quickly after his flair ups? I agree about the treatments, it seems its still quite a path, but I feel you have to weigh on how on the scale you feel your childs symptoms are.

 

Faith

[dcmom]

Hi Bronxmom 2- I hope all is going well?

 

I just wanted to post. I am working on our post-pex plan, we see Dr L next week. Please offer your suggestions:

 

absolutely no vaccines, ever again

 

daily zithromax 200mg day for as long as Dr L will go for, then slowly weaning to 3x week with the option to double antibiotics at any uptick in behavior for a week or 10 days

 

the option to do steroid burst immediately if uptick in behavior is bad or not helped by antibiotics

 

any time she seems tired, or has an uptick in behavior or sep anxiety, I will keep her home from school a couple days (last 3 times she didn't want

to go to school, i later found out someone had strep, and duh I was forcing her to go and be exposed)

 

Proactive with dental work- see dentist for cleaning every 3 months (went yestarday)

 

In 3 months, pursue follow-up cunningham test, and some further immunology testing, consider IVIG to boost her immune system (DH not on board with this- yet and of course we are having insurance issues now with pex...)

 

get more aggressive with probiotics

 

And of course, completely stress out any time she is moody or does anything pandas-like , and if I hear anyone is sick, and even if all is well and she is doing great...(this is non-negotiable as a pandas parent- right?)

 

Thanks for your imput...

 

Eileen