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Everything posted by landamom

  1. Hello, we just did our first HD IVIG. Our main issues are tics and intrusive thoughts. For those who have done IVIG, if it is going to help, how long before you see any results? Especially interested in knowing if you've seen help in reduction or elimination of tics. Thank you!!
  2. Hello. My dd is finally scheduled for her first IVIG this week after 11 months of waiting. As we near the date, her symptoms are exploding - tics and intrusive thoughts. She doesn't seem to be sick so I don't think she has caught anything. Best I can guess is that she is just super anxious about IVIG. I was wondering if anyone else has seen this in their kids before? Thanks in advance -
  3. So some of you may remember that my PANS daughter is compound hetero for 1298 and 677. My husband has one 1298 mutation. My other daughter has one 677 mutation. Of course, being the mom I was more concerned with everyone else and didn't even think to get myself checked! Well I was tested recently as part of a regular physical and it turns out I am homozygous for C677T... and my homacystine levels are already high. I was glad that I somewhat had an understanding of what it meant but now I am in supplement mode and trying to figure out what I have to do to bring my own levels down. I'd love some advice from anyone who's dealt with the double mutation and high levels. And to those moms out here with kids who have MTHFR issues - get yourself checked!! Stress can make things worse, fast.. and I would say all of us on this board are dealing with STRESS!!
  4. She is one of the doctors we have used. She is VERY aggressive, which may or may not be a good thing for you as I don't know your child's story. Be prepared for her to recommend a complete lifestyle change, not just a medication or two. You would literally need to have thousands of spare cash to do everything she recommends (no joke). We have picked what was feasible for our family and it has really helped our daughter. Please feel free to PM me if you have any other questions! Edited because my spelling was terrible!
  5. We are using the Vital-zymes by Klaire Labs. They are carb, protien and veggie enzymes. They do contain some vegetable cellulose if that is an issue for those on an XR med. I'm not familiar with that. My dd is on regular Augmentin.
  6. Hi everyone, as so many of us have picky eaters and kids with food issues, I wanted to share our experience with digestive enzymes. I'm kind of superstitious about saying anything is helping, but I will get past that in the hopes that maybe it can help someone else on this forum We've been giving our DD digestive enzymes now for 1 month. They are chewable and she takes one with each meal. As you may have seen in previous posts, this is a child who has not gained weight in close to two years. She is growing in height, but at a slow rate and has stayed the same weight since at least September of 2011. Well, in one month she has gained TWO POUNDS! I am almost crying as I type this. She is eating more at meal time and is less picky, more open to trying new foods. I really believe in the importance if gut health and the gut as our second brain. I really believe these are working for her and I hope someone might find this helpful for their child, too.
  7. So appreciate all the feedback! It sounds like something worth trying, thankfully. Laura, the 23andme test is something that's been in the back of my mind for a while now as we know dd has an MTHFR mutation. I have to say though I just feel so skeptical about it in many ways. It sounds like you have found it to be helpful? Hard to believe all that can come from spit did you use the genie to translate the results? I have heard several horror stories about the yasko test... Just pages and pages of supplements. Basically completely unrealistic.
  8. Tahnks for the response! So what do you think it's killing that is causing die off? And have you seen positive results yet?
  9. We are looking at adding curcumin to our routin for DD, but honestly I'm getting so tired of adding things that seemingly do nothing. Would love to hear if anyone has actually seen success with this. Thanks!!
  10. I woke up this morning wondering the same thing! The pollen has started here this week from the pine trees and I am itching like crazy and my eyes are swelling up. A the same time, my DDs chronic cough has flared up this week. It started last April, same time but then subsided towards the end of the summer. We assumed it was a tic, as tics are her main PANS symptoms. But now I'm wondering if allergies can cause flares even before any kind of infection is present? Also, does anyone know if allergy blood tests are accurate? She had one done last year and nothing showed up.
  11. It would actually be worse if he was compound homozygous ... With two copies of each mutation. My dd is also compound hetero and the biggest issue has been finding two doctors who agree on anything regarding MTHFR. We've seen several of the PANS specialists and they all say you don't need to do anything unless the homocysteine levels are high. I think it's so new very few doctors really understand it. We've started with using Vitaspectrum instead of regular vitamins with folic acid and B 12. Statistically speaking about 70% of the population has an MTHFR mutation. I know my husband has the 677, so I assume I have the 1298
  12. Hello, we just got our CBC back that we do every so often. My dd's A/G ration is high and out of range. Seems its been creeping up for a while. She has an immune deficiency of her IgG - low overall and low in two subclasses so I am not sure if it would be related to this or if it is more of an autoimmune marker? Pediatrician wasn't completely clear but felt it could be to do with the immune deficiency. Just wondering is any of your kids have experienced this on their labs and if so what explanation were you given? Thanks!
  13. Thank you so much for all the info and advice! Good to hear you have all been able to tolerate it for long periods. I had no idea about the pre measured packs - I will check in to that. Have you all felt that the Mepron has helped with Babesia? It's one of those things where it's like, how do you know if its gone with unreliable tests and Lyme still being an issue. Thanks again.
