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Everything posted by emst

  1. I'd be very concerned about the drive. Even sedation could backfire. I heard a bad story about a young man away at college that had similar issue and the patents picked him up to drive him to their doctor and the young man he kicked strong the whole way back nightmare, kiking 3-4 hours. You know your kid, you are the best decider. Do you have Advil or Gaba? Benadryl? Some sensory lavender, lotion, brushing, noise blocking head phones. Is he in need of allergy meds? If I can think of any more I will re post, best to you.
  2. Ditto, I agree w what Nancy said about finding your dose and comorbidities. Diet is very, very important even though its tough to change diet with a pandas kid who is flaring it is the right thing to do. Healthy, real food is important.My oldest who fought me on everything and had hunger strikes is now a model stickler for the GFCFSF diet. The youngest one is on GFCFSF but she gets Pizza at school pm Fridays. She is the most recovered. Our son is on SCD, it really helps. He could not read. He started reading ad writing within a month of starting SCD.
  3. It's important to keep in mind hat recovery is "not just one thing" it's a bunch of little things that that are affecting your child. IVIG for example people look at it like a golden ticket but you also need to find the right diet for your child with optimal nutrients, exercise, mental exercise etc. self esteem, rest. All that. It's hard to keep all those balls in the air. TACA is a great resource whether your child has autism or not there are many commonalities to treatment. https://www.tacanow.org/ We have 3 kids w Pandas, 1 also has Autism. All of their Pandas has improved, one is gone, 1 is in remission, one still has to deal w pandas but way, way less then before. We work hard -- but that's life for you. You have a very good doctor. Do you have a support group near you?
  4. Tis the season for mycoplasma unfortunately. Our homeopath has given us drops for mycoplasma, plus drainage drops to clear it out of the kids systems, magic. We do a lot initially and then just go on maintenance until the late spring. I think that once you get it under control herbs like berberine really help.
  5. we do a lot of biomed for healing but for social we use either prescription oxytocin (a bit expensive) or prescription propranolol (not expensive) - they work differently and can probably be helpful together for different reasons, some people also use abilify, we dont see social benefits we see calming though many people do see social benefits we could not get to a hi level with abilify -- f w i w we did a lot of ivig 2 1/2 years monthly and there were no benefits for socialization though we did see benefits in cognition and mood though our kids were already socal, but sick
  6. http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/ is probably the most up to date
  7. Yes, alert your doctor asap. Our doctor said she had 90 of the same type phone calls last week. A lot has happened in terms of mold the past well and other allergies this last month. It all compounds for pandas kids. My 2 kids are pretty much in recovery and they had yeast infections last week - they were reacting to the environment. They are taking a lot of candidase and motrin. Look at support on all fronts.
  8. I feel that what you describe is likely to be die off and would not be too quick to change antibiotic. The dose/amount may actually be too low. Ask if you can do a trial of a double dose. You can use activated charcoal a couple of hours after giving the antibiotic to mop up the die off. See if it helps. Do you give Advil or Motrin? If not this would be a good idea, not tylenol. Back when we started we started with Zithro at 250 (I think) and then went up to 500 for a week then back down to 250 and stayed there unless there was a flare -- this was for my daughter, my son was always on Augmentin Double or triple dose for years. Both kids are done after many hears of treatments. Doses can be different. Suggest you find a MAPS doctor ASAP. Typical doctors dont have the clinical experience that the MAPS doctors have -- the maps doctors tend to tend to have more supportive protocols. You may have to travel. xo, hope it helps. Lmk if you need more help.
  9. I believe a strep carrier's status is a clinical diagnosis. Carriers can have strep and not be affected. That's why they can cause trouble for a family member w pandas. Our youngest DD is a carrier. Our docs knowing the whole families history put her on prophylactic antibiotic 1 tab per week for 3, 4 years. Not a decision anyone wants to make. She was just turning 5. The reason we went with it was because we had seen some shadow symptoms in her. We believe it helped her not get pandas. Her older brother and sister had severe pandas at the time. They infrequently have shadow symptoms or short flares now.
