now looking into encephalitis...maybe not PANDAS?

[Pudgeo]

hi...the improvement I saw in my son is now gone..he is very spacey & lots of OCD..I started a trial of azithromycin & abilify to see if it would help.

I saw Stanford Dr and he felt my son had an encephalitis type process going on..brain inflammation. I am going to pursue a lumbar punch. Has anyone had any experience with this? I researched encphalitis and it didn't sound good..it sounds like some kids never recover..very depressing..

DOes anyone know if it's OK to give 5-htp with abilify? thanks...Sarah

[EAMom]

Hi Sarah,

 

give the Azithromycin at least 30 days..in other words, do more than the traditional 5 day course. My daughters PANDAS OCD/Anorexia has been in remission (gone) since June thanks to Azithromycin. By day 5 of Azithromycin her mood had improved but we were still fighting the OCD/eating disorder. By day 30 she was 99% back to normal...eating great, cheerful, her old self (see my post to 1koolteacher for more info.) It's definitely worth a try. Azithromycin also has anti-inflamatory properties in addition to it being an antibiotic...used in cystic fibrosis etc.

 

PS. Which Stanford Dr. are you seeing?

[Pudgeo]

To: FAmom. we saw Dr Lewis at Stanford. He is a Pedi Immunologist. He was very helpful. I am very lucky my Pedi at Kaiser has been willing to try things. My son has had 3 IVIG thru Kaiser and my pedi just told me Kaiser will not do anymore IVIG for "neuro-immune" issues. My DAN actually prescribed the azithromax for me..My Kaiser pedi said he can only try one thing at a time.My DAN said we may need a course of steroids too. I am trying everything to beat this!

 

Thanks for the encouraging words on the azithromax..I only have 2 weeks worth but DAN said she would give me more. I knew when I took it I would need at least a month!From what I have read I feel my son may need to be on azithromax for a long time(6 months?) I also am worried about being exposed to germs at school to trigger this again!

I am so happy your daughter is better! Thanks ! Sarah

[EAMom]

Hi Again Sarah,

 

By the way, my daughter is definitely PANDAS and her strep titers not high the 2 times we measured them. Ed Kaplan (WHO strep expert, although I wouldn't call him a PANDAS expert) has studies that show that 30% of kids with pharyngitis and positive strep cultures (kids that really have GABHS) do not get elevated titers...titers are a useful number if your kid happens to have them but IMO lowish titers (as my daughter had) esp. in the face of postitive cultures, do not disprove PANDAS. Kaplan also said it's possible my daughter *had* elevated titers but by the time we measured them (after 2 mo.) they could have gone down. Titers can be a bit tricky to interpret...some people mount a big antibody response and some peole don't. Kids with low titers can still be having an inflammatory reaction to the strep (perhaps the strep is somehow triggering changes in brain enzymes/basal ganglia)...as my PANDAS daughter so clearly demonstrated.

 

So, I wouldn't completely rule out PANDAS in your son just because the titers aren't high. However, I do agree that the encephalitis is worth looking into.

 

EAMom

PS. Hooray for Kaiser for giving you a shot with the IVIG...I'm sorry to hear it didn't help your son.