hawks
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Posts posted by hawks
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You go momma - keep digging. Looks like you got some evidence and confirmation to keep doing just that.
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Dawn -
We will keep you in our prayers! From our experience Dr. T has been wonderful to work with. Hoping and praying that he can help unravel the puzzle even further for you all.
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How does one go about getting the Metametrix Stool Analysis done? Is this a test your LLMD ordered? Thanks
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Yes I agree I think there must be an initial visit in person. Just wondering if any do follow-ups via phone. Thanks for your reply hopeny.
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I am wondering if you know of any LLMD's that will do appts by phone.
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Tpotter could you pm me the full name of the Dr in Stephensville. Thanks
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We also were suppose to have an appt on the 17th for both of our sons. How did you find out about this? Could you pm me the information. Thanks
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My son has not been in my parents hot tub for over a year because we had suspected that he was getting an allergic reaction to it. Well he hopped in on Easter Sunday and we now know forsure that the skin reactions that he has had in the past have come from the hot tub. His face is covered in a rash and his eyes are swollen. My parents don't use chlorine but some other type of chemical that is suppose to be more natural.
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Great to hear such wonderful news.
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Such GREAT news! I too hope we can get our DS15 there. I also have thank you for your many insightful posts. You've been such a persevering momma and it has paid off! Happy Birthday Wishes
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Joan -
We have been working for a year now to get our DS15 out of the horrible 2nd exacerbation that started over a year ago. My son has made improvements from antibotics but still unable to attend school. The OCD rules. He wasn't able to finish the 3 week intensive program because the therpy was too much for him at the time - we are 10.5 weeks post #1 IVIG. Seeing ups and downs. Did insurance cover the ivig's and how far apart did you do them. I am glad you posted - I was wondering about your son. Thanks, Angie
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Tracy -
Go through thenmama's content - she has great ideas for appeals. Maybe she will chime in. Angie
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Here's another article that was on MSN's website.
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This can be such a puzzle to figure out. Just wanted to let you know that I will pray for your daughter and family.
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Praying. Hope you have a better outcome on Friday. Hugs!
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Who has done multiple ivig's - is your child considered immune deficient? Should one ivig work if your child is not immune deficient?
We were recommended to do multiple ivigs (3 or 4 HD ivig's)- but have never been told that our child is considered immune deficient. I assume that the doc's that we are working with would have pointed that out if that were the case. Is having an immune deficiency criteria for repeated doses?
Any imput here is greatly appreciated. Thanks.
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Thanks for information ladies! Very helpful.
LLM - thanks for the links - that should keep me busy for a while. Hopefully your new experiments work and your daughter will see improvements soon.
Kimballot - I think I will try the dose that you are using and work up from there if we need to. Is your DS still doing the IVIG's?
DS15 has been different doseages of Zoloft for about a year now and as I look back I wonder if some of the symptoms we had seen were indeed the drugs side effects as opposed to the PANDAS - as LLM noted about Nancy Fxcfer's post.
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TH- Thanks so much for the advice. We are going to go through the plan docs more carefully as you suggest.
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Kimballot and LLM I think you both use inositol. DS15 is just over 100lbs - wondering about dosage, brand and where to get? I think I read recently that it has worked well for your children. We are dropping the Zoloft and going to try this instead. I was also thinking of 5Htp if you know any thing about this.
If anyone else has experience with these supplements please chime in. Thanks.
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So great to hear of your good news!
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Thanks for posting this most excellent article!!!
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United Healthcare denied our appeal for additional doses of ivig. They state that they do not cover repeated doses for PANDAS. I know I have asked this before but have others had success getting more that one dose covered. If so, and you have any info that would help us I would appreciate it. Geez we even used a lot of THENMAMA's great info/advice for the appeal. Bummer.
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I agree - Flumist may have been a big part of our problems as well. DS had strep in oct 08, a flumist in nov 08 this is when things started cookin' so to speak and when our DS first excerbation occured. Wish I would have known then what I know now. His second MAJOR excerbation occurred starting Nov 10' after another Flumist. Jan 2011 he was diagnosed with PANDAS. NO MORE FLUMIST for sure!
Hyperbaric Oxygen treatment
in PANS / PANDAS (Lyme included)
Posted
Is this a treatment that insurance would cover for PANDAS or Lyme Disease?