Char

Hi, has anyone tried the patches? Would love to hear anyone's experienc es with them. Thanks

Mayzoo, how are the patches working?

Hi, I have not been on here for a long time. My son has been doing pretty good with an gfcf , no eggs., no artificial diet and supplements. He still had minor motor tics, but not really an issues. My son has had a coughing tic now for a few weeks. I was hoping it would go away but it's not. Just wondering what others have tried to help the coughing tic-supplements? Should I try l-carntine? If so how much? My son is doing the coughing tic, every two mins. I don't know how he can go back to school like this. I am very stressed. My son has never had this before. Please Any suggestions?

Dut, I posted my sons Genetic Genie results on my other post..still waiting on my sons relative finder to come in. There are some raw data my son has, that pertain to me. Need to look further into though..

Hi all, I finally got my sons results back for 23and me. I'm pretty sure my son has PANS more than PANDAS. On his genetics he was at high risk for auto-immune diseases. PANS-PANDAS is considered a auto-immune disease. My sons genetics showed no genes for Tourettes and yes they test for that..His genes were more in auto-immune. Which I always thought because my oldest daughter has type 1 diabetes and more auto-immune runs on my side of the family. My sons genes also showed add, adhd genes high for him..I already knew that! I put his raw data in Genetic Genie. It will show mutations in genes, like Doctor AMY Yasko uses for her Autism program. Your mutations in your genetics takes out the guessing games and it will help you choose what supplements to use and not use, to support your m-system. I am going to put my sons mutations on here. I would love to compare with other parents who got 23and me done on their PANS+PANDAS children and got there gene mutations. I would like to see if there are any simarlities in mutations and see if PANS-PANDAS kids shared any simarlities. It would be interesting to know. Here are my sons mutations=+/+BHMT-08; MAO R297R +/-VDR Taq; VDR Bsm; MtHFR A1298C; MTRR A66G; MTRR R415; BHMT-02; BHMT-04; CBS C699T; SHMT1 C1420T +/+ means you got double muations(from both parents) and +/- means 0ne mutation from one parent. Amy Yasko has lots of information on it. Lots to learn... Anyways, hope to compare with some of you. Thanks..

Thanks, I am going to try to get a consult with Dr.T right away. I just hope I can get one. I just hope there is a doctor here in Canada willing to work with Dr.T.. I am so depressed right now. My oldest daughter has type 1 Diabetes and has had it for 15 years. It has been hard but going through this with my son is so much harder for me. I guess I just have to have hope and faith that things will get better. But having to deal with this and having two other children that still need my attention is hard:(

Hi All, I really need some suggestions right now. My son had strep throat confirmed by positive swab. The doctor gave him 10 days antibiotic. I asked for more but he wouldn't give it. I told him I know my son has been doing well on natural supplements but I just don't think thats enough antibiotics.My son did the Cunningham test 2 years ago. He was having mild Pandas sypmtoms at the time. He was 137 putting him in Pandas range. Anyways now 2 weeks later. He has a cold I think, now he is not doing well at all. He is snorting every 5 mins and has started a new vocal throat noise. Loud!!! He has never had this vocal before. He had the snorting with a strep a few years ago. It took him nearly a month to stop snorting. I am so very stressed right now. I know it's Pandas but no doctors here in Canada will take me serious. He can't really concentrate at all right now and he can't go back to school like this... I just don't know what to do.. I am so depressed and mentally exhausted. Does Dr.T do phone consults right away, if your childs Pandas sypmtoms are getting worse?? My child usually gets better with supplements and antibotics. Well in the past he got to 75% better.Please any suggestions?? Thanks..Char

Hi all, I have not been on here for sometime. My son who is 11 has been doing pretty well until now. I hope you remember me. My son has had Pandas for sometime now. I have been trying to control his symptoms with natural supplements. I did do antibiotics for a month and a half. I could only get that much from my sons doctor here in Canada.He seemed 75% better after that. It was a few years ago. Then I have been doing natural supplements until now. My son has strep and a positive throat swab confirmed it. He has a new neck tic with it. His poor neck is so sore. He says he is so lightheaded again. He does have a lump on side of his neck. I am so worried right now...He was doing so well. He's on amoxicillan 500 3xper day for 10 days. He's been on it for 4 days now. He still has a lump in his neck and his tics seem to be getting worse. Doing homework is very hard on him right now. He just can't seem to concentrate.I am so nervous right now. His tics have not been this bad in 5 years. And when they were this bad it only lasted for a few weeks then got better. I am scared I won't get him back to baseline again. Any thoughts?? Much appericated..

