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Everything posted by thereishope

  1. Some Suffer From More Serious Type Of Strep Throat Reaction http://www.10tv.com/content/stories/2011/11/22/columbus-unusual-strep-throat-reaction.html
  2. Being PANDAS mom, we overthink a lot. The truth is you may not ever know what caused the improvement. Yes, it will be interesting to see what happens when he's off the Augmentin (how long is he suppose to be on it for). For now, enjoy your son and his improvement
  3. I hope the improvement remains/continues! Is your little girl on proph abx? With her hx of strep, have you discussed with Dr M the possibility of sporadic at home strep tests on her to try your best to remain a strep free house for both of them? I can't remember the time frame, but at what point is it okay to give Ibuprofen and fish oil after surgery? If you see any setbacks, and it is okay to give Ibuprofen again, give it. Let's keep this good momentum going. As for fish oil, I never stopped giving it. Even if he seems to be well, lay the foundation for remaining wellness. Keep in mind, even if he is improving, you may see a setback here and there. That's part of the healing process and expected. It's if he doesn't snap out of it that the red flags go up.
  4. Hi, everyone. It was recently posted that Dr. Cleary was accepting tissue samples from tonsillectomies. Even though this may be something in the future that may occur, Dr. Cleary is not currently accepting samples. There is no active study right now. So, there is no need for us to contact him and ask if he needs them. If/when there is a need, he will let the PANDAS community know. Thanks!
  5. I would think for study purposes, if the child has improvement they want it be to clearly the benefit of IVIG and not give anyone the opportunity to say it was not the effect of IVIg but the long term full dose abx. They want no speculation as to what improved the child for study purposes.
  6. Glad the surgery went well! Heads up...my son did great with the surgery too, like yours. Then about a shy of a week later, he got very tired for a few days. He bounced back in a day or two. So, don't freak out if in a few days he starts to seem tired. It just made us remember the healing wasn't done. My son was well when he went for surgery so I cannot comment on PANDAS improvement. He did have PANDAS symptoms resurface full force about a month later. He had strep again. So, don't dismiss a worsening of PANDAS symptoms once they have been better as a result of surgery alone. Still stay vigilant. Side note, that strep infection my son had a month after surgery was his last one to date (knock on wood) so I have to hope and believe the surgery did help with limit the recurrence of strep.
  7. If I may ask, could he have a sinus infection?
  8. I'm not well versed on histamines and such, but as a mom whose child negatively reacted to Claritn, we did well on Benadryl or Natural D-Hist. clause....some kids do bad on Benadryl...I think with allergy meds, even though our kids may carry the same dx of PANDAS, each child reacts different to each allergy med. Unfortunately, the only way to find out which works best is through trial and error.
  9. When my son was healing, seasonal allergies started. Oddly, the PANDAS symptoms started a few days BEFORE physical symptoms of allergies. His reaction was as severe as a strep induced exacerbation. Finding the right allergy med is important and can be tricky. Each child reacts different and what seems to help at first can then start to create its own problems.So, chart behaviors when you start any meds. Finally, remember that people can get allergy induced sinus infections. Sinus infections can really negatively impact a PANDAS chld as well.
  10. Yesterday afternoon was the first PANDAS Parents Meeting in Indianapolis. I am happy to say that it was a success! Thank you to all those that attended and presented. Including the presenters, our "in part" sponsor, Organic 3's Dan Corrigan drove down from Michigan and spoke! We had a cross section of most of the country with parents from Wisconsin, Illinois, Indiana, Ohio, Kentucky, Mississippi, Tennessee, New Jersey, Michigan, and California! This proves no matter how far apart we are, we all have the same focus...getting our children better and keeping them healthy! The empowerment in the room cannot be explained. The parents that attended were determined to connect and share information. The organizers of the PANDAS Parents Meeting will work on summarizing the day's events and share it with everyone soon. We want to make sure those that were not able to attend, have the opportunity to learn from what was shared as well. Summaries will be posted on various outlets, including here. You can also visit the blog that has been devoted to the event. http://pandasparentsmeeting.blogspot.com/ Again, thank you to evereyone that came! ps. Our welcome video from the meeting is already up, if anyone is interested...
  11. For those that missed the show.. http://www.thedoctorstv.com/videolib/init/5141
  12. Are there any other symptoms your niece may have shown before? With PANDAS, exposure to strep can cause PANDAS symptoms (maybe some symptoms, maybe all symptoms) to reappear.Stuttering is also a symptoms for some kids https://www.aacp.com/Abstract.asp?AID=9159&issue&page=C&UID As for what your sister can do about it...well, she needs to be vigilant about strep. Just as PANDAS families do. Again, I would be curious if any oterh possible PANDAS like symptoms have ever been present before that could possibly indicate an undiagnosed past flare.
