LMama

Thank you! I understand a lot more now!

Question: I have contacted Dr. Cunnigham via email, and my son does qualify for her study. I am considering sending her his blood sample. I have heard people talking on this site about her, that is how I found out about her. Can someone please explain to me what the purpose of her study is and what the blood tests that she runs will tell us? She has sent me some literature via email, but to be honest, I really just don't understand it. It's all so very technical. I want to participate if it will help us or give us new information that can help us in diagnosing for sure if this is PANDAS or Tourettes, etc. I feel so strongly that it is PANDAS. I hope that maybe her blood tests will help us know if it is or not? Thanks! LMAMA

Wow. Your situation sounds a lot like our situation with our son. He is almost 6, and we saw the blinking around age 3. At that time we didnot see frequent urination, but he did have to constantly go potty (seemed to have recurrent diahrea for at least a couple of months...so bad that I would have to stop at a store even on the way to preschool so that he could get out and we could finda bathroom so he could go.) This lasted a month or two, and it went a way. (DOES ANYONE KNOW IF FREQUENT (loose) BOWEL MOVEMENTS ARE ASSOCIATED WITH PANDAS TOO???) Then we had a strep episode a year ago, and within a month had a full blown attack of tics (blinking, throat clearning, sniffing, and at least 10 others). I saw the behaviors before anyone else did, and everyone thought that I was crazy until the tics got so bad that you could not miss them. He also was very clingy, fearful that something bad was going to happen to me. Nighttime was an issue for us for sure. He also had emotional outbursts, but we didn't see anyfull blown signs of OCD behavior. Our son was on antibiotics for only about 15 days, and it took him at least 6 months to get better,but he did get better. Our pediatrician did believe in PANDAS, but does not believe in long term antibiotics. Most recently, my husband and I were talking about how we had not noticed any tics for a long time. Then he had a sore throat a month or so ago. Tested negativefor strep, so the pediatrician would not give us antibiotics. A couple of weeks later another sore throat. Again, negative. Started throat clearning again, and has shown some very mild signs of OCD for only a few instances, and he has been very emotional and clingy. I insisted on antibiotics. To make a long story short, he had about 20 days of antibiotics. Tomorrow is his last day of treatment. He has been ok. No major tics except occassional throat clearing that others might think was just allergies. Still somewhat emotional...This morning he spent at least an hour in the bathroom freaking out (crying and stressing) that I "messed up" his hair and he could not get it to go back the way that it was. This went on even after we got to my mom's house (who watches him while I work). Then after about an hour, he was suddenly ok. So ... my point in telling you all of this...I can relate to you... Our symptoms are not as severe and clear cut either...but I definitley see something. We have contacted Dr. Cunnigham and we do qualify for her study, and I am considering sending her his blood sample. There is also a DAN! doctor in our area, and I am in the process of trying to get him in with him. Like you, I feel the same way... I fear not treating him and allowing it to get worse. So far, we have been blessed by only one "severe" episode last year. This year has been very mild so far. But I am fearful that if we don't get a handle on it, it could get worse. I feel for you. You are not alone. I have felt so much support from the WONDERFUL parents on this site. I have learned so much from their stories. Keep searching and advocating for your son. Kudos to you for being aware enought to research this and help him. Good luck with everything. LMAMA

Can anyone tell me where I can find this Dr. K's website? I read a lot about him in here. Thanks!

Anyone ever try a product called Tarvil (no longer manufactured, I think) for tourette's? It was used to treat Tardive Dyskinesia and sometimesTardive tourettes. You can buy the same thing at GNC or other vitamin store. It is formulated from Leucine, Isoleucine, and Valine.

Lisa, WOW!What an awesome story! That is great! I am so glad that Alex is doing better! What a sweet boy. Thanks for posting the update! My son (5 and a half) is doing better. Was on antibiotics (Cleocin Pedatric) for 7days and then he developed a rash all over his legs, hands, some on chest too. Wehad to stop the cleocin, and then I convinced the pediatrician to give us anotherantibiotic. Now he is on "biaxin"(spelling?), and is doing ok on that one so far. We have another few days on this one, but that will make about 17 days on an antibiotic so far. His OCD type behaviorsare gone, and I only notice occassional throat clearing tics. He's doing great so far. I went for a walk tonight and thought about you and wondered how your son was doing. I am so glad he is better. LMAMA

Pleacse check with all of your doctors! TD is NOT something to play around with! It can be permanent. I don't mean to scare you, but it is serious. You cannot stop medications like this without consulting your dr.b/c it can make a reaction worse (if that is what it is). It may just be a tic, but please be careful and consult with your drs.

Hello. I was wondering if anyone has ever tried the combination of Leucine, Isoleucine, and Valine for tics. There was a formula called TARVIL that used to be used to treat tardive dskinesia, but it has also been used to treat tardive tourettes brought on by taking reglan (an antinausea drug). I believe that TARVIL is no longer available as a biomedical food, but the 3 amino acids can be found at most health food stores. Just wondering if it has worked for anyone.

Interesting info! Thanks for sharing! Have you ever thought about asking her nephew (or his parents) to post what works for them on this forum? I know that I would lvoe to know more about this. I am on the PANDAS forum, but the TS forum would also probably be interested in what works!