Hi everyone, I have not been on the boards for awhile. But I have been thinking about you all. I have not been on here for awhile because my son was doing okay and I decided for my own sake to enjoy it. My son still ticced during that time but it was not constant. So I was doing pretty good with it and started to enjoy life again. Even though my son ticced it was not a big stress for him or me. I felt happy to have this time and enjoy my family again. Don't get me wrong I knew this probably would not last. Well last night my son started a new vocal tic. A sucking in with his mouth and it's pretty constant. He did not go to school today because of other reasons.I am scared to send him tommrow. I have been dealing with this for along time-years. More motor than vocal. So now he has this vocal. I am scared it will not pass like some of his other tics he has had. Everytime he gets a new tic. It's like a punch in the gut for me. I have a hard time dealing with life. I have tried so many things to help my son. He's on supplements, strict diet. He was in the pandas range on Cunningham test but tried antibotics and didn't make a different. I was hoping I could find that one thing to really help my son, like others have on here but I haven't:( I guess I just needed to vent. Why does this have to be so hard??? My oldest daughter has diabetes and that is not as stressful as this. Diabetes can be controlled, way easier for me than my son having tics. I often think in my sons good ticcing days this isn't so bad then BAMMM, new tics- and my aniexty goes up. I pray everyday that my son will someday outgrow most of his tics or will find that one thing that really helps him. How are all you doing and your kids doing with tics? Somedays I wish so hard, I could get off this roller coaster. I look at my friends and their kids are healthy and no tics and I think how nice it must be, not to be on this roller coaster ride. Sorry for the not so happy post. Would love to hear from you all. Char

Trg girl, if you go to Amy yasko's discussion group, Dr. Yasko explains why. When you go to the discussion group go to search and type in strep and Aluminum and you'll find it. Members on there discuss it too. Char..

Hi,I have read on the Amy yasko forum. That high aluminum can be because of strep somewhere in the body. Maybe such as in the gut. Have you looked into Pandas before? It might be worth looking into if you have high aluminum in your body. Just a thought. Have you ever had a Igg food intolerance test done or used TS-plus? Char..

Hi, have you tried ts-plus for your son. If not it's vitamins by Bonnie grimald. The ts-plus has helped alot of children with tics. You can check it out at Bon-tech. Also there is alot of helpful threads on here. So you can go back and look through them, alot of valuable information. Char..

Hi al,My sons doctor wants to try treating my son with azit and minocycline for his high myocplasma.He's my sons general doctor. I live in canada so not much help here. I'll take what i can get. He does not have much experience treating this but willing to try. I thought maybe you moms treating for lyme and Pandas could answer some questions for me.My son is in the Pandas range on Cunningham test. But I think he is Pitands.My son has tics, Very bad brain fog and some other symptoms. Will the 2 antibiotic clear the mycoplasma? Will the minocycline make the tics worse? I would like to get the Ingex test for lyme done on my son. Can I get it done since I live in Canada and does a doctor have to order it? Any advise would be appreciated!!! Char

Thanks for the responses! Has anyone here tried doxycycline? My son is 9. I would also like to know if anyone has used it, thanks, Char

Hi All, Has anyone used minocycline for their Pandas child? The antibiotic has an anti-inflammatory in it? It supposed to cross the blood brain barrier and decrease the inflammation. Some child with autism and Fragile x syndrome have used it to, decrease inflammation in the brain. Does anyone have any thoughts on this? Thanks Char...