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  1. Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of course back on abx. I keep reading that you have to heal the gut to get better. I'm sure his gut is shot. He's been on abx for over 4 years. any thoughts? frakfrak
  2. Researching around I found this very informative. Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing! http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus
  3. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  4. The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed. I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past. I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube. Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients. Augmentin also decreases Dopamine and Glutamate. Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve. Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases. She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease. Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else. Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this. The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions. She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases. As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year. Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS. GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah! Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too! The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store. I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.
  5. My daughter is 4 years old, and all of a sudden she started saying she was still 'wet' after urinating. She would wipe over, and over, and over. At other times, she would think she had to go pee again and again, even though she had just fully relieved herself. She comes home from pre-school in changed underwear and pants because she thinks she wet herself during the day, but we don't think she actually did. She was potty trained with no problems at the age of 2. This is the first time she's had any problems like this. 2 months ago, she complained all the time about an upset stomach. She hasn't complained about those though recently. Her school has had a few outbreaks of 'strep', and she was tested back in December 2013 when we took her to the doctor for the constant upset stomach. (Dr. couldn't figure out what it was so just said to start removing certain food items, one at a time.). Our daughter has no food allergies, though her doctor said she is prone to hayfever allergies (my whole family has them!), and she has had many a runny noses, and coughing, colds, etc.... but what I thought is the norm for a pre-school child. She did have one bad ear/eye infection several years ago. She is distraught with her need to constantly wipe herself or going pee over and over and says "i'm so sad mommy, why do i have to wipe again and again???" "why do i have to pee when i just went pee?" She realizes it doesn't feel right and verablizes how sad it makes her. She doesn't do this all day, but when she DOES have to go pee, it is quite an event, with her going back to the toilet over and over and over again. I can't figure out if it is PANDAS or not. Am going to the doctor tomorrow. If it is or we can't figure it out right away, should I suggest the antibiotics so we can try to stop this in it's tracks? Should I request more than just the typical 'swab' test they have done in the past for strep? She has yet to be diagnosed with strep event hough she's been tested for it a few times. Thank you
  6. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  7. I am going to the conference this weekend at the San Francisco airport. Anyone going?
  8. This is one of the best articles I have read summing up the medical issues wreaking havoc on our children neurologically. It also goes hand in hand with the articles posted here in regards to missing gut biomes found in Autism, (ASU article) and the good strep bacteria in the throat, (NIH article) in the prevention of strep for PANDAS families. The author also talks about Gluten and Dairy as inflammatory contributors but not necessarily from an allergic response. The article gives me so much hope that we are finding answers. http://articles.mercola.com/sites/articles/archive/2014/04/17/psychoneuroimmunology-inflammation.aspx?e_cid=20140417Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140417Z1&et_cid=DM42653&et_rid=490528222
  9. Hi this is my first post here, long time lurker. My DS has had a massive increase in OCD, Tics (especially shouting out and compulsive apologizing). His brother had a sore throat fever and when we tested at the ped he was positive for strep. My DS is under Dr Latimer's care but we are not sure how to counter the effects of strep in the house. This is the worst flare I've seen since he was diagnosed 2 years ago! Really need some help if anyone has insight! Thanks!
  10. Friends and Comrades-in-Arms -- Through another support forum, I've been contacted by a family in Italy (not certain where in Italy at this point, though I have asked the question so will clarify once I get an answer) with a young adult son (age 25). There's a bit of a language barrier, but the father does well with the help of some Google translator ap. This boy-man has official diagnoses as follows: immune-mediated encephalopathy post vacinale secondary diagnosis pans pandas syndrome. Unfortunately, however, it appears he's having trouble getting effective treatment. His father tells me he has received psych meds and a couple of antibiotics trials, one of which (Augmentin) did not appear to do anything, and the second of which (minocycline) sent the boy into rages. They've tried some supplements, also, but apparently there's been no real progress. No mention of IVIG or PEX, though I've asked those specific questions and, once again, will relay the answers once I have them. I know we have some international participants here, but I don't recall anyone either in or from Italy. Anyone have ideas or caregiver recommendations that I can share with this family? If so, please feel free to post or PM me. Thanks!
