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landamom last won the day on July 5 2013

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  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!
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