valsmom

Biaxin which is supposed to br the best for myco did nothing to both of my kids . We check igm every month to make sure that antibiotics are working. Kids igm raised after 2 months of biaxin.

As far as Strep goes , my both kids had negative bloodwork but positive swabs with no symptoms of strep. There are some kids like this . So maybe your son was positive for strep at some point , you could have missed it . But sounds like Pans to me. Did you watch any youtube videos of Dr Triffileti ? He talks about this titters , and how some kids don't show positive strep on bloodwork.

Thank you for your reply, what brand are you using? I was thinking of Host Defence .

I am looking into Cordyceps for my two kids with myco/pandas. Read Buhner's book . I see your post of 2013 . Did you end up trying it ? Any results? Thank you.

Did the dr check for any other infections beside strep . You can have mycoplasma and have no symptoms of it which is one if the major triggers . Also some viruses.

Broo100, i just sent you PM

It is one of the PANDAS/PANS charachteristics .

You mentioned that Mycoplasma was high. It can take s long time on antibiotics to clear that as it is a big PANS trigger. We were for a 30 days on very strong antibiotics Biaxin and my Dd's igm numbers went down only 40 points. What was your son's myco igm?

Yes, IGG were >5 . We are on Azythromycin and using essential oils for myco that are supposed to dissolve biofilm. Beerae22, were you Daughter's IGM going down?

Hi aba., same here ...our symptoms are mostly rages and odd like behavior. We do all kinds of stuff with oils, we take it as a pill , we diffuse it and also do rain drop massage. The oils suppose to cross bbb and also are great at dissolving biofilm .

Could someone explain , please. My DD's myco IGM were 3280 on Feb 9th. She had 3 rounds of Azythromicin and now we rechecked it on March 12 . Her IGM came back 2380. So, I am not sure if she still needs antibiotics . How should I read her numbers? Did we beat the infection , and her numbers will be going down slowly . Or she still have myco pneumonae? How long does it take for IGM to go back to normal which is less then 770. I am all confused. Any advice will be greatly appreciated, Thank you.

Malealuca oil ( tea tree oil) , peppermint oil , oregano are very beneficial for mycoplasma .

Hi, your dd's titers are pretty high . There is a facebook pandas page and there are tons of info there as well. What are her symptoms?

SSFKAT, how high is your DD's titers? My dd just came back what I think is very high ( bot not sure what are the relationship between the numbers and the length or severity of infection). my dd's IGG ARE 3297 AND IGM is <5 What are you treating it with?

Hi Stacestar! I mostly read the posts here but wanted to comment on this one. My dd6 also when has a bad cold with some fever would stop ticcing . I would give her ibuprofin but when her fever goes away in a few days she would go back to have tics even if i give her ibuprofin . I did some research and i might be wrong but from what i understand running a fever is a healthy immune response that is why it is not attacking the brain . I noticed this with my daughter in about 4-5 colds but only when she used to run fever . Now if she is sick she doesn't run fever anymore at all , which indicates that her immune system needs to be fixed ....

Thank you, Rissakae for your respond. I am not sure about dairy for us. My DD started having tics at 3 y.o. or so and we had two summers from June till late October pretty much tic free. Then when November comes her tics increase ( humming is the main one for now). Until the end of May we will have her humming and some other tics on and off . She is 5 now and we had same 2 years of pattern like this. During summer she would have dairy here and there ( not milk itself but cheese and yogurt) . And she was doing great during summer months. So I am not sure if it is the dairy that would eliminate tics. Thank you, Chemar . I am very confused about what is going on with my DD. Yes, we had strep ( strep carrier) , we did blood work with doctor T. Antibiotics didn't really help tics. So , she has been having tics on and off and when it was increasing she didn't have strep and DD was born in AZ and as far as I know there is no lyme disease there. But with TS ( I READ YOUR STORY ) , does it get worst over the years as far as intensity. For us I would say the second year overall was better then first. Now, also about TS history , I have never seen any tics in my DH, but this month we were moving to East coast and it was very stressful. So I noticed my husband has been doing eyebrow raising and nose twitching. I asked him about tics in childhood and he said he didn't have any. Even though he denies it I think there is genetics on this side. My DS has been having very mild tics too ( but also had strep at the same time with his sister , he was 1.5 at that time, and had some mild eye rolling ). So I am all confused about it all. I am just afraid that my DD will explode with severe tics at some point. Is there chance that they will stay on the mild side and disappear at some point? Thank you , Alena

