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Everything posted by momofadult

  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 hoped for it would be worthwhile to discuss it with your doc. Here's some info that might be useful. The subsequent links are helpful too. http://www.ebi.ac.uk/interpro/potm/2006_10/Page3.htm
  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 potent inhibitor of CYP34A, taking recommended doses of CBD oil can decrease the activity of this enzyme and increase the levels of Nuedexta in his body to toxic levels. Conversely, the combination could cause side effects from usual doses of CBD. In addition, 23andMe testing shows my son has a polymorphism in one of his CYP3A4 genes that gives me added caution.
  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 (adult) : Sutter Neuroscience 916-454-6850
  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 light sensitivity) and he rarely fully opens his eyes because of this. He's gotten quite a few bumps and bruises from trying to walk around with his eyes closed! My son does not have a MTHFR mutation, but he has been on high doses of folinic acid for low cerebral folate. This was found in his inital work up for PANDAS. His folate is low in the csf but normal in blood. I can't really comment on how effective folate supplementation has been in protecting him from the folate depleting side effects of methotrexate but his white counts, liver enzymes, and blood folate have remained normal thus far. Tthere is no early way of knowing what effect methotrexzte has on his brain folate without doing another spinal tap. Yes, it makes me nervous too using a drug that works through the folate system knowing that there is a pre-existing folate problem. Yet, Allie's folate problem is different from my son's, she was improving when you posted, and your rheumy has had lots of experience giving methotrexate to individuals with a mthfr mutation. Is she continuing to improve? What dose of the methotrexate does he prescribe?
  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 condition, but that is just how it is for all of us. There is no gold standard of treatment for this. Its trial and error. Nevertheless, I feel fortunate to even have a doctor who is williing to try treating him medically since so many parents on this board have had doctors who have dismissed their children's symptoms as purely psychiatric and not deserving of a medical work-up.
  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 methotrexate for PANS? Thank you.
  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 autism since age 2, (he is 27 now) but became suddenty and acutely ill overnight in June 2010. His PANS care has been a bit fractured but he has received prednisone orally (he improved until it was discontinued), IVIG (no improvement), and very many PEX treatments (no significant changes). He has had an extensive work-up genetically, biochemically, and microbally with various abnormalites that are not definitive for any one condition other than cerebral folate deficiency for which he takes leucovorin. He was "PANS Likely" on the Cunningham panel. Dr. T. refers to him as "PANS plus". We are still waiting to start the rituximab therapy that his local neurologist recommended. Its been several months since it was recommended, but he is falliing through the cracks in the system. I think my fears about rituximab and not hearing of any personal experiences has allowed inertia to set in. This is really not like me. The encouraging stories here inspire me to get back in the saddle again. My son's major symptoms are a movement disorder that now also severely affects his eyes. The other common symptoms of PANS are there too. I would love to meet with Dr. Francovich since we live here in northern california, but whenever I have called Stanford for PANS help, I get turned away when I mention my son's age. I was unavoidably out of town for the northern california PANS conference and missed her and all the updates. Does anyone know how the summaries of the presentations can be accessed? Any connections with other families who have had experience with PANS would be greatly appreciated. Thank you.
  14. Thank you. We saw a lyme specialist, Dr. Sugden, at Pacific Frontier Medical, but will look into Dr. Patel too. Dr. Sugden did not call to discuss the results with me, but signed off on them and had them faxed to us at our request. We weren't asked to schedule a follow-up appt., thus my optimistic understanding was that she did not believe lyme was an issue for him. I hoped the negative lyme results would put the lyme issue to rest and allow us to spend our energies looking at other causes and treatments for his movement symptoms. Lyme symptoms overlap with so many other conditions. As I write this, it makes me realize that I should call Dr. S. and get her definitive opinion on his lyme status. My ds' neurology office called today and is going to schedule a consult with another neurologist in late February since his own neurologist is out of ideas. His current neurologist is so anti-"chronic lyme" that I can't discuss the issue with him. In the meantime, ds continues to shuffle when he walks, pauses intermittently during movements, has constant eye spasms, and tries to manage life with high anxiety and OCD-- all things that weren't an issue until he woke up one day 3 1/2 year ago with a sudden onset of these and other symptoms.
