Update on my ds7 IVIG outcome

[qannie47]

We are in our 9th week post IVIG and things look good!!! OF these 9 weeks, my ds only had 5 bad days. Which mostly happened during week 7 or so....As of this moment, my ds has gone 14 straight days of NO Panda's symptoms AT ALL. One thing I did not expect to happen so fast was recover of short term memory. This has been a rather, "WHAT!", kind of moment for me. I have always just sort of thought of my son as a kindred "space cadet". But sure enough, recently he is remembering where he has put his things, able to better account for his day at camp, things like that...very interesting. The only thing that still is hanging around a bit is some bedwetting. However, I think at this point since it has gone on for so long now, his brain/body is no longer trained to wake-up. So I am going to buy him an alarm clock....if this is all we ever have to be concerned about...YIPEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Anyway, I just wanted to share our experience so far with you all, since I know when I was researching I was very interested in any info I could get about IVIG experiences..

 

Thoughts and Prayers for all....

[JoyBop]

Thanks fantastic!!! Thanks for sharing your great news!!!

 

Have you checked out the bed setting store? They have all sorts of devices and often times insurance will pay for it. Also ask your child's dr bc sometimes you can get an rx for some is of the items. I know a few kids that had great success with an alarm that goes off when the kids start to pee. There is an electrode that Sences when they get set and they are able to same up and to I their own in a shirt period of time.

[lfran]

If your child has MTHFR issues, then the right amount of methylfolate about 4 hours before bedtime might cure the night wetting. It's the only thing that helped us. The alarms didn't,although they help a lot of people.

[LNN]

So glad to hear about your success! Wishing you and your entire family continued healing and happiness!

[T_Anna]

So great to hear good news!

 

T.Anna

[pr40]

so glad, too. can you describe where your child was prior to IVIG? so that we have some of the history.

thanks

[LaurenK]

Im happy that your son is healing. It's interesting that he had the regression week 7 because I thought all the donor antibodies were supposed to be gone by week 6. The children who are having the regressions later interest me. I wonder why they don't react right away. Anyone have thoughts on this at all. Quannie, has your doctor told your anything in regards to that?

[qannie47]

PR40 some background. My ds was diagnosed almost one year to date of his IVIG treatment. He had his IVIG 6/13. Interestingly enough, he appeared to have finally recovered, (1 week of no Panda's symptoms prior to IVIG). This last episode, (his 4th) was not his worst, but pretty bad and lasted the longest. It was the result of a 6week of tonsillitis and then went right into two weeks of stomach flu. He just could not shake it and ended up in ER for dehydration. It is a bit of a blur,(he gave the same flu to his twin simultaneously) but this last episode started right after St. Patty's day, right after he threw up all over my carpet for the last time....It lasted until 6/8 (the Pandas). Then the calm....There is always the calm for him when it ends. Pretty much everything goes away overnight. He goes back to being a reasonable kid. Nothing out of the ordinary. I can almost feel the difference when I walk into the room. Start & stop. I KNOW. What has struck me is that the last two episodes, it is his twin brother whom has approached me and has noticed the difference almost immediately when an episode is starting. I believe his statements were, (both times), within minutes of waking, "MOM HE IS ACTING CRAZY AGAIN....CALL THAT PANDAS DOCTOR!!!"

 

LaurenK I did ask doctor K about the regression week 7....He did not mention anything about die off. He said that he believes that it is a part of the healing process and that we could experience the wax/waning until week 12. He did say, that usually, with the younger kids....a transformation of all symptoms gone are seen by week 8. I am not sure exactly what that means....when I have read up on the wax/waning, or healing process, it appears that nobody really knows......