I have 2 kids ( 3 and 5) y.o. and both have tics. Also our neurologist thinks it is Pandas, but I am not convinced. They did have strep when tics started. It also seems every time when tics get worst their behavior goes bad too. Usually they start being angry very easily and also a lot of crying for no reasons . Does this indicates TS at all or it does sounds more like Pandas. I know TS could go along with ADHD or ADD, which they don't have. Just this anger. My DS is the sweetest boy and always listens . So I can see a huge difference when he gets really mad and angry and then I see some eye rolls, which normally he has some light blinking here and there. Thank you very much for everyone's support on this forum , Alena

My DD ( not sure if she has pandas ) had Strep and hyperactivity along with anger and tics 2 years ago , she is 5 and a half now . Now we moved from AZ to MD and MD state requires MMR vaccination which i am scared of . I need to find pediatricuan here in MD who beleives in PANDAs and can give me something in writing that will with hold her from this vaccine. Please, anybody knows any practice in MD preferebly Annapolis area . AZ schools were just happy with a note of "personal beleives" . Thank you .

My DD ( not sure if she has pandas ) had Strep and hyperactivity along with anger and tics 2 years ago , she is 5 and a half now . Now we moved from AZ to MD and MD state requires MMR vaccination which i am scared of . I need to find pediatricuan here in MD who beleives in PANDAs and can give me something in writing that will with hold her from this vaccine. Please, anybody knows any practice in MD preferebly Annapolis area . AZ schools were just happy with a note of "personal beleives" . Thank you .

Hi ! I am having great success with these vitamins with my two kids who started having tics at age 2.5 . Now DD is 5 and DS is 3.5 y.o. We tried a lot of vitamins and supplements. Also we found out that both of my kids have MTHFR mutation. So that being said everybody in our family has this mutation. I have 2, my daughter has 2 , my DH has 1 , so is my son has something for sure as I have double 677C. That means our bodies can't transform regular folic acid into usable form. I think it called Methylation. So my DH panicked a little and found this doctor Cindy Schneider who specializes in all these natural treatments for a lot of conditions and her clinic called CARE ( Center for autism research ). She is in Phoenix , AZ. We didn't take my DD OR DS to her, we just wanted to know what is the best plans for us as a family as far as supplements for this MTHFR . She said that she believes in all this clean diets and no dairy and everything what basically people are talking about here. She said that also she believes ( based on her research, she has 2 sons with autism) that MTHFR responsible for a lot of these conditions in some degree. So finally about vitamins. She developed her own vitamins called APERTURE specifically to help kids with autism, tics, ADHD, ADD and other conditions. She recommended it to us. And we have been taking them for 4 months now and I think they help tremendously. Her formula has every vitamin in already usable form for our body if it has some mutation like we do MTHFR. It also has Acetil-l-carnitine ( which I think it suppose to help with vocal tics , I think it is from what I read on this forum) . And it did help a lot for my daughter with humming and throat clearing). Vitamin a ( as beta carotene) 1000 ( 20%) C(ascorbic acid) 500 (833%) D (cholecalciferol) 1000(250%) E( d-alpha tocopheryl succinate) 30 mg 2000% Thiamin 30( 2000%) riboflavin 25 (1471%) Niacin 10(1250%) B6 ( 15mg as pyridoxal-5-phosphate, 10mg as pyridoxine hydrochloride) folate ( 6(s)-5methyltetra-hydrofolic acid) 1000( 150%) B12 ( METHYLCOBALAMIN) 1000(1667%) BIOTIN IODIN MAGNESIUM 50%OF DV zinc SELENIUM CHROMIUM MOLYBDENUM ACETYL-L-CARNITINE 100MG 133% COENZYME Q10 CHOLINE LITHIUM BORON VANADIUM D-RIBOSE This is what in the ARPETURE. It comes in pills ( I think 2 maybe 4 a day) and powder ( cherry flavor ) for kids. All natural , no artificial colors of flavors or anything else as Doctor strongly against all of that bad stuff. It pricey though 70$ for month supply for kids over 40lb . For under 40lb half a dose. I give my kids half dose anyway even 5 y.o. is more then 40lb. I think at this point you can buy these vitamins in doctors office only, they mentioned once that they will sell it online soon. But people come from many states to buy them but just not a lot of people know about Aperture. So just wanted to let you know about these vitamins . I think they are doing great job for tics along with fish oil and clean diet. Sorry for any TYPPO AS English is my second language. http://center4autism.org/ this is the clinic