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Lenny,

She was strep free, tic free for 15 months after her tonsils and adenoids removed. That was about 4 1/2 years ago. She still has flare ups when she gets strep, but she doesn't get it nearly as often as when she had tonsils. Also, my son is now 6. He had his tonsils and adenoids removed when he turned 5 b/c they were so large that whenever he had a cold, virus, or strep and they would increase in size, he would have sleep apnea every night during the course of each illness. He has never been "formally" diagnosed with PANDAS, but I believe he has it b/c as with my daughter the only way I knew they both had strep was watching their behavior change. Neither would get the typical sore throat, fever, or even have a red throat with strep. My daughter would immediately show tics and OCD behaviors. My son was different. He would become extremely emotional, throw frequent screaming fits, and just acted very labile. Does your son have frequent strep throat or even throat infections (tonsilits) that does not test positive for strep? Does he snore when sleeping, especially when he is sick? If so, you may want to go to a different pediatric ENT for another evaluation b/c these are all reasons to consider a T & A (tonsilectomy and adenoidectomy). Large tonsils and frequent infections can cause poor weight gain in children. We saw a big improvement after surgery with both children.

Colleen

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Lenny and Colleen,

I am just wondering about the tonsil thing now. How does having tonsils removed or big tonsils have an effect on weight? I don't believe my son has frequent infections (really hardly ever that I am aware of anyway) and PANDAS testing was negative, but the Dan doc did say he had big tonsils, and he is a lightweight for 8 yr old, and he breathes (snores?) pretty loudly when sleeping (he recently slept by a friend's house who was minding him and she said she could here him breathing from the other room. Just want to know for future-- always good to have knowledge.

 

Thanks

Faith

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Ditto... for us on the big tonsils, and the sleeping noises, and small size. Faith my son hardly ever gets sick too. Sometimes he can't even breath through his nose, and there is nothing wrong with him.

 

I remember once we were at the Dr. for my oldest, she had tonsilits, the Dr. looked in my sons throat just for the fun of it, and about fell off his chair. he asked if my son got sick a lot. I told him no, he was thinking my son should have his out, but couldn't justify it, so we went on our way. I think my son was 7 or 8 at that time.

 

C.P.

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C.P. and Lenny,

Loud snoring and mouth breathing can definitely be caused by obstructive sleep disorder which can be a direct result of large tonsils and adenoids. My daughter snored loudly since she was just a toddler. My son did the same but it would turn into sleep apnea where he would completely stop breathing for more than 6 -10 seconds (that was so scary) whenever he had an upper respiratory illness. Neither of the had problems with low weight gain, but obstructive sleep disorders can definitetly cause failure to thrive (failure to gain weight and grow at the appropriate level). Our pediatric ENT said if the tonsils are large, the adenoids will be also. The large adenoids are what causes trouble with breathing through the nose. I took my son to another pediatric ENT (just to be sure he needed them out) and she used a mirror on a long handle (looks like the mirror a dentist uses but with a much longer handle) to view his adenoids, which were also huge. Since having the T & A, as it is called, both children stopped snoring within a week and no longer snore. Here is on article that may explain things better.

http://www.aafp.org/afp/20040301/1147.html

Colleen

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My son's tonsils and adenoids were removed last yr because he was getting too many throat infections which was causing wheezing . His tonsils were pretty large and lot of snoring was there and then it became sleep apenia and he use to gag while going in to deep sleep ( that was so scary i use to sit by his side whole night to prevent him going in to deep sleep till he was operated horrible 15 days ) . After his tonsils and adenoids were removed he still got some infections but less then before and last time strep followed by Tics .

