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thomasmom

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Everything posted by thomasmom

  1. Hello all, it has been a long time since I have visited this forum. We have been very blessed. After 7 years of battling tics and PANDAS with several IVIG doses, Thomas "grew out of it" when he started having signs of oncoming puberty. Many thanks to those on this forum that helped me through one of the darkest periods of my life. Now, I am helping a dear friend whose daughter has been diagnosed with PANDAS primarily with OCD symptoms. She is getting better after PEX and 2 doses of IVIG. The first was in Chicago and the second in our local hospital. Here is the problem. This family was just presented with an outrageous bill. $88,000 for 2 outpatient days of 6 hours each to get IVIG. Our bills never went over 5 K for each of our IVIG treatments (and we were hoppin mad about that !) Has anyone had this experience ? Have you been able to fight it ? I told them at first it was a typo. But the family went through several meetings with the financial department of the hospital who claim it is correct. The bill reads that it cost the hospital 54K just to order the drug. !! How can that be possible ? Wouldn't a hospital make you sign a form that said you were aware of the cost before you had the treatment ? Any advice or insight would be appreciated ! Thank you
  2. Hello everyone ! We have had some ups and downs since we saw Dr.Latimer at the end of January. She put Thomas on Keppra and said that she had had some success with that drug calming some of the tics. Anyone tried it ? Of course I am a bit scared of all of the neuro drugs. This one I think is used for Epileptics.
  3. No...Thomas was actually doing farily well the night we saw her..so she didn't think it was warranted.

