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possible PANDAS/ allergy testing


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hello again,

 

today i took my son who is 9 who was diagnosed 2 yrs ago with mild tic disorder to an allergiest/immunologist. my question is the blood work for immunology test what all does it test for. i explained to the dr that my son had strep 6 times in one yr and had tonsils/adnoids removed 2 summers ago and still from time to time gets strep but his tics seem to be way worse when he has it. she said this test will show if he is a carrier of strep but didn't really go into any details. i was curios if anyone knew what all it would show. does it test strep titers or is that a whole different test itself.

 

 

thanks

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hello again,

 

today i took my son who is 9 who was diagnosed 2 yrs ago with mild tic disorder to an allergiest/immunologist. my question is the blood work for immunology test what all does it test for. i explained to the dr that my son had strep 6 times in one yr and had tonsils/adnoids removed 2 summers ago and still from time to time gets strep but his tics seem to be way worse when he has it. she said this test will show if he is a carrier of strep but didn't really go into any details. i was curios if anyone knew what all it would show. does it test strep titers or is that a whole different test itself.

 

 

thanks

 

Hello! Welcome to the forum. I am sorry that you had to find us, but I hope you have been finding good information here. We all learn from each other every day. It sounds like you've been battling recurring strep infections with tics that increae with infections. I am wondering what the blood test is that the doctor ordered - do you have the name of the test? Also, have you ever kept track of your son's tics (like kept a journal with how bad the tics were each day)? Many families find that keeping a journal helps them to see if the tics are strongly correlated with infections.

 

Is your son having a lot of tics right now?

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hello again,

 

today i took my son who is 9 who was diagnosed 2 yrs ago with mild tic disorder to an allergiest/immunologist. my question is the blood work for immunology test what all does it test for. i explained to the dr that my son had strep 6 times in one yr and had tonsils/adnoids removed 2 summers ago and still from time to time gets strep but his tics seem to be way worse when he has it. she said this test will show if he is a carrier of strep but didn't really go into any details. i was curios if anyone knew what all it would show. does it test strep titers or is that a whole different test itself.

 

 

thanks

 

Hello! Welcome to the forum. I am sorry that you had to find us, but I hope you have been finding good information here. We all learn from each other every day. It sounds like you've been battling recurring strep infections with tics that increae with infections. I am wondering what the blood test is that the doctor ordered - do you have the name of the test? Also, have you ever kept track of your son's tics (like kept a journal with how bad the tics were each day)? Many families find that keeping a journal helps them to see if the tics are strongly correlated with infections.

 

Is your son having a lot of tics right now?

 

 

 

hi,

 

the tics started when he was 5 after putting him on adderall for possible adhd but at that time and during that year he had strep 6 times in 1 yr. we took him off the meds slowly and dr recommended having tonsils and adnoids removed he was 6 1/2 at that time . he is now 9 and tics have just gotten worse but do seem to ease up after a few months. he is went from a happy/hyper/outgoing lil boy to a ticcing/constant worrying/ no confidence lil boy this past year. since tonsils have been removed he doesn't seemt o get strep as much but his brother that is 5 just recently 4wks ago had it and that is when i noticed the tics getting worse again. he had been fine all summer but still may have made a lil humming tic when trying to go to sleep at night. now in the last 4 wks he is rolling his eyes, popping his knuckles, humming and mumbling tics. this past sunday he woke up and was popping his head and as of yesterday he is not shaking and popping his head. i am very worried.

we went to a childrens hospital in houston tx and they diagnosed him with a mild tic disorder 2yrs ago and put him on klonipin to help with tics. well that lasted 2 months because the tics go even worse on the klonipin going into the 3 month. slowly got him off that and he has been on nothing since.

i haven't ever kept a journal but now seeing this fast onset of all these new tics i am writing it down.

we recently 1 wks ago had a throat culture done after talking to his pediatricion about PANDAS but it came back negative. it just seems soooo strange to me that when he or his brother get sick his tics get worse then get better about a month later.

i am not sure of what all blood work he is having done but it did say on the paper that he was being tested for 9 diff things. i went ahead and am having my 5yr tested as well to make sure that neither are carriers of strep and maybe tht could be what is causing this. i have been reading on tourettes,tic disorders and pandas and he fits everyone one of those descriptions. being he is shaking his head i can't keep count of how many times he is doing this because it is from about an hour after he wakes up until he goes to bed . there is really not stopping. it is either a pop of the head over and over or shaking. i have cried and cried without him seeing and last night finally got my husband to agree that if we don't get any feed back from this immunology/ allergy test we are going to a tic speacialist. i hate seeing him hurt.

i am just sooo confused and wish there was someone local in tx i could call as far as a tic disorder specialist that i could get him into before school starts back up on august 23

 

thank you for your reply.