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I just foud this website and I would not wish this on anyone, but I am so happy to find others that can understand! My 6 year old son was diagnosed with PANDAS and I can not find anyone(doctors) who can tell me what to do. They have put him on a penicillian injections every three weeks for five years, have us seeing a neurologist/psychologist./ENT/ID, and basically said give him Paxil or Clonidine. His tics went away after a second round of amoxicillan, but the OCD/behavior issues still are coming and going. I am at that beginning stage of not knowing where to go and who can help us. His behavior/OCD issues go away about two days after his injection and then start coming back about a week before the next one is due. The doctor's say the penicillian isn't playing a part, but how could this happen the same way three months in a row? Should I have more blood work done to see if there is strep still growing? Maybe a blood culture? Will this go on for the rest of his life or is there something I can do now to help stop it? I look forward to any help you can give! I feel as if we are at a stand still. No one knows how to help us. I don't know how to help him.. :unsure:

 

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground.

 

Michele

 

Wow! My Ped told me my son had to have the PCN injections until he could swallow pills. I can't wait to ask about the liqid PCN. Thank you for that info! If you go to Google and type in PANDAS NIMH click on the first website and then click on recent publications the first publication that comes up is all about azith vs pcn you can bring to your doctor. I'm going next week and talk to mine about it. I'm also worried about school next year. Do we start the year off telling the teachers and draw attention to my child from the start?

 

It sounds like we are leading similar lives. Andrew is behaving crazy on the antibiotic penicillin V on day five. He is out of control. I have had to deal with one behavior melt down after the next all day. I am really interested in behavior modification. He seems like a master at manipulating us. I am strict and stay on him but he wears us down by his constant tantrums. I have a four month old and would take triplets anyday over dealing with him. I worry the school will label him off the bat and he will be known as a bad kid. His behaviors seem to flare with illness so who knows how he will be at the beginning of the year. He is very smart but may be considered special ed because of his behavior.

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Welcome to this forums and sorry to feel about your son.

First How was he diagnosed about PANDAS. Was his o-aso and dnase titers counts high after strep infection ? those are the two things which someone should be looking for PANDAS along with +ve strep test and TIcs,ocd or Both. Second why was he put on shots , he's six and use amoxcililin or zithromax easily for antibiotic treatment.

 

About doctors Tanya murphy is in Florida at Shands clinic you can go there i can PM you there number if required . I have been in touch with them about my son as i am on west coast. Another doctor i know has joined in Kaiser Georgia from Seattle .

 

 

His ASO in March when this all started was 297 and the DNASE was >1460. They have not tested again. How often should I have this tested? My Ped told me that the injection we are using Bicillian LA is a PCN that only targets the strep and won't hurt the good antibodies. He also gags everytime we have tried pills. We are practicing with swallowing M&M's, but he still is having a hard time. I am on a waiting list for Dr. Murphy. To be short about the diagnosis of PANDAS: He was first diagnosed with Sydenham's Chorea by his Ped. The Neurologist disagreed and said PANDAS. I just had my other son tested due to many Strep infections and his ASO was 174 and is DNASE was 960. They are having him see ID. I just wonder if I should start him on PCN also. He did have a neck and arm tic last August that the Ped said was just nerves. It went away after a couple of months and we didn't think anything of it until now. I just had them look back and he had positive strep culture 16 days before I took him in for the tic. Thank you for all the great support. I do not feel so alone anymore!

 

Just wondering have you had him to an allergist for food testing allergies? I have not but that is my next route after I get a hold of a behavioral therapist who works with neurological issues. I have an appointment with a well known DAN Biomedical Dr. in August. I don't know if he will run a full panel with food tests or not. My sons blood work was all borderline for elevated titers and strep. They are at least trying something because of the persistance of me. I have been to the Cleveland Clinic and he said just wait, but I am tired of waiting and seeing him deteriorate. With age he gets worse and with each virus. Is yours just strep? Ours is also viral like flu, strep or colds. It is hard to keep them well so the behviors never seem to go all the way away anymore.

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Our son snores and wheezes most nights and has bad breath somtimes. His tonsils never look that bad, but they are certainly large. I think another opinion might be good.

