Jump to content
ACN Latitudes Forums

All Activity

This stream auto-updates

  1. Today
  2. Yesterday
  3. Earlier
  4. One more thing, did your daughter ever get headaches along with the stomach aches? This is sort of puzzling too...thank you!
  5. I am sorry to hear of your discouragement. My child has not had IVIG so I don't know, but I hope that you get some help from those who have experience with it. Hang in there.
  6. Wow thank you so much for your reply and all of the detailed information you shared! What type of allergy testing did you do? And did you do it with your regular doctor? I am definitely wanting to investigate food allergies. As for the low FODMAP diet maybe I will look into that. I have of course heard of it but I have been hesitant to take the plunge and do a big dietary change -- but knowing how it helped your daughter definitely tips me more towards trying it. Thanks again for your kind reply!!
  7. Hi there, Ahhh, it sounds so familiar, like a trip down memory lane. :) My daughter, now 16, had stomach aches and constipation her entire life. She had seen numerous GI docs, nutritionists, etc, to try and treat it to no avail. We found the combination of Magnesium Citrate and buffered vitamin C to be the most effective for the constipation; we played around with the amount to get it so it worked, but not too well. Her PANS doc expressed that the buffered C really needs to go with the Magnesium Citrate to be most effective- and she was also particular that we get the Citrate form of Magn
  8. My daughter 15 is getting the monthly 3 day course of IVIG and she just left 3rd treatment. I hear how kids feel immediate results, but she is still struggling and sometimes after symptoms are worse. I have been told it may take literally 6 treatments before I know if it’s working but doctor is doing lymes test next. so confused and discouraged
  9. My daughter 15 is getting the monthly 3 day course of IVIG and she just left 3rd treatment. I hear how kids feel immediate results, but she is still struggling and sometimes after symptoms are worse. I have been told it may take literally 6 treatments before I know if it’s working but doctor is doing lymes test next. so confused and discouraged
  10. Hi, my 7 year old daughter hasn't been officially diagnosed with PANS but I am pretty sure she has it -- I am her mom and I have chronic Lyme, so it makes sense. Anyway, I wanted to ask if others have had problems with stomach aches? She has always been constipated but after a very long protocol for that (mostly magnesium), her constipation is better, but she has a lot of stomach aches. I am wondering if anyone has gotten to the root cause of stomach aches in this group of kids? We are currently doing some testing through a mainstream GI specialist but am wondering what more alternative tests
  11. My son completed another round of tests showing Mycoplasma IGg positve but the doctors tell me this is insignificant. After all the other tests showing normal, the doctors think he has Seronegative Autoimmune Encephalitis. Although they advised me this was not a diagnosis, I am stlll waiting on some sort of treatment plan. There is not much information I can research, anyone familiar with this?
  12. Hi, My 2.5 year-old daughter had an acute onset of OCD/personality changes after a recent bout with strep in early September. It was like she woke up a different child. She was 100% typically developing before this episode, and I now feel like everything has fallen off a cliff. Over the course of that Sept week she developed, tics, a stutter, aphasia, extreme mood swings, and behavioral regression. My pediatrician (god bless her) said we should swab for strep. Lo and behold, my daughter was positive. My daughter stoped sliding downhill on augmention (she's still on it..going on week
  13. Hi -- we really appreciate this detailed report and it's heartening to know that you've found some answers for your daughter. I especially appreciated knowing what Environmental Health Center of Dallas. I wasn't sure how things were proceeding after their founder. Dr. Rea (who was on our advisory board) passed away. They were always excellent for mold issues plus so many other environmental issues. I applaud you on moving out of your home to get here way from mold, and you've seen an improvement. I can imagine a rotation diet would be too much to try in someone else's home without a functionin
  14. Hi Always Worried Mom -- I hope you have a response soon. You have a complex post (as many PANS ones are!) and we know a lot of parents are maxed out trying to deal with virtual learning. If you would like to explore approaches that we often recommend for tics, please drop me a note through our contact page on the website https://latitudes.org/contact-us/ Let's hope you find some good answers soon, Sheila
