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landamom

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Everything posted by landamom

  1. This has been the story of my DD's blood tests for almost a year now. On and off low WBC and consistently out of range neutrophils. As mdmom said, the WBC count is just barely out of range. That cab be from recent viral exposure or abx usage. Same goes for neutrophils. And that can also signal other immune issues going on. It's my understanding that when a child's bloodwork is out of whack, it normally gets looked at under the microscope for irregular cells... Check with your pedi on that but unless you have other signs of seriious illness (anemia, weight loss) don't be too stressed! Good luck-
  2. An enlarged spleen and liver should be something a pediatrician can give give multiple reasons for... Did they not give you any insight? My dd has her spleen and liver prodded every time we go in for a visit and part if that is because it can be CAUSED by antibiotic use, along with a bunch of other things. As far as the CD57 test goes that is a really flimsy way to diagnose Lyme. I'm not saying that your child doesn't have it, but just basing the diagnosis on that test is troubling to me. Its controversial at best. What symptoms does your DS have? If I were you I would keep on that LLMD until you hear the other test results. Hopefully you haven't been told they will just go over them at the follow up visit and to treat for Lyme until you hear otherwise. We've been there done that and it's cause for alarm. I'm not trying to be upsetting, just want to make sure no one else goes through what we went through. Best of luck-
  3. MycoP can be transmitted by ticks but it is also a very common air borne bacteria that is all over the place. It is opportunistic in that it can show up when one has pneumonia but it can show up any time. Most people have had it, probably multiple times, but it becomes chronic when you can't clear it (just like strep or a lot of other things our autoimmune kids are susceptible to for whatever reason). IgG levels indicate an older infection (those are memory antibodies that show exposure, not always a current issue) IgM mean its a current infection. IgG can also mean a chronic issue - It's really dependent on if there are symptoms of it or not. Treatment for mycoP is generally Zithromax but if there is a chronic infection that is stubborn it is sometimes treated with multiple rounds of different abx. Keep in mind that with kids who have PANS, they have already turned that corner to having an autoimmune issue. You can be infection-free and still have the autoimmune issues. If MycoP igg levels are high, it could be that it triggered things but not nessesarily a current infection. You really need to look at the symptoms of MycoP and see if they apply and also check the labs to see if you are dealing with elevated IgG or IgM. Good luck!
  4. Hi all, So my DD's prescriptions for Augmentin and Zithromax ran out and and we didn't have any refills. She has now been off Zithromax for two week and Augmentin for a week. She had been on both for the past 6 months and had basically plateaued since at least November. I personally didn't think they they have been doing anything for a while but for some reason Dr. b has wanted to keep her on them. Anyway, she has actually seemed better and certainly no worse, since being off them. Am I nuts??? I am almost scared to get her back on them at this point. Has anyone experienced this before? Thanks-
  5. It's funny you ask this because we just had an appointment with Dr. jones this week. My daughter has/had Lyme (she was cdc positive, so it wasn't really debateable) and we had seen a local "LLMD" . He did the CD57 test but we never went back and I have never had her CD57/8 results interpreted by anyone yet. I asked Dr, Jones about it and he said said it was a garbage test! Basically that it means nothing in children.... You can have a 0 and be fine or a 2000 and be fine. Those were his exact words Not sure if you are familiar with Dr. jones but he has been treating kids wi th Lyme since the 60's and has literally treated thousands from every country around the world. In my opinion it's safe to say he knows more then anyone when it comes to kids and Lyme. Just my two cents!
  6. I would second nystatin as a preventative but if he is better on it and then backslides while off it, that's a pretty good indicator that its a persistent yeast overgrowth issue. Having dealt with it myself, yeast overgrowth is not a quick fix and really needs dietary change to take place otherwise you are only putting a band aid on it. The best thing to do for yeast is eliminate refined sugar along with the antifungal. Otherwise, you may be killing yeast but then every time you have sugar you are feeding the yeast that still is there, causing it to multiply. I hope that makes sense. And pandas or not, yeast overgrowth in kids causes major behavioral issues.
  7. Hi all, we have our first appointment with Dr. Jones in Ct tomorrow. We've waited months 4 months for this. Three feet of snow will not stop me I was wondering if any of you who have seen him already have any suggestions you can share? Dr. B works with him so I am assuming ng he knows enough about PANDAS too. Thank you!
  8. My 5 yo non - pandas child is likely having her tonsils out next week. We have read lots of comments about doing the sterilizing run of abx prior to the procedure in a PANDAS child. We can't find anyone who will prescribe that for her, as she is 1) not a pandas patient and 2) does not currently have a throat infection. So I wonder if anyone has heard of a tonsillectomy actually causing pandas in an otherwise healthy child? Obviously we are concerned because we already have one PANS child and know there is an increased risk for the little one based on that. Thanks in advance!
  9. Just wondering but does anyone know for sure that he isn't on the list due to personal reasons from those who run the website? Maybe he didn't want to be on the list anymore? He's a very good doctor but I can understand not wanting to put yourself on a list if you can't actually see any of those new patients.