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I'm sorry your son is not getting better. There was a topic started May 31 by Graceunderpressure you should read. There is a Houston neuro listed and recommended. He can definitely help you with the tics but probably not PANDAS. I have heard good things about him from other sources. In the top of the forum there is "helpful threads for pandas" which lists doctors by state and there is a doctor in Ft Worth who treats PANDAS that is only 4 hours from Houston. Good luck.

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hi,

 

the tics started when he was 5 after putting him on adderall for possible adhd but at that time and during that year he had strep 6 times in 1 yr. we took him off the meds slowly and dr recommended having tonsils and adnoids removed he was 6 1/2 at that time . he is now 9 and tics have just gotten worse but do seem to ease up after a few months. he is went from a happy/hyper/outgoing lil boy to a ticcing/constant worrying/ no confidence lil boy this past year. since tonsils have been removed he doesn't seemt o get strep as much but his brother that is 5 just recently 4wks ago had it and that is when i noticed the tics getting worse again. he had been fine all summer but still may have made a lil humming tic when trying to go to sleep at night. now in the last 4 wks he is rolling his eyes, popping his knuckles, humming and mumbling tics. this past sunday he woke up and was popping his head and as of yesterday he is not shaking and popping his head. i am very worried.

we went to a childrens hospital in houston tx and they diagnosed him with a mild tic disorder 2yrs ago and put him on klonipin to help with tics. well that lasted 2 months because the tics go even worse on the klonipin going into the 3 month. slowly got him off that and he has been on nothing since.

i haven't ever kept a journal but now seeing this fast onset of all these new tics i am writing it down.

we recently 1 wks ago had a throat culture done after talking to his pediatricion about PANDAS but it came back negative. it just seems soooo strange to me that when he or his brother get sick his tics get worse then get better about a month later.

i am not sure of what all blood work he is having done but it did say on the paper that he was being tested for 9 diff things. i went ahead and am having my 5yr tested as well to make sure that neither are carriers of strep and maybe tht could be what is causing this. i have been reading on tourettes,tic disorders and pandas and he fits everyone one of those descriptions. being he is shaking his head i can't keep count of how many times he is doing this because it is from about an hour after he wakes up until he goes to bed . there is really not stopping. it is either a pop of the head over and over or shaking. i have cried and cried without him seeing and last night finally got my husband to agree that if we don't get any feed back from this immunology/ allergy test we are going to a tic speacialist. i hate seeing him hurt.

i am just sooo confused and wish there was someone local in tx i could call as far as a tic disorder specialist that i could get him into before school starts back up on august 23

 

thank you for your reply.

 

Kamkoop - this is very interesting! We also saw tics in my son at age 5 after he started adderall.. but I do not think the medication caused the tics. The medication may have aggravated the tics, but given all the OCD type issues and behavior problems my son had early on, I think the tics would have shown up eventually anyway.

 

I think you are on the right track with testing your children for strep. Unfortunatly, many of us find ourselves steering the ship when it comes to our kids with PANDAS. We come here to get a map of where to go with it, but we still do not have the experience to feel confident in what we are doing. I think that is what leads to so much despair and frustration.

 

About 4 months ago we started working with a PANDAS specialist and my own quality of life has improved dramatically - plus my son is healthier!! :) Just having someone to call and having a plan in place makes such a difference in my outlook.

 

Have you looked on the list of doctors that is pinned at the top of the forum to see if there are any within driving distance for you? You can also try Pandas Resource Network (www.pandasresourcenetwork.org), as they have a drop down box where you can put your information and ask for help and someone should get back to you.

 

Once you have the test results, please REQUEST A WRITTEN COPY - do not assume there are no problems if they say everything was "normal". What one doctor interprets as "normal" another may interpret as a problem. You ask for help in this forum if you do not understand your test results. There are some very smart and experienced people here who like to be helpful in that way! (Without them, my son would be a mess right now!)

 

Keep us posted as you move forward. You can also use the private message if you want to ask a question but don't want to post it on the public forum. Best wishes!

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