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momslove

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Everything posted by momslove

  1. Our healthy DS played baseball and basketbell--so no impact from sports pads. His stretch marks are across his back. Family doc shrugged at "stretch marks". We joked that he grew too fast, now about 6'4". He is very lean/thin. My DH was also tall and thin at that age. The Nurse Practitioner who said he should be treated if they are, in fact, from bartonella has not seen him. She is treating our daughter. She said that "bartonella likes the brain" which is particularly frightening to us because our DD has suffered immensely from severe OCD, primarily...
  2. Rowingmom, do you know if your LLMD would be treating your DD any differently if the infections were not congenital?
  3. Our DS is 18. He recently graduated from high school--an honor student who played varsity sports. He is working a summer job picking berries and rocks. He is going to college in the fall. I add this to emphasize that he has no "symptoms" other than the "stretch marks".
  4. As DD with PANDAS/PANS is being treated for lyme and Bartonella, we mentioned our DS also has "stretch marks". He is healthy and "typical". The NP treating DD said DS should be treated for bartonella if the stretch marks are in fact bartonella rash. What would you do?
  5. DD is now also being treated for lyme and bartonella. I read some things about congenital lyme, but don't understand how you would know. I was treated for lyme before I had children. Is there a way to know when a person was infected? Is the treatment different? (We don't know of any particular time DD had a tick bite, but in our area I wonder who hasn't been bitten by a tick?)
  6. When PANDAS/PANS attacked in our home our dd was in 4th grade. We went first to our family doctor who really didn't know what to do. We had actually heard about strep and behavior, but when we asked him about it he talked about "fringe medicine" and chasing after wild ideas. Some time prior to all of this, I had read a book by Doris Rapp about allergies and behavior. I think it was, Is This Your Child. We took our dd to a clinic in Wisconsin known for their use of sublingual allergy treatment. All of our dd's allergy tests appeared to show only very mild responses, but they prepared drops for us and recommended that we also cut corn from her diet as much as possible. She started to feel much better--eventually even appeared recovered to us although she would say there was still a little bit... She would take drops every day, regularly. She could also take extra if she had extra allergen exposure or, in her case, if she "felt" a need. This didn't happen often, but it did happen. She would call me from school some days to ask for drops because she was feeling increased anxiety. She would feel better shortly after having the drops. When we saw our family doc and she was feeling good, he asked what we had done. I could tell by his face that he thought the allergy approach was nonsense, but our dd "testified" to him about the difference the allergy drops made for her. Thankfully, he softened and told her that was great and that she should keep doing what she was doing. Unfortunately, we did not... Maybe it wouldn't have mattered... Try not to beat myself up about it... She did well in 5th grade. We started allowing her more and more corn in her diet and eventually stopped using the drops. She was doing fine. In 6th grade she fell off the cliff again. This time, her OCD/anxiety would not allow her to use drops again. Her eating was restricted and ANY contact with plastic was "bad". Medicines were probably "bad" too. The bottle of drops (medicine) had a plastic pump. We eventually got to a place (with the help of a PANDAS doc) when she would use the drops again, but then we saw a new doc at the allergy clinic who wanted to tell me that the notion of PANDAS was highly suspect. His biggest recommendation to our dd was that she should stop washing her hands so much... I believe that doc is no longer at the clinic and I still think the clinic is great, but have not gone back. (Also, our insurance has not covered any services at this clinic because they treat with allergy drops.) I hesitate to post this because I feel like I have failed. Our dd is in 10th grade, but hasn't been able to get to school for months. I think I should dig deep for the strength to enforce diet changes (especially the corn). There just seem to be so many other factors and she can be very difficult and I feel bad for her and I'm tired... But, yes, I believe allergies (seasonal and otherwise) have a significant impact for some of our kids.
  7. Feeling foolish. I believe I meant flare, not flair. Don't know how to edit the topic title...
  8. So DH, DS, and I all have head colds. Our PANDAS/PANS DD has a flair of tactile sensitivity. She told me at one point it was so bad that even the air was distressing to her skin, particularly her hands. DH was also recently treated for shingles. Our DD currently takes augmentin, levothyroxine, fluvoxamine, and probiotic. Previously had T & A and one HD IVIG. So, would you just ride this out or would you look for something else to "do" to try to treat?
