IVIG approved

[bronxmom2]

I hesitate to post about this, but I am just so surprised, I wonder what people think.

 

A few days ago I went to the Dr. because of a sinus infection that has not cleared after two rounds of antibiotics (It was caused by exposure to mold a month and a half ago-- so I was also looking for information about my allergies)-- anyway I mentioned how I'd felt fine but on the antibiotics but the sinus infection came back within hours of stopping... and then how two days later I'd experienced alarming psychiatric symptoms.

 

Now his office has called and I am already approved for IVIG.

 

I am now tentatively scheduled to do it the same day as my son!

 

I know they are doing a lower dose... the amount she mentioned was less then 1gr/kg. I think she said they were going to do it every 3 weeks. I was so surprised I didn't even ask any questions. I didn't want to sound ambivalent.

 

I am happy but a little confused. I can't help but feel guilty for hogging precious medical resources. Also my husband is being really annoying. He thinks the whole thing with my son is very suspicious (snake oil) and now I'm going to do the same thing (abx and IVIG)... let's just say he is not being supportive. And he's irritated that he'll have to use a vacation day! (I can just imagine how he'll react when I tell him it's every 3 weeks.)

 

Does anyone know anything about what IVIG can do for an adult with chronic infections/immune system problems... so that I can know what to expect-- and also, convince my husband?

 

For example is there any reason to think that fixing my own immune system problems could help my PANDAS son and wipe out the chronic infections that have haunted out household for years?

[norcalmom]

You deserve to feel better. You should not feel guilty. Keep us updated on how it goes!

[Mary M]

1) Your insurance co would not approve it if they did not consider it a valid treatment...just consider how many here have not received approval and have paid out of pocket.

 

2)Do not feel guilty, you need to take care of your health.

 

3) We have two unrelated friends who have both been treated with IVIg for immune issues over considerable periods of time...one had her treatments over 25 years ago and hasn't required them any more for decades. This is not a new treatment...and it has been proven to be effective for many immune issues.

 

4) Re: fixing you to fix him...I have nothing but anecdotal evidence BUT...when all 5 of us were tested for strep (after begging and pleading for months and finally simply stating that since we were paying so much for IVIg it seemed cost efficient to check everyone for strep so that our dd didn't return home just to be living in a strep zone) we discovered that my dh had elevated titers. While he was on abx, MY eczema disappeared. When his 10 day course (that's all we could get the first round of abx) were over...MY eczema reappeared. When his titers were redrawn 6 weeks later, his titers were still elevated and I still had eczema. He went back on a bigger, 30 day of abx and voila MY eczema went away again. So perhaps IVIg may be helpful for everyone in your household.

[EAMom]

Congratulations on your approval...let us know how it goes!

[Priscilla]

Did you have any labs done that results state you would need ivig? I would be a bit suprised that they jump to that without any labs. If so, go for it, I hope you feel better. I often wonder how many adults are afflicted with this as well. I am very interested about what you said about the mold though. I live in an area known to have stachybottrus mold (I am SURE I spelled it wrong). Long ago I saw a show (I think it was mystery diagnosis) where a child kept suffering from severe illness, asthma (cant' remember, but maybe even psych symptoms!) It was all due to a mold growing BEHIND the sheetrock of their home, not even visible. Makes me wonder if this could be yet another trigger for PANDAS/PITAND hmmmmmmm?

[bronxmom2]

Thanks guys.

yeah, I had a full immunological workup done, maybe six months ago, and it matched my son's remarkably... the same IGg's (just under normal) and the same failure of 13/14 pnuemoccocal titer's... also something abnormal with the T cells. At the time, this did confirm my personal suspicions but the Dr. did not seek to think it was significant... then when I reported a sinus infection I couldn't clear and very sudden psychiatric symptoms... he said perhaps we need to treat you too.

 

The mold exposure was at my sister's.. she'd had flooding earlier in the year and proudly announced that they'd closed all the windows and put on the air conditioning before we arrived. I knew as soon as I stepped inside that something toxic was in the air, but I did not want to hurt her feelings and sat down to dinner. I don't know that this in itself would trigger PANDAS but it certainly causes an infection, which does trigger PANDAS.

 

When I say I feel guilty I wish I could give my approval to a kid who's family can't get treatment... treating the kids is so much more important.

 

BUT if I go into with the spirit that perhaps I will help my own son's recovery...