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NEWARK

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Posts posted by NEWARK

  1. Hey

     

    It is a hard time we had same thing happen with my now 7 year old son he was 6 when he started his symptoms all of a sudden I have done a lot of research and it could be a number of different things. Most simple yes it could be severe ticks that will eventually lead to touretts how ever there are other things to rule out before accepting that diagnoses. It could be what take call pandas which stems from having a strep infection but it doesn't necessary have to be a strep throat infection it could be in her blood too. I would insist on getting a strep blood test done ASAP so if it is the cause of it you know. It is hard to detect the strep if you do not get it tested when it is active then its kind of hard to prove it is that ofcourse assuming it is that which it could not even be. But worth looking into. We go these blood tests done ASO Titer, Strep A Throab Throat ( just to make sure its not throat this is not blood test), DNAse b AB, streptococcal I would start with those there are other things as well but if its Pandas and the tests show she has strep in her system you can treat with antiobiotics right away to help her symptoms. If its not Pandas its going to be a long jorney to figure out what is wrong as it has been for us and we are still searching but we have had good and bad days that I can share if you want. Also I would go to a health store get something what they call acidophilus probiotic . It helped our son to help in getting his body more in balance.

  2. we have had our son on clonadine for 3 days and we are using the patch. Looks like his tics are less severe but still there but he is very tired and falling asleep at 5 pm and I was told at school he was very tired Im hoping this goes away. Its going to be a hard decision to choose to have tics or a child that has no energy. Going from completly normal and fine into this rapid onset of tics 6 weeks ago is really making me sad for him.

  3. dont wait untill April I read somewhere that if not treated correctly the brain can get use to the bad behavior as normal and even after cured with meds the brain will have a residual pattern of doing the behavior. For us teh severe symtoms started 7 weeks ago and I have been one pain in the behind for all dr.s involved from pediatrics to infections diseases to now neurologist. They receive constant emails from me and I wont stop untill I my son is better. and I was told April for one specialist too or the most commen answer I guess it not taking new patients. I just finally got a name of a dr I hope to GOD will see us will know on MOnday.

  4. Here is a bunch of test names that we have done in this jorney to figuring out the problem. I am wondering what are the specialists testing for that you are all going to see? Just want to compare names of tests....you dont have to share results of tests.

     

    11/22/2011 LEAD, BLOOD

    11/22/2011 ERYTHROCYTE SEDIMENTATION RATE, AUTOMATED

    11/22/2011 MYCOPLASMA PNEUMONIAE IGM ANTIBODY

    11/22/2011 IMMUNOGLOBULIN G

    11/22/2011 FERRITIN

    11/22/2011 VITAMIN D, 25-HYDROXY

    11/22/2011 TSH (THYROID STIMULATING HORMONE)

    11/22/2011 FREE T4

    11/22/2011 ASO (ANTI-STREPTOLYSIN O) TITER

    11/22/2011 DNASE B ANTIBODY

    11/8/2011 CULTURE, MISCELLANEOUS

    11/8/2011 ASO (ANTI-STREPTOLYSIN O) TITER

    11/8/2011 DNASE B ANTIBODY

    11/8/2011 CBC (COMPLETE BLOOD COUNT) WITHOUT DIFFERENTIAL

    11/8/2011 WHITE BLOOD CELL DIFFERENTIAL, AUTOMATED

     

     

    Thanks for sharing if you do.

  5. I have has the strep test (ASO) and it was slightly elevated at 284 few weeks ago we did it again 2 days ago and its at 245 which is considered normal now I have had him on antibiotics and a patch. But he is still doing it. I am in contact with a neurologist and they ran a bunch of tests his FERRITIN just came in low. Anyone has had this happen to them? I looked up online says that it means he is low on Iron. Could this all be because of low iron? Been feeding him all kids of food with iron today and will do that few days see if anything changes.

  6. the links did not seem to work ( for me anyway). your description sounds similar to my child's movements. They were called chorea.

     

    Videotaping is a good idea! There have been several times when either for our purposes, (to compare changes in movements) or for doctors (whether for her diagnosis or for their research) have wanted to see video.

    Keeping a written timeline of symptoms/medications/changes/etc is also extremely helpful. You think you will never forget, but as things pile on-- you will!

     

     

    do you by any chance have a video of your childs movements you would be willing to share with me so I can see if they are similar?

  7. hi everyone I fixed the links and researched the Sydenham's Chorea the description sounds it could be it but the videos I am finding have kids that have it very different then his. His are like spassems. The videos show continues flow of movement his stop and go over and over again and sometimes its like 3 or 5 times in a row and its short twitches multiple times in a row. I hope video works its so hard describing this.

  8. Normally I would not video tape my son but I am desperate to help him here is 2 clips of what he is doing these are the small tics they get worse through out the day and they are now starting to happen multiple times in a row I noticed...

     

     

     

    I can get a good video of the entire body one but its mostly when he walks

     

     

    please help me find the answer to what I can do to help him he says it hurts him and he has bruzed toes and refuses to wear shoes because it hurts his feet when he twearls his toes. he does this over and over again all day sometimes he get 5-10 min break but it keeps coming back.

     

    I searched the Sydenham's Chorea on you tube and his doe snot seem that extreme as that one is.

  9. normally I would not video tape my son but I am desperate to help him here is 2 clips of what he is doing these are the small tics they get worse through out hte day and they are now starting to happen multiple times in a row I noticed...

     

    Clip 1

     

     

     

    Clip 2 further view of him

     

     

     

    I can get a good video of the entire body one but its mostly when he walks

     

     

    please help me find the answer to what I can do to help him he says it hurts him and he has bruzed toes and refuses to wear shoes because it hurts his feet when he twearls his toes. he does this over and over again all day sometimes he get 5-10 min break but it keeps coming back.

  10. Thank you for all the responses I have been bussy calling and emailing my Dr. I can not find a specialist on Pandas in my area that will take me as a new patient. But my current dr. which one is a neurologist and the other is infectious diseases dr and very open minded to PANDAS and are researching it with me and are open to any reasonable treatment that wont harm my son. We are going in for lots of blood work today thank u for the recommendation to the the 2nd round of strep tests. Goof idea.

  11. Hi

     

    Recently we had my son tested for Pandas we did the trot culture which was negative , the ASO (ANTI-STREPTOLYSIN O) TITER test was 284 which is slightly elevated, DNASE B ANTIBODY was 194 which they said was normal. My son has severe tics he twitches all the time he is telling me it hurts and I am searching for help for him. I convinced my dr to try the antibiotics so he is on amoxicyln for stret and as of now been on it 7 days. His episodes are severe and he cries to me to make it stop. Desperetly I asked what else we can do and we re given clonidine patch which has been on for 2 days. He is still not better at all it even seems worse. What other tests can I be asking for to be done? Please help if you have any clue as to what I can do next for him.

     

    What tests do I need to request to see if this is Pitand?

     

    thanks :-(

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