thomasmom

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

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.

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......

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.

Sorry ! somehow I posted this twice

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

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

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

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 !

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 .

HAS NAc helped at all with anyone's tics ? We have had my ds9 on NAC for about 6 weeks with no improvement

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 !