Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by Kaki

  1. The immunosuppressants are hardcore. But, I have wondered about the antimalarial drug, hydroxychloroquine (also has side effects)? It has helped me for lupus symptoms.
  2. Reading the question about how many have tics, made me wonder about Austim. So many of the behaviors I read about here sound like Autism. My daughter was dx with both. She has stimmed since she was a baby. But, I would attribute that to Austim and not the PANDAS. The PANDAS dx came with the sudden onset of OCD/anxiety and Strep.
  3. No tics. But, my daugther is on the Spectrum and stims. She's a hand-flapper and a hopper.
  4. Just got our results back from a stool study: high yeast = Diflucan for three weeks. There was also a low IgA. Can someone tell me what the low IgA means?
  5. My daughter stims. Not a tic though. She has stimmed since she was 6 months old. She hand flaps, hops and crosses one eye. I couldn't do all of that at once if I tried. The good thing is that she has learned that it's not appropriate to do in public. So, now she only does it at home when she thinks noone is looking. I'm very eager to see if the new treatments will have any affect on the stimming.
  6. That makes sense, because so many kids have gut issues. Is it a compounded cream? I've heard of sublingual, but not a topical cream?
  7. Neither, actually. I posted a link in this thread that explains it better than I can.
  8. My son has the same thing! Would you mind sharing dosage/weight for the 5-MTHF (and maybe brand/source too?) Thanks! Here's the link to the brand that was suggested: http://www.thorne.com/Products/Neurological-Support/prd~B129.jsp. They give a good explaintion of the 5-MTHF. Dosage is a good question. She didn't tell me, and I forgot to ask.
  9. According to her doctor, the folic acid to be supplemented in the form of 5-MTHF because of the genetic mutation. From what I've read so far, this is a fairly common mutation. The mutation disrupts the enzyme function that breaks down folic acid into the form that is needed to "fuel the brain." The 5-MTHF form of folic acid is what is used for many subsequent prosseses that "help drive" neurotransmitter function (serotonin & dopamine), methylation, and "protect against too much histamine." Hope this maks sense. I'm still trying to understand it myself.
  10. Thanks for the Valtrex link. Since Ren has been dx with both ASD and PANDAS, I guess her doctor is looking at this from both angles.
  11. I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS. I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone el
  12. Hi Vickie, I've read that it can be difficult to get in touch with her directly. Would it be better to contact someone in the lab?
  13. We are using Omega Mood. But, it takes 3 tablets a day. And, it's still not the recommended dosage. I wonder why our docs don't prescribe Lovaza. I know it's for cholesterol, but it seems like it could be prescribed off-label. Has anyone looked into Lovaza. I'm going to look into the Omapure too.
  14. I know this has probably been posted a hundred times. But, I can't find it. Can someone give the contact information to request the Cunningham tests? My daughter's been doing worse lately, so I guess now is the time to have the tests done. Thanks!
  15. Thnnks for the cookbook ideas. I'll have to look for them.
  16. Glad to see your post. We are in the same place. I'm on a gluten free diet and my daughter is a vegetarian. So, it can be challenging to come up with meals. I frequently end up cooking several things. There are lots of gluten free recipes online.
  17. Glad your appointment went well. She does order lots of bloodwork. Did she order a DNA assay? I didn't see that on the list. The MBL test is looking for a possible source for an immunodeficiency.
  18. We saw Dr. Khalil, filled out lots of questionaires, and bloodwork. We got a referall for CBT and Dr. Sleaseman (Immunologist). We saw Dr. Murphy maybe 5 minutes. That was that. No follow up. They sent a report several months later diagnosing my daughter with what we already knew she had, autsim & anxiety/OCD. The bloodwork was extensive and mostly normal. We are still waiting for our appointment with immunology. It really wasn't helpful for us. I hope it goes better for you.
  19. If you are looking for more information on IVIG, here's a very informed and acitve Yahoo site: PID Support. It is a site for people with primmary immunodeficeny, so no advice for PANDAS. But, lots and lots of information on IVIG.
  20. In response to antibiotic resistance, what I was told is that an individual does not become resistant. It's the bug that becomes resistant in a population. My 8 yo had to take daily antibiotics for 5 years for bladder reflux. At one point, one antibiotic stopped working, and she had to switch. The antibiotic didn't just stop working for her. It stopped working for many kids with this same problem. The bug evolved. Like someone already posted, the big concern is the impact that the antibiotic can have on the good bacteria. Probiotics help. Sorry she's having trouble swallowing the
  21. Carol -- Our DS13 was diagnosed with anxiety and OCD for years before we found PANDAS, so we have been through what I will unaffectionately call "the psych wringer." Our psych didn't buy into PANDAS, either, until I continually buried him in research, papers, studies, books, etc., as well as a thoroughly documented, long-term view of DS's personal history. After almost 5 years, he finally came on board about a month ago! Anyway, is your DD taking Zoloft now? Our DS is taking Luvox, though we aren't convinced it is doing anything to help him. Basically, when we began PANDAS treatmen
  22. Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent ra
  23. Just to add onto what Karen is saying--Our daughter was SEVERE (ie, one of the worst cases of crippling OCD storm that many of the professionals had ever seen.) Mute for 3+ weeks, eyes closed, painful positions, regression, bathroom accidents, severe. She cleared with a prednisone burst and full strength antibiotics. It was certainly a benign thing for us to try...though at the time I was scared to death. We could not find anyone to do anything more at the time--or I would have...but, having said that, with us, with a very severe crippling case, a prednisone burst and antibiotics snappe
  24. We are in Florida. I thought we had a doctor with Dr. Murphy, but our appointment with her has not really gone anywhere. Her diagnosis was ASD & OCD (r/o PANDAS). But, noone ever really followed up with us on the bloodwork, and how to rule out PANDAS.
  • Create New...