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AmySLP

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Everything posted by AmySLP

  1. Have not had this problem with clindamycin ....can only say good things about it. Has made my daughters symptoms remit a least 3 times over the last few years.
  2. My chronic pandas child is doing well....caught early and many, many abx I've the last 4 years. Tics are gone,some residual anxiety, but getting help with this. Mistake I made along the way were trying to take her off abx. She remains well on prophylaxis.
  3. Also concerned about this immediately being included in the controversy section of this conference. If a naysayer is the speaker, this could do a lot of harm rather than good.
  4. Always had great luck with clindamycin...also recently told that rifampin added to abx. Regimine gives a boost to abx. Response.
  5. Also in upstate NY....where are you located? We are in Binghamton area. My girls see/have seen dr. Trifletti, Dr. bouboulis, dr. Latimer, Dr. Elia.....NJ, Ct, MD, PA respectively. You really have to travel...don't waste your time or money in Albany, Rochester or Syracuse...tried all of those and was met why horrible naysayers.
  6. It has to do wih its long half-life....after 4 years of a combo of higher dose abx, my daughter is 100% on this as maintenance! Changed peds. When my last one was doubting....now have an excellent one who will state he's not the specialist....whatever dr, B, Dr, T, Dr. L have said he's respected. He trusts me and I'm able to adequately share the info. Get a ped, who trusts and respects you.
  7. They say Elia is heading to DuPont in DE. Also, I believe dr. nicholaides (sp?) is in south Jersey....cherry hill area. She' helped Beth Maloney's son, Sammy. You could email her and ask for her contact.
  8. Sounds like essential tremor of one kind of dystonia. He hound see a neurologist. Be careful to choose one that believes in PANDAS even though may not treat it. But this movement should be evaluated.
  9. Compazine (sp?) is used quite frequently for nausea and I think you have to start by treating that. Will your son eat ice cream? There is a product called, Magic cup, may be a few others out there of other brands, that are like ensure/boost in ice cream form. Also Boost comes in a pudding. You'd have to get these online, but these may offer other options. Have you seen a dietitian to see what options they may have for boosting nutritional value of what he already eats? I would do that as an essential step. Just make sure to see a registered dietitian and not someone just calling them self a nutritionist. There are a few behavioral feeding programs for kids that I know of, but in NJ and Philly. They do work as a team, with gastro docs., occupational therapists (sensory issues) dietitians, speech pathologists. Hey typically prefer inpatient initially to make their behavior mod. system work. Hope that helps....I'd treat the nausea and seek a dietitian to start.
  10. Kristin, Just had a conversation with my youngest 's local allergist and she recommended I ask for rifampin for my oldest if she's in a bad exacerbation. This is in addition to other abx. Also, Epsom salt baths are a great idea to try. So glad to hear things are still moving forward. Heading out your way to Corning today.
  11. Ok, First thought is that he likely has fluid in his ears from cold/ congestion and hay combined with screening in a room not a sound proof booth, it's not surprising that he would not hear the tone until 25 or 30 dB. It's been more than 10 yrs. since I had to do an audio. Internship, but I think we accepted higher dB levels 20 or 25dB at higher frequencies in settings such as a school would use. Screening are just that -screenings. Usually done by a school nurse or assistant and there is room for error. Now that said, audio evals. By an audiologist are usually 100% covered for the audiogram. They usually do not cover hearing aids, but will cover testing. Be sure it's an audiologist if you choose this route, not a hearing aide dealer (although they will offer free hearing evals that you could pursue if your insurance doesn't cover). They can be gimmicky but may give you some insight if further testing by a real audiologist (M.S. or AuD degree) is necessary. Hearing loss that comes and goes is a conductive hearing loss from fluid, treated with tubes in younger kids if its chronic.not sure the the view on children his age. If his hearing loss is intermittent it's conductive and not sensorineural. My daughter had been dx. With convergence insuff disorder at age 4, same age she was dx,. Pandas. She's outgrown it. Words and sentences jump around the page from what I was told, not reversals per say. Not sure about a correlation here with hearing. Hope that helps... Amy
  12. Kristin, you give me too much credit. I owe everything I've learned on our PANDAS journey to these mother - (and sometimes father ) warriors on this forum. I credit my daughters slow, but steady recovery over 4 years to everything I gained right here....from doc. Referrals and med. recommendations, to support for myself when sometimes I thought I'd loose my mind. You are doing everything you can for Brennan right now- it's trial and error. Different things work for different kids; as evidenced by all the opinions on here. Sometimes you'll feel like you've tried them all and reach out here and find something new to try. Let your trip refresh you and you'll come home more ready than before to fight this battle.
