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Kayla's doing really well

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14 years 8 months ago #11144 by Kaylas mom
Kayla's doing really well was created by Kaylas mom
So I feel like we have been hiding from ITP for these last 4 1/2 months(knock on wood). She has had counts in the 100's. She is really enjoying this very welcome VACATION from this crazy roller coaster.
Not sure how were getting these awesome counts but I'm not complaining.

I am a mom who always has a theory, and my new ones are:

1. no chlorine since Aug. which was her last treatment (we have a hot tub but it has been broken)
2. reducing the plastics, and BPA exposure in our foods.

We had had a urine test done with a natural-path, and it came back that her phalate (plastic) level was critically high. So we have stopped heating anything up in plastic, glass only, and even stopped using plastic sandwich bags. We had stopped with the plastic bottles quite awhile back. Recently we learned that BPA can be an endocrine disruptor.
I am no doctor(I don't even play one on T.V.) but thought I'd share my crazy theories with you.

I'm sure all of you are constantly questioning EVERYTHING, and asking what is causing this. I know I am:-)

My with for 2011 for all of you is plenty O' platelets:-)

Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #11174 by tacmom
Replied by tacmom on topic Re: Kayla's doing really well
Glad to hear Kayla is doing so well and that you feel like you've pinpointed the reasons for her low platelets.

It seems like alot of our kids who were struggling the last year or two are at a point where they've stabilized or they have counts where they are able to do most of the activities they want which is great! I hope 2011 continues to bring us parents "sane" counts so we don't have to worry so much when our kids want to have a daredevil moment! (In Caitlin's case, I think it is 24/7!!)

I would post a picture, but I don't know how...I'm sure I will figure it out eventually!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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14 years 8 months ago #11607 by SamsMom
Replied by SamsMom on topic Re: Kayla's doing really well
Krissy,
I'm so glad and happy for you and Kayla. Sam has had about a year of the same and now that her counts are trending downward, it has me worried and running to find why. How did you search for the naturopath and are there specific tests we need to request ?

Kathy
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14 years 8 months ago #11612 by Kaylas mom
Replied by Kaylas mom on topic Re: Kayla's doing really well
I went with a family recommendation. It is no cure for the ITP but we are trying to calm her system down. They also have some great western medicine too.
We did a urine Tox screen. It looked at all sorts of different toxins in her body and showed what levels they were. We had to pay out of pocket $115. But I do feel it was worth it as it gave me something I could control:-)
Good luck to you and I will be thinking lots of Platelets for you:-)

Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #11624 by SamsMom
Replied by SamsMom on topic Re: Kayla's doing really well
Thanks Krissy, we will ask around and find a good one here. I figured as much about the out of pocket :-( . I understand it's no cure, but given the idiopathic nature, I'd pay a 100 bucks to get some clue and this seems like a good avenue. Having been born and raised in India, homeopathy and naturopathy are very familiar and something my parents resorted to for minor ailments with us when growing up - colds, indigestion, nausea et al.

Again, thank you. Appreciate it..
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