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Hello... after a long time!


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I don't know who is still around this forum, but wanted to give an update. Hope many of you have had healing and lots of help.

 

 

My son, now 13, just received a high dose infusion after 8 months of denials and appeals. His first, a low dose, was back last January. I can't re-tell our whole story, but will do as best I can. He received 40 grams yesterday, and 40 grams today. All went smoothly. Anthem BC came through after two appeals. I think we had success due to a very emotional plea in the form of a four page appeal letter that spelled out my son's suffering nearly his whole life. Also, it was authored in part by four different physicians, and contained a great deal of documentation. I honestly think that the final reviewer couldn't read it and still deny with an intact conscience. Anyway, we almost missed the boat. My husband, who I am separated from now, never mailed me the approval letter, which came in June! The expiration date was September 8... and I only got the letter on the 6th. Fortunately, our local doc, a pediatrician with ZERO experience with anything like PANDAS, was willing to work his butt off over the past few months to help write letters and make phone calls, and get educated. He also brought the other pediatrician up to speed, which was great, because she was the doc to write the last minute order to our local hospital and get everything set up in two days time and we had only seen her once before! Amazing. So, while we were scheduled the very next day, we chose to wait until yesterday to have it. They gave my son a private room in a short-stay wing of the hospital, and he had infusion over six hours. We went very slow to avoid the complications that he had last time with headache and nausea.

 

 

After his low dose infusion in January, the remaining OCD that he had, anxiety, and echolalia stuff went away. His trichotillomania (he has no eyelashes or brows to speak of since age 7) stopped for two months, but then resumed. I was hopeful that a high dose IVIG would stop it finally. When we didn't hear back from the second appeal, I gave up. I brought my son in to the pediatrician last week (the day I learned of the approval) to put him on Zoloft for the trichotillomania. When the ped. said she could get him in to IVIG the next day, she told me to wait on meds. to see what happens. I don't know how this will hold up, but my son told me today, that last night he went to sleep without feeling the urge to pull his lashes. He said he "could just lay there." I don't really think it could work that fast, but it was interesting that he offered that when he is NEVER willing to talk about the problem or his urges, ever.

 

 

Anyway, that's pretty much it. He did very well all year last school year, but fell apart again in June- three weeks till end of school. Some of his re-reading OCD had come back. He does tell me that it is still somewhat of a problem, but he is dealing with it well, and it may clear up altogether now. I will give another update in a couple of months after we know how this has affected him.

 

 

Wish you all well,

 

 

Mary

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I pray that this brings healing for your son. We just finished our second HD IVIG for our daughter. Her PANDAS specialist always does 2 of the HD IVIGs about a month apart as her protocol. We are now one month out and started to see changes last week and now this week things are much better. We still have a way to go, but I am optimistic that we are in a healing phase. It's great that you were able to get insurance on board. We appealed 3 times and even went to the national appeals committee but there was no one with an ounce of heart anywhere for our daughter. Please keep us updated on your sons progress.

 

Dedee

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HI Mary,

I was hoping not seeing any posts from you meant that things we good. Sorry to hear he regressed, but I'm happy you were able to get him in for IVIG so quickly and get it covered. I DO believe that it works that fast. Our first HD IVIG I saw a minor tic (I'm not even sure he was aware of) disappear the first day. He also wanted to go cloths shopping (we were stuck near some mall near Dr K's office) and buy two shirts - and he though he looked good in them - this after being hyper critical of how he looked for about 3 months prior. For us, the healing came in waves - so not a steady line of improvement, and indeed sometimes I would think he was regressing, only to see him better than ever a day or two later. Hang in there. And thanks for the updates.

 

We are doing OK (but not great) since HD IVIG #2. Not as big of a difference as the first time, although DS wasn't as bad off as he was at first. He has return of some symptoms in past month since school started (I am making separate post on that) , but there are not as bad as before. Debating net step.

 

Thinking of you! Keep up the Advil if you are on that - for at least a couple days - and do not hesitate to give him steroids immediately if the advil isn't enough. My son has horrible reactions to IVIG. MIgraines and nausea for 7 - 10 days. I hope your son fairs better. For us it starts the night of the second infusion, to two nights after. Its weird. but being ahead of the pain curve helps.

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