  10. Communication is key. The next time they ask - ask them what info they need and try to get it in writing. Communicate that you will relay their request to your doctor. Keep the school posted to the degree that you feel comfortable. (Like some parents maybe be vague about bimed for example. Unfortunately many schools may look at his issue as strictly a behavioral issue or only see the behavior piece of it and want the student in school so they do not become to far gone. Make sure your Dr characterize it otherwise in writing specifically using medical terms and excluding behavior from consideration. If for example he can attend some school or online school maybe he can get a modified schedule. Suggest you post your state (where you live) so members who know the rules in your area can chime in. Take care, E
  11. Have you considered low dose Abilify for peopled w/ autism http://www.drugs.com/comments/aripiprazole/abilify-for-autism.html- helped ds age 12 w/ rages, we also use Advil or Motrin usually 2x per day for inflammation, works in a flash (though we may need to re dose if virus/cold/flu etc)
  12. Interesting. If expense is not a concern a trial might tell you a few things even if his IG is in normal range.. Have you tried Helminths? Biome restoration might be a good supportive. And /or Enduracell Bioactive has been a big win for our kids at 2 per day. They both have old lyme, pandas in remission, ds also has autism, his sister does not.
  13. Rhodiola hands down. . Pure encapsulations is a very good brand. Caps are small. Start with 1. Wait about an hour try another. I gave my son 2 1st time, 4 the next -- 4 works for him. He's 12, 65 pounds. It only lasts 3-4-5 hours then he may need more. We now use a time release version from Nature's Plus Herbal Actives Rhodiola -- 1000 mg, the only drawback is that it's a big tablet. Time release usually the suggestion is not to crush the pill.
  14. Bacteria seems to be in control. Until it is eliminated there will not be peace. It can take a while. We used oxypowder took pver a year. Flacyl can take a coupl of weeks, or months depending. You might also want to look in to helminths.
  15. What med are they on? My experience Drs often start meds and then kids develop a fungal problem which i m o does not mean discontinue but continue the therepy ot increase the dose sometimes and treat the fungal problem. Call, call , call. Call the office, call the service if they have one. A lot of families are still on vacation which would include docs or their staff. Most doctors want you to report the problem. Encountering a problem at this juncture does not mean you are sunk, really. It likely means they are progressing and need help. Many people have die off at this juncture. Die off can be treated with activated charcoal. Look in to it. We use it for a milliom maladies. F W I W Examples of antifungals would be dyflucan, ketoconazole etc. Look in to the activated charcoal as well.
  16. Myco? Bacteria? Maybe a stool test or a round of flagyl?
  17. Yes x 3 kids age 10, 12, 14 pandas for 9 years 2 are recovered, one is kind of maintained whack a mole style but doing pretty well are the moment - he also has ASD and the most issues.
  18. Keep in mind it's August/Vacations What office are you frustrated with and what's the issue? May be able to help.
  19. Cross my heart I'll tell you I did not sleep for 16 years and as much as I tried every distressing product and protocol finally the one that helped was a Hyland's product called Biochemic Phosphates instructions are on the bottle -- like many homeopathics this one said to take it 2-3 times a day as needed and as much as every 15 minutes until no longer needed. That was me however I only had to do it 4 times to get to the relaxing sleep dose the first couple of times then I got down to just once or twice before bed.That was heaven for me. I was having some breakthrough waking and learned about Calc Carb (Boiron) and that it could be used for inducing sleep, That helped with night waking but is also OK on its own and I no longer use Biochemic Phosphates. Many nights I dont need it at all now, good luck to you.
  20. I found myself both afraid of losing my child and angry and frustrated with my husband who couldn't see what was happening at the time. Pandas kids really do get unglued and its easy to forget that they are still in there, still your kids and they still very much need you to parent them through this mess.. I found myself shouting at my daughter one night that I was her mother and I will do everything I can to get find the practitioners who can get rid of this illness but until then you what I ask you to do in this house. This was a big fight over brushing her teeth and she had gotten 6 cavities over the course of a year because she thought that there were specs of bugs on her toothbrush things like that which were very real and scary for her became hot buttons but she knew I was not going to give in and we got through it. Fast forward a few years she is very much better. She has tough times sometimes in the winter but she can self advocate like a champ. There is a residual resentment toward other people who appear to be free wheeling and problem free but she is also learning that almost everyone has problems we cant see and if they don't now they will one day for sure.
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