  10. Thank you to all of you for, as always, the invaluable experiences and insight! Hopefully we will get some help from IvIg eventually. In the meantime I awaiting to hear from our pediatrician regarding checking Thyroid functions and for Celiac disease. I am also going to look into Camels milk... What is the big difference with that particular milk? Would it be similar to having raw cows milk? Thanks again!!
  11. I was told yesterday that he is no longer accepting new patients right now. This didn't surprise me as anyone who is already a patient knows what their office is like currently.
  12. She isn't on anything other then abx. As I said she eats and has a very healthy appetite. She just can't seem to gain weight.
  13. Hello all, my DD8 has PANS and also CVID. Her IgG overall is very low (low 400s) and two subclasses are also very low. She has not gained weight in a year and a half. In fact she has probably lost one or two pounds here and there but has literally stayed the same weight since at least Sept of 2011. She has always been very tall for her age, in the 90 th percentile but now is hardly growing in height either. She's only grown an inch in the past year instead of the normal 2.5 inches for her age. She is now in the 80th percentile for height. She is a very picky eater, but DOES eat and has a good appetite. I'm getting really worried and honestly don't know what I should be looking at right now. Should we be doing some kind of metabolism tests? Metametrix? Our pediatrician has offered up nothing in this regard. Dr. B has said she needs IvIg but will this help with weight gain?? We have been waiting since November for them to submit the preapproval paperwork, so I don't even know when/if this will become an option. Thank you in advance for any advice!!
  14. LLM - you probably know this already, but I've seen a bunch on the forum who use genetic genie to interpret the results of the 23 and Me tests. I can't seem to get myself to go down this path of the SNPs... Yet. I don't understand enough and I feel like it will blow my head off I look forward to hearing your results because you are the guru of info!! ((Bows down to you)) good luck!
  15. Nancy, is this for you or your PANDAS daughter?
  16. Colleen, just an FYI, Dr. Lynch doesn't do consults anymore, but he still has a good protocol page that we found helpful in understanding things... His site is MTHFR.net.
  17. I agree with mercury fillings not being good for the kids, but just keep in mind there are no truly safe fillings... The other ones (resin, etc.) all contain BPA. And also excess Fouride is just as bad as mercury. Just saying, food for thought. As for the flu vax, I know you can request a mercury free vax for any child. I say "just say NO" to the flu vax, but if you really want it, you have to request the mercury free one and then they give you a piece of paper to sign saying you realize its still processed in the same plant as mercury vaccines. Ugh!
  18. Thanks Dut! She is on Zithromax and Augmentin ... Wouldn't that treat any vaginal strep? I guess I could get her a culture. I never really thought about that... Can you culture for yeast, too I wonder? As for the Sach b. I just wonder if that contributes to a yeast infection to begin with. I don't know enough about yeast to know the differences between good and bad yeast. It's so confusing!
  19. Hi all, we spoke with Dr. B today and he thinks my dd8 has a yeast infection based on the fact that she has really ramped up ticcing with no apparent other issues, and her "private part" itches like CRAZY! Has anyone else seen this in their daughter? He said yeast can definitely cause a pandas flare and that external yeast issues can signal internal yeast problems. He has prescribed Diflucan and we just had the first dose tonight. Now for the questions... - is a yeast infection the same as a yeast overgrowth? - how well does Diflucan work? - can I expect some herxing from the Diflucan? - can we still take Sach b. while she is on Diflucan or will it be counter productive? Thank you everyone!!
  20. Thank you Albmum! I believe this is St. John's wort. How does your son take this, is it a pill? also what dosage? Thank you!
  21. I'm sorry to hear this... I know you were very excited about the procedure. Sorry if I am not fully understanding the post but are you TRYING to do a stool test now since getting the transplant? Do you think your daughter is having gut/GI issues since you did it or is it a pandas flare?
  22. So I recently learned about the Brain Balance Center... It's basically a functional medicine type of learning center. It specializes mostly in kids who are ASD, ADD/ADHD but what caught my eye is that they also mention Tourette's and OCD. At the center we visited today, they were familiar with PANDAS and while they don't treat it from a traditional medical standpoint, they work on many of the things that PANDAS can cause. I really like the concept of balancing the two sides of the brain I'm just not sure of its going to be effective on a PANS kid where inflammation is probably a bigger factor. I don't know, it was interesting stuff. Wondering if anyone else has come across this program or considered it? They pretty much do the work of OT, some CBT, some nutrition, they do lab work and make dietary and supplement suggestions. It's kind of a light version of a bunch of different practices condensed in to a 12 week program.
  23. Today has been a pretty good day for my dd, and coincidentally we gave her Advil during the night as her leg was hurting. Not sure if that has helped today. As I posted on another thread, we have also cut out probiotics as my gut (no pun intended) was telling me they were contributing to the tics.
  24. Chrissy, I know that "silliness" tends to be a symptom associated with yeast overgrowth. But I'm not sure if giving a beneficial yeast could contribute to that... Sachs b of course is a beneficial yeast. I would give it a few days. I have to say, my dd is off probiotics now for over a week. Only doing the Florastor and so far her tics have definitely diminished. Maybe it's just a coincidence... Who really knows. But I'll take it!
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