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I was way too upset to write yesterday...

 

We finished the second IVIG on Friday and on our trip home from the hosp DD sang the entire way. She never sings. She was clearly a different person. If I had to judge the IVIG on that car ride I would have said it was a success. We went back to the ped Sat morning for the 3rd dose of the IV abx and the ped removed the IV. Again, I would have said she was a transformed child. DD missed her real b-day and that day was supposed to be her party. We had cancelled it but all her presents were at the house and the cake, etc. Just before we started "the party" (our little fam and grammy) we told her no about something and she went nuts. Biggest rage to date or so it seemed.

 

From therethings were absolutely terrible. All of Sat night and then again all day yesterday. DH and I were flabbergasted. Howe could IVIG work for 12 hours and then simply suddenly shut off???? We still had 3 doses of Diazepam and the ped was fine with us using it so we gave her a dose of it yesterday morning. It certainly heped but didn't "fix" her. We basically just waited for yesterday to end.

 

Now here we are again awake for a new day. I could just tell when we woke up that she is different. Who knows what level she is at this morning, but I can tell that she is slightly better. This is very different than what we saw the first 2 times we did the IVIG. Those times it worked instantly and completley.

 

That's all for now...

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While we have only done IVIG once (without antibiotics), it was definately an up and down journey for a good few weeks. My other children were so disappointed because they had thought it would make their brother better immediately. I so know how it feels to wait for the day to end. Hang in There!! Maybe this will be the time where it will not work instantly, but will work completely for the long term!

 

Take care!

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Hi, I just wanted to let you know that we did IVIG on both our twin 5 year olds 5 weeks ago. The first week my son's rages were worse than ever. I was devistated. They seemed to go on all day every day. My other son was slowly (very slowly) seeming better. On the 8th day, things changed. We have not seen any tantrums since then although there have been a few days when I could tell (and feared) they were falling backwards just a little then suddenly they were fine again. Some of that I believe is now "learned behavior" and we are trying to unravel it all.

 

Hang in there. Apparently it is a process and not as much of a quick fix as we all hope. Or at least it is not that way for some of our kids.

 

At this point, I am looking at weeks that are good on the whole and not counting the days too much as that was driving me nuts!

 

Best wishes,

Kari

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Today is a Do-Over day! New Day! Hang in there!!!!

 

SF Mom said that Corsa was having a sensation in symtpoms and luckily they had a IViG already scheduled as a follow up with Dr. K in Chicago. She said after IviG number 2 Corsa was mega hyper. Maybe Corsa and your daughter had IViG done during a episode. Since we really don't know what is going on inside their little bodies.....perhaps as I like to explain it to B, the Pink Pac Men (the good ones) are raging to eat the Green Pac Men (bad guys)....maybe it's a good thing and Pink will win this time! Think about it like how they rage every time they get sick...just reverse order of Pac men occurs. I don't think the IViG shut off, what if it's working? What if it's shaking things up in there?

 

Belle is one week out from the steroid boost. She was a different kid last week. Processing everything. Yet she had a fever on friday, today she has a mild cough and had a rage this morning not wanting to go to school, I'm the worst mom ever, etc. I did motrin, Zithro like everyone says to do. It helps, but I can tell the steroid is wearing off. I have to have faith that if we start homeopathy on Wednesday to detox her system and rebuild immunity and start rounds of IViG with IV ABX we will eventually get rid of the deposits Dr. K explained to Corsa's mom are still present in the basal ganglia. What if like a staph or strep infection on the skin, the deposits in the brain are going to take multiple rounds to inilelate? What if it's layers of deposits we are peeling back and the nasty bugs are now being shaken up? You have to continue fighting them and it seems that IViG with IV abx would be a great way to do that. Remember the last time you did not have the IV abx right? What if they IV abx needs to stay in longer?? I have a girlfriend that just came off a breast infection from a cancer surgery. The Infectiuous disease guy in Seattle left her IV in for 30 days two rounds. What if it takes that long to kill these bugs/deposits? You said her she spiked into rage after the IV was taken out.......

 

Keeping you all in our prayers

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PS. I talked to Dr. Keller on saturday about Changing B's meds from Zithro to Augmentin XR. She is getting with the pharmacist to get the correct dosing for her (45 pounds 6.5 years old) and we are going to try it as the Zithro made only a differnece the first 8 days then stopped. Have you guys tried other oral antibiotics?

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Falling Apart:

 

I once heard (this could be just a rumor) that one of the leading PANDAS doctors said that the kids who are instantaneously better after IVIG usually have a harder time down the road. His theory was that they really needed that IVIG. Our experience has been more of the bumpy road. So, I try to think of this as "healing" moments!! We were told to expect some definite rough times post IVIG and the brain takes a year to heal.

 

Will you be doing monthly IVIG now?

 

Elizabeth

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Hi ELizabeth,

 

Yes, the plan will be to do monthly IVIG. The only question we all have is whether, or for how long, she will need that. Since we did PEX, will she reall NEED monthly IVIG? We thought PEX was supposed to be the cure. Of course we will do whatever is necc but we are wondering if she will need a full year of this or not.

 

Surprisingly, yesterday continued to be a good day overall. There were still some pis$ed off moments. But DH and I were able to deflect them. We didn't used the diazepram, she took a nap on her own and went to bed with only melatonin at night.

 

She did wake up last night and come to our bed and was very restless. I could tell her mind wanted to sleep but her body couldn't. Her eyes remained closed but her body was thrashing everywhere. I decided to try some Benadryl and she is still alseep now. She needs to get up though because we have our Immuno appt this morning!!!

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