Rowens1214

thanks so much for the information.

thanks so much for the information. i feel the same way about toxins etc. just not sure where to start with the detox. any more information you can share is so helpful. i will ask my dr. about this also. she is very open to alternative treatments. thanks so much Robin

hi kathy, i do believe the movements are from a recent strep. dr just wants to rule out others things because of the type of movment he is having. does this make sense? Did your son have sudden arm and leg jerks?

I have not posted on this board in quit some time but check in often and am amazed at how much knowledge i gain everytime. i have a question. i have 2 boys with PANDAS. one is 17 and was not diagnoised until age 14. we went the whole tourettes, add, ocd, ODO ... just about everything until finally he went through a hellish experience with an undetected strep infection which caused a huge increase in tics and ocd. All this happening finally got the drs. attention and after 1 yr on antibiotics he is so much better. my question is mainly for my youngest son. he is 9 and has always been ticcish. both my kids had the testing done by Dr. Cunningham 2 years ago and to my surprise my 9 yr olds numbers were higher then my 15. ( the were in the Chorea catagory) at the time of the test he was not having any symptons. He has been doing great until the first of october he got strep ( well i think he had strep the test was neg) but he started having tics. kinda like a whole body shiver like he was cold. He was fine one day and the next this was going on. After two week and still complaining of a sore throat we went back and guess what the strep was positive this time. so.... only got a 10 day course of antibiotics and things seem to improve. 3 days after completing the antibiotics he still had a sore throat so back to the dr. again. while in the waiting room he started having arm and leg reflexes or spasms ( i guess tics) his right arm would shoot out very strong and fast and then he would stiffin his leg out. He told me it was very painful. The strep was negative but the dr agreed to give another course of antibiotics since he was ticcing so much. two weeks have passed and he is doing much better he is getting anxious at school and he tells me it is because he does not want the kids to see him tic. So needless to say he has missed a lot of school lately. His dr. called yesterday and was surprised he was still ticcing. I only see it 2-3 times a day but the dr. is concerned because of the type of movement it is and how infrequent it is. She does not feel like it is a chorea type and it really is not what she calls a typical tic. She wants blood work done and a neuro appt. etc. Have any of you all seen this type of movement??? she has me worried. ( like i dont worrry enought already) sorry for the long rambling post. i just need some answers and dont want to put my son through a bunch of tests if this dr. is just not getting it. She is not a PANDAS spcialist per say but very familiar with it and sees several kids with Pandas, pans and lyme. i guess this is why i am worried. any help is greatly apprecialed. i live in North Carolina so if any of you know of a neuro and PANDAS experience i would so appreciate a name. thanks so so much for any info. i really need to start breathing again soon. Robin

i just started my 15 yr old DS on GSE for yeast. he has been on abx for 6 mos. and his dr. recommended this just last friday. She gave me a liquid. i am to put 10 drops in juice etc each day for yeast. sounds easy right. well he has had HORRIBLEEEEEEEE RAGE and mood swings. would it be working so soon, ( removing yeast) nothing much has changed for him. ( full moon) he has been off the charts and its soooo hard to deal with his anger when he is 6'`" and weighs 180. He has thrown the remote at his Dad and TV the last 3 nights. He swears at me ( mom) and his Dad and brother. He is basically just mean and misable. i have been giving him probiotics for 6 months. He also has been on a low dose of nystatin for 3 months. we have not had a die off reaction in the past but I have never used GSE. any input would be great. i hate hiding in my room with my 7 yr old when he gets home from school. help. Robin

anyone know a good lyme dr. in or near wilmington NC. Need to get my 2 boys tested. Robin

I used xanax for my son (15) to get him through a very very hard time. He only needed half the dose recommended. I was hesitant to give it but my son was not able to eat, sleep, i could not leave his side. He also begged me to help him. We used it for just 4-5 days and things did get better once we starated abx for strep throat ( not symptons) Hope and pray that things improve soon.

