momofadult

My son with complicated PANS is scheduled for 5 days of HD IVIG next week through his local neurologist. His out-of-state PANS consultant has recently found 4 postive IgG lyme bands on the Western blot. He was tested 2 years ago and only had one band. (No co-infections, fortunately.) Consultant suggests we continue with the plans for IVIG and give augmentin before and a couple of weeks after IVIG. Has this plan worked for others in a similar situation? I find it interesting that so many of our kids have lyme with their PANS although I realize our forum has a selection bias. Is there research data that shows a higher incidence of lyme in PANS? Link available? Thank you in advance for considering these questions.

It is inconceivable that the FDA permits Ranbaxy to continue to sell drugs. What an indictment! Thank you for posting this stunning exposé. This forum is chock full of information. Unfortunately, I discovered that I take a Ranbaxy med. I will change, but I am concerned about all of the other tens of thousands of people who don't know about their fraudulent practices.

There are a lot of things a spinal tap can tell you depending on which tests are run on the fluid. It is done when there is a suspicion of other problems. It can diagnose or rule out conditions with similar symptoms and/or provide additional information that might be useful in treatment. For example, my son’s spinal tap showed he also had cerebral folate deficiency that they addressed with high doses of folate (leucovorin). We would have never known that he had cerebral folate deficiency (which has serious ramifications if left untreated) without CSF testing since serum folate is normal in this condition. They speculate, but do not know for sure, that perhaps the autoimmune reaction in the brain may have triggered antibodies against his brain folate receptors. NIMH did some CSF testing in their PANS study so it will be interesting to see what they found. They tested cytokines but I don’t know what else was tested.

Spoke to the lab this week and they said the current turn around time is 6-8 weeks.

I, too, find myself thankful for the things that are better but still wish for it ALL to better. Hopefully the next round of IVIG will get him closer to his baseline. The test seems to not only have been helpful with diagnosis but helpful in objectively monitoring treatment response. The test may become the kind of measure that can eventually lead to the development of treatment protocols and make insurance reimbursement easier. BTW, we found glutamate modulating supplements and meds helpful with the irritability, OCD, and anxiety symptoms. The symptoms are improved, though not gone, so we are still working on them.

Its been a year since his last PEX so I would imagine if he makes any of Cunningham's antibodies they will be there. If not, then I guess we are dealing with something else.

This is good news for us! My son didn't get in on the research tests so this will be our first opportunity to look for the Cunningham panel of anti-neuronal antibodies. He had many sessions of plasmapheresis last year without significant improvement so it will be interesting to see what his current antibody levels are. I called the lab today and they said the current turn-around time is 6-8 weeks due, in part, to the large number of tests to be run.

I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either. I am less inclined to say that the Leucovorin, in particular, is helping with the anxiety/OCD component of his symptoms. I would attribute the modest improvement in anxiety and OCD more to the klonopin that we started prior to his increased Leucovorin dose.

I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either.

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

I am interested in learning if others have a PANDAS child who has elevated serotypes of strep pneumoniae, how it affected them, and if their PANDAS treatment included eradicating s. pneumoniae? My DS never received a pneumococcal vaccine nor had a known recent case of meningitis, pneumonia, otitis media, or sinusitis yet has several remarkable s. pneumoniae serotype elevations. Any experiences with this or thoughts? Thank you.

I am glad you brought up the topic of vision oddities. I wish I could be of help. I find myself wracking my brain for explanations for some of the symptoms associated with this condition and often don't have an answer. Most of these symptoms occur for a real physiological reason. The brain and it's nervous system is amazing and amazingly complex! I, too, have observed an unusual eye phenomenon with my son that concerns me. Numerous times throughout the day, his eyes uncontrollably rotate upward for several seconds to such an extreme position that you can not see his iris. One can only see the whites of his eye. It seems painful and he quickly closes his eyelids until it passes in a few seconds. He is conscious during this time. It seems to be some sort of dystonic eye movement problem. He is not able to discuss what he is feeling because his expressive language is limited due to autism. I haven't been able to catch it on video because it happens so fast and unpredictably. Of course, predictably, it didn't happen during his neurology visit! Has anyone seen this particular eye symptom with their child?

