Lab Results - questions

[sdrew99]

We finally had our follow up with our neurologist today - my 8 year old daughter definitely does have PANDAS. (here's my original post from a month ago: http://www.latitudes.org/forums/index.php?showtopic=16680&st=0&p=133831entry133831)

 

Some notes - tonsils are definitely very enlarged from MRI view. Will be seeing an ENT to discuss removal.

 

- Neurologist put her on 90 days of Omnicef to see what happens. Her M.Pneumoniae IgG Ab was 1:64, which suggests walking pneumonia or mycoplasma infection. Had a chest x-ray done on her today, if that is positive, will add a Z-pack.

 

- She was also positive for Epstein Barr Virus (mono) - normal index is less than 0.9, Sydney's was 2.6. Has anyone's kiddos had mono? How do you deal with PANDAS symptoms when it is a virus? She still has a rash that I thought was Fifth's disease (started 4/1) and the rash has recently come back...I didn't realize that mono had a rash that went with it, so this would make sense.

 

- Strep titers were 517 and the Streptozyme titer was 400, so both positive

 

- IgA level extremely low - we are going to see an immunologist, although my son (the one who has Type 1 diabetes) also has an extremely low IgA level. Do any of your kids have this? I'm not thinking much can be done to help that.

 

Anyway, I am so glad to have all of this quantitative information finally - proof that there is *something* not right that can (hopefully) be fixed. Is there anything else I should be doing or looking at?

[LNN]

My DD7 had Epstein Barr for 4 months this fall/winter. We tried a few things that didn't work, and then we tried l-lysine. Within days, she felt much better. Within 2 weeks, we were able to increase her school hours from 4 hrs/day to 6 hrs/day and after a month, she returned for a full day. The one caution is that l-lysine can increase anxiety. So I used tryptophan to counteract. We eventually stopped the lysine after 3 weeks due to her agitation, otherwise I'd have kept her on it a little longer.

 

Now, 3 months later, she is starting to complain about fatigue again but nothing debilitating and between allergies and some things we're doing for methylation, it's hard to say if it's EBV or just that we're in the process of re-balancing and this is a natural side effect. Will ask to have her titers re-checked when she sees the Dr in 2 months but for now, I'm working on the assumption it's something other than EBV. If it is EBV, we'll re-start l-lysine.