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Hi. My daughter was diagnosed with PANDAS when she was 5 and after 10 months of recurrent strep throat and going through a lot of different antibiotics (Pen VK, Amoxicillin, Augmentin, Clindamycin) we took her to a pediatric ENT who took one look in her throat and could not believe how huge her tonsils were. When he removed her tonsils and adenoids he said they were so "cryptic" that the antibiotics were not getting to all of the strep hidden in the crypts, nor would it ever have gotten to it. Chronic tonsil infections and enlarged tonsils can lead to a condition called chronic cryptic tonsillitis. The tonsils contain many small pockets and infoldings called crypts. Initially, on a course of antibiotics her tics would disappear or at least dramatically decrease until she finished the antibiotic at which time the tics and OCD behaviors would return. She was completely symptom free and strep free for over a year. You may want to consider taking your child to a pediatric ENT for evaluation.

I am the one who posted about the ineffectiveness of penicillin on strep. Someone recently posted the link to the article about this. The evidence is out there about Cephalosporins and Azithromycin being the drug of choice for strep, unfortunately a lot of physicians are sticking with penicillins. There are many cephalosporins and also Azithromycin (Zithromax) that come in liquids. I wish you lots of luck! Hang in there!!

Colleen

 

Could someone please find me the link on the article on the drug choice for strep?

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Michele,

I think this is what you are referring to:

 

http://www.medicalnewstoday.com/medicalnews.php?newsid=35136

 

Michele, in one of your posts, I thought you said that your child "tested negative to strep and titers."

How did they come to prescribe penecilin if that was the case? (Maybe I misunderstood, but curious how that came about). Also, could I ask if you have eliminated any junk type foods for him? I really think you should try something like the Feingold Diet or at least start eliminating obvious high sugar foods and juices. I remember when my son was in nursury school, a classmate was having some behavioral issues and the parent was telling us that they took him to the neurologist and they realized he was used to drinking several juice boxes a day, so the neuro suggested they cut that out and saw a big difference in the hyper behavior. Also, try to find that book "Is this your Child" by Doris Rapp at your library. It has alot of interesting insight. Have you called the doctor about your son's possible reaction on this antibiotic? ... :unsure: ... Hope things settle down soon.

 

Faith

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Michele,

I think this is what you are referring to:

 

http://www.medicalnewstoday.com/medicalnew...hp?newsid=35136

 

 

Michele, in one of your posts, I thought you said that your child "tested negative to strep and titers."

How did they come to prescribe penecilin if that was the case? (Maybe I misunderstood, but curious how that came about). Also, could I ask if you have eliminated any junk type foods for him? I really think you should try something like the Feingold Diet or at least start eliminating obvious high sugar foods and juices. I remember when my son was in nursury school, a classmate was having some behavioral issues and the parent was telling us that they took him to the neurologist and they realized he was used to drinking several juice boxes a day, so the neuro suggested they cut that out and saw a big difference in the hyper behavior. Also, try to find that book "Is this your Child" by Doris Rapp at your library. It has alot of interesting insight. Have you called the doctor about your son's possible reaction on this antibiotic? ... :unsure: ... Hope things settle down soon.

 

Faith

 

Thanks for your reply. I think his tests came out borderline but with his history the neurologist and immunokogist called in a three month supply of pen v without even seeing him again. Yes he does get hyper to sugars and dyes and juices. I just put this all together today so I have not called them yet. I willcheck out the book. I am so mad tonight because at the softball game Andrew was being so annoying about going to the fair and park and my husband sent him to the park with his dad after telling him to stop hitting the fence and whinning five times. It is like rewarding the whinning. He just does not get this at all.

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Hey all,

 

Just an FYI here for anyone wanting this info. I read that if you want to ween your child off of sugar that pears were very good to eat during that time. It is a slow steady rise in blood sugar levels.

 

C.P.

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Interesting.....yes, and pears are low in salicylates too if that is an issue (Feingold Diet). I use an organic pear juice from healthfood store for my son and was mixing his vits in there when I had to. Another good juice seems to be "Pure" by Tropicana. It comes in a plastic bottle in orange/mango and pomegranite/blueberry. I just like it for him because it doesn't contain high fructose corn syrup, but it still has to be very limited because it does contain natural sugars. We just use it to mix vits.

 

Faith

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Where do you read about the Fengold diet? Is it hard to do for kids that have emotional problems? Where do I get allergy food testing done?

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