JenniferG Posted January 4, 2011 Report Share Posted January 4, 2011 Hi I am new to posting to this forum. My daughter is 7 and was dx PANDAS last year. Titers normal. Abx work well. Twin 3 year old brothers with a lot of strep throats. She is on Azith 200mg/day and bumps up to 2xd when the boys are ill. I give her probiotics also. Any other ideas? What does Oil of Oregano, Curcumin and Olive Oil Leaf Extract treat? I also give her Fish Oil supplements. She was at the top of her class last fall (09) and by Christmas was in extra help reading. OCD, anger, hitting, screaming, unable to make a decision (1+ hours) to pick out jammies. We had a really great summer, but then once she went back to school, it's been downhill. We see Dr. B in Stamford, CT. He is suggesting IVIG or Tonsillectomy. ENT says T & A too risky with hx of anemia. We are truly at the end of our ropes with patience. Any suggestions would be greatly appreciated!! Thanks. Jennifer Link to comment Share on other sites More sharing options...
amyjoy Posted January 4, 2011 Report Share Posted January 4, 2011 Are you considering IVIG? Link to comment Share on other sites More sharing options...
JenniferG Posted January 4, 2011 Author Report Share Posted January 4, 2011 Are you considering IVIG? Yes. Link to comment Share on other sites More sharing options...
Fixit Posted January 5, 2011 Report Share Posted January 5, 2011 what is the history of anemia...family or her specifically is it her... can't they check that????? This is just my opinion...and what i am doing... the main ds who i used to post mostly about had a ta in sept... 1 to see if that alone would heal him...as there are reports of such and i believe Pmom just posted the a similar story.. ..it seemed like it was working then not..then house hit with strep..better again...we may be trending better?!?!? jinx, jinx, double jinx...knock on wood, table, head(now that that is done ) 2 i didn't want anyting to hinder him,or regret not doing it, as we are in line for a big gun...may wait...as waiting on confirmatin if lymes dh just had tonsils out tuesday as an adult..it is a much tougher recoervery....but he gets strep 3 times a year...so we are doing it for dh and to erradicate strep from house.... I think it is an important part of the puzzle....but that is me...i don't want to backtrack... however if bleeding is a concern....i would definitely be leary too.... it sounds like you are dealing with alot...have you tried a steroid taper...some kids completely remit with that...or for us, got us to a much better baseline....until the next decision... Link to comment Share on other sites More sharing options...
JenniferG Posted January 5, 2011 Author Report Share Posted January 5, 2011 what is the history of anemia...family or her specifically is it her... can't they check that????? This is just my opinion...and what i am doing... the main ds who i used to post mostly about had a ta in sept... 1 to see if that alone would heal him...as there are reports of such and i believe Pmom just posted the a similar story.. ..it seemed like it was working then not..then house hit with strep..better again...we may be trending better?!?!? jinx, jinx, double jinx...knock on wood, table, head(now that that is done ) 2 i didn't want anyting to hinder him,or regret not doing it, as we are in line for a big gun...may wait...as waiting on confirmatin if lymes dh just had tonsils out tuesday as an adult..it is a much tougher recoervery....but he gets strep 3 times a year...so we are doing it for dh and to erradicate strep from house.... I think it is an important part of the puzzle....but that is me...i don't want to backtrack... however if bleeding is a concern....i would definitely be leary too.... it sounds like you are dealing with alot...have you tried a steroid taper...some kids completely remit with that...or for us, got us to a much better baseline....until the next decision... Link to comment Share on other sites More sharing options...
JenniferG Posted January 5, 2011 Author Report Share Posted January 5, 2011 Anemia....she was really sick with fevers and sore throat (now we know it was strep) lost 15% body wt...she is very small...7 yo and developed heart murmur. Tried steroids...she can't handle them Big guns? IVIG? Link to comment Share on other sites More sharing options...
dcmom Posted January 5, 2011 Report Share Posted January 5, 2011 Why couldn't she handle the steroids, what happened? What was the dosing, and her size? Steroids have been lifesavers for us... Link to comment Share on other sites More sharing options...
airial95 Posted January 5, 2011 Report Share Posted January 5, 2011 As far as supplements go - try cranking up the Omega-3's. They're antiinflammatory. Our son won't take any of the high dose supplements, but we found a "chewie" (like a starburst) at the grocery store that has 100mg that tastes good, and we add flaxseed meal/oil to many of his foods and buy things fortified with it. It does seem to help. And if no one has mentioned it, in times of severe outbursts/issues, a dose of motrin seems to help kids with PANDAS - reduces the inflamation in the BBB. It's been a miracle drug for us on our journey!! Link to comment Share on other sites More sharing options...
mom love Posted January 5, 2011 Report Share Posted January 5, 2011 I know a T&A is a very hard decision. We decided to do it for our 8yo and I don't regret it. Couldn't you have the docs check for anemia, monitor it, schedule the t&a and check right before surgery? Just a thought. Have you checked for mycoplasma pneumonia? Are you out east since you see Dr. B? If so, have you checked for lyme? Also, I am discovering a problem with salicylates in my younger. I have removed them and his frequent urination and separation got better. Just a thought to research and possibly try. I think there are lots of triggers for our kids once the damage has been done. I second the suggestion to try motrin dye free. Link to comment Share on other sites More sharing options...
JenniferG Posted January 5, 2011 Author Report Share Posted January 5, 2011 I tried the Motrin this last time and she responded wonderfully. The ENT said she could still get strep throat. So, what would be the purpose of a T&A? Her tonsils are always large....maybe strep or other junk just lingering in her tonsils and adenoids? We are waiting for an EMLA script to get more labs..M. Plasma and Lyme. Having a hard time getting it. I will boost the Fish Oil. Thanks for all the advice!! Link to comment Share on other sites More sharing options...
thereishope Posted January 5, 2011 Report Share Posted January 5, 2011 (edited) Welcome to the forum!In regards to t and a, yes a child can still get strep even with t and a, but it can also lower the chances. Some kids on here go on to have chronic strep, others it helped with symptoms. My son had t and a in Feb 2009. Strep again in late March 2009 but has been strep free since then. I see it as I have no idea how many infections it prevented or will prevent. Tonsils are a hiding place for strep. If they are large, they can continue to cause problems for her even as an adult. The younger you are when you have them removed, it suppose to be an easier recovery. As for the anemia, I agree with the others to get that tested. T and a is not so important to put her health in harms way if she is anemic and surgery becomes dangerous. When all of this resurfaced, did she have a confirmed strep infection then? What antibiotic and dose was she originally put on for an active infection? Even though Zith works for some people, others have luck with different antibiotics. Switching antibiotics is something to consider. Edited January 5, 2011 by Vickie Link to comment Share on other sites More sharing options...
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