PANDAS worse B4 better after IVIg?

[tkageler]

Thank you for your reply and sorry it has taken me so long to reply. Has your son started to show any improvement yet? We were on vacation for the last 10 days and while we were on vacation we got word that our insurance approved the IVIG for my son!! I don't know how. Keller was able to do it, but she is the answer to our prayers. We travel to Seattle next week....cross your fingers that it works!

 

I have heard that the reaction and side effects from IVIG can vary greatly depend on the brand of medication used, so it is nice talking to someone who had the IVIG done by the same Doctor. How did your son feel while in the hospital and after he went home? When he had the reaction to Benedryl, was it given thru IV? My aunt has IVIG done every 2 weeks and she said that she has a AWFUL reaction to Benadryl if it is done thru IV, but she is fine if she just takes the pill. Thanks so much for your responses and good luck!

[cobbiemommy]

What about a Streptozyme titer? My son never swabbed positive as he got older, but he had strep hiding inside the skin of his nose. Intracellular strep. He tested positive with the Streptozyme titer, even though all of his other titers were negative or in the normal range. Also, we had his Streptococcal titers run and found he has no immunity to strep.

 

This could be part of your total picture. Welcome to the group. These parents are so smart and caring.

 

Cobbie

[bulldog24]

My son is much worse after his infusion a week ago. I was told this is normal and to be expected. It willlast a few weeks

[kimballot]

My son had a very bad exacerbation after his first IVIG. However, he was 14 at the time and has had PANS and chronic infection since he was a toddler. I really cannot say for sure what helped, but we did do lots of charcoal to help with detox, lots of water with lemon. Some folks on the forum use bentoniet clay. You can search for either in this forum and get threads on how folks use it.

 

Also we saw a lyme doc who changed his antibiotics so that they were abx that also treated lyme. He also did not test positive to lyme no matter how many ways we tested him, but we knew he had some type of underlying infection. Fatigue was an issue for him, however, so he is different from your child in that way. The lyme abx seemed to help (doxycyline and azithromycin).

 

Best wishes.

[Joan Pandas Mom]

Sorry you are going through this D's Mom. I would look into another IVIG. Hit it hard and often. As many have experienced here, it does get worse before it gets better. I remember hoping and praying that after that first IVIG, things would be back to normal. It takes a long, long time, but eventually healing does occur. Remember, this might take a while, but it isn't a permanent state.

[Burnell]

The symptoms can get worse for 2 weeks following ivig. Then weeks 3-4 shoudl see improvement. The ivig antibodies only last 4 weeks. You may need a second ivig at week 4 and at week 8 so that you do not lose the progress made. We see Dr Smith in Edison NJ