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About Egyud

  • Birthday 07/14/1962

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    718 282-1290

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  1. We had the test done for my daughter. It didn't reveal anything that could be of any use right now. There's still so much that is unknown about DNA. I do know that Dr. T is trying to collect info on his patients so he can compare them and try to find out what the common mutations are in PANDAS kids. He has a few things he's found but he needs more kids to get the test done.
  2. My dd had PEX in NYC. Her pediatrician ordered it for her using protocol from Dr. L and Dr. T. That way we didn't have to travel at all. It's ordered from an infusion company and can be performed at any hospital. The hospital staff does not perform the procedure. It doesn't help to ask a hospital if they do PEX because it's an outside company that goes into a hospital with the machine. You local Dr. just has to order it.
  3. She's been checked for Lyme/Bartonella, all neg. No stretch marks or rashes.
  4. Thank you so much for all the comments. Things have been extremely bad with my dd but I have been discussing all the ideas on here with every Dr. I can get hold of. All of this started for her right after pex. She did have IV steroids shortly before the pex. Has anyone ever heard of either steroids or pex causing such a horrible and worsening reaction even a few months after treatment? I shudder to think that I've done something to my poor girl that made things worse for her. I can't find anything to relieve this anxiety for her. She doesn't sleep or eat or drink. I wish that I could just knock her out and let her sleep through all this while I try to find the answer. I can't stand to see any of our kids suffer.
  5. I thought about parasites just because of the nine day cycle. I couldn't think of any human thing that would run on such a cycle so I thought maybe a parasite. We haven't been able to test for them yet. Has your son had plasmapheresis? We are just realizing now that this started after pex. I know people use pex to get rid of this sort of thing but I've never heard of anyone who got it from pex. It's very interesting that your son has this rapid cycle also. Has your son had any cortico steroid treatments? My dd had IV steroids just before she had pex. She had anxiety problems during the treatment. Could they be in creasing now even though the treatment ended months ago?
  6. Thanks very much. I just wrote to both of our doctors. I'll let you know what happens.
  7. Oh I'm so sorry he has to go through this. His cycle sounds like it makes a little more sense than my daughters. Do things change for him with a full moon? The moon doesn't affect my daughter but it has affected other people in the family. Has he been checked for parasites? My daughter has been diagnosed with PANDAS and PITAND but we are still considering that there might be something else at play that we're missing. Dr. T seems to think that there might be a problem with copper. He just hasn't figured it out yet.
  8. Thanks Missmom, That is my daughter. We have thought about hormones. Dr. T has discussed trying birth control pills. Hormones just don't seem to fit into a 9 day cycle so we haven't actually tried any hormone treatments yet. Ruby does have a younger brother who with a T&A and a few years has seemed to "outgrow" PANDAS. The moods are by far her worst symptom right now. I'm just afraid that things are getting worse instead of better.
  9. I know severe bad moods with morbid thoughts is a common symptom among PANDAS/PITAND kids. For the last few months my 19 year old daughter has been going into a bad mood every 9 days. Once the mood hits it stays for four days then it leaves as suddenly as it came. During the bad mood she doesn't sleep. Once it lifts she's very happy but exhausted and needs to rest for a couple of days. That leaves her with only 3 days until the nine day cycle is over and the next bad mood strikes. Has anyone else experienced this kind of exact cycle with mood swings? I'm having her checked for parasites. I just can't figure out what 9 days means to a kid's body.
  10. Wow, you people are amazing. You all sound way beyond me in your understanding. I love the idea of Pepcid. As I read through this at 9:30 pm I dashed out of my house to the pharmacy. I ran back in the door with Pepcid in hand and said to my 17 year old son. Here this may help with some of your allergy complaints. I did not tell him that I hoped it would make him a more tolerable human to be around. I thought I would just let that one go. From all that has been discussed here it seems that this might be a good answer for at least 2 of my 5 kids. We see Dr. T tomorrow so I will ask for a MTHFR test.
  11. I'm happy to read these comments. My 19 year old daughter finished Pex just 1 week ago. She had 5 treatments every other day. She has mainly large upper body twitches. No ocd. We haven't seen any real improvement yet. I was hoping for something right way but i guess I shouldn't get discouraged. The port was in her leg by the way. That seems to be healing nicely.
  12. You can see it here. http://www.hlntv.com/video/2012/01/26/doctors-still-baffled-teen-mystery-illness They didn't give Dr. T much of a chance to say anything.
  13. My 19 year old daughter sometimes wears a soft neck collar (You know, like for whiplash) when head jerking gets bad. Her myoclonic twitches every now and again and sometimes they move to her head and get quite bad. Her doc usually ups her antibiotics until they subside a little. I hope it goes away as quickly as it came on.
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