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brooke

By brooke
in PANS / PANDAS (Lyme included)

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brooke Contributor

brooke

Posted
Posted

To all Fellow Sufferers!

 

My son just returned home from Plasma Exchange at Georgetown. We had few glitches with our three rounds of treatment. (He had done IVIG in July with dramatically improved symptoms about six weeks post IVIG. Then placed on Augmentin 875 twice a day.)

 

My little boy is Happy (Capital H!!!) , he has said on multiple occasions since his treatment. We have had no incidents of OCD/Anxiety, emotional lability, sensory defensiveness, or rages. (much of this had improved post IVIG but we had many breakthroughs and his Chorea was still prominent) Fine motor is still off, but we will watch closely over the course of time. He is a little restless, but is now out playing in the snow, and had no issues with putting all of the snow gear on! :lol:

 

I will keep you all posted as the days progress with more challenges still in store I am sure. My 17-year-old (also diagnosed with PANDAS) is on prophylactic Azithromycin.

 

I am also compiling a booklet with pictures of his experience with PEX if any of you out there is planning this procedure.

 

After this almost two year nightmare, I may actually have time to just breathe, and just maybe I can catch a glimpse of life as it could be!

 

PS one day I will recount our story. It is a painful one, and has changed my little boys life forever. But now I will focus on the positive that has been the gift I have received!

 

Thoughts and prayers go out to all of you! I hope that I can use the little strength I have now to give whoever needs it a boost as many of you have done for me!

 

All of my Best,

 

Brooke

melanie Veteran

melanie

Posted
Posted
Wonderful! Please keep us posted.

 

 

 

WONDERFUL with a capital W

 

Ok why did you do the pex instead of the IVIG again? How and who did this ? Was he immune comprimised?

 

Melanie

matis_mom Mentor

matis_mom

Posted
Posted

How encouraging for all of us to hear! I am so glad for you and your family. Maybe that'll be us one day... We are half-way through the steroid burst, not seeing any improvement yet. I guess we all hope our child will be one of those who gets better with just the abxs... then we think, well, maybe the steroids will bring him back. I am starting to resign myself to the fact that this will take a while, and it's so less daunting when I hear success stories like yours!

 

How's your older son doing?

 

Also, about the OCD, are you doing any therapy? Reading your post I realized my son also IS much happier now (on Augmentin and steroids), but the OCD is still there, and I wonder how much of it is just habit. We've been meaning to start working on it, but it doesn't seem to bother him as much as us (I guess that's kind of good, he still doing the rituals, but not half as anxious about it as before, if you know what I mean). The problem is to do BT, it has to be his decision to start working on it, and he's not there yet...

 

Anyway, I am very happy for you! What a wonderful Christmas present for the whole family!

 

Isabel

dcmom Veteran

dcmom

Posted
Posted

Hi Brooke,

 

I am so happy for you and your little boy! It is so great to see them happy again. With pandas, my priorities really got put in order, and my main goal was just to make sure that Julia's days were as happy as possible.

 

Keep in touch!

 

Eileen

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