  13. When PANDAS first surfaced, we would only be able to get antibiotics when my child tested positive for strep. He did end up going into and maintaining remission even without a daily antibiotic. But, we are here now with 3 strep triggered exacerbations under our belt, residual OCD in the last one that we had to overcome and saw our young child think and do things that no one should see their child go through.Who knows how bad my child can get if he gets sick again. How do I know one more exacerbation will not be the one that broke the camel's back and I will be unable to get him back? So, even though my child can maintain remission off antibiotics, we have finally found an understanding doctor that gives my child prophylatic antibiotics to try to prevent strep.My son has been on a prohylactic for about a year now. We do take a daily probiotic as well. To date, we have not had any issues. If strep is in the hosue,we do switch him to a different "family" of antibiotics for 10 days to try to protect him even more. Over the last year alone, my non-PANDAS dd has had strep, we've had strep in the neighborhood twice, had people over to visit to find out they had strep while here, strep in the school....I am so happy and appreciative to the doctor that finally stepped forward and tried to protect my son.
  14. Have you tested family members for strep to make sure she is reacting to exposure at all?
  15. And she is in CBT or ERP for those remaining symptoms? Is she losing weight due to those fears? When OCD is surrounding food, it could actually be a bigger problem than one realizes since a lot can be obsessions and not things that you, as the parents, sees or realizes. Kids, even if they are actively participating in therapy, may not tell you everything they are worried about, doing, thinking. Same with fear of germ, dirt and illness. It encompasses a lot. I think me reading your experience from an "outside" point of view sees the remaining OCD as still significantly present and affecting her life. The list of OCD may not be long, but the OCD she does have is affecting her life. Yes, at some point in recovery, therapy may be able to help. We had to do that with my child's third exacerbation, but I also wonder if there could still possibly be something lingering that could benefit from a longer course of treatment strength antibiotics. Also, I am not judging you for starting the SSRI. I know some kids that have benefitted from one early on in an exacerbation, but dosing is important. I also know some parents (and I totally get this) that are scared to change anything because the child is showing improvement and the thought of rocking the boat is something the parent cannot bare to even possibly do. But I do want to throw out there that SSRI can negatively impact some PANDAS kids and they may need to be dosed different. http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 Have you tried Omega 3's? That may also help with some of the OCD. As for the possible prophylactic....IMO...if your child is still having PANDAS related symptoms...if she does have another full fledge exacerbation while symptoms are already present, the foundation is there to possibly get really bad.
  16. Well, early on in this, my son only got abx when he had an infection. In subsequent exacerbations, we caught it and started abx within 12 hours of onset and he still got very bad and recovery still took awhile. So, I am a supporter of prophylactic abx if the child can tolerate it. I eventually did find a doctor that would give my child penicillin as a prophylatic and he has been on it daily for over a year now. How bad are the remaining symptoms and how long has it been? Do you think she could benefit from a longer course of a treatment dose? Do you believe the SSRI's are helping? I only ask that since I know some parents who realized the SSRI actually started to contribute to behaviors and symptoms.
  17. Hi, what I noticed with some kids is they do not have as strong intial symptoms if they are on proph abx. Perhaps the combo of being on OLE and catching the first exacerbation so fast is what saved your daughter this time. I am so happy for you! Still, keep vigilant.I wish your daughter and your family continued health.
  18. Just posting an update that we have officially filled all 50 seats for that day!!!! We will still take names and add them to a waiting list list in the event someone tells us they cannot come after all. We will contact the waiting list names on a first come, first serve basis. Hopefully, next week we will announce our fabulous speakers. Stay tuned... Thank you to all those who have made this meeting possible, including our in part sponsor Organic 3. For more information n the meeting, please viist our blog at http://pandasparentsmeeting.blogspot.com/
  19. My son respnded well to Benadryl, doesn't even make him sleepy (side note, some kids respond negatively to Benadryl, every child is different). However, I didn't like having to give it to him sometimes 3 times a day on bad allergy days. We have now switched to D-Hist Jr and that helps him. Has your son had a recent sinus infection? Keep an eye open for that. We have had allergy induced sinus infections in my house before. If PANDAS/PITAND, sinus infections can worsen symptoms too.
  20. I must be out of the loop....Dr F???? My son has PANDAS and allergies exacerbated symptoms to the point of the same severity of a strep induced exacerbation. Claritin helped at first but then worsened OCD. So chart your child's progress. Once we found the right allergy med, immune system calmed and stayed calm, things gradually improved. Actually, right now, my child doesn't have PANDAS reactions to allergies now. What else is in your child's history that first led you to suspect PANDAS?
  21. So, how long did he take Zith for? No improvements at all? Sinuses can be very tricky and you can need longer antibiotics for bad infections. My kids have needed 20+ days of abx for bad sinus infections. my one child was on two antibiotics at once for another nasty one. You could try a cephalosporin like Omnicef. At least 20 days, a month if you can. 10 days won't clear it. Will your child use a Neti Pot? That may help. Also, they sell Xylitol nasal spray online. That may help too.
  22. That's discussd here http://pandasnetwork.org/2011/07/maternal-autoimmune-disease-and-pandas/
  23. An active infection is contagious. Autoimmune disorders are not. PANDAS is an autoimmune disorder. Multiple siblings may have PANDAS due to a genetic factor. The strain of strep may play a factor but not evey child will have that autoimmune reaction. Even after the infection is erradicated, the PANDAS child still has PANDAS symptoms. Our kids are taken very fast,but it can be a while to get them completely back. Once the child is in remission and PANDAS symptoms free (and infection free), the child still has PANDAS....just in remission. I've had in my household all three kids with strep at the same time, but only the PANDAS child showed the autoimmune reaction.
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