Is it Possible?

[Rachel]

When your child started on long term antibiotics or IVIG treatment, did your child have more troubles with viruses or infections in the beginning?

 

I'm wondering when a virus or infection that is laying dormant in the body and the body starts responding to the IVIG or long term antibiotics if the body (cells open up) will start releasing these virus or infections. Is this possible? This may sound strange but I am wondering if this is what's happening to my son. He has had past testing that indicated strep antibodies and other viruses were present. His Anti-DNase B was 390and range is 0-170. This test was done in December 2013. If this stuff is being released, Could this be a sign of healing?

[qannie47]

I would not say a sign of healing..sorry. I know that dr k who treated matt made sure there were no hidden infections before ivig...as it could exascerbate them. Did your doc run bloodwork before? Because this was not an issue for us, I cantspeak confidently to the issue with ivig and hidden infections. What did your doc say? I do know that ivig does not guarantee no illness post treatment. Remember, ivig takes a year to strenghthen/repair misguided cells. I would not worry to much about him getting sick...more Important to see less flaring or less intense. That takes awhile as well. Have u done lyme testing? Also important, do steroids help? Good reactions in research indicate that a child whom responds well to steroid burst do well with ivig

[Rachel]

Yes blood work was ran and everything was ok. M son can do steriods for a short time only- no longer than a week. After that it will incresse his vocal tic. He did not have a reaction to the IVIG this last time when he was in the hospital but still had the bad headache afterwards and a virus 10 days later. Hoping the next round goes better.

 

He has been tested for Lyme and co infections. Everything is negative.

[qannie47]

That is great news. So I would not be concerned about the virus ten days later...Like I said, IVIG does not prevent illness, just manage what can happen as a result from illness. A headache is typical after IVIG. Dr. K administered ONE small dose of steroids to knock out the headache. He implied that it was very important to use if headache started. I never asked why, but the headache came exactly when he said it would, 24 hours later, so we gave him the steroid, and headache disappeared.

[Rachel]

I have never heard of giving a steriod for a headache. What was the name of the steriod given? I would like to mention this to our doctor and see if he would prescribe it for my son.

 

My son is feeling better today and his blood pressures are finally staying up again. I was having to give him 5 grams of salt just to get his blood pressures to stay up. This virus really played hard with his POTS condition. Today I have not had to give him any salt at all.

 

Having POTS and anti-neuro antibodies is not a good combination. My son should be having another LD IVIG treatment this next week.

[qannie47]

It was prednisone, if I remember correctly. I do not believe any doctor would ever order a steroid for a headache, but there must be something to Pandas/IVIG that correlates. Again, because it was a blip on my ds's radar, and it worked, I never bother to research that...

[Rachel]

I will ask about this. This brings major relief to my son when he has a croupy cough but he cannot stay on it for more than a week. I will do some research. I need to find out if dosage is regulated by weight.

[WorriedDADNMOM]

For us, in the preceding weeks/months(9 months running) before the proverbial excrement hit the fan, we were having, constant low grade fevers, neurological issues, psychological issues, tics, uncontrolled arm movements, head bobbing tremor or something like that. Initially it was the tics and psychological stuff, then several months later it was all the stuff listed above combined. Very scary for us.

 

For us, once we started the long term abx, we noticed a more normal responses to sickness. Example, our dd had very high response to cat allergy according to blood work, but never really itchy eyes or post nasal drip. Once we started zithromax, a few weeks in, there was a good amount of mucous let down out of her nose and sinuses. For us, it has seemed as if there is a more normal response......albeit small. Seems as if our kiddos exacerbate "Pandas style" as opposed to get sick in the normal sense. The exacerbation's have been smaller and less drawn out. But we are also doing a whole bunch of supplementation too.

 

We(I) am are beginning to feel as if another round may be beneficial. We are dealing with exposure to Whooping cough(earlier posting of mine). Same kinda low grade fever and behavior stuff coming out in worst Pandas/Pans kiddo.

 

Hope this helps.