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Everything posted by monarchcat

  1. The advice from our PANDAS doc was absolutely NO flu shots for my PANDAS kids, but that it wouldn't be a bad idea for my husband and I to get flu shots, thereby reducing the risk of bringing it into the house. But shots only. Absolutely no flu mist. I'm not sure how I feel about vaccines in general any more, but my husband already got his and I think I will get mine this year too. I also mentioned something that my pediatrician had said, which was that if someone in the house gets the flu, to use Tamiflu prophylacticly on the kids to help prevent them from getting sick. The dr. agreed with this. I don't know if I like what I've read about Tamiflu, but I guess there are risks and benefits to every decision...
  2. My son is 9 1/2 and has had poor self-esteem/body image for awhile now. He thinks he is fat, ugly and has a particular issue with thinking that his hair is ugly and "horrible looking" (he has beautiful, thick, dark hair). He's a very tall, handsome kid and the way he sees himself is dramatically different. Getting a hair cut is very anxiety-provoking for him and he tells me that "all the kids at school" make fun of his hair, especially when he gets a hair cut. I know this is not true, but he believes it.
  3. Thank you so much for all the advice and info! It really helps ease my mind. If you guys think of anything else that would be good to know, please let me know! Vickie, thanks for asking about my daughter. She's on 100mg/day of azith and holding steady (she'll be on that dose for a year at least) . I think we caught it early enough in her. She just got over a bad cold and so far we haven't seen anything much in the way of an exacerbation. *Fingers crossed* Oh, I do have a question... what time did you have to arrive in the morning, and how long is the child "hooked up"?
  4. It looks like we are heading for IVIG with Dr. B. I'm nervous but I think it's a good thing. DS isn't terrible right now, but he's not where he should be. Sooo... I'd love to hear from those who have done IVIG w/ Dr. B! It will help us all, I think, if we know what to expect there, and what your and your child's experience was, and any and side effects that you had. We live about 3 1/2 hours away so we'll probably drive down and stay over for 2 nights. PM me if you are not comfortable posting your experiences publicly... Thanks for any input!
  5. Dr. B wants my son on a fairly high dose of Omega 3s daily (about 2g/day of combo EPA and DHA). I've always been a huge believer in the benefits of fish oil. In the past I've given him Coromega but I don't like some of the ingredients, so I have been trying to get him to take other products. He can swallow pills but HATES the huge fish oil pills and will mostly refuse to take them. I've tried other liquids but he hates them. The only one he didn't totally hate was Barlean's Fish Oil - lemon swirl, but he'd have to take a lot every day to get up to the dose he should be on. We'd go through a bottle way too quickly and frankly I don't think he would agree to taking THAT much of it. So... I hadn't really considered krill oil and I'm not sure if the "research" is true or not. Supposedly it's much more readily absorbed by the body so you don't need to take as much. That would mean smaller pills which would be ok with my son. Has anybody looked into this or used it? If so what brand?
  6. I give a florastor in the morning w/ his azith, then about 300 billion cfu of Custom Probiotic 6 Strain in the evening.
  7. Ah, thank you. Good to know. But, then, if the main ingredient is calcium carbonate, wouldn't Tums do the same thing? No - don't give kids the adult version. Salicylate is the ingredient in asprin that can cause Rye Syndrome and is why you can't give kids regular asprin. Only use the children's.
  8. A question about the pepto.. I see that the regular "pepto chewables" contain "Bismuth Subsalicylate (262 mg (99mg of salicylate))" as active ingredient, which the Children's Chewables do not contain (children's has calcium carbonate as the active ingredient). Should I assume that we should give kids the adult version then? And would the tablets that you swallow work the same (same ingredients)? DS would probably prefer something he could swallow rather than an odd tasting liquid.
  9. Breastfed my PANDAS boy til he was 2 1/2 (his PANDAS started at age 5... maybe earlier), breastfed my PANDAS daughter til she was 3 1/2 (she's turning 4 this week and had her first PANDAS episode a couple months ago).
  10. My son was not dry at night until he started taking antibiotics for PANDAS. About 3 weeks after starting abx he stopped peeing at night and has been dry ever since (about 10 months now). He was 8 1/2 when he started the abx. He didn't have any day time urinary issues at all.
  11. I mentioned our lyme results in the Immune Complexes thread but didn't want to hijack that thread. Dr. B wanted both kids tested for Lyme, and they were supposed to go to Igenex, but our lab apparently screwed up because they appear to gave to gone to an "Imugen Lab" locally. There is actually more info on my daughter's test (3 years old, just diagnosed w/ PANDAS after sudden OCD w/ strep). My son has been a much more long term, chronic case of PANDAS. Here is a picture of my daughter's results. My son's are the same antibody levels (<1) and he only has a "41" under "B. borgdorferi 49736. Nothing else. My daughter's have a 41 under B. borg. G39/40 and a 58, 54, and 41 under B. Borg. 49736. I hope the image helps explain. Can anyone tell me what this means? I'm thinking we may have to repeat the tests with Igenex and hope the lab doesn't screw up again, but I'll have to wait to talk to Dr. B.