I am glad to hear that your son is much improved. That is wonderful! You may have already done so, but given his prolonged emergence delirium, it is a good idea to make note of the particular anesthetics that were used in the event he should have to have anesthesia again. The anesthetist/anesthesiologist do have other drug options they can choose that may not cause the same reaction. Just speaking from experience and out of concern.

Hi tpotter, It looks like the authoring of our posts got mixed up! Cjenn

Hi tpotter, For sometime now,I have wanted to reply to a comment that you made but being new at figuring out the board, not being able to send a PM to you, running into a bump in the road getting my son started on his PEX treatment has caused my reply to be later than I wanted. But, here it goes..... You are probably quite right about the onset possibly happening even before the incident at 15 years of age. Pandas was not on my radar screen back then and I probably attributed behavioral changes to the ups and downs of his autism. I hope that if he has had pandas for such a long time that he will still be able to respond to the PEX. He started his PEX on Tuesday and gets it three times a week on an outpatient basis at an infusion center. They implanted a central catheter in his upper chest for the procedure expecting that it will take a fair number of exchanges. We have our eyes glued to him looking for any hint of a positive response. It's very fortunate that you were able to associate your son's depression and suicidal thoughts with pandas and then get treatment that worked. Did your son have any other symptoms with these two symptoms? Cjenn

Hi Bordercollie. I will PM you. I am thinking perhaps my reply that was sent the other day didn't go through as I intended. I am still learning the formats for posting and reading.

Thank you for your response. It appears as though the post-PEX protocol varies with the child (as it should)and the treating physician. I am hearing: PEX followed by no other treatment, PEX on an interval basis, PEX followed by prophylactic antibiotics, PEX followed by IVIG, PEX followed by immunosuppressive therapy and combinations thereof. Well we know what worked for your daughter! I am glad she is doing so well. What a joy it must be to have her back.

Thank you for the mention of anti-NMDA encephalitis. My reading of this doesn't seem to fit his profile. Good? We see the hematologist tomorrow and I am hoping he can set up the PEX for my son asap since he is continually worsening. I am glad the PEX was a big help for your daughter. I am praying for the same for him. This is an awful illness! BTW, we live in Northern California.

Melanie, I hope you will see benefits for your son very soon!

" How long has your son been sick-- it is clearly PANDAS? It is autoimmune encephalitis. The strict definition of PANDAS excludes him by age although adult variants exist informally. He had elevated titers to strep, mycoplasma and pneumococcus. He had his first sudden onset of symptoms in June 2010. He gradually improved in the typical "sawtooth" fashion, though not to baseline. In July 2011 he had another acute severe exacerbation. It responded dramatically to prednisone but he relapsed when the prednisone was tapered away. He is now worse than at initial onset and the former dose of prednisone is not having any effect. It may need to be increased while we await plasmapheresis. When I look back, I am inclined to believe a set of symptoms he had at 15 years of age was probably its first occurrence.

I am a mom of an adult son with severe PANDAS symptoms and autism. I will follow-up with an intro. My son has been referred to a hematologist for plasmapheresis having had ABX and steroids. It seems that the docs use different protocols for administering plasmapheresis or plasma exchange as a treatment for PANDAS. DCmom states "Swedo did 5 pex treatments over 10 days in the study, my girls had 3 treatments over 4 days.". What factors into the decision to do pex v.s. plasmapheresis? Is there a recommended protocol for the the number of treatments and the length of the interval between each treatment and future sessions? Dr. K's website recommends IVIG following plasmapheresis./pex. Are most kids getting this? In addition to prophylactic antibiotics, what immune modulating therapies are used to control the reproduction of autoantibodies? Sorry for so many questions; I just haven't found that much published on this. Thank you.