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DS was subdued during the first week but his tics, which had greatly subsided, increased. Perhaps b/c he had undiagnosed lyme and removing antibodies wasn't the right thing to do. But he improved a little each week for the first 6 weeks, then plateaued. Then he spent a lot of time with his BFF who had strep 6 times in 3 months until the BFF finally got a T&A. 4 months after Pex, DS was back to where he was pre-Pex. So DS's experiences aren't a good indicator for you.

 

Has your DD just had this? Or are you contemplating?

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One week for one daughter - 50%better.

75-80% over the month post pex

 

Second daughter (sicker, longer) improvements not noted until 3-4weeks. Apparently, that timing is scientifically explainable, per our Dr.

The one month improvement for her was the timing both times she was lucky to get pex.

Praying, T.mom

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Hey T-

 

Hang in there! I would say our experience mirrored Pow pow- we saw some immediate changes, but most improvement took place by the end of first month. We did therapy during this month to help dd let go of ocd. Therapy was SO easy at that point, but I do think needed.

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Thank you all--this Friday it nwill be two weeks since the last day of pheresis.

 

Initially we saw clear improvements, and it seemed she was getting better.

However this second week her OCD rages are over the top when they happen, though there does seem to be more time in between, and it is not 24/7...she is at home with us, which she could not be for the 5 weeks pre-pheresis, so that may be an issue of course. Regardless, I am hoping and praying that it will be the good result eventually.

 

I have wondered about5 episodes of pheresis (ie NIH study) and the three that we had done.

 

My older d had pheresis 18 months ago and is now 110% -- and I attribute her recovery to the pheresis and getting through puberty. She is 15, and had 3 pex treatments.

 

Has anyone ever talked about a worsening prior to recovery with pheresis? Like the "turning back the pages/"

 

I hate this.

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Mdmom we were denied by our insurance -- We then appealed to the state of MD and the state over turned the denial. The insurance code was post infectious encephalitis and the diagnosis PANDAS

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  • 6 months later...

I am new so to this site. Unfortunately not new to PANDAS. We have been battling for 2 years. My daughter had plasmapheresis last week. Last day of treatment Thursday (three sessions not five). I am wondering how people saw the recovery come. I have not noticed a change yet and she is beginning to get depressed as she does not feel any better. I want to reassure her that it can take however many days or weeks. Feeling very alone and desperate to see a change. Her first IVIG was a miracle and she was 95% back to normal. Second IVIG no change at all if anything she continued to get worse. Any insight from parents that have done the plasmapheresis would be much appreciated.

On a separate note our insurance denied the procedure, then we appealed. The appeal was denied so we appealed again with an external review and the denial was overturned. I would be happy to give anyone who needs it the info that was used for the last appeal.

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We saw improvements at 3-4 weeks. Significant, quantifiable but she was still very sick. She had pex .twice and each time it was almost a month.

I have another daughter who had pex much quicker in her illness and she had major improvements by one week and near total (temporarily) remission by one month or so.

how old is your child? How long has she been sick? Psych symptoms?

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Powpow thanks for the info. I feel so alone in this all the time. My daughter has been sick since May of 2012 so it will be two years this May. Her first IVIG was last January she got better in about 8 weeks then relapsed in September. The relapse was way worse than the initial onset. The first time she was able to stay in school. This time she has been out of school since the end of September. She just turned 9 when it started. Her biggest problem is extreme anxiety, fear of people throwing up. With her initial onset she also had severe anorexia. This relapse no anorexia , probably because she is home? Not sure. There are other symptoms (frequent urination) but the anxiety is keeping her out of school, really keeping her from leaving the house. When the pandas symptoms are gone she in a completely different child. Trying to stay positive and patient but as I am sure you know it is very hard. Are your kids ok now? How long were they sick before they got PEX treatments? Did you try medications like Prozac along with the other treatments?

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only have a minute-but qquickly

They were 10& 1/2 at onset about a year and a half apart.f

One got sick in aug 2008. Steroids in may 2010. Ivig may 2011. Pex 7/11 & 10/11

2nd sick 10/09 steroids7/10 pex 1/11 ivig 5/11

1st is 90%

2nd is 100%

After many attempts at diff meds, they both took clomipramine for ocd. 2nd is off everything for close to one year.

1st is on clomipramine, augmentin and cellcept; still getting monthly ivig and iv steroid for autoimmune disorder.

Specifically, prozac and luvox were disastrous. Terrible.

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Jackalibeth--

I saw your questions on this thread earlier today and PowPow's comments and wanted to add our experience -- especially as I started this thread in the summer with a question I can now answer!

 

:). -- this thread started as a rather desperate mom (me!) had just gone through essentially the hardest year of her life with a raging, house destroying OCD episode with a 13 year old d.

 

If you look back you can see we were desperate for a long time--as severe OCD and tics morphed to raging ODD, aimed at the family ...

 

My d had a similar episode 2 years prior and IVIG had an awesome effect -- then when we tried it a second time , last year, which was two years later-- she became worse with IVIG...so we did pheresis in June (soooo thankful for Dr L!!)

 

I started this thread July 2 as I was worried -- post pheresis .. Our experience since that time had been the "typical" sawtooth recovery , as she has shed the raging, the OCD , the violence towards us more with each passing week. She started back to school in Sept,

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