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mom24

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Everything posted by mom24

  1. I would love to know too. My sons take it and DS1 takes it at breakfast lunch and dinner. DS2 is in full day school and takes it around 715ish and then when he gets home at 3;30 and then around 630 with dinner. It doesn't sound like we are doing it right with him, but I am very reluctant to send the med to school. So far (Knock on wood) results have been good and there has been no strep here...
  2. I would love to know too. My sons take it and DS1 takes it at breakfast lunch and dinner. DS2 is in full day school and takes it around 715ish and then when he gets home at 3;30 and then around 630 with dinner. It doesn't sound like we are doing it right with him, but I am very reluctant to send the med to school. So far (Knock on wood) results have been good and there has been no strep here...
  3. Wow, you are dealing with a lot. What you describe reminds me of a combination of my two boys. Both have Pandas---bedwetting in the evening...sometimes accidents during the day and the baby talk are two red flags that they are in exacerbation (oh and some tics too). Both are BIG mycoplasma kids (one is also affected by strep and allergies). The rage --reminds me of the other son who will spin out of control at the drop of a hat and can be completely irrational. He is can be very rigid also. Dr J told me that this is caused by the Bartonella and Lyme. I would try to have your Dr test for the following to start if you have not already: Myco plasma IGG and IGM ASO titer Western Blot (the boys both test negative on the regular Lyme test---thank goodness our Dr does the Western Blot anyway or else we never would have known they were sick) This is a great place to share your feelings since we are all going through/or have been through difficult times. Hang in there!!
  4. Hi! I have had JRA (currently in remission) since I was three and I have to tell you that sounds like a very high # for a child. I would strongly urge you to consult a Rheumatologist. I have heard that There is a good ped Rheum in NYC if you are in the area. I have LYME now too and its interesting to note that my SED rate is currently a 10 (I am a 40ish) and have joint pain totally attributable to my LYME. Is there one particular joint involved or several? Hang in there it will eventually get better :-)
  5. I am blessed (sometimes it doesn't feel this way) that I can stay home with my 4 kids. @ of my DS have PANDAS and LYME (One severe w/ bartonella). He is our 4 YO and I can relate to what you are saying. We are unable to go out unless we have one on one coverage for him. I leave him at home with our fantastic sitter. It is hard because I want him to learn how to behave, but when he is sick it is hopeless. It is very difficult when the whole family goes out since my husband lacks patience with the 4yo. He can often be aggressive and irrational---due to the OCD and PANDAS. It is extremely stressful and I keep hoping that we are tracking on the right path. We are fighting for IVIG for him now---which will mean 2 in IVIG if we are lucky. Stay strong and know that you are not alone (I tell myself this while people stare at us when he make a commotion while we are out at times). People that don't understand are ignorant and better hope that nothing like this comes there way, It is definitely a sign of immaturity. The sports thing is hard and we still deal with it often here (with my 9 yo and my 4 yo boys) . I have found a special soccer program for my 4 YO where he will have a one on one AND it is FREE!! I can't wait for him to start and to meet some of the other parents in this program. Hang in there!!
  6. Did my other post go up, sorry if I re-post this. They discovered strep in DS1 again and drew him @ IVIG. WE were back and forth with the Dr but he finally agreed to clindamycin after we insisted 2 ENTs said it was "the drug" to treat strep. This helped DS1 and DS2. Myco has been another story here. We had a drug resistant strain here. DS 2 had IGM level of 2000 so Dr referred us to LLMD. Last check we went down to 1300 (baby steps ) when he was switched to clindamycin and bactrum (for LYME and bartonella). We will see when we take him to the Dr next time. DS 1 now has a IGM of 940 but is just on Clindamycin since he had a reaction to cipro---careful with that one if you take it long term. We just found out he has LYME too so need to re-evaluate his meds. Good luck and I hope for better health in your home. Bulldog24-can you really catch infections from your dog? If so what kind? Ironically our whole family of 6 here (except for a baby so far) has tested + on the Western Blot-----dog's frontline has kept her Lyme free. Pretty sure that she brought the ticks into the house though.
  7. Thanks so much. Just so frustrated. 5 out of 6 of us test positive for some form of LYME and 2 kids also have PANDAS one going through IVIG and one on a path to. I guess the important thing is trying to find the correct path! I will check out the links. It is hard for me to discern, at times, what symptoms are PANDAS related and what are LYME related. Hope your son is improving!
  8. So frustrated. I just found out that my son and I are testing positive on the western blot. Between us we are + for bands 23, 66 39 & 93. That means that out of a family of 6 the only person who is negative so far is our infant and our dog who we will be testing soon. DS also has a current Myco Plasma infection has PANDAS and has been undergoing IVIG. Sorry to vent.
  9. Hi! We are in need of a behavior therapist to go into our school and make an assessment as to whether or not the school is able to meet our 4 year olds needs. Thanks!!
  10. HI! We are in need of a behavior therapist to go into our school for our 4 yo son. Thanks.