  14. Yes, I would ask Dr.B too because I just read the exact opposite last night ... That Diflucan can cause liver issues and Nystatin is better for long term enough to make your head spin!!
  15. Sure does get overwhelming! And it's especially hard when there are different docs involved. So many different opinions. I thank God for this forum.... I would have completely lost it ages ago!
  16. Hi all, I know this is not a Lyme forum but this is much more active then the Lyme forum and so many of us are dealing with PANS and Lyme. My dd just got IGeneX testing with Dr. J. Her Babesia Duncani test came back as a sort of positive. It was a 20 which is considered borderline positive apparently. This was very annoying to me as we've been tested for Babesia two times before and it's been negative, and she has no symptoms of it. Regardless, dr. j recommended putting her on Mepron. It is probably one of the nastiest meds out there as far as texture and consistency goes. My DD was actually on it for a month last summer when her first LLMD said she may have Babesia. Anyway, I thought there was an issue with it being quite toxic - dr. J says its one of the safest drugs out there and is even given to pregnant women. But I was wondering if any of you have experience with it, good bad indifferent? Think you so much!
  17. My dd just finished the last of her Nystatin... Wondering if we should refill because I do believe it helps. Have any of you heard of serious side effects of being on it for a long period? Also regarding the blood work, my dd tested positive for candida in a blood test, which is why she was prescribed the nystatin. Although my understanding is that it's a bit of a controversial test (there's a shocker). Some feel it shows real yeast overgrowth and others say that it is just showing whatever yeast is being cast off naturally from other parts of the body. Real true systemic yeast overgrowth in the blood is supposed to be life threatening.
  18. You may want to look into digestive enzymes... We started on those and they have been quite amazing. We also do natural calm magnesium at night and that is really good for keeping the bowels loose. Does he go to the bathroom regularly during the day, or just when he has those episodes? Even if it is "just constipation", that isn't normal and is especially bad for our kids because it means they are not detoxing properly. I would also pay close attention to what he is eating, maybe keep a journal and see if there is a pattern to what he is eating and when the episodes occur. Dairy is the biggest offender when it comes to constipation. Also, if you haven't had him tested for Celiac, I would do that too. Celiac can manifest in many ways and can happen at any point. Good luck and keep us posted!
  19. I can't speak to the Bartonella, but Dr. J put us on Nystatin also even though Dr. B had us on Diflucan. I am pretty sure that Diflucan has an interaction with Azith, and Nystatin does not. best of luck to you!
  20. Jag- please do give us more info on Enhansa! We've been looking into starting on curcumin as a supplement. I see on the compounding pharmas website that if a dr. writes a script for it, it may be covered by insurance. Does your son actually take it for yeast? Or is it a replacement for antibiotics that just doesn't have the yeast cause side effects of traditional abx? Thanks
  21. I think you can also get in quicker to the Jamsek clinic in DC. He is an LLMD that also works with pandas kids. My understanding is that he doesn't take on any patients himself, it is the PAs that you see. But that may mean you get in quicker? good luck.
  22. Teri, we were there last months for the first time. Totally agree with all the other comments. Only thing I would add is to write down any questions you have! It can get confusing and overwhelming. He is wonderful, I just wish he could clone himself. Please keep us posted!
  23. Hi Hayley, It's great to hear your daughter is doing well! We have not revaccinated our dd (who also has CVID) and will not do so any time soon. We also see Dr. B. We are starting to see an immunologist who is closer to us but have not talked about any vaxes yet. I believe the thought behind not vaxing PANDAS kids is that, even though it is technically a dead virus being injected, it is still designed to to create an immune system response - ideally IgG antibodies. So something has to take place to make the immune system do this. With PANDAS/PANS kids, it's the same as any other assault on the immune system and can increase the autoimmune response that is taking place, increasing inflammation, etc. and continuing the cycle. Btw, my dd got her pneumococcal strep levels tested and was at minimum or below for all of them. Did you have any protection at all show up? Interestingly we had HIB, Diptheria, and Hep B also tested. She showed 0 immunity to all of those. Best-
  24. Thanks for updating! We have not had IvIg yet, so I can't offer anything except, good luck and its exciting to hear they are seeing success! I hope you did get IvIg but it sounds like either way you won't be waiting too long Thenmama- would you mind expanding a little on your IvIg experience? How long did you see a backslide for in your kids? Also I was wondering, for personal reasons, if either of your children had tics? We are deciding on when to do IvIg and I am trying to determine if we should just do it now or wait until school is out for the summer. My dd has tics that get pretty bad and I would hate for then to get worse for the rest of the school year if we go ahead now. Thanks! Please keep updating, Misty! Best of luck!
  25. Btw, we've also had an appointment with Dr. Bhakta, if you need any info regarding her. I can't seem to find anyone else who sees her but she is on the list of PANS/Lyme docs.
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