IVIG in, now what?

[Kimflow]

We had the first IVIG yesterday. Now I feel like : NOW WHAT DO I DO?

 

Just sit and wait........I am so used to the past several months beging the amazing race to find help, that now to sit still and wait to see if it helps feels strange.

 

We continue on two antibiotics, two antifungals. Waiting on igenex results in about 14 days or less. How long did it take to get your igenex results back?

 

Do I pursue better methylation?

Do I pursue other options like l tryptophan or inositol? I won't know then if it was the IVIG that helped or the supplements????

 

Thanks for your thoughts on what you all did.

[cobbiemommy]

I can't help other than to tell you that we are in the same boat. There used to be a song that said that "Waiting is the hardest part."

 

Try to distract yourself in whatever ways that you can. Also, keep up the liquids and rest.

 

We are two and a half weeks in and the only change I have noticed is that he has a rash on his hands and that his ears have stopped leaking yellow fluid all the time. (Gross, I know.)

 

Cobbie

[minimaxwell]

It took us about 10 days to get Igenex results back. We had them drawn right before her 2nd lVlG and 3.5 months after the first. Now we had to add another test $100 for more accurate results on band 31. We also met with Dr. greenblatt for Methalation issues since we also tested positive for MTHFR. Dr. G is expensive and testing he does is also $$$. We are having genetics team at MGH run the tests (organic acids) instead. Perhaps not as sensitive as Great Plains Lab that Dr. G likes but can't justify spendind an extra $600 now.

 

Waiting is indeed the hardest part. We are starting B12 injections..will not know which is helping but at this point I just want her back to baseline. Anything that can help..bring it!

 

Who is your PANDAS Dr?