  11. I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good information somewhere along this route because of some of the aricles I have found. Any information would be appreciated. Here are some articles about fish oil that I found helpful but none are about treatment for PANDAS/PANS. On the last article you will need to click on MORE under Jacob Teitelbaum. This article does give a dosage. Does anyone use this much? http://www.lef.org/magazine/mag2012/sep2012_Fish-Oils-Health-Benefits_01.htm http://www.drperlmutter.com/grain-brain-seven-super-supplements/ http://www.sharecare.com/health/immune-lymphatic-system-disorders/natural-treatments-for-autoimmune-diseases
  12. My son burst out with hives on Saturday and they are almost all over his body today: arms, back, behind, chest and legs. He's had hives a couple of times before (pre-PANDAS) for no real reason I could ever discern. We gave him a Zyrtec pill this morning and an Advil. Didn't seem to do much, as they are actually worse tonight. On Saturday, he went to a birthday party where they had junky candy.. At first I thought that was the cause--and it might well be--but now I'm not so sure. He doesn't have food allergies that I know of, but I've never tested him. Normally we don't do food coloring, except on relatively rare occasions, but he's never reacted to it or anything. Thoughts on if this could be somehow PANDAS-related? I know that hives can be a rare symptom of strep. Tomorrow is pretty much the busiest day ever at work. Gah, the WORST TIMING. Tonight we gave him a Benadryl pill. At least he'll sleep well, right?
  13. Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
  14. Ill try to be brief.... DD8 referred by regular MD to CAMHS at age 7.5 for anxiety and other behaviours- fears, auditory hallucination About 3 times in 3 years), separation anxiety - mild. emotional lability {sp?} Most of the time seemed sad- worries of the = world. Behav = need to be bearhugged, skin itchiness ( no excema), hanging upside down off the sofa / bed. climbing the kitchen cupboards looking for treats- a need to be ' up' high - hence the climbing. fear of someone outside at night, fear of the house alarm being set off by younger siblings wandering to toilet in middle of night. fear of getting locked into a toilet -never has done- fear of going anywhere in an aeroplane - last trip was 3 years ago. nightmare - sore ears. silly goofy behaviour at times. social anxiety . cannot enjoy parties where there may be dancing- self conscious. fear of Santa and def fear of the tooth fairy. Writing lists - Names, car registrations - all the names of moshi monsters Xmas 2013. I always reckoned these issues were worse when she was sick - on an antibiotic or fever med - actually i put it down to colours in the antibiotic - yellow - amocicillin usual one .She has had tonsillitis frequently as a young child - def around the time of our first family holoday - she was about 3 year old. Def worse behaviour during breaks from school - much more anxiety, so much so I could not wait for school to return - ( DD8 had antibio at 3 weeks for excema on face) Enough said. DD6 is showing similar symptoms- JAn 13 - cough sniff tic - lasted about 3 weeks - i think - I forgot about it. wasnt overly concerned. Gran was dying during this time and i think I attributed it to stress in the family. I think at some point during that year OCT ?? I saw an increase in adhd type behaviours- - aggressive to younger dd3- out of character and my immmediate reaction was - someone must be bullying you - sure enough - a little boy was doing some minor things - making faces etc. spoke to teacher - moved the little boy and i thought things resolved. ( by the way dd6 had excema - 90% clear since last NOV. However has had a chronic cough since then and always gets same between NOV and April on and off. has been on steroids once and anti bio once but didnt really help - Ps DD6 had antibiotic at2 weeks for cough. Roll on Feb 12th - I was off with tonsillitis - DD6 began tic around week later? sniff cough comes back - a full year later - with hyper behaviour- and a constant looking for sweet stuff, biscuits, anything with sugar- Im thinking she has diabetes ?? While watching her one day recently I noticed - lots of twirling, shoulder shrugging, fiddling with her hair - knotting it ( fear of getting nits- big campaign recently in school re nits) writing a list of what way she would tie up her hair on a daily basis- constant need to hug me when im leaving or she's leaving. hoarding - lots of stuff under her pillow - which she refuses to remove - she lost a tooth on dec 24th 2013 and another beginning FEB- She has had about a full month of having trouble passing faeces -constipated ON DEC 31st spent one hour in the toilet , crying and trying to go - eventually did - but the fear has not gone - and had many accidents during JAnuary as a result of leaving it too late. Now she goes but requires me to be present in case she has trouble - dont know about her having infections - or strep - was called to school in Dec as she had a high temp but nothing materialised. DD3 had tonsillitis of very bad throat on DEc 7th - My DH had history of tonsillitis as a child - I never got tonsillitis until I was 21 - my twin did tho- But I was always a worrier - unlike my sister - so I UP UNTIL NOW JUST THOUGHT I AM REARING DIFFICULT ANXIOUS KIDS _ am I though? I am a teacher and pretty au fait with kids behaviours but feel I am failing with my own - sometimes I dread the thought of going home - what behaviours dd8 would be displaying- on sat night she said - I wish i wasnt in this world - now she did not really understand the concept of what she said - but it was a reaction she had to a hard day she had had at a a friends party - she cannot deal with rejection - even minor falling out with friends - takes it so much to heart - Im never going to speak to her again - shes so mean". Please advise - should I be looking for help ? I know others have more difficult cases- I feel I am just about managing these behaviours - but should I be - just about managing - My close family reckon - they are attention seeking kids- they have me wrapped around their little fingers- and manipulate situations to get what they want. There is probably an element of truth there.. Any advice appreciated - PS I am in UK/ IRELAND