  11. Yes, I do believe they may refuse to cover it, because DENT is still claiming it's all conversion disorder, and with all the PR that DENT did, and convinced the press that the huge number who had high strep, mycoP and lyme titers supposedly means nothing, I suspect it is going to be just as hard, if not harder (but I hope I'm wrong.) Anyway, as far as the question about getting IVIG. I would try the following: 1) Submit documentation showing how IVIG helped (before and after.) Include observation, and titers (if the numbers went down, that helps show evidence.) Has your child gotten sick less often since getting the IVIG? Is he starting to get sick more often since not getting the IVIG? That's the type of information you need to prove. 2) Include studies that show that IVIG works (the 1999 Lancet study is the primary one, and the NIMH is now working on a 2nd one.) 3) Speaking of the NIMH, I would include a copy of the website, and highlight the part where they talk about IVIG helping these kids, and also where they mention that an ongoing study is occurring. 4) What is your child's dx? Is it PANDAS or is it some kind of immune deficiency. If you can get verification (from an immunologist) that there is immune deficiency, you have a much better chance of successfully fighting this. If that's the case, then look at your policy's specific requirements to get IVIG for that specific dx (they do list it.) If not, you will have to fight it based on "off-label" use, and that typically requires 2 studies that have been documented in major publications (they're just working on the 2nd now, but the NIMH website might help you.) We too have BCBS ---PPO. My DS is diagnosed as immune deficient. We get approved for a few then have to go for re-approval. Total approved is about 8 or 9 so far. Good Luck!!
  12. Shows what I know! Thanks Chemar! My son LOVES Pro Bugs and I did not want to have to restrict them.
  13. Ooops I had wanted to post on this blog. Does a nyone know if there is strep in "pro-bugs" ? They are a Kefir drink manufactured by Lifeway and I purchase them at Whole Foods. I emailed the company and they haven't gotten back to me. It is not listed on the ingredients, but I want to be sure since Dr T told us way back to avoid yogurt because of this. Thanks !!
  14. Anyone know if there is strep in "pro-bugs" ? They are a Kefir drink manufactured by Lifeway and I purchase them at Whole Foods. I emailed the company and they haven't gotten back to me. It is not listed on the ingredients, but I want to be sure since Dr T told us way back to avoid yogurt because of this. Thanks !!
  15. Thanks everyone. I really appreciate the feedback. He did much better today(did not need to come home even with his teacher absent). The difference, I think, may be that the school nurse and I decided to keep him in during recess. He is VERY allergic to tree pollen which happens to be terrible here right now. I also think that he caught something post IVIG-came home and told me his classmate had strep his 1st day back . It probably doesn't help living with a little brother who has Myco #'s in the 1600s. We will continue to monitor. We have decided to start allergy shots and will do so this week. I must say that tonight has been wonderful and it feels like DS is back much more today!! That being said I know that we have to take it day by day. Thanks for the thoughts on Yeast also. We treated for that quite a while ago with a DAN. I think I will ask if we can re-visit the Nystatin (although I do give him high potency Floristar 1x a day) :-)
  16. I have 2 sons w PANDAS 9 and 4. My 4yo is what you describe and has been running a low grade fever (I didn't even know). Have you also considered checking for Lyme disease and myco plasma? DS4 has bartonella which is VERY similar to what you have described and we have been dealing with this since he was 3 and had no idea of what was causing the symptoms. It waxes and wanes. Our immunologist referred us to a Lyme Dr to treat that and he treats the boys who both have PANDAS. Also, some antibiotics have helped both immensely. You just need to find that right mix. Hang in there! Good Luck :-)
  17. So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though. This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing. Please excuse the rambling. I am very frustrated, but hopeful :-)
  18. I recently was treated for Strep C. It is an odd strain that even shocked our Dr. I have no idea where it came from. I did read that it is common in cattle....yuck. I eat mostly organic everything too. Thankfully my PANDAS sons did not contract it from me.
  19. My son is also 4 and lately has been very volatile. if something does not go his way he makes fists and starts swinging. Our Dr said that combined w his rash that comes and goes, & increasing seemingly antibiotic resistant myco plasma # (current infection#) he thinks he is a Bartonella kid too, so we are in the process of exploring that route. Things have improved slightly during the 2nd week of Bactrim! Hope your son gets better soon.
  20. Thanks all for your thoughts. We see Dr. J this week and have many labs, rash pictures and behavioral videos (people can't even believe the rage until they see the video). Hopefully Dr. J will have some good insight and maybe like you, SF Mom, we can avoid IVIG and get our son back through the proper antibiotics. He is a chronic myco guy whose #s keeping going up (1600+) with probable Bartonella . Looking forward to having the appointment! I will also check out the links. THANKS :-)
  21. 1) How old was your child when this began?

    age 4 1/2 -5...she did have a t/a around that time due to tons of "sinus infections" I think this happened after hmmmm... The eyelash pulling would ebb and flow for no apparent reason.

    2) What other symptoms did they have?

    looked like anxiety and ADD she is a "gifted" child who does not cause tr...

  22. Thanks! We see Dr B and we are currently in the pre-approval process (the numbers show that he needs it). He may need treatment for a lyme co-infection first so we will consult the Lyme specialist first. How many rounds did these kids have? I know how hard it is for my older DS and it will be hard to watch my little guy suffer the side effects.
  23. We are considering IVIG for our 4 year old Pandas diagnosed child---possible Lyme coinfection. Has anyone done this with a child this young? He is VERY immune compromised and is constantly sick and symptomatic. We understand how it works and are currently on round 3 with our eldest. Any thoughts would be much appreciated. Thanks!
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