

Diana
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Need help understanding IgG blood test results...
Diana replied to momtocole1's topic in PANS / PANDAS (Lyme included)
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I have talked to Beth Latimer, Swedo and 2 brain surgeons and the answer is this: if the child is young (not in puberty)...they will LIKELY repair if given treatment within a reasonable period of time. With basal ganglia NO ONE has studied the length of repair time but where there is no white or grey matter inflammation about one year should do it. My son at age 7, did have brain inflammation AROUND the basal ganglia (Virchow Robin Spaces) -- and it absolutely took one year to heal. I see bright eyes now and zero math, writing issues. But it was one HECK of a long year. Actually I'd say it took 10 months for him to heal. No one understands the basal ganglia clearly the brain docs have told me. No one. One doc last week told me: "The basal ganglia are sort of like a rubber band ball. As it heals one nerve touches the other. And we don't know what will happen. We cannot see it. We cannot cut the nerve ball open and see. It is the nucleous of the brain. The control center." But there are so MANY happy cases of PANDAS kids reparing well and becoming normal adults ----- I think the odds are great and the docs seem to think so too. FYI - there are over 100 cases of pandas now thru this forum and the pandasnetwork.org website. Sooooooooo - it is probably time to try to start tracking each other more logically. I'm trying to work on that with some other pandas moms. By next year, we should have better answers.
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Colleen, This is your old friend here! Are these all your kids? OK - so Madeleine has told me this is a "Screening test for pandas" - CamKinase anything over 100% -- so 134% etc etc --- there is an activation of some sort occuring surrounding strep reaction (this is Madeliene's current hypothesis). Look everyone --- this is not a PERFECT test --- she is understanding things thru all of us. Where there is activation of CamkInase and ANY of the anti-neuronal antibodies -- dopamine, lysoglangliside, tubulin -- anything about the "normal mean" --- there is some sort of activation occurring. My son post-ivig still has a CamKinase of 165% but he has NO SYMPTOMS (except today one mild neck tic for 40 seconds), high dopamine 8000. So what does that mean? We're not sure yet. The CLINICAL picture Madeleine just emailed me, is the KEY. Each person's body is different. Some of the kids that have A LOT OF OCD but have struggled with pandas for 2 years - have CamKinase of 135% above normal. So - does that mean their body has adapted? Does my son's high level of 165% mean he is fighting it?? Madeleine is not sure yet. But the bottom line is when this element is present and the antineuronal antibodies are activated--- there is a clear autoimmune activiation that we as parents have to figure out what we are going to do about it. Antibiotics, ivig, plasma ex..... For my son....there was clearly no choice because he was completely and utterly insane. Maybe other kids....it will fade in time.
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Pat - Things post-ivig have been very good for us as well. We know that pandas is a brain inflammation issue. Neurologists/brain surgeons have told me expect at least one year post recovery. I think kefir is great to do. But it no cure. Dr. Cunningham's tests show that there is an encephalytic reaction due to strep. And to smash it down with antibiotics and ivig are important to do. My son had to do a smaller dose of IVIG in May (just 3 months ago) - to iron at the residual issues. WHY? because I did a thorough immuno work up and saw low and behold!! he had a IGG subclass deficiency (low subclass 1 and 3). It makes these kids have a harder to time to repair post-ivig. NOT ALL PANDAS KIDS HAVE A SUB-CLASS DEFICIENCY - but if they do - it is entirely reasonable to do another ivig. My biggest frustration and hope is that kids with PANDAS-like symptoms get decent immunological workups. That other infections, like herpes, re-curring ear infections, URI's -- are paid attention to by doctors. Pat, your daughter and my son, did not have decent blood panels done before IVIG so it is hard to tell where the "cure" is coming from. I for one will keep my son on proph abx just as in the Rheumatic Fever kids. Because he absolutely had a reaction from strep that knocked him to his knees. I don't think that was ever clear in your daughter's case with regards to strep. But for kids like mine -- I will not subject him to that illness again. Clearly his autoimmune system is rebounding now - he is robust and healthy and happy and I don't see pandas either. These kids need a helping hand to get them "out of the wood" and scientists are working very hard to prove this. Thank you Buster and EAMom as always for the studies you find on pandas. Diana
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For those who have tried prednisone---
Diana replied to bronxmom2's topic in PANS / PANDAS (Lyme included)
There are so many new members on this forum. Kayanne - I don't think I've ever spoken with you? Myself and other parents on this forum along with advice from many doctors - Stanford, Yale, Georgetown, etc. - have created a website www.pandasnetwork.org. We are trying to help the parents get proper medical care and understanding of PANDAS. Regarding the prednisone - it is really important to show that the brain inflammation needs to come down. The treatment for pandas is like any form of encephalytic reaction: antibiotics or antivirals - prednisone - ivig or plasma exchange. Since your daughter is early on - I hope you will aggressively treat this with your doctor.......I'm happy you have. If you ever need any ideas - don't hesitate to email me. I see you are in Pennsylvania - there are many families out your way and good doctors. diana -
