Starting azith today!

[monarchcat]

So after putting puzzle pieces together for the past 9 months, culminating with the Cunningham results of elevated neuronal antibodies and a CaM Kinase II score of 193, it's obvious that my son has PANDAS! He has never been a "classic" case, so until I had the data from the study it was hard to confirm. His ped does not know much about PANDAS but has been willing to listen and willing to follow what I asked for treatment which is 30 days of Azithromycin (250mg/day), most likely followed by a prophylactic dose after that.

 

I just gave him his first dose and the relief I feel is immense, but coupled with nervousness about whether we will see results and when. I am trying to tell myself that is we see at least the tics go away that will be fabulous, but I really, really, want this boy to be happier and feel better. He is anxious, irritable, has terrible self esteem, etc., etc. and I have said for three years now that SOMETHING is keeping him from reaching his full potential as a happy-go-lucky kid. I so hope this helps.

 

My next step, I think, is going to be finding a great nutritionist who will be willing to help me find the right supplements, etc. to help his brain heal and help prevent future exacerbations.

 

This forum has been a LIFE SAVER. Perhaps literally! LOL

 

Thanks to you all!

[mama2alex]

Sounds like you've traveled a long road to get to this point. Glad to hear that you have an understanding and helpful pediatrician. Good luck with the Azithromycin - hope you see great results! Keep us posted.

[Suzan]

Congratulations on getting to this point and having a doctor who is wiling to work with you. I'm sure you will see great results with the zith! We noticed big improvements within 3-5 days. Our neurologist just recommended Origin of Life liquid vitamin for us for starters. He said it's what he thinks will be of most use to her. Thought I'd pass that along....

 

susan