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momofadult

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  1. I can appreciate your concern. My son developed abnormal eye movements with the onset of his encephalopathy symptoms too and it continues to this day. As llm wisely advised, take a video and show it to the doctor as it will help them determine whether it is a nystagmus, opsoclonus, tic or other type of movement pattern. My son's eye symptoms are attributed to the documented effects of the inflammation on his basal ganglia.
  2. My son has used Nuedexta but he does not have pseudobulbar affect. It was given to modulate glutamate. He became less irritable when he was placed on it, but I am now tapering him off it to see if it truly was responsible for the change.
  3. Thank you for taking the time to share the wisdom you have gained from your experiences. It was comprehensive and could only have been learned and told by a mom in the trenches.
  4. Momslove I tried the CBD oil at very low dosages on my son and myself. (I put 4 drops in a capsule. He is 195 pounds.) Unfortunately, it made me feel awful and caused undesirable side effects in him. I was disappointed but curious so I looked up its pharmokinetics and figured out that his current meds and genetics made him more sensitive to CDB's effects. Now I am checking everything! I would expect (hope?) that your doctor took into account the inducing/inhibiting effects of the drugs when they prescribed their dosages. If you are concerned because you are not seeing the effects you
  5. You bring up a very good point. Its a reminder that it is worthwhile to check how the meds and supplements we give our children are metabolized. When I looked further into CBD oil, I found that it is a potent inhibitor of CYP 450 enzymes, in particular, CYP3A4 and CYP3A5. If your child is already taking meds that affect these particular cytochromes, dosages of the medication or CBD may need to be adjusted or avoided to prevent toxicity or poor effectiveness of either. For example, my son takes Nuedexta for glutamate/gaba modulation. Nuedexta is a CYP3A4 inhibitor. Since CBD oil is also a
  6. Thank you! Its always helpful to have a personal recommendation from someone who has actually received services from the practiioner.
  7. For Sacramento, Ca. These two neurologists are knowledgable about many of the issues in PANDAS/PANS but I am not certain they have fully committed to it as an entity so I mention them with some reservations if you have specific expectations. They will work up symptoms of autoimmune encephalopathy and catatonia and will treat with IVIG, plasmapheresis, steroids and other immunosupressives if they determine it might be helpful. They also have experience with autism. They have earnestly tried to help my son. Dr. Michael Chez (pediatrics): Sutter Neuroscience 916-454-6850 Dr. Shawn Kile (
  8. Thank you Mama2Alex. Tried to PM you, but the account wasn't taking messages. I appreciated your description of the alternatives to using traditional and potentially toxic dental treatments and procedures. I have been looking for a good recommendation to a holistic dentist for my adult PANS/Autism son. I live near Sacramento but would drive a reasonable distance to a Northern California holistic dentist. Does your dentist see adults? Thank you!
  9. Did a search for methotrexate on the board and came across this post. Amazingly, it was essentially the same question that I wondered about! My son has been on methotrexate 10 mg. orally, once a week, for the past 4 weeks and I have not seen any improvement. If anything, the generalized movement problems are just a bit worse, but I can't be sure its directly related to the methotrexate since his symptom severity fluctuates naturally. I am sure, however, that it has not helped yet. His eye movement symptoms are the most problematic (involuntary blepharospams, random eyeball movements, and
  10. Thank you for your reply. His doctor chose methotrexate because he has not had experience with rituximab. He has tried methotrexate "a couple of times" and said it helped his patients "somewhat". This was not very encouraging especially since none of the patients he tried it on also had a deficiency of folate. I mentioned the names of other doctors who have tried rituximab (Dr. Frankovich and Dr. Latimer) but I didn't get the impression he would seek them out. I am venting here, but Its not comfortable having to work with people who have so little experience in treating your child's condi
  11. The neurologist has prescribed methotrexate for my son's PANDAS encephalopathy instead of the rituximab he orginally considered. I am a bit nervous about giving methotrexate to my son who also has a folate deficiency because methotrexate depletes folate, but the MD said he will follow his CBCs. My son is already on leucovorin (folinic acid) for his diagnosed folate defciency and this should help, but it really is only a guess about how much folinic acid he needs to address his folate defciciency. I hope the benefit of methotrexate is worth this risk. Anyone have any experience with methotr
  12. Brad's mom, I thank you for your post and have high hopes that your son will recover too. He and your family have been through way too much. I wish you much success at Georgetown tommorrow.
  13. I have been away from the board for awhile. I guess I was feeling downhearted about my son not getting better and discouraged over the inexperience of docs in treating his condition; yet, I stopped by tonight and saw this topic. I am amazed at the varied presentations of PANS and am heartbroken over how many children and families suffer intensely from this autoimmune condition. This board is comprised of an incredibly strong and resilient group of dedicated families who persist through the challenges associated with getting their children's health back. My son has been diagnosed with autis
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