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mom love

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Everything posted by mom love

  1. yes, EAmom read my mind about the second son being pandas/pitand also and the tetracycline use helping him. Have your doctor friend read the Sammy book and read all the things you print, she may likely be a non-believer. We all have lots of strep in our mouth all the time that is normal etc. Strep is part of what causes cavities. Lots of bacteria in there. That's why they used to have people with mitral valve prolapse take abx with dental work. I would bet that had something to do with it, and perhaps exposure to his aunt. Sounds like you have a good base to start with. Good luck. http:
  2. HT's mom, There are two main strep titer blood tests, ASO and Antidnase b, and they rise over time at at different times. So more than one blood test about 3 weeks apart would be advisable, for both your boys. I started researching PANDAS in 07 and found this forum then, and, yes, things have changed haven't they? There are pinned threads at the top you can read through and print. Also, there is a book out called Saving Sammy that you should buy and read about a mom who found help for her son. There are many ways you can approach your situation, and you will get many opinions her
  3. kthomas, I believe from the very core of my heart and soul that there are "non conventional" paths to healing. I believe in energy healing and in traditional chinese medicine and in homeopathy. That said,I believe you have to find the right practitioner. We have only tried energy healing with a very expensive healer at a time when my daughter did not have symptoms (was in pandas/pitands remission at the time). We have no idea if it did anything but the healer was supposed to have done miraculous things with others (non pandas). The pitands did come back, but we only saw her a couple of times
  4. Stephanie, I was going to say the same thing about myco p. Dr Trifilleti told me that it can present as just a sore throat and after researching it, it loves the whole respiratory tract. Also, just want to mention that I read recently about using Cat's Claw to treat strep. Might want to research that.
  5. Swim, I will tell you that myco p can present without typical symptoms like strep. My dd very surprisingly tested positive for myco p after a sudden onset of a very bad motor tic. We got a list of bloodwork from someone who saw Dr. Bouboulis and our doctor did it all for us. Doc put her on zith strep dose and she was back to 95% better in 5 days. That said, she has slipped over time and has gotten worse, esp lately. Doc added omnicef for 2 wks to see if it was exposure to strep, no improvement, then we added augmentin for 10 days and no improvement. We have now just switched to biaxin on
  6. I would say start with your pediatrician. Have as much blood work done as she will order. Strep titers = ASO and Antidnase b, get a blood test for mycoplasma pneumonia, and request the lyme western blot. That lyme test may only run as the elisa which if negative they don't test for the western blot, but if your doctor asks specifically for the western blot they may run it. That would be a start. I would print all the pinned threads here and buy a copy of Saving Sammy and bring it all to your doc. Tell her you have learned that these above infections can trigger tics etc. and want them ru
  7. This is an interesting thread! Michael or anyone, does it matter where the electrical lines come into the house? I have thought about this before because my son's room is just above where the box is outside the house. It goes in the basement to the main box which is below his room. How would I neutralize that? I did see on a home show once a family of engineers who smart wired their home using a mesh in the walls to keep the emfs away and they used a special paint on the walls. Does anyone know about that paint? Is one measuring device more accurate than another?
  8. Omnicef can cover pneumonia too. Can go to drugs.com and read about it. also rxlist.com some strep pneumonia strains are zith resistant esp out east. If you have omnicef and can give at least 10 days you could cover for both strep and pneumonia. It does sound like it could viral or strep. In my prayers
  9. Amy, I crush a zithromax for my children to take each day. I do use an actual pill crusher that really gets it into a powder. We have found that they do the best with chocolate ice cream. I put about 2 tablespoons of ice cream in a small bowl, let it get soft and mix it like soft serve ice cream and mix it all up. We do it in 2 big spoonfuls. They do ok with it and follow by regular scoop of ice cream or cookie. Washing down with milk helps too. Otherwise, I have heard from our pharmacist that root beer masks anything.
  10. LLM, that was the perfect amount of information. Thank you for sharing it. I appreciate every word. I've ordered the Igenex test and will get that going. My dd's tic/compulsion is getting worse and I have to move forward. Sarah, how it going today?