For those who have tried prednisone---
Diana replied to bronxmom2's topic in PANS / PANDAS (Lyme included)
Prednisone should really help your son to calm down. But sometimes, it has the reverse affect. The point is mostly to prove the brain inflammation. Dr. Latimer is very aggressive with its use to try to induce the body to stop the inflammatory process. Yes, it should work. There are a couple mom's who recently got the prednisone treatment with Latimer - may ultimately do IVIG or Plasm - exc -but it has bought them some time. -
antibiotic advice, scared to change
Diana replied to lismom's topic in PANS / PANDAS (Lyme included)
On Dr. K's 500 dose 2x per week - be cautiously optimistic with his idea. I just patently disagree with him on that until the child is really stabilized. And now - post-ivig, it has been 9 mos. and he is just stabilized to 100%. I will keep him on the daily dose of Azithro thru this Fall and Winter because he is SO incredibily sensitive to strep microbially - I just don't trust that the IVIG will keep him steady. The immune modulation of Azithro helps him. BUT - you know me guys - hey, some kids aren't as sensitive as Garrett has been. I know, it is a gamble with this illness. I wish there was a clear cut answer. -
9 year old son with PANDAS on Cefdinir
Diana replied to Alex's topic in PANS / PANDAS (Lyme included)
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Yes, ARMom - this sounds like a clear case of PANDAS. I have posted with Sandree here as well. My name is Diana Pohlman, I am working with YALE and Susan Swedo to create a new study on IVIG and PANDAS. Dr. Miro Kovacevic in Chicago - has been following her protocal for PANDAS over the past decade. It is largely working. Yes, your son when exposed to strep will have symptom exacerbation. Penicillin does not always clear the strep so your husband should be rechecked. Many of us have found Azithroymcin to be the best help with PANDAS - but sometimes - especially with East Coast strains of strep? - the penicillin is fine. I would very much like to help you with phone numbers the doctors have given me for you to contact them if you need help in influencing/explaining this "new illness" to your doctors. Dr. Leckman is a highly acclaimed doctor and has world-wide respect - Dir. of Child Psych at Yale. He will call your doctor or he/she can call him. There is too much to explain only on this forum. I am TRYING to finish up a website with all the parents and docs info - the best I can as I'm not a doc but am a holder of everyone's info! - but my son had an unhappy relapse first of March post-ivig 6 months. He is unusual in his extreme sensitivity to strep. Most kids post-ivig seem to fair better than he. Anyways, the rages, the tics, the mean comments, etc - this is all brain inflammation. You MUST get your child on antibiotics asap and then follow perhaps with prednisone to quell the inflammation. It is the same for any brain inflammation (like the more extreme encephalytis) - you will get your child back. And then see how he improves, perhaps eventually considering IVIG for him. It is very individual for each child. There is a whole network of parents here to help you - not just me - I am sorry I am slow getting up the website. Yale will be hiring me in the Summer to track everyone a bit better and help a bit better - but this is the best we have for now. Best regards, Do email me back thru the forum - I don't often log onto the latitudes Q&A - but check my email daily. Thanks - and say a prayer for me too.........this is one ###### of an illness. diana
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Hi Sandy, My name is Diana Pohlman. I have talked with lots of parents on this forum. My son developed PANDAS about 2 years ago. 6 months ago we did a successful IVIG with Dr. Miro Kovacevic webpediatrics.com. I mention this because I became acquainted with Yale's, Jim Leckman, Ph.D. - Dir. Child Psych and Research. He is friends with Susan Swedo. To make a long story short - many of the parents and I created a "booklet" of our stories and gave it to Leckman and Swedo. They are as we speak trying to get million dollar funding for PANDAS and IVIG because of Dr. Kovacevic's courageous work. He continued on with the protocol Swedo had designed and improved it. He became involved because Swedo was no longer able to do so. There are some political reasons for the "stopping" of her studies - primarily - the American Medical Associ. is loathe to recommend or allow a doctor recommend antiobiotics or blood products unless there are damned good clinical trials. SWEDO and LECKMAN are very much aware of the NIMH's lack of "reality" when dealing with PANDAS but legally their hands are tied. They have asked myself and other parents here to support each other. I am tracking the names of parents who wanted to be tracked who have valid diagnoses of PANDAS. If you would like me to include you in the roster - please let me know. Email me thru this site. ALSO, Leckman and Kovacevic will take your phone calls for any suggestions you may need or help with your doctors until the study at YALE is ready to go. The study is also under the ospices of the NIH. We are trying - it is just taking so darned long - and we all need our kids well - yesterday! Let me know if you would like any help - and I'll try to get it for you. There are some parents in PA (including DCMom) who have had some luck with local docs. They are good too! Take care, diana