  15. Wow really??? Not a single response? Thought I’d get some help here but I guess not.
  16. Hi Sheila, We decided to not go to the follow up appointment and instead booked an appointment at the Environmental Health Institute of Dallas to get more thorough testing and evaluation done. It has been a little over a month since we went. The first day they did all kinds of bloodwork to test the strength of her immune system and the overall health of her body. Everything came back normal, aside from slightly high platelets (which is subjective without having had them tested before to know her baseline). The following day we began skin testing for the top suspected culprits based on the
  17. One more thing...we gave Advil for several days which has always helped significantly, and this time it hasn’t helped at all. Maybe because his inflammation level is normal right now?
  18. Oh yeah forgot to mention that his blood tests also showed low leukocytes, which from my understanding is related to immunity
  19. Background: My 6.5 year old son started having nonstop tics last July, along with emotional breakdowns. This went on every day for 3 months until finally a doctor agreed to try antibiotics, and 48 hrs in the tics were gone. We did 10 days of amoxicillin. He had done blood tests right before we started the antibiotics and his ASO was 296 and ESR (inflammation) was 12. He did another two blood tests, one a month after antibiotics and the next one was another month after that. Results were (respectively): ASO: 236 ESR: 18 ASO: 250 ESR: don’t know 3.5
  20. Hi vvny. Have you had any success in the last few months? We are currently in a very similar situation with our 12 year old son. Vocal tics every few seconds all day long. We also tried Guanfacine with no improvement. We are now starting a trial of Clonidine.
  21. Hi! I’m happy to see your comment as well, it’s great to find people who can do the same thing as me but especially people who are doing it in 2020 :)) I agree; my head often feels as though it can’t stop thinking, both during the day and at night. Like you said, everyone thinks it’s really cool, and it is, but it can get incredibly frustrating and very tiring. I’m glad to hear that you also rearrange sentences and words to make them into a ‘good’ length; it makes me feel a bit less weird and less isolated! And it’s really interesting how you count the pen strokes in letters. I’ve n
  22. Hi tropea22 - When I was younger i had blue tinted glasses, Lights, screens, paper, etc. I found it to be very helpful for my Tourette’s because the color was so soothing for my eyes. After that I went 15 years without it and am just now getting back into using a blue tint. I’ve noticed it calms me and my tics I nstantly. ive noticed with tics that we are so sensitive to not only our diet, but every other one of our senses as well. For me loud noises trigger me, bright lights esp white, too much screen time and even watching tv will trigger me, my emotional state, different textures of cl
  23. I would like to add that "What to Do When You Worry To Much," by Dawn Heubner, is also very helpful.
  24. Thank you so much for the hope!! How long was your son's journey?
  25. Hi usernamecat, I know it's so hard to limit screen time these days! Schooling often revolves around it. I'm sorry, I hadn't noticed your question about the environmental allergens. So much depends on the situation. Some sensitivities can improve with time and avoidance. And some allergies may improve with age especially if the immune system is strengthened. Of course, treatments can also reduce the response. But if someone has a mold allergy, for example, and they continue to live in a moldy home, their symptoms can be expected to be aggravated. The classic approach is "avoidance, av
  26. Hi -- How did your follow up session go? I had never heard that a deviation in uvula is connected to neurological issues. This could be a clinical finding that your chiropractor has noticed or something more widespread. I saw a bit online about a possible connection to the vagus nerve. It would be interesting to learn more. Maybe you could ask him for more details on this, if there are any case reports he could share. Did you do the allergy test? Please give us an update and let us know how things are going if you get a chance.
  27. Has anyone’s PANDAS kid contracted COVID 19? If so, please describe symptoms and what happened afterwards in as much detail as possible. I’m sure I’m not the only one worried about what will happen to my PANDAS son should he get Covid.
  28. Sending hope to new parents out there struggling. There is hope. My son is better now. He’s almost 17.
  1. Load more activity
×
×
  • Create New...