Hi all, just wanted to put out the info on my son and see what you guys think. my oldest has PANDAS, youngest (7) had very mild tics for a few weeks and after 2 5 days packs of zith everything stopped. Before he went on the zith i had his blood drawn for the cam K II and the anti-neuronal antiboyd titers. His cam K II was 187 the normal control was 89 anti lysogangliside 80 normal 80-320 Anti tubulin 1000 normal 250-1000 anti dop 1 2000 normal 500-2000 anti dop2 16000 normal 2000-16000 he does fall in the normal cat every time its just the very high end. he seems fine now. No tics , no ocd, no fears. sleeps well even has stopped wetting the bed. the only thing i see is an increase in his mood swings. can be happy one min and the next very very mad/sad. He has not has a postive strep in 2 yrs. and strep titers are normal. His numbers are higher then his older brother who has tics, ocd. night fears. ODD. adhd...... older brother (15) his cam score was 151 normal control 94 anti lysoganglioside 320 his anti tub was 250 anti dop1 2000 anti dop2 2000 Now the youngest had constant strep for 2 yrs when he was younger (4 yrs ago) and constant upper respitory infections. anyway since we cannot find strep in my child what else should we be looking for that can cause such high numbers!!! help

My teen has never had elevated titers. He defiently has PANDAS. This was hard for his Dr. to accept until his strep cultures keep coming back positive and his cunningham number was 151. I did bring her in some of the articles on the FAQ board and it did help a lot. Dont give up yet. Robin

hey Emerson, i am so sorry you are having a bad week. I want you to know how much i appreciate your honesty about all you have been through. You reallly do help me to understand what my teen is feeling inside. i pray that your week will get better for u. you are in my prayers. Robin

pathfinder i will pm you. That may help my son if he is willing to talk with someone. my son has been through it all also. If i thought something or some dr could help us ( before we found out about PANDAS) we tried it. I feel bad for trying so much but i did it out of love. thanks so much for offering. hope this works!! robin

I know he is some what afaired of the tonsils coming out. The ENT gave us all the possile side effects and i wanted to run from the room. I also know he is tired of Mom trying to "fix" him. after 8 yrs of dealing with different issues he has lost some hope. He told me he feels fine now and just wants to be left alone. When i talk about PANDAS he says there is no such thing and that he does not have it. so there is deniel --- but he sure wants Mom to give him his pills that he feels are helping. He does not want to slip back into the days where his OCD was so bad he could barely function. I could try and bribe him but i want him to be involved with his treatment and he just wants it all to go away. Its just so hard. He woke up with a sore throat again today. His left tonsil is very enlarged. He wants me to take him for a strep culture. I can see the fear in his face and I want so bad to say ... this is why the tonsils need to come out. But for now i will love him and take the best care of him that i can without trying to control his life too much. off to the Dr. Maybe she can help him make the best decision. I have to also have faith that if tonsils coming out and doing IVIG is part of Gods plan for my son then he will give my son the wisdom and the courage to go through with this. That being said if he has another fit/rage about homework like he did last night i may take his tonsils out myself!!!!!!!

Hi all. I was hopeful that Emerson would give me her input on this and also others of teens. My 15 just got diagnoised with PANDAS this past May. He has had the classic symptons for the last 7 years. He has refused to get IVIG. says he will not do it and will not get in the car. I have an ENT that will take out his tonsils this christmas break from school and he is having a fit about this also. He is scared of course and i know its not a walk in the park but i feel certain it would help as does his Dr. who recommeneded this. He is so moody and defient and wants to be able to make his own decisions about IVIG and tonsils. Its driving me crazy. He is doing so much better now that we have treated his strep. but he still needs celexa, klonopin and antibiotics to get thru the day. He still has some mild OCD, still wants to sleep in the room with his younger brother. why is he being so resistant to treatments. I know he is scared but i feel like IVIG and tonsil coming out would help him sooooooooo muchhhhhhhh!!!! He has an awful temper. will still go into a rage if the answer is NO. He still has night fears. He wants to be independent and make his medical decisions but .....wants to make sure that MOM Does not forget his pills every morn and night. whats up with this. anyone have this with their teens??? by the way he is 6'1 and weighs 180. (plays football) he is very strong and when he says no there is no way to get around it. so frustrating!!!!) He has refused to get out of the car at Dr. appts. and at school. what can i do to convince him he needs these treatments to feel better physically and emotionally. I thought maybe another teen could convince him that he needs to listern to his MOTHER!!!