  4. If we ever come to see Dr.L again we would love to do this. Right now I am still waiting in the hotel for the office to call me back and tell me when we can come over. Our appointment got canceled yesterday because her office lost power. Trying to work us in today but of course a full schedule and its snowing outside. We already had to cancel our train tickets back home Getting frustrated......
  5. Thank you ! I just got in touch with Dr. L's office manager Andrea. The office and Dr. L's private residence have not power. We are trying to reschedule the appointment either for later on in the day or tomorrow.
  6. Hello All Nice People on the Forum ! I am up here in snow filled Bethesda. Our long awaited appointment with Dr. Latimer was supposed to be today at 1 PM. I just phoned her office and heard on the answering machine that her office was closed today. Does anyone know how to get in contact with her ? It will kill me to not see her after I dragged a sick child here from NC in the horrible weather. Plus made $$$$ for a hotel up here. Please help me. Can you PM me with her email address or phone number. My email address is annerobertson3@yahoo.com Thank you ! Anne
  7. Hello All Nice People on the Forum ! I am up here in snow filled Bethesda. Our long awaited appointment with Dr. Latimer was supposed to be today at 1 PM. I just phoned her office and heard on the answering machine that her office was closed today. Does anyone know how to get in contact with her ? It will kill me to not see her after I dragged a sick child here from NC in the horrible weather. Plus made $$$$ for a hotel up here. Please help me. Can you PM me with her email address or phone number. My email address is annerobertson3@yahoo.com Thank you ! Anne
  8. Hello ! We are going to see Dr. latimer on Wednesday. We have been to see Dr. K twice and got better, but still suffer from bad tics. I thought I would get a second opinion and was thrilled when I could get an appointmet. Can someone tell me what to expect ? How much money do I have to pay her up front ? We have gotten good relief with almost no side effects from the IVIG. SO I don't think we should go through PEX. I do think Thomas needs prophylaxis for Mycoplasm as well as Strep. His last bloodwrok showed that his strep titer had gone down but his mycoplasm was up. (at least judging by this simple titer) Do you think she would add Biaxin to his Augmentin. ? I also wanted to talk with her about using some auotimmune therapy to try and control his flareups. I was planning on taking the train up from Raleigh(Selma) to Union Station and then taking the red line out to Bethesda. The Hyatt says it is right off the red line. Anyone been there ? I was planning on taking a taxi from the hotel to her office. Many thanks for any help ! Anne
  9. I recently traveled with a friend of mine who has RA. She tlaked about her symptoms and told me about her frequent Embrel shots that control them. All i kept thinking was "Wow I wish I could cure my ds9 's tics with a shot that a give at home" ! We have gone the abx and IVIG route like so many here. Has any child gotten treated with drugs that control other autoimmune processes ? Thanks for your input !
  10. Wow I never thought about hypnosis for his tics. Anyone else done hypnosis / Did it work ? I have been thinking about some sort of CBT for tics but I don't know who does this .
  11. HAS NAc helped at all with anyone's tics ? We have had my ds9 on NAC for about 6 weeks with no improvement
  12. Hello everyone... As some of you know, my ds9 is really doing the tic thing after coming down with several viruses since Thanksgiving. No current symptoms, just the vocal tics. This morning I noticed that he has a wart on his finger. That is caused by a virus right ? Can this wart be causing our tics ? I just saw that Oil of Oregano had successfully been used to treat this. Do the tics calm down after this treatment for anyone ? Thanks !
  13. Before I call my pediatrician and talk to her about looking for hidden infections...what tests should I ask for ?
  14. Hi I am a member of the PANDAS forum. I thought I might post this here. I am thinking about getting my child tested for Lyme. Since the Elisa and Western Blot seem fraught with so many uncertainities, cant we go directly to the Lyme urine DNA test. The one that is supposed to be 90 some percent accurate ? Do you send that off to the Ignex lab ? Thanks Anne
  15. Here is my second question - Since the Elisa and Western Blot seem fraught with so many uncertainities, cant we go directly to the Lyme urine DNA test. The one that is supposed to be 90 some percent accurate ? Do you send that off to the Ignex lab ? Thanks
  16. Merry Christmas and Happy New Year to all ! I have 2 questions that I am going to break into two separate posts. We did not have all that great of a Christmas because my one son was throwing up and my other exposed son was ticcing every second....the whole day. Throw in some not so sympathetic relatives and you get the picture. I was really glad when they left. My ds now 10 yesterday (yep Christmas baby) improved on so many of his PANDAS symptoms but is still ticcing despite 2 IVIGs and continuous antibiotics. His tics diminsh very quickly after IVIG but it just doesn't last for a long time. if he gets exposed then bingo back to the tics ! Now that the short lived GI virus is gone, his tics seem better today. So we have come to the conclusion that he either A) has an undetermined infection that the Augmentin just doesn't reach. Althought it doesn't really have to be an infection right ? It can just be an antigen that causes these bad anitbodies to be released. or He just reacts to all the viruses that he comes in contact with on a frequent basis. I am trying to keep him in a normal school. If he has no underlying infection, then I guess we have to put him on a regular IVIG schedule to block all the antibodies. When these good antiboides die off then we have to get some more. ALmost like a PID child. Does anyone else do that ? Don't all of us carry around some bacteria or other anitgens that could be setting off an immune system. These antigens may or may not ever develop into a treatable infection. His strep titers are going down but his Mycoplasma was still slightly elevated but Dr. K still wants to continue on the Augmentin. Does Biaxin treat both strep and Mycoplasm ? Thanks !
  17. Hello MMC - I read your posts because I think our situations are similar and you are just down the road. My ds9 has been battling PANDAS for almost 3 years. We have been on Azith and now Augmentin. He received 2 doses of IVIG with Dr. K in Chicago In May of 08 and Jan 09. Our last does was here in New Bern just 2 months ago. We have long several month periods of remission after each IVIG, but when he gets exposed to something the tics come back. The tics are bad right now, after our whole family was felled by a bad virus several weeks ago. I just don't know where to turn and don't know why his tics keep coming back. All of his immune lab work is normal. His once sky high strep titer is now falling almost ot the normal zone. I have read through all the symptoms of Lyme and there is nothing. He doesn't seem to have any yeast symptoms. He just tics ! If he had tourettes the IVIG wouldn't work right ? who knows. I too I trying to figure out if he has osme underlying infection that we have not addressed that is providing the antibodies that make him tic. What is an LLMD ? a local lme doctor ? Did you say that you knew one in NC ? Who is it and where are they located ? How do you get to be a LLMD ? Many thanks !
  18. Just got back from church listening to muffled vocal tics during the service. These kinds of tics are completely fine with us and easy to live with. Its the loud ones that really disrupt things. Every now and then when Thomas gets excited I think the volume of the vocal tics goes up. Are there any other related factors ? When the "bad antibodies" kick up in reaction to a virus or strep, thats when you get more tics right ? Anyone have any remedies for "turning down the volume" ? Thanks I know I am dreaming here.....is there any sort of fabric that can serve as a sound absorber ?
  19. Hey Everyone - Once again I am in the panic stage. My ds9 was exposed to a strong virus and is now ticcing off the charts. He is no longer experiencing any "normal" virus symptoms just the loud (bad word) vocal tics !! He has in th epast had 3 infusions of IVIG. Each one has provided almost instant relief of his tics. (really wild to see actually....like a blanket of calm goes over him from head to toe. Dr. K pointed that out to me) This past infusion only gave us 2 months of relief. Of course if he hadn't gotten exposed then it may have gone on longer. I am blessed with an apointment with Dr. L at the end of January. (seems long away) I know I will discuss the benefits on PEX for tics with her. What experiences have you guys had ? PEX sounds brutal with the femoral line and the ICU stay. Is that continuous time in the ICU or do you get to go back to the hotel ? It sounds like some peope haven't gotten relief that lasts any longer than the IVIG. AM I reading that right ? In simple terms it seems like the IVIG blocks the bad antibodies and PEX actually removes them. When he gets exposed to a virus does he just make more antibodies ? Sorry I am freaking out a bit. Right before the intolerable relatives get here. One of the hardest things about PANDAS is that he can be good one day and have bad symptoms the next. I am always on edge. Thanks for listening.
  20. Hello everyone. Once again I am on this website looking for answers and support. My ds9 has started ticcing again after exposure to a fairly virulent virus he got exposed to at school (and brought home to me unfortunately) Titers were drawn-no change, Ibuprofen doesn't work this time. So we started on some steroids today No change as of yet. (me too on the steroids, I just can't shake this virus) Thomas remains on same prophylactic dose of Augmentin. The continuous tics are driving me crazy. I came across some information about Hizentra tonight. I read on the drug info website that is is used for Primary Imunnodeficiency Disease as is IVIG. My ds gets great releif from IVIG it just doesn't last that long (2 months this time) This Hizentra seems to be given weekly over a shorter infusion. Anyone tried it ? Does it work for PANDAS kids ? Is it expensive ? Do you have to get it in a medical facility ? Thanks for any info !
  21. I am in New Bern NC. There are two families here. We go to a l ocal peds who is very interested in the disorder who has taken the time to talk to Dr. K. My ds9 got his IVIG infusion at our local hospital a few weeks ago and is now doing well. (was really ticcing badly)
  22. No I live in a small town in Eastern North Carolina which makes it even more amazing that I found such a proactive caring ped. I did email her the codes that (I think) Dr. K used when BC covered our IVIG twice before. I hope that works ! I just googled Dr. Swedo and Dr. Grant and found lots of information about him. SOunds like a great guy !
  23. my ped told me to put OTC wart medication on the few bumps Thomas had. They went away !
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