  13. My 8 year old had 3 separate incidents last night of bowel incntinence without warning. She has been in prophylaxis abx. For several years and she just finished a course of clindamycin and as with the 2 courses several years ago, is 100% symptom free. However, she's been complaining of belly pain high in the abdominal area for a few days. It's not like her to have an accident & described these as not knowing at all that it happened until she felt the wetness. Planning to keep her home and call the pediatrician this am. Has anyone seen these symptoms in their kids? Wondering if it cut be that form of colitis that can come from antibiotics?
  14. Did your daughter have any strep cultures done during this Time?
  15. Do ask for upgraded boarding since your an has special needs. When we flew last with my daughter, I go a note form the pediatrician, but the airline didn't want to see it, I felt bettter having something in hand. We saw dr. t 2weeks ago too. I agree with the above poster. He's a but quirky, definitely a big brain! He took lots of time with us and we were the only ones there, except for the phone conference he had prior to us. My kids were comfortable and he did examine my daughter with a quick neuro exam, same as dr. Latimer did years ago. We saw dr, Bouboulis many times and I don't think he ever examined her, other than a quick look up her nose once.
  16. After years of high dose antibiotics by dr. B my daughter was well controlled on them, but not off. For her, it has always worked to go with clindamycin for 10 days. And then resume prophylaxis. We saw dr. T and are going to try this starting this week with the zith 2x/ week & and I hope afte r nearly 4 years if abx. This will be the answer. I worry so much about her liver with all these abx. For so long at such high doses.
  17. I think you can find this info at the top if the forum...helpful threads for PAnDAS.
  18. I believe at the top one of the basic PANDAS threads discussed why strep antibodies are not needed for pandas diagnosis....after 6 months of strep and at least 3 tests for these, my daughter never rose a titer. In fact, poor vaccine response as well. I'd worry about doctors who are placing too much value on titers.
  19. Don't buy the kit....keep reading here. Ask all the questions you have. Save your money to use toward a PANDAS doc.
  20. You might want to ask for a course if clindamycin to eliminate the strep that's hiding somewhere...lots used to clear carrier status. My daughter is on it for the third time in four years...when nothing else is working 100% we find the a course if this before a more mild abx. Works for her.
  21. I am certain that those were tics that your daughter experienced....coughing and the repetitive bubble blowing from the mouth are tics I've seen in my own daughter. My child only presented with scarletina rash as her only physical symptom of strep. Look up pictures...this may be jut what your child had and will be good evidence of such. You are doing exactly what you should be for her...you might start a new post asking for help in the UK and parents may be able to point you in the direction of PaNDAS doctor there. We have a family history too....been told by PANDAS docs here that its definitely got a genetic component.
  22. I have an old post with questions about being upside down and handstands. My daughter has this with flares. I think for her it started as seeing sensory input and then unfortunately became a ritual or OCD, when she would do some 100 to 200 handstands each day trying to make them"perfect"
  23. Not that this solves the problems of the tics, but my daughter had the lip licking tic & I found that if I put Vaseline on her lips heavy every night, it helped a ton to keep on top of them. It's actually so painful for them- I remember my daughter had such issues with eating beause her lips burned so much from the constant chapped state from the tics she had at the time.
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