I don't know. I am new to this forum, and new to PANDAS. We had our first episode a year ago, but he improved to almost 100%. he is on antibiotics now for a sore throat that tested negative for strep, but we saw a flare up of symptoms (mild, thanfully). Anyway, so last year when tics were heavy, our son was in swim lessons. He LOVES to swim. Every time we left the pool, as soon as we got in the car, the sniffing and clearing of the throat became very strong. It seemed like a clear correlation between increase in tics and the exposure to the pool. However, eventually his symptoms faded (within about 6 months), and by a year, he seemed almost 100% better. He could even swim with no tics or anything. He hasn't gone in the pool this week since this new sore throatepisode, so i am not sure if we are entering another period of tics, or if the abs will heal us. I don't know enough about the pattern of this disorder to really tell you what to expect. Weare so new to this. My only prayer for you is that his symptoms get better and then he can swim without problems. I understand what you mean. It is very hard to tell your child not to swim. They love it. Do you blame them? It is fun. I don't know what to tell you. But I hope you all get better soon. LMAMA

Pandas kids often get over the initial episode with time. However, with repeated episodes it seems that many kids become less responsive to abs and may have a "baseline change" where some issues (anxiety, or tics, adhd, etc.) become chronically present. PS. everytime I see your screen name i think of that children's book "Is Your Mama a Llama?" What's the best approach then? abs work for now. at what point can a parent request more treatment? Does the IVIG I hear about work to "cure" this? I feel so lost right now. I want to save my son from all of this. I so fear it will get worse for him. he's ok right now, though, you know? but I fear that he will get this over and over again and then not get better. Does this follow them as adults too?

Do you think our kids will ever "outgrow" this? Have you ever heard of kids outgrowing this?

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose. He has not had any hyperactivity reaction to this medication as of yet. Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.) Michele, What is your son's pandas like? is it different every time? When we saw it first last year, our son only had tics, but this time we have seen the slight ocd symptoms first. Maybe we didn't notice the ocd last time around. Also, does your son always have the symptoms, or do they go away and then come back when he gets another strep? Our son started getting better after about 6 months... and then improved to almost 100%. I am just curious as to what this will look like for us. Today I took the baby to the dr. and she didn't want to put the baby on antibiotics. She said her throat looked fine. She still has a fever, but no other symptoms. They said the 48 hour culture tests on both kids came back negative (they send out the rapid tests for culture...I didn't know that until today). Dr. still thinks that my son doesn't have strep, but that he is just "flaring up" due to a viral illness. She says that can happen with PANDAS.Thanks, LMAMA

I am new to all of this. What is biofilm? Here's wikipedia's article: http://en.wikipedia.org/wiki/Biofilm Thanks! All of you are such amazing advocates for your children! I am learning so much! thanks!

Our dr. just put us on 10 day treatment of clyndomycin 3 times a day. We are new to all of this, so I am not sure how it will work. We had a strep infection that appeared to cause PANDAS symptoms a yr ago, and then our son improved within the year to almost 100%. Now we have another suspected case of strep and are seeing some slight behaviors come back so we talked the dr into antibiotics. We'll see how this works. I hope yours works out too. Let me know.

Is PANDAS brain damage, and how can it be reversed? Antibiotics? My son has been recently diagnosed a yr ago, and recovered, but now we have another suspected case of strep so we are seeing some slight behaviors start to crop up. How can we "reverse" this damage???

I am new to all of this. What is biofilm?

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose. He has not had any hyperactivity reaction to this medication as of yet. Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.)

Wow! When he acted that way, I just knew it was a side effect, but the pharmacist tried to dismiss it. The I just called the dr. and had them switch him to something else. No one ever told me that itreally WAS a side effect! The dr. suggested that maybe it was the artifical sweetner in the medicine.

Thank you! I Does anyone know of the best antibiotic to use and what dose works best? Wow! I can't believe there are so many of you out there (and awake!) at this hour! Thank you all for your responses! LMAMA

Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness. While on the augmentin he got really hyper and aggressive, which is NOT at all like him. He was jumping and hitting and out of control. This went on for the 2 days he was on it, and then when we switched to a different one, the hyperactivity went away. I assumed it was the augmentin.

Thank you for responding. I have never posted to this type of thing, so it's exciting to know that someone is even out there! THANK YOU! I am printing out your post and will take it to the doctor tomorrow. Hoe often does your child get strep? I have been so afraid to let my son go anywhere other than preschool for fear that he would get sick. Then in the last month, I put him in a couple of Vacation Bible school sessions. the last one just ended last Friday, and he was in with a bunch of kids he didn't know. I suspect maybe that is where he got it? How can you protect your child? Does the prophylactic use work? I know that our dr. said they didn't believe in doing that. What about removing tonsils? Thank you again for your response. God bless you for being out there tonight. I have been worrying about him so much tonight. LMAMA

PS, obviously, my son got better last year, but it took more than half the year. Do many PANDAS kids get better with time? That is what the dr. told us last year. What can I do to make SURE that he has the best chance of recovery? Thank you for any advice... LMAMA

My 5 and a half year old son had strep throat a year ago, and developed strong tics for several months, with some OCD behaviors (slight). The doctor suggested PANDAS, had him on antiobiotics for 10 days. He slowly improved, and has been doing great for several months now. We have been ever so thankful to god for healing him. In the last month, he has had 2 sore throats. Both times, I took him to the dr. and they did the strep test. Negative. So tonight he started this new ocd behavior (again, slight at this point, but clearly ocd type behavior). What alarmed me most was that he was aware of the anxiety he felt and the need to "do" what he needed to do. he said he was afraid to tell me about it b/c he thought I would take him to the dr. :-( I reassured him that he was ok, and he went back to playing. Later I saw him "doing" his ocd thing. What can I do? I worry that he has strep even though the tests were negative. I am going back to the dr. tomorrow to ask for antibiotics regardless of the test results. He had a bad (hyperactive) reaction to Augmentin last year, so what antiobiotic would be best? How much and how long is usually recommended for PANDAS? I am so worried about him and I am afraid that I won't do the right thing. I have never posted to one of these sites (I don't even do facebook or myspace), so I am hopeful that someone sees this and replies. Any advice would be greatly appreciated. LMAMA