my sunshine615

We have been seeing Dr. Chugani out of Detriot, and he is wonderful. He does not drag his feet by no means. Last week he had a PK PET Scan, and LB done on her. At our first appt he was thinking steroids, until he got the test results, and he taold me if this was my child I would have her in IVIG treatments ASAP. Now here we are doing the first treatment tomorrow, and second on Saturday. They said it will take about 4 to 5 hours each. I am so worried about this though. It is very scary to me. Can any of you with children that have had this done please let me know what to expect, and how did your child do through it, and their outcomes. Greatly appreciated!!!

Night # 50 and its an all nighter again. At the beginning the earliest she would fall asleep was 2:30-3am, some nights was after 4am. Then the neurologist started her on CLONIDINE HLC 0.1 MG on 7-17, half a pill at bedtime for 7 days then half at AM then half at bedtime. I give it to her at 10 and she would be asleep half hour, 45 minutes after. There was a couple times she woke up around 3am just as I was finishing up late night PANDAS research, and was up until 8-9am, and I was up with her, not a bit of sleep all night. Last night it was about 1am she fell asleep, and here we are tonight and its 2:48am, and she doesn't want anything to do with sleep. We were in bed watching a movie and she said she is ready to get up. I don't know what to do about this. Before this med it was late, late nights and early mornings (very little sleep). Not good for anyone in the house. I just wish this would all dissapear as fast as it came, but I know thats not gonna happen so what do I do? We are in the works to see a PANDAS doctor in Michigan (Dr. Harry Chugani) on August 15th, I pray for some good things to start happening. I want my little girl back. I PRAY, I PRAY! Any advice PLEASE!

Thank You, I have read some articles about Dr. B and really want to get her to him but it sounds like it will surely be months after reading some of the other posts. So in the mean timeI would like to check into some of these other specialists but am not sure who they are. I have a lot of Docs names but want to know who the top specialists are. would you let me know who others are if you know. Thank you so much!

Hi, Where do I find info on these specialists? I want to get her on some waiting lists as I was advised by many parents, but am not sure whos who. I live in Northwest Ohio, but I want the names of all of them because we will go as far as we need to go for this. Thank you all so so much!

My name is Mary, on June 10th my 5yr old daughter began this crazy eye rolling. It was so fast and constant. The way I explain it is that it looks like she would have no muscles and she was bobbing her head all over causing her eyes to roll side to side and up and down. Later that night she only got worse with a blank stare, and crying. Took her to the ER, all they did was a cat scan, that came back fine, and told me it was a tic. Only this was much, much more than just a tic. Next day was even worse with eye rolling, excessive hyperness, straight faced (just mean looking), and very moody. As evening came some of the things she was saying didnt make much sense, and the severity of the eye rolling was back. I tooke her to a different hopsital, and there she began to forget normal everyday things, such as her teachers name, that she was going to be 6yrs old in five days, and the way i had taught her to wash her hands. It was like my little girl was not there. We were transported to a Childrens Hospital, and there for four days. They did many tests on her, and she had a STREP INFECTION. It was then that the neurologist and another doctor began to tell me about this PANDAS. They sent us home, and put her on 10 days of abx (Cefdinir 250mg). It is now a month and a half later, and it has been nothing but a rollercoaster. Riley now has the worst tantrums/rages that I have ever seen, and they last for hours. We just expierienced the depression part of this two nights ago from 2:30am till 7:00am. The many other symptoms she has is crazy mood swings, sensitive hearing, spitting, sceaming, blank stare, clingyness, very, very babyish, eye rolling, episodes of worrying about everything, daily episodes of babyish talk, and extreme loss of appetite. She had seven days after the abx that it was like nothing had ever happened. Then two Thursdays ago it was completly down hill from then on. I have done research, upon research, and I truly believe she needs to be on that abx for a lot longer than 10 days because she is only getting worse as everyday passes by. Our neurologist dosent want to put her back on abx, nor does our family doctor. So what do I do? It is rediculious, she needs to be being cared for by an experienced doc now, and who knows how long this is going to take to find someone to help us! I also have two other children, and it has taken everything out of me to keep or house and family together. As a mom I feel so lost in everything I do. Even normal everyday routine things just dont seem rite. It is killing me inside watching her change from day to day, and I feel so helpless, and like there is no doctors that want to help, or listen to me. I would greatly appreciate any info, advice, or at this point anything from someone else that is going through the same thing so I can hopefully end this feeling of completely being ALONE!