i cant figure out where this has come from. no hospital stays or visits. I did read somewhere about it lurking in lakes, ponds, etc. ( water). He did go to a camp this summer that involved swimming in a small pond, right next too the horses, pigs and goats. yikes. could it have been in the water?. My dr. gave us 5 days of zith. Oh its always something. It does not seem to be bothering him as far as tics, mood swings, but he is wetting the bed again after being dry for 2 weeks.

ok, i dont want to worry too much but what i have been reading on hear on doing a few searches it does not sound like its harmless. My son was complaining of a sore throat when the culture was taken but like i said it was neg for strep. Robin

I need some advice on this. My Dr's office just called to say the latest throat culture was neg for strep but did show pseudomonas. I did a quick search here and it came up a few times but i am not clear on what this is. It seams to be related to yeast??? Or it is the result of being on antibiotics?? not sure where to go with this. help!!! Doctor is busy with patients and i want to get some info on this before i call her back. Thanks Robin

my oldest son was diagnoised with OCD, TOURETTES, ANXIETY, etc at the age of 8. I too asked about PANDAS and was told there was no way he could have this. He is 15 now and 5 months ago had a huge increase in OCD, anxiety, tics went up... things were so bad he could not finish school. He had a strep test ( no sore throat) and it was positive. So we now have the PANDAS diagnosis. probably has been all theses years. He would have anxiety, increased tics, and OCD and everytime his dr. would change his SSRI. Yes like other older kids his temper, mood swings are still hard to deal with but he is in a much better place after 4 months on abx. very very mild OCD, no visable anxiety, no tics. He went back to school and is even on the football team. hopes this helps you feel better. It can be harder with older kids but dont give up. There is always hope. His younger brother now has symptons but we are dealing with it very early and hope we can keep it under control. Robin

I have mentioned several times about testing for lyme and dont get a great response. we see the dr. again in a few weeks and if she wont do it i will look into getting it done by someone else. nancy here are the antibody titers anti lyso-320 anti tubulin 250 anti dop 1 2000 anti dop2 2000 these are for my 15 yr old. cam number is 151. dont have the antibody titers for my youngest. Robin

I just got back our caM results for my youngest son. (have an older son with PANDAS) I read the numbers, had a good cry and woke my husband who said, now tell what that means again!!! I was not a happy Mom this morning..... but you know today when he did his neck tics it didnt worry me so much. i am sad that it does appear he has PANDAS but knowing what is going on is giving me some peace. It took 3 weeks to get results once we sent in the bloodwork. Not sure when we will get his other nunbers in. let me know how it turns out for you. Robin

i guess age could have something to do with it. oldest is 15 ( symptons for 8 years) youngest just 7.

I just got the CamK results back on my youngest son who i have suspected of having very mild PANDAS. He has become moody, bad temper, mild ODD. He has mild tics for the past 3-4 months. His score was 179. Now his older brother who has the OCD. Sep anxiety, tics rages, ODD, ADHD. His score was 151. Is this normal to have a higher cam score then another whose symptons are so much more pronounced. I was not expecting such a high number and am worried as to what can happen now. We are seeing his Dr. today ( he woke up with a sore throat) anyonoe else see this in their kids?

Finally got my sons Cam score back From Dr. Cunningham. score is 187 ( higher then my oldest confirmed PANDAS son) so where do i go from here.... oh yaa and he woke up with a sore throat today so we are heading out again for yet ANOTHER THROAT CULTURE. its never dull around here.

omg i just had this same thought just the other day. I too had chronic strep as a child and teen. never had tonsils taken out. Also had a lot of upper and lower respitory infections. I was a very anxious child and teenager and talk about rage. oh i have always blamed it on PMS. I saw a post where a MoM who had Lyme passed it on to her children during pregnancy. Do u think its possible to pass strep into your child while pregnant. i know this sounds crazy but some days i think i am ( my husband would agree) Or do we seem to pass down a poor immune system. Robin

swim - was your son showing signs of mono. i know this can be pretty serious. My oldest was checked 2 years ago and it was neg. Can you have Mono like strep and not have the symptons?

can you develop just myclonus after strep without the eye problems. just wondering because my husband and his sister both have been diagnoised with myclonus dystonia. is this the same thing. MY sister in law is 52 and had chronic strep as a teen. my husband was told he had RF then SC and later in life he was told it was spasmodic myclonus. Now my 15 ds has PANDAS and my 7 year old has started having have head shoulder movements. any thoughts on this!!