  12. I am right at this moment looking at my son's lab results that Dr. B's office faxed to me today. I'll have a follow up appt to discuss with him, but for the moment I'm just looking them over. He tested low on almost all strep pneum. tests and the C3 is elevated (220 mg/dL, where the range is 90-180 mg/dL). I have no idea what that means! And, dammit, it looks like the lab screwed up because we specifically told them the Lyme was to be sent to Igenex (and it said it on the slip), but it was tested locally instead. He's negative according to the Lyme screen that was done, but it had been done this way before and Dr. B said it was worthless without the Igenex screen.
  13. I can't really address the school issues, but as for the treatment plan, it sounds like the treatment plan recommended to me by a dr. at Boston Children's Hosp by a "PANDAS specialist". I said "no thank you" and brought my children to Dr. B. in CT who put them on a much more aggressive PANDAS-focused plan (rather than attempting to mask the symptoms w/ psych meds). Dr. B was very unimpressed with the idea of once a day penicillin as a prophylactic. Some may have had luck with pen vk, but i believe maybe at a much higher dose (and even then... not really the drug of choice since many strains of strep are resistant). Have you considered a consult with one of the "big gun" PANDAS docs? Has your dd been on full strength abx at all yet? You may find that if you treat the PANDAS aggressively she may improve to the point where the school issues are much less. Good luck!!
  14. You are doing the right thing! You are not a bad mother, you are an excellent mother so just stop that line of thinking immediately. It's normal to be emotional as this is surely an extremely difficult time, but you need to think of yourself as a warrior right now. You need to stand up straight and tall, put your head up and do what it takes to ensure the security of yourself and your children. I've seen with a couple of my own friends that they eventually just wanted it to be over and stop fighting and that's exactly what the ex and their lawyers want. Don't do it. Take care of yourself, too.. find time to just breathe, mediate, etc, but keep your head up and remember that you are a WARRIOR MOM right now. You need to stay calm, but focused, and you will get through all this and come out the other side stronger and better. Good luck, and (((((hugs)))))
  15. I'll definitely continue to vote daily for our supporters!
  16. I'm interested in this. My son has gained a LOT of weight since starting abx. He did also do a 30 day course of pred back in the beginning and ate a ton and gained a lot, but it hasn't remitted. He doesn't really eat that much now (and the steroid burst was 7 months ago) but has continued to gain. He's gained like 30 lbs in the past year, most of it in the past 10 months since starting abx. I don't know what to think. He's always been at the top of the charts for height and weight because he's naturally a tall, big kid, but he looked thin and fit before. Now he looks heavy.
  17. Woo hoo!!!!!! I am SO excited!! Thank you so much, Kelly and Vickie... everyone here knows a thing or two about perseverance, but you two really showed an an amazing strength of commitment and spirit and dedication to this cause and you've done an amazing thing.
  18. His CamKII was 193 and 3 out of 4 anti-neuronal antibody levels were elevated (D2 was normal). I don't have the numbers in front of me. DS will be on 500mg/day of azith for at least the next month while we wait for blood results and after that Dr. B. will decide if IVIG is warranted. He said perhaps he'll do well on just the antibiotics and not need IVIG, but that probably to really get to the root of the problem, IVIG would be needed. He seemed to indicate that the azith dose would be long term, but that we would focus on the short term to see what the blood tests show.
  19. Cool site! Thanks for posting that! I am currently reading "The Probiotics Revolution" and highly recommend it. It's an easy read, but explains a lot about immune function, etc and the way probiotics and the different strains work. Link: http://www.amazon.com/Probiotics-Revolutio...2532&sr=8-1
  20. Can't say enough good things about him. He was wonderful. Listened to us, looked at all our notes and info and results, developed a plan, ordered blood work, etc... my husband and I just sat there and breathed huge sighs of relief. The upshot is that DS9 will be on full strength azith for awhile, and DD3 will be on prophylactic azith for at least a year. (we caught her first episode early and nipped it in the bud with treatment-dose azith for 6 weeks, prescribed by our ped who is great but knows very little about PANDAS). DS could be a candidate for IVIG, but he wants to see the blood work results (immune workup, etc) and he wants to see how he responds to the azith for a month or so. He's been doing really well lately, so we may be on a healing trend anyway. But if IVIG is needed, we have Dr. B in our corner to guide us. It's a great feeling for sure. It was so WONDERFUL to sit with someone who truly gets PANDAS and is totally invested in helping our kids. Funny tidbit.. He looked at DS's Cunningham results and sat for a moment and said, "Wow... Wow... WOW!" I cracked up. It was so nice to have someone who knew what they were looking at! In fact, when we got to the office, the receptionist asked if we had done any Cunningham testing.
  21. I am starting to realize that we have a few off days around the full moon, too. DS has been super irritable today and I attributed it to being over tired from a couple long days (Lots of driving - we went on an overnight visit to CT to see Dr. B!) but he's been SO great lately that it surprised me to see him so cranky and "pandas-y". Now that I realize it's a full moon it makes more sense. The last few months I've definitely noticed an increase in symptoms during the full moon.
  22. Give him Dr. Cunningham's phone number and have him tell her personally that it's meaningless. I'm so sorry that you have to deal with this. (((hugs)))
  23. The first time they said "rare condition" both my husband and I said, "No, it's not" at exactly the same time. LOL I thought it was fairly well done. I think I need to process it and see it again to really form an opinion. There are things that bugged me, but I haven't put it all together in my head yet.
  24. Ok, that article was absolutely, completely, freaking fascinating. Thanks for sharing that!
  25. Bone marrow transplants cure mental illness-in mice
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