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Posts posted by Char

  1. 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?

  2. 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..:)

  3. 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:(

  4. 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

  5. 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..

  6. 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

  7. 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

  8. 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...

  9. Lenny,

    Thanks for posting what has helped your son. I am glad to hear your good news!! How long on the gluten/wheat free diet, did you notice it help your sons tics? I know first hand how searching for answers has taken all my time up.I have also had many tearful days also. I am still searching for that one right thing for my son. So your post really gives me HOPE, for a better days. Thanks again:) Char..

  10. before this current 1 1/2 year old episode...ds would improve 24 hours.almost done in 2 weeks and healed by 4 weeks...

    if your child has had it long or as severe as my child..it will take a vveerrryyy long time..and possibly rotating and combining abx...

    for us i would not see any improve with iburpofen as his system was in tooo much of overdrive and the same for abx....since we did the taper..things are much better and i can see the ibuprofren effects...and you may never know cause of infection if its been a while and it cleared...it becomes auto immune, where the system just takes over itself and needs a brake system...If you can find cause..then maybe the abx that is designed for that illness is all you need....


    watch the yeast, steroids will send it over the top, abx, clostrida....PROBIOTICS and even with that the Right Types are key....

    ds has been on abx for 7 years off and on w/o probiotics and the more i heal his gut the better he his!!!!


    any suggestions on right types of probiotics? My dd drinks good belly juice.


    HLC mindlix is a good probiotic. It survives the stomach acid and is absorbed better.It also helps heal the gut.Char...

  11. Hi Everyone, It's been awhile since I've posted. I needed to take a break for my families sake and my own. A few months ago, I had a Comprehensive DNA stool analysis done on my son through Amy yasko. It shows he has strep and HIGH MYCOPlasma in his gut. I couldn't believe it. I know that my sons Cam kinase showed him in the Pandas range but I wanted to know if he had strep hiding somewhere else in his body. The stool test is very accurate. I have been reading alot on the Amy yasko discussion group and the members say the test is very accurate. Alot of the members have had strep and mycoplasma in their child's gut and it was confirmed by the DNA stool test. Amy Yasko has supplements that are supposed to address strep and mycoplasma in the gut. They are called Immunfactor 5 for strep and Immunfactor 9 for mycoplasma. Amy Yasko commented on my sons tests results that my sons mycoplasma was VERY HIGH and we needed to get it down, by adding Immunfactor 9. I was concerned that the Immunfactor 9 had antibodies in it. But Amy yasko said it does not. The Immunfactor 9 is very expensive and hard to get in Canada, so I had to wait a bit to order it and I needed some take to think about it. I read and read alot more on the Amy yasko discussion group and have found that alot of members have stool tested their child and found strep or mycoplasma in their child's gut and have used the Immunfactors with some other supplements. Then a few months later, retested their child and their child's numbers on the stool test went down. Their child's symptoms were better too. Has anyone tried these Immunfactors before or does anyone have any comments for me. Thanks Char...

  12. Hi Lori,

    I am from Canada as well. I don't have alot of time to post my thoughts but, I do have to say there is not alot of help for Pandas in Canada, that I am aware of. But I am still looking. Please PM me with any questions and we'll chat. I wish there was more help in Canada!!!!! Hope to chat with you soon, Char...

  13. Caryn,

    Hi, very interesting about Doug Kaufmann and the flawed IGG testing. You said your son reacted to the fungal foods on the IGG testing. My son reacted to Milk and really high with eggs. Could you tell me possibly what mycotoxins those foods are? Could you please explain a little more about this? Thanks again for your helpful advise, Char..

  14. Hi All,

    I hope everyone had a good Christmas. I have not posted lately because I have had family staying at my house for Christmas. I know from testing that my son is in the range for Pandas. He has taken Azith for 6 weeks and no change. So I started him on PleoSan not and Pleosan Remedy for strep. I found his immune system is stronger since on them and his arm stretching tic is better.


    I have been talking to a member on this forum momfo4boys. She has had great luck with her son seeing a Chiropractor Neurology. Her sons tics are better and she is happy. I tried to find a Chiropractor Ner. near where I live but, no luck. Momof4boys suggested reading Disconnected Kids. So I did. The author is a Neurology Chiropractor. It is very interesting and he suggests you do exercises to help either a right or left brain deficiency. Momof4boys has more in detail in her posts. I have started the exercises from the book, with my son.

    I think it is helping a bit with tics. My son has been doing it for 3 weeks. But I have read it takes 3 months to see more benefits from the exercises. So I am hopeful and will continue with the exercises.


    I have been feeling like I am still missing something for my son. So I went and looked back at his OAT urine test. It said on there that my son had high Sulfur in his urine. My sons ND said it was probably from him taking too much sulfur in his vitamins.

    But that has never felt right to me. So I have been researching too much sulfur in children urine. Well I kept reading that children with autism, have too much sulfur in there urine and low plasma sulfur in their blood. My son does not have autism but it got me thinking????


    So I researched more. I found that children who have this problem almost always, need more sulfur in their bodies.

    If there is not enough sulfur in the body then it can cause gut problems too.

    Also it causes other problems too. So I read that children with this problem should do Epsom baths every other day and take MSM supplement.

    My son has been taking Epsom Salts bath every other day for a week now. His tics have decreased even more, I can't believe it!!! I have given my son Epsom baths before but, not every other day.


    Is MSM supplement safe for kids to take with tics??? Does anyone know?? Or has anyone taken it before??


    I have read from some parents that have kids with autism, that MSM has helped their child and there glad they tried it.

    I have read that Tylenol can deplete sulfur in children bodies.

    My son, when he was a baby took alot of Tylenol because he had fevers alot. I wish I knew then, what I know now about Tylenol today, angry:

    There is alot you can read on about Sulfur and the body and the pathways.

    I think my son has blocked sulfur pathways from testing and symptoms.


    Does anyone have any thoughts on MSM supplements or about what I have posted. Also is it safe too take MSM if you have an egg intolerance?

    Because my son does and eggs are high in sulfur...

    Thanks Char...

  15. I drink little to no milk... sometimes i sneak in a bowl of weaties every so often. but i always regret it by getting paranoid about homework and i get mildly depressed. (about 6 of sugar in wheaties and 15 in milk)


    and other than that I do avoid all sugars. I do not eat any fruit, lots of different condiments, especially sugar alcohol which is in a lot of different types of sugar free snacks.


    I do eat a lot of artificial sweetners however. they dont seem to affect me.


    What do you eat in a typical day? Do you find that eating no sugar makes you very thin? Could you give us some food examples of what you eat? Thanks...

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