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Dear folks - There are some new strains of strep, according to leading streptococcologists (spelling??) Debra Bessin and Ed Kaplan - that can only be stopped by Keflex or Azithromycin. The new strains (M/18 and other?) have grown an awful "mucloid sheild" around the bacterial structure that are impenetrable by pencillin. All that Colleen says re: T&A is just right on. I asked docs about the whole re-colonizing thing with strep and the belief is PANDAS kids are only having an autoimmune reaction. That what they have done in petri dishes indicates that strep with abx will be killed off. I asked - how do you know for sure it is not intracellular. They said, "well, we don't know for sure. The only way to know strep is gone or to get the strain from the body is via tissue sample or prompt swab." So, it is possible, that strep can be hiding in the crypts (like Colleen said) of the T&A and even after then - even in the sinus cavity somewhere too. But getting rid of the juicy T&A especially if periodically swollen - seems to be agreed by the many docs I've talked to - a wise choice. AGAIN, only if the T&A have given the child some trouble. Knowing what I know now about PANDAS now - I am so glad I had my son's T&A removed. It was easy for me to decide because they were swollen badly. The Stanford ENT that removed them, Brad Hindricks - said an ENT friend of his (a doctor) - his child developed PANDAS and they promptly did the T&A. It helped control the repeated strep assaults. This illness can truly hurt a child's brain - a parent's wisdom is so crucial here. Docs know only so much - you know every iota of your child's disposition. Garrett, my son, did IVIG in September - he is nearly free of every symptom now - we believe full "conversion" will occur very soon. There is no more anger, hyperactivity, learning issues, etc. All gone. Now only anxiety about getting to school - and that is diminishing with increased abx this week. Take care, diana
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First PANDAS episode, need advice (and moral support)
Diana replied to dcmom's topic in PANS / PANDAS (Lyme included)
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What EAMom says is the case, DM...I am not clear on the antibiotic you are on. Some folks with very aggressive PANDAS onset similar to your son's take, for example, 500mg (2 pills) Amoxicillin with success, doing this for 5 to 6 weeks. Others 500mg (2 pills) Azithro or Cephalexin. The key is to find a doctor who will work with you and talk with you and RESEARCH things for and with you. Regarding Tenex - the PANDAS children have had limited success with that, but some help for your child is better than nothing. VERY IMPORTANT: if you could ask your doctor for a cortosteriod (prednisone) for about one week - it will lessen inflammation that is disturbing your child's brain. Important: He will get better if this is truly pandas. There should be tell-tale emotional issues to he is having-- fears? anxieties?--it sounds like you see these. Stay on this forum - many people will help you. I will also try to reach you via email to be of further assistance. Best wishes. diana
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sudden nightmare with Gaby yesterday
Diana replied to pmoreno's topic in PANS / PANDAS (Lyme included)
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Important Hopeful note: The boy I mentioned above now at age 14/15 yrs - very little PANDAS symptoms. Actually, mother thinks it is gone. With girls I have heard several times - at time of menses - the symptoms stop.
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Dear Indigo, The antibiotics don't work I have found personally with my son - past a certain point. I don't know the background of how long your dd has had PANDAS but the body will sometimes build up resistance after a certain amount of months or years on abx. I live in Menlo Park, CA where there is a lot of PANDAS. Stanford U. in our town is slowly trying to understand why. Anyways, there is one boy here who for the past 9 years (from age 6 to now 15) has lived with PANDAS - using antibiotics whenever he has an exacerbation. It is just bad sometimes. And good other times. His mother, my neighbor, said it takes about 5 to 6 weeks for his episodes to pass. PREDNISONE: One case on East Coast - child had PANDAS for a couple of years - YALE did the predisonse but it took a few weeks for the brain inflammation to go down and the symptoms finally subsided dramatically. Having said THAT - her son's symptoms, OCD, hyperactivity, aggression - were not as acute as my son's were at certain points. So, PANDAS for some is more severe than for others. Indigo - I have been meaning to contact you. I am working with YALE to try to get a grip on this. We have about 20+ families reporting their stories to Yale. They are also in close contact with Dr. Kovacevic. ALSO, have you ever done an MRI or PET scan? Sometimes they are inconclusive but sometimes not. If you have not done one - it may be time. I can help you get connected with some resources that will help you in these or other efforts. PLEASE EMAIL to MY HOME EMAIL. I don't log onto ACN often: pohlmandiana@yahoo.com