Guest guest Report post Posted March 15, 2001 i know what you mean im in UIHC with nathan for an inpatient stay, and were suppose to get upt to 10inches of snow,errrr, firts day of spring is here soon where's our sunshine?shawna.h > >Reply-To: >To: < > >Subject: Re: Re: Donna >Date: Wed, 14 Mar 2001 19:26:29 -0500 > >man...we need some of that sunny warm weather here too! Nick's face is >chapped all winter no matter what and how often we put stuff on it and his >nose is so yucky...one sneeze and he needs half a box of kleenex...have >spent a fortune on kleenex this winter. the upside is that Nick has learned >to throw tissues in the garbage! > > > > Re: Re: Donna > >Date: Tue, 13 Mar 2001 19:57:26 -0500 > > > > > > " Poor Maddie!!! Her little face is all chapped and red and her nose >is > > running constantly. I had to pull over three times to wipe her > > nose.......she just blows when it gets full; who needs a > >tissue.....LOLOL " > > > > Donna, > > > > Maybe the trip is just what Maddie needs. has chronic sinus > >problems and his nose has been crusty and running since January. We do > >everything imaginable... he has had 3 sinus surgeries, tonsils, adenoids, > >constant antibiotocs, both oral and nasal spray. But we just got back >from > >a four day mini vacation at one of the Disney resorts and after 4 days > >baking in the sun and swimming in the pools and playing in the sand, he > >looks like a different person. His face was soooo broken out and >chapped, > >and now his skin is beautiful and the puffiness is gone. Ironically, we > >live 30 minutes from the Mouse, but this was my first vacation with the > >boys as a single mom and I didn't want to venture too far. We really had >a > >great time. I hope things go well for you. If you need anything, let me > >know. > > > > Connie Mom to (7), and Austin(5), (5)DS-ASD and (5). > > > > > > PS When I drive to school in the morning and afternoon, I > >sometimes try to get " red lights " so I can unbuckle and reach in the back > >to wipe his nose. LOL!!! > > > > > > > > > > > > > > > > http://www.onelist.com/community/ > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 27, 2012 Donna:Thanks for the additional information. This was probably two or three years ago so I don't remember all the details with Tony only that he was acting so weird. He did not have the extreme OCD behaviors before or after. But it was these behaviors that made me ask for the strep test. Maybe PANDAS is on a continuum like so much other stuff! His tics are worse but we have been attributing that to his turning 13. I tried to get him in to see a psychiatrist to talk about Tourette's but UW Health is no longer accepting new Medicaid patients. They take down your information and if a psychiatrist is interested in you or your kid then they will see you but it is no longer an expectation that we can get a psychiatrist. This is how life is changing in our state. Not good for kiddos like ours!Thanks again for the info.Lori Hey Lori, Yes, I came across PANDAS immediately and mentioned that to Dr. Lynch also. While Maddie already has OCD, other than obsessing with the face rash, she didn't have the other symptoms. And once we got rid of the face rash, that went away. From what I read, treatment for PANDAS is the same thing Maddie already receives. She's on prozac for the OCD and also gets specialized behavioral therapy and is now on antibiotics. So maybe it's the PANDAS, but we wouldn't do anything different. I have read that some people have done blood transfusions, but that is pretty extreme and not something I am comfortable with at this time. Maddie will stay on the antibiotic for at least a year, with blood tests every 3 months. If bloodwork indicates the need, she'll stay on meds longer. Lori, I don't know that having strep titers necessarily means he would test positive for strep. Maybe you can look into that, and do a titer test on Tony.It's scary, isn't it?????Hugs,Donna Donna: In your first paragraph I knew where you were going with this. Doctors say that this kind of strep is really rare and I see that you (just as I did when Tony had it) did not mention PANDAS but I think that is what it is. Maybe they explained to you why it wasn't PANDAS. No one used that word with me when Tony had it but I knew enough to request a strep test. When the fast strep test came back negative they said, "see, we told you". But the slow one came back positive and he had it. He wasn't on antibiotics for very long but he still has tics and I often wonder if I shouldn't have him retested. He was very OCD during this period but seemingly healthy. I applaud medical science for what it can do but remain frustrated by what it cannot do yet. Lori Mom to Isaac 15 and Tony 13 Quote Share this post Link to post Share on other sites