  15. My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?
  16. So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GABA. I'm interested to hear if anyone has tried these, with success or not. Thanks!
  17. I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
  18. Searching through the archives of the forum, it seems that many, many of you have reported that Vitamin D causes issues/backsliding for your kids. Tell me about your experiences: Did anyone stick with it and eventually see a good result? Did ramping up the dosage slowly help? Did anyone have a good experience from the get-go? Was there a combination of vitamins that worked to mellow the crazy? Did you find another way to get your child's levels up? Backstory: My kid came down with PANDAS in October of 2013 and is mostly recovering. (I wrote about his story a bit here.) We recently added Vayarin to his regimen of fish oil, 5HTP, vitamin c and probiotics. Adding Vayarin seemed to make a HUGE difference. The past two weeks or so have been really great--normal, even. His doctor recently tested his vitamin D levels and said they were low. (28 on a scale of 33-100, but many folks will say you are really shooting for around 50.) He recommended we supplement with 1,000 IU a day but...oh my. This has certainly put an end to the recent good run we were having. Thoughts how on I can up his Vitamin D levels without ruining our family's quality of life?
  19. This is a repost from Sheila Rogers under the Autism Forum. I think the info discussed is vital to those with PANDAS too. http://latitudes.org/forums/index.php?showtopic=20967&p=161966
  20. Hi everyone. I was wondering if there was a list of supplements or naturopathic treatments that people have used, whether with success or without. I've seen many discussions and signature lines with all the stuff people use and it's hard to keep track of them all. A comprehensive listing would be helpful. For example, what is NAC and how it is helpful? (I'm going to Google that now). I just put my DS9 (at 60lbs) on magnesium glycinate supplements (120mg), omega 3's (672 mg EPA to 168 mg DHA) and he's on probiotics. That's about it. Also thinking about going gluten free. Thanks for reading!
  21. Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel
  22. I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you? ----------- Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff. He has had one flare following a bout of gastroenteritis and had a "baby flare" last week when his brother was coming down with walking pneumonia (myco p). The first flare was characterized by raging/anorexia/anxiety--and he got suspended from school for an altercation. The baby flare was "just" lots of rages aimed at me. But most days, he does well. His behavior could be considered completely normal--for a different child. He still has a million friends and is his charming self with them. He is generally able to keep his act together at school. It's just that ... he is not exactly the same as he was before. He has outbursts at the slightest provocation several times a week. He is also super-forgetful and has a hard time concentrating on anything remotely challenging. Also: He seems to have plateaued. If he's getting better, it is gradual. Right now he's not on antibiotics but is taking some fancy Omega 3's, Vitamin C and 5-HTP. I give him Motrin sometimes too. I had titers run two weeks ago but I have not been able to get my doctor's nurse to call me back, which is making me pull my hair out in frustration.
  23. Hi I am new to this site but have been reading some of the interesting posts I have a son that is 3 that is on Cefdinir for suspected PANDAS He was on a 10 day round of Fluconizole followed by Nystatin He has no sugar in his diet, No Gluten, No Casien and very little carbohydrates,,, basically the specific Carbohydrate diet How long would it take for us to know if this is the path for us, How long would it take to see changes with Cefdinir, Day? Weeks? Does anyone on here remember the time frame it took to see that the antibiotic was working? We are working with a DAN? Immunology Dr. that specializes in Autism & PANS & PANDAS He is a well respected Doctor who is in California I am just watch my son all the time since he started taking it, looking for changes. Your thoughts would be appreciated.
  24. DS10 has now been officially diagnosed with PANDAS/PANS. I posted a bit of his backstory here. He is generally doing well and recovering, but I sense that he is about to have a flare. (I hope I'm wrong, of course.) What do you do beyond ABX when you sense a flare coming on? I just gave him some ibuprofen, and I give him Omega-3s and Vitamin C daily....but is there anything else I can do? Already planning on loving on him as much as possible and hoping it passes quickly.
  25. I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel
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