T.Anna- your son post-pex? How is he doing?

[LaurenK]

Just wondering if the Pex was effective and how he is doing? Hope all is well.

[T_Anna]

Ehhh! We have seen some improvement in mood and ability to come back from a angry moment quickly, but still have some time before we give up about progress since it seems to sometimes take time. I know there is some improvement because we are being more honest with what he should be doing to help himself and he is able to hear it better.

 

Concerning issue is that his thyroid levels have been dropping and PEX is supposed to raise TSH because it removes T3 and T4 and his have continued to plummet. Ran tests Friday and have two endocrinologists ready to look them over.

 

Thanks for asking,

T.Anna

[trintiybella]

"being more honest with what he should be doing to help himself and he is able to hear it better."

 

 

Anna...I can so relate to what you said above. Nobody understands me when I explain this symptom.

[PowPow]

I read about the smithereens karaoke

Anything else you are noticing?

Ivig today?

[T_Anna]

Thanks for asking. Yes, the nurse is coming for second IVIG today. We may also start beta blockers today (Proponlol 10mg x2 day) to help with the hyperthyroid.

 

I am excited since it finally seems as though we have more answers and that things might be working (please God). However, I'm also very nervous about a few things:

 

1. Did PEX really work? So far mood is definitely better, but OCD is still so entrenched nothing seems to have shaken free yet. He still only eats certain food on certain days, no bathing, etc.

One hopeful sign: yesterday his friend was here and had to leave so that his older brother (18) could get into Legoland (unattended adults are not allowed- so the 15 year old brother pretended to be 13). After they left DS said "I'd go there!" Usually he is very fatalistic and stresses that he will never get better and "do" things, so that was hopeful.

 

2. Will IVIG help the way we want (give his immune system a boost)? I need to re-test siblings, they just finished abx for strep. I should prob take them to the clinic to be cultured (rather than just the rapid strep test).

 

3. Will the beta blockers help with the sweating and palpitations? DS is gummy, sweats lately and has palpitations (all these have been increasing as the thyroid numbers go down).

 

4. How can you tell if the anxiety is from thyroid or PANDAS? I think someone on the forum said once that if it is A or B it's probably C =for all the above.

 

Thanks for asking, sorry this hot long. It is rainy and stormy outside, so maybe that makes things seem more dramatic.

 

Thanks again,

T.anna

Edited August 22, 2013 by T.Anna