  15. The culprit may only be strep- as far as we know- since his anti-dnase levels rose with exacerbations. The positive values for HHV6, parvovirus, and mycoplasma are IgG-based suggesting past infections. His Cunningham panel was "PANS Likely" but I and his doctors are perplexed as to why he has not improved with HD IVIG and multiple PEXs and only temporarily with prednisone. He has remained chronically symptomatic the past 3 1/2 with movement symptoms that also include his eye movements (blepharospasm), gait problems, anxiety, and OCD. His local neurologist said he doesn't know what else to do to help him. What's left? Immunosuppressants/immunomodulators?
  16. My PANS son's lyme IgM test came back negative!! I am thrilled! I think. Ds had his first lyme test done in September and had 4 positive IgG bands and was negative on IgM through Quest lab's Western Blot testing. Co-infection testing was negative. The big question then was did he or did he not have a chronic lyme infection? After a two week course of augmentin (for posssible lyme) and a round of HD IVIG (for PANS) he had repeat IgM lyme testing through Igenex. The lab was drawn approx 4 weeks after the Augmentin and IVIG when it was most likely that any sequestered lyme would become activated in the serum. These results were negative. (There were IND's at 39 & 41) If this means he does not have lyme I am extremely happy because his case has been so complicated already and lyme would have only made it more so. Haven't heard from the doctor, but can I rejoice?
  17. Have you considered neurologist Dr. Michael Chez in Sacramento? He follows children under 18. He has done IVIG, PEX and immune modulators.
  18. dgfindley, Dr. Michael Chez, in Sacramento treats children under 18 with autism and PANS. He does not follow my DS because he is over 18 but having talked to him, I know Chez has experience with IVIG, PEX and immunomodulators. PM me for more information.
  19. Thank you for describing your DD's eye movement issues. Yes, DS's eye problems are involuntary and bothersome as they happen all throughout the day indoors or outdoors. He has adapted to this by keeping his eyes squinted or closed, or covered, but it doesn't stop it from happening. Its not a very socialable or safe adaptation, but there seems to be nothing else he or anyone can seem to do about it. I feel badly for him because he wants to engage with people, but it doesn't appear that way. Writing takes him three times as long because his eyes betray him and forces him to stop frequently. Riding a bike is no longer safe as he bumps into things just walking around the house. Because of his autism he can't explain subjectively what he is experiencing. He saw a neuro-ophthalmologist but he had nothing to offer except for lubricating eye drops. Just wondered what others experiences have been.
  20. I am wondering how common eye movement symptoms are in PANS, how our specialists are explaining it and how they are treating it? Mommy2MCL described eye rolling and blinking in her child. My adult PANS son with other acquired movement problems began 2 years ago having eye blinking, then eye rolling accompanied by blepharospasm and now he also has opsoclonus where his eyes move uncontrollably in all directions. Presumably it's from the basal ganglia involvement and as his brain heals I hope this problem wil disappear. No docs have made any recommendations to help him with this specific problem other than artificial tears for his accompanying dry eyes. What has been the experience of others?
  21. Thank you SF Mom. I sent you a PM. Rowing Mom, I will look at Stephen's book as I delve into the world of Lyme. Thank you. The lyme issue is just one more complication in his illness that has to be figured out and isn't straightforward. Phew! From the posts, I am wondering if we may bring any sequestered lyme out of hiding and obscure the evaluation of the effectiveness of the IVIG if we give antibiotics around the time of the IVIG? So much is unknown. You make a good point about methylation research. I have been studying my son's 23&me results and taking notes from LLM's excellent posts. No MTHFR mutation but homozygous for CBS, MTR, MAO and a few others. Much to stay on top of!!!
  22. Rowing Mom, that is the first explanation that I have received as to why he did not improve with PEX. Thank you! The collective wisdom of these boards is invaluable. Now I must search for a LLMD in northern California and get up to speed on lyme.
  23. Thank you LLM. No IgM bands. Not sure how DS tested with only one band on the Western blot almost 2 years ago and then four bands recently without any known exposure unless the first Western Blot missed them. From your experience, it sounds as though we should get the lyme well under control before we move on to the IVIG. Doesn't the treatment for lyme take an extended period of time? How long did it take to get your child's lyme under control? Hmmmm, now I am wondering if lyme infection is the reason months of PEX failed to help him. I guess I am going to have to get up to speed on lyme now. Researching the latest on Pandas/PANS, autoimmune encephalopathy, mitochondrial disorders, cerebral folate deficiency, autism, methylation problems just wasn't enough. Sounds like I need to find a good lyme doctor to work with. It appears that an interdisciplinary team of specialists ought to evaluate and treat our PANS kids. Their illness is complex and spans many disciplines. Thank you philamom. You make a good point about the negative co-infections results.
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