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Found 9 results

  1. Does anyone have advice for possible mast cell issues. Pandas flares always seem worse in the spring and kids has bad pollen allergies. Oddly the natural antihistamines like quercitin and resveratrol seem to cause worse flares. Symptoms are: itching, anxiety. brain fog, unbalanced feeling (like walking on a boat), anxiety, OCD, ADHD-with the unbalanced feeling being the worst. Any advice on what antihistamines might be useful? Or would something else help? I have heard that this could be a methylation issues as well.
  2. Hi everyone and anyone My 5 year old son has been experiencing both verbal and motor tics on and off for 1.5 years. Each time, just as they peaked, they quickly went away. However a new "episode" started 1 month ago and the tics have been more frequent and more aggressive. We have seen neurologists and had basic allergies tested (he has anaphylactic allergies to ALL nuts and seeds). We are desperate to find an environmental physician or any expert who can help us find possible causes and triggers, anyone more learned than me. I have spent days and weeks reading everything i can find on the topic ...so i know the tests that i think need to be done but i also know this is'nt my specialty... my son deserves someone who has experience with this.. not just me piecing together various bits of data .He is a very sensitive and gentle boy who is getting progressively more anxious as he struggles to deal with his body jerking hundreds of times per day. would anyone have a recommendation for a doctor or functional clinic in London, UK who can help us? a million thank yous in advance
  3. Cytokines and inflammation are discussed! "There are several ways in which a severe reaction to airborne allergens might tip the scales for someone at risk for suicide, but here’s one. When a speck of pollen from the air comes into contact with immune cells in the nose, the cells release cytokines—molecules that cells use to communicate messages to one another. Postolache and others believe cytokines might drift through the nose to enter the brain. There, the cytokines might disrupt the brain’s delicate chemical soup, shifting the balance from feel-good chemicals to toxic ones that may trigger anxiety and impulsive behavior. Besides the nose, cytokines might also influence the brain by traveling through nerves, or by prompting immune cells to mistakenly attack healthy brain cells. These cytokines, then, may play a role in the angst and impulsiveness that drives people to take their lives. Indeed, Postolache and others found elevated cytokine levels in the brains of suicide victims." https://www.theatlantic.com/health/archive/2017/04/the-troubling-link-between-allergies-and-suicide/523608/?utm_source=fark&utm_medium=website&utm_content=link&ICID=ref_fark
  4. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  5. I just wanted to share what we've discovered with our 8yr old son. My son has had these type symptom during allergy season but not as intense as this year. WELL this year we started giving him Allergy Immunotherapy drops and his symptoms increased majorly. I've referred to it as OCD but honestly its a mixed bag of OCD, vocal tics, stimming/sensory stimulation. I connected the dots and had his histamine tested. Mind you, he had barely any noticeable symptoms. Occasional sneezing or cough. His histamine levels were 4x the high normal. Histamine is actually a neurotransmitter and can cause neurological symptoms. Do some research on Histadelia kids. Describes my son to a T. Work with a Functional MD or ND who understands the methylation cycle and other contributing SNPs. I would suggest getting a Blood Histamine test. We just had one for our son by Dunwoody labs. It included histamine, DAO and Zonulin (zonulin was optimal so not a Leaky Gut problem). We ran genes through 23andme a couple years ago which is helpful information (still requires research, trial and error). Dr. Amy Yasko (google her name) has an online forum and free online books which are very helpful regarding gene errors and the methylation cycle. If our histamines are too high there are some reasons behind that which can be supported by understanding your methylation cycle. You can read up on Histamines and how they effect us. Some people have issues because of low histamines and others because too high. Here are two good links. http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm http://www.drkaslow.com/html/histadelia.html
  6. I had to switch pediatricians because my last one was in complete denial that my son's Tourette's could have been started by an ear infection and she started treating me like I was nuts. In the meantime, we've determined he doesn't have PANDAS, but a PANDAS expert we visited said my son looked allergic and to get allergy testing done. As I wrote in a previous post from January, he's allergic to our dog (and every outdoor allergen, basically) but has no symptoms of allergies. The only symptoms are in the springtime. Does anyone else's kids have no allergic symptoms who tic and have been shown to have allergies?? Is it typical? Our new pediatrician that we saw tonight said that he definitely doesn't' have PANDAS, which we knew. And that tics are not caused or triggered by allergies. I mentioned this web site and Sheila's book that has hundreds of stories to the contrary, but he said that there could be several thousand who don't have these reported experiences. Anyway, I'm confused more than ever. However, the Dr agrees with me that tic medication isn't worth it unless my son is taking a hit on his self-esteem, which thankfully he has not so far--he's only 8 years old. The side effects can be bad. The Dr. is a smart man who does a lot of reading and he's more curious than our last pediatrician, so I don't completely distrust him. I just am even more confused. I guess I'm just curious: Can someone answer why Tourette's improves for about 50 percent of the kids (and not for the other half) if allergies or environmental causes (things that can be controlled) have something to do with it? In other words: Why does Tourette's spontaneously improve for so many if there are environmental causes behind them? Thanks for your help! Feeling lost and losing hope...
  7. First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  8. Hi, My son has only recently been diagnosed with PANDAS/PANS, and I am still learning. He has been symptom free since September, following a bad flare that lasted from May until the end of August. The doctor we have been seeing did some allergy testing, as he mentioned that the inflammation from allergies can work in conjunction with infections to trigger a flare, so he wanted to minimize the effects from allergies. My son tested positive for some environmental allergies (mold, juniper, hay...2 others I'm blanking on) and peanuts on the skin test, but not the blood. It was suggested we take a half dose of Xyzal daily (an allergy med) and remove all peanuts and tree nuts from his diet. My son had no visible allergy signs at the time (his present as eczema and itchy eyes), so when the pharmacy could not find the med to order, and we had to switch to a new pharmacy who told us it would be a week delay, I wasn't concerned. Until Sunday....something we were around (still haven't determined what!) caused a huge eczema flare. And, my son's eyes are so puffy with dark circles underneath, I asked him if he fell at recess! Turns out they are so itchy he can't stop rubbing them. That long background brings me to...he started a minor flare of his PANDAS symptoms today as well Familiar symptoms (stuttering, fears--he cried about losing a penny, having to get his wisdom teeth out (he is 6), that he couldn't find a specific stick on the playground, and baby talk. Much less intense than his last major flare, but going from nothing yesterday, it is quite noticeable today! My question: since this flare is clearly brought on by allergies and not an infection, I don't need to start him on antibiotics, right? Our doctor has a prescription of Azithromycin for us on standby that he said to fill if we started to see signs of a flare (to take once a week), but I wouldn't fill that for a flare like this, would I? I did give him a dose of Claritin tonight, since we still don't have the Xyzal. I am hopeful the Claritin will work quickly and we can avoid a full flare...I am just unexperienced and was looking for advice! Thank you!
  9. Qannie47 posted an interesting link on histamine levels and I'm thinking about asking our LLMD to check ds. There were just too many similarities in the description of high histamine kids/people to ignore. Has anyone else looked into this?
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