  11. Sarah, Ithere too with my buttons being pushed with really extreme behavior and acting out. I feel like my fuse is so short and I am immediately thrown into fight or flight mode. I have to force myself to count to 10 and breathe steadily. It doesn't always work. I am learning from your post here too Sarah so I hope you don't mind my asking a few questions within your post. LLM, I was recently thinking that family therapy could really help us. This is really taking its toll on all of us, and my marriage. But I have a stupid question. How do I begin to implement all of these
  12. Sarah, I think we each replied around the same time. I see you are doing the motrin. Consider compounding it. Also, did someone tell you that the Cunningham results will have an effect on insurance coverage? We haven't done it because it is so expensive and I already know we have pitands and it is research only. I'm curious about it being a "diagnosis". Hang in there. I'm a mess too. I just couldn't believe I was staring at my second child beginning to tic the other day. I am so ensconsed in PTSD that it just keeps beating me down because there is no "post". You have a very
  13. Hi Sarah, I'm sorry a virus came through. I know you are anxious. Give it some time. It may exacerbate a bit and then settle down. Can you explain more about not being able to control her body? With my 5yo who just developed a tic for the first time he spits at his sister and says really mean things when they fight over a toy etc. Is that what you are seeing in your dd? We just started zith on him as well and the tic is better. I have been doing motrin every 6 hours since yesterday. I think it has helped to calm my son, but my daughter's tic/compulsion is still the same. Than
  14. My 5 yo (until recently non pandas/pitands) son started with urinary frequency a couple of months ago. We tested the urine many times and even had an ultrasound. Our doctor gave him 2 weeks of zithromax because his sister was positive for myco p and the urinary frequency was no better and no worse. She then gave him 2 weeks of augmentin to cover for strep just in case, and his uf got much worse while on the augmentin. We did stick the 2 weeks out though. We then went to a pediatric urologist, conventional, only one at our hospital, and she said that when all tests are negative you have
  15. Tampicc, did the head nod come back after a while? Even after the steroids? How long had the head nod been there before you tried the steroids? How long and what dose of steroids did you give? Thanks, just want to know because we have a tic/compulsion now for 5 months now that is not going away on just abx. Have been afraid of trying steroid but have to do something.
  16. Maryland mom, My dd8 ha a T&A in Nov, and I am seeing those clear, very small blister like things in the area where her tonsils used to be. It is still bumpy back there as well, like just bumpy tissue. Do you see those bumps in your dd who had a T&A? Where the tonsils used to be? My dd has been in an exacerbation for a while now, maybe stating to come out of it, I hope. They are not painful to herand I haven't checked lately - she is still asleep so I can't check now. She has also had white stringy stuff in the very back of the throat, where you see post nasal drip. I did se
  17. I understand the doubting. You are so new to all of this information. Your doctor has no experience with this. I believe yours is a case of classic pandas. Did you buy the Saving Sammy book? What I would do if I were you, post here where you are, ask for doctors who have experience in your area. You can do phone consults with many if not all of the pandas docs. Dr. Trifilleti in NJ is a good one to work with on the phone. He can work with you or with your doctor. Google him for his website. I would suggest a longer trial of antibiotics, trying if you can to not have a period of time
  18. Nojo, I can tell you that we have chased strep for years for my dd because of PANDAS with strep infections. Most recent onset of motor tic/compulsion, we had full immune work up through Dr. B and mycoplasma pneumonia came up positive IGM (current) no other symptoms. Follow up test showed slight increase in IGG and IGM normal. She was put on zithromax by chance and did improve well at first. In reading alot about myco p, there are proven, researched links to neurological issues, like with lyme. It is a nasty bug, like all of them. You asked about co-infections, on the lyme b
  19. Yes, I'd say your angels were guiding you. I would print out all the helpful threads pinned here, buy 2 copies of Saving Sammy and give one to your doctor before this rx runs out and request a longer dose, at least double, and in my opinion, ideally a month. Then go from there to consider/research prophylactic dose if she is back to 100%. If she is on amox know that there is a high failure rate with it. Augmentin and omnicef have better clinical records. Do your best to get enough for your other child to clear him as well. I would check both of their titers. ASO & Antidnase b. Sh
  20. My goodness. This is a tough road. I am so glad you are getting answers. Do you mind sharing what these tests were exactly and how do they know they are chronic? Not doubting it of course, just wondering is is an IGG verses an IGM. Also how do you find out about fungal infections? Just wanting to know exactly how to get these answers. Blood, stool, urine etc. So what is your first step?
  21. I'm just throwing this out there Wilma. What if you took out all milk products for 10 days or so and see what happens. Not just with the headache but with everything. I know you don't think food affects her, but you never know. It could be worth a try.
  22. I was going to ask the same about the bentonite clay. And what does it do exactly in conjunction with the high dose probiotics? Also, LLM, I think it was you who told me about theralac and I now give the children's powder once a day. With my dd in school, I can only fit in one time away from the abx. I didn't know about the bedtime though. That is good to know. I could give 2 X on weekends. And LLM, with the poop test, all was clear? no yeast, etc.? Our plumbing issues are constipation. I used to give florastor too as I read it was good to keep yeast away, but also read it can
  23. Hi Sarah, I don't know if you saw my response to you in another post... but I know your mommy gut was telling you zith! How long are you going to give it? Are you getting it through a compounding pharmacy?
  24. Joan, my mom had it and in the hospital she was given iv zosyn. She was sent home on augmentin so that may be the oral equivalent. I know that there is an antibiotic that is becoming resistant to strep pneu. especially out east. I am pretty sure it is zithromax. Does this non pandas have any symptoms? Any issues whatsoever?
  25. Joan, Yes I would agree it is time for a new doc, for both children. Are you thinking about longer run of abx for non pandas son? To eradicate. I would say fight for that. Good that they are running sensitivity testing on the bacteria. Let us know the type. I know you have been on here a long time but if you post again where you are maybe others can help find a new doc. Sorry you have this struggle.
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