  9. Yes. I'm asking about that type of direct link. Is it completely individual or is it something that might hold true for several people? In other words, if a "different" body odor or lip pursing/chewing resulted from a particular infection in one person, should others with those symptoms look for that infection? Or, if those symptoms responded to a certain supplement for one person, should others with those symptoms try that? It's probably not that simple, but I'm searching...
  10. Is there any real link between a specific symptom and the trigger or the treatment? It seems I've read posts that suggest people are doing this, particularly with lyme or related infections. Just in case there is some validity behind this, I'm sharing a couple of specifics of my dd hoping people might point me in a helpful direction. My dd has significant OCD. She has, at times, had a different body odor that I can't really describe. It was just notably different without any real diet change. She also does this thing with her mouth when she is having more difficulty. She purses her lips and moves them around in a chewing motion. Sometimes she seems to have to stop in the midldle of talking to do this. She chews a lot of gum--I think to give her mouth something else to do. Any thoughts?
  11. Our daughter's IgA was 50 when last tested before her high dose IVIG. We specifically asked about the risks in getting IVIG with the lower level of IgA. We were told that the risk comes when the IgA level is even lower, but I don't recall how much lower. I have read somewhere that there are IVIG products made for patients with low IgA. Our daughter had no problems with the IVIG and her IgA level.
  12. Our DD has had long stretches when, because of OCD thinking, she has been unable to brush her teeth. Our dentist recommended a probiotic that provides "the necessary beneficial bacteria that are naturally present in our mouths" (from the pamphlet for the probiotic). The three probiotics are all strep probiotics. We were told by a PANDAS doc that some PANDAS kids appear to react negatively to those probiotics so we have tried to use others. It always seems to be a best guess, balancing act...
  13. That's awful! In August of 2013, our daughter's in-home IVIG infusion (2 days) cost almost $14,000 with $13,033.87 being the charge for the "drug". She weighed about 180 pounds--weight being a factor in the amount needed. We did sign a form with an estimated charge that was close to the actual charge. Is there some kind of patient advocate who can help?
  14. Our current insurer has located a provider they called "preferred" and told us we could request prior authorization to see her rather than our current provider. They denied any coverage for our current PANDAS doctor. We are not wanting to change doctors, but would consider another opinion. When I googled the name they gave us, I found no indication of interest or expertise with PANDAS/PANS even though that is supposedly what the insurance nurse navigator was seeking for us. I'm wondering if anyone has experience with a pediatric neurologist in the University of Wisconsin Hospital system. Perhaps, you could message me and we could share contact names and any recommendation you might have. Otherwise, can I get some guidance on questions to ask BEFORE scheduling anything to make sure we would not be wasting our time and money?
  15. The appeal committee reviewed our appeal today. They now have 30 days to tell us their decision. I spoke with the advocate yesterday to answer some questions she had. That left me thinking... Do any of the leading PANDAS doctors refuse to use IVIG for PANDAS/PANS treatment or is it safe to say that it is a standard treatment option?
  16. I would love to be able to report in our appeal that the IVIG made all the difference, but it's not that simple. She did show improvements and started back to school full time! She had much difficulty doing so, but did it. On Monday of the 4th week, she said she had a "gunky" throat and it was downhill from there. She has not been in school since the middle of October except 2 partial days in January when we tried to transition back to school...
  17. I'm a new participant to this forum, but have been following the posts for some time now. Our 16 year old daughter received IVIG this past August as recommended by two doctors often mentioned as PANDAS experts. Prior authorization by our insurer was denied because it was considered "experimental due to inadequate evidence of the effectiveness of IVIG infusions for treatment of PANDAS", but we went ahead. We have filed an appeal which will be considered very soon. In our initial appeal letter we presented information from medical literature. (This forum was very helpful to me in that regard already.) We noted the history of treatment provided to our daughter, the ongoing suffering of our daughter, and the laboratory evidence of infection and immune system dysfunction. We won't be able to attend the appeal review meeting, but may submit additional information to be considered. Have we omitted important information that should be considered by the appeal committee? Thanks.
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