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Suspected PANDAS - What do I do?


nojo

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Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.

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Sorry to hear about your daughters present condition. When did this all start?

 

We initially had the chorea/tic movements but I guess not every child does. At least you have gotten her to a Dr. each time and are recognizing the symptoms because of the personality change she has been having. There may be a carrier to strep in your house or possibly she is never clearing of the strep completely.

 

There is alot of great advice here. This is the most active PANDAS board I have found. As to Dr's it just depends on the individual Dr's knowledge of this disorder. We have found the psychiatrist to be of a big help because of the psychiatric symptoms but they will not prescribe the antibiotics. An immunolgist can be good because they often prescribe antibiotics for diseases. However they don't all know the background of PANDAS. Be prepared to read and print off alot of handouts to take with you. You will tell by their reactions within minites if they are willing to work with you on this. A neurologist is often needed for the brain/basal ganglia symptoms such as tics and ADHD. They can run alot of bloodwork and tests. Since you say she has allergies maybe your allergist would work with you. There is a tie here to the 4 A's as written by Dr. Bock. Allergies, autism, adhd and asthma. You may want to check out his book. He does discuss PANDAS. However he is a naturalistic Dr. so does suggest wholistic treatments. We have seen all the types of Dr's you have mentioned and each works on different avenues. It is luck of the draw. Perhaps someone here in your area can refer you to a Dr. who has helped them. Our next stop is a rheumatologist who treats autoimmune diseases. I have heard this particular one treats PANDAS. Until you get to the appointments it is hard to tell how many kids they have actually treated with PANDAS since it is rare. You can ask on the phone. Get ready to be an active advocate for your child. Nobody knows more about this disorder then the parents. I pray you find answers.

 

Michele

Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.
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Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.

 

 

I'm very sorry to hear about your child. I think if it were me, I would try to obtain prophylactic antibiotics to keep that strep away. Once the strep is gone and for longer than a month you can reevaluate your child's needs. Michelle might be right that there might be a carrier in the household. Get everyone checked. Our pediatrician was very good for prescribing antibiotics prophylactically once I brought in medical research papers regarding it. Also the best specialty doc I took my child to was a pediatric rheumatologist. He helped to confirm that what my child was going through (sudden onset severe OCD with tremors, personality change, rages, regression following sore throat with fever that for whatever reason cultured negative so no antibiotics were given) was probably autoimmune in nature and that antibiotics and Dr. K's suggestions were valid, given my child's history. Possibly due to the asthma and severe allergies ...an immunologist could help too. Have you seen Dr. K's website? www.webpediatrics.com It has some useful information on it. Good luck to your family.

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I would start by making phone calls to neurology and immunolgy peds Dr's. If you need a referall check with your ped. Ask if they have experience treating PANDAS. If they won't answer you over the phone call someone else. If you have a local children's hospital call them and talk to a communications person. They may have a mentor program. It takes a lot of time to get in to specialist so start today! Best of luck. Let us know.

 

Michele

Thank you both for your quick and thoughtful reply. I know that something is going on with my dd, and I just didn't know where to start. I'll keep you updated. Noelel
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hi. it is GREAT that you have been so careful to notice the changes and to link them to strep. many parents wouldn't have been able to do that. my recommendation is an integrative, biomedical pediatrician. often times they are DAN trained (defeat autism now). my son does not have autism and isn't on the spectrum, but his biomedical doctor has a tremendous amount of experience with pandas and healing the gut, etc. you might have some luck if you find a local DAN practioner. being a clinical psychologist myself, i would not recommend that route for pandas but seeing a cognitive behavioral psychologist (a clinical psychologist with speciality in cbt) could help you to manage your and her reactions. personally, i would first try to get on the right track medically. hope this helps!

 

Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.
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How is the DAN treating the PANDAS symptoms? I did this route for awhile. It is very expensive, not covered by insurance, and the improvements were slow if any. Could you give some detail to how it has helped your child? We are seeing a behavioral psychologist to modify behaviors but also a psychiatrist for the moods and ADHD/OCD. As a psychologist, how do you feel about giving these PANDAS kids antipsychotic meds and stimulants? I am very scared to but feel there is few options.

 

Michele

hi. it is GREAT that you have been so careful to notice the changes and to link them to strep. many parents wouldn't have been able to do that. my recommendation is an integrative, biomedical pediatrician. often times they are DAN trained (defeat autism now). my son does not have autism and isn't on the spectrum, but his biomedical doctor has a tremendous amount of experience with pandas and healing the gut, etc. you might have some luck if you find a local DAN practioner. being a clinical psychologist myself, i would not recommend that route for pandas but seeing a cognitive behavioral psychologist (a clinical psychologist with speciality in cbt) could help you to manage your and her reactions. personally, i would first try to get on the right track medically. hope this helps!

 

Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.

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the DAN doctor is guiding us regarding all supplements and medications as well as recommending testing (e.g., urine, stool). she is my go to person for the moment and i like her because she walks on both sides of the street - traditional and alternative, integrative. it is expensive. my son is 5 1/2 and first started with tics 2 years ago in the context of strep. he also had sensory and social pragmatic issues -- through supplementation and dietary changes and likely maturation, his sensory and pragmatic challenges are much improved. i think that his custom amino acid blend has been very important in the social arena. after having a very quiet year, he started to suck his shirt constantly last spring but that was it. over christmas he started to tic and manifest ocd symptoms -- probably in the context of strep but hard to always tell because he often does not have typical strep symptoms. we are just now beginning to start more aggressive antibiotic treatment and propylactic use due to his ocd repetitions. so, it is hard to tell what works and if it is really helping...i kind of think that since we have been healing his gut and body for a while now, we have been emptying his bucket, if you will, so that his manifestation of pandas symptoms is less severe than it might otherwise be...honestly, i don't know and i watch and worry about him reving up at any time. as a behavioral psychologist, and not to sound obnoxious, i trained at one of the best schools in the country and a few of the best hospitals and treatment centers in new york city, i am weary of the majority of psychologist and psychiatrist's acceptance and real knowedge and understanding of pandas. that is not to say that you can't luck out and find a gem, or someone who specializes in pandas, but even my colleagues, and myself before my son's issues, are incredibly uninformed. i guess as a mom and a psychologist i would turn over every stone before trying the antipsychotics and stimulants. the side effects can be very scarey and harmful and i would first want to make sure i research and attempt to understand as much as i can about other options before going down that route. does that help at all? i know it helps me to have this forum and to know that i am not alone (because that is often how it feels!).

 

julie

 

 

How is the DAN treating the PANDAS symptoms? I did this route for awhile. It is very expensive, not covered by insurance, and the improvements were slow if any. Could you give some detail to how it has helped your child? We are seeing a behavioral psychologist to modify behaviors but also a psychiatrist for the moods and ADHD/OCD. As a psychologist, how do you feel about giving these PANDAS kids antipsychotic meds and stimulants? I am very scared to but feel there is few options.

 

Michele

hi. it is GREAT that you have been so careful to notice the changes and to link them to strep. many parents wouldn't have been able to do that. my recommendation is an integrative, biomedical pediatrician. often times they are DAN trained (defeat autism now). my son does not have autism and isn't on the spectrum, but his biomedical doctor has a tremendous amount of experience with pandas and healing the gut, etc. you might have some luck if you find a local DAN practioner. being a clinical psychologist myself, i would not recommend that route for pandas but seeing a cognitive behavioral psychologist (a clinical psychologist with speciality in cbt) could help you to manage your and her reactions. personally, i would first try to get on the right track medically. hope this helps!

 

Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.

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