Nearlydoc

Is she on Aderol or Ritalin or a similar drug? These stimulants can really diminish appetite. For 3 years when starting when she first got PANDAs, we could not get our now dd7 past 50 pounds. No one seemed worried. Be persistent and careful in getting help regarding eating issues. Too often health care personel view these problems as an eating disorder and want to go the psychiatric route.

As a twelfth grade teacher and college instructor, I can assure you that you will want this in place as standardized testing becomes. The ACT students take in 7th grade can place them in the Duke/Tip program providing cool summer learning opportunities. Getting a 504 or IEP in place once you hit high school is more complicated,because parents often seek them (sometimes without sound basis) for upcoming ACT/ SAT tests. It is essential you do this now. Especially while you seem to have a cooperative school.

My dd 7 sees Benaim as well. I am grateful for her. Our dd went undiagnosed from the age of 3. Last October marks our 1 year anniversary in treatment. The initial diagnosis came from Dr. Greg Hennessien (sp?), our allergist. Currently we are appealling for IVIG w/ Dr. McVicar, neurologist, that was turned down by insurance in the fall. I am sending you a pm with my contact info.

I know there was a thread way back about this, but I was hoping for some updates. We just got our first refusal from Cigna for IVIG ordered by our neurologist. I was wondering if anyone had a successful appeal, and if so, what might have been the key in gaining approval. DD7 has had PANDAS since she was 3. Her case is mild on the PANDAS scale, but the learning challenges are significant. We thought they would say no, but eternally optimistic me was hoping for a "yes."

I wrote a story for my son about having a sister with PANDAS. It has been a hard journey for all of us, but especially for him. She went from adoring him to being really mean and aggressive. I would love to do something more with my text. Thanks EmilyK for the Strep Monster story.

Thanks for all your replies. Children who are asthmatic cannot take the mist, so we would be looking at the live virus. I look forward to hearing more followup from Hopeny. We do not see any of the major PANDAS specialists, so it is good of you to share what their view have been. Does Dr. Swedo have a recommendation one way or another? Again thanks for giving me so much to consider.

It is flu shot time again. DD7 has a mild case of PANDAS and is on zith daily w/ some ibuprofen as needed. She also has ashtma. Should she get a flu shot?

Before we even ran the blood tests, our cool immunologist gave us 20 day supply of cefdinir with permission to up the dose slightly and seemed to be wroking. The abx made such a difference that we then did the blood test and went full time with Cefdinir. Our first clue that dd had PANDAS was the amazing improvement post tonsillectomy along with steroids and abx prescribed by the ENT. There is a list on this cite,pandas resources, and pandas network sites of available helpful physicians by state who believe PANDAS is real and will treat it.

We have Cigna through FedEx, and our ready to try IVIG. The insurance will pay for PEX but not for IVIG. This is so frustrating. We are building a team of specialists to help us make our case. I really appreciate all of you sharing your experiences with this situation. Thanks.

The new zith from Teva seems to be working, but I upped the dosage just a bit to 1.5 tspn per day with great results except now dd7 has a rash. Large flat red spots. They diminished when I went back to 1 tspn a day, but the behavior is much less managable. She had been on cefdinir before with fair results. I have heard that some parent do both antibiotics although my local ped who treats PANDAS would be really hestitant to do this. I welcome your knowledge, insight, and experience. Thanks.

We are on our second week of Teva brand zith. Crackers are the bomb. A saltine turned salt side down can really confuse and busy the pallet. A lick of salt before and a syringe with a cracker to follow is working for us. It is dreadful. I did taste it. We are taking it at night. Would it be better in the am? I started at night just because there was too much medicine drama to start the school day with.

Our daughter is in a pull out exceptional student class in private school. Our hope is that she can eventually join the traditional class. If that happens we will hold her back.Changing schools is a great time to repeat a grade. No one but the administration, the child's teacher and the parents will know. Private schools have alot more flexibiltiy regarding attendance and the law. It would also depend on the school. DD21 went to a private school with strict attendance policies, but some are more willing to be flexible. We do find that the IEP is not followed as attentively as it would be in a public school nor are there additional services. Hope this helps.

One of the most illustrative, helpful things we gave our DS's teachers were writing/drawing samples of "Healthy DS" versus "Exacerbation DS." The lightbulb seemed to literally go on for some of them when they saw his good, fully-legible math work at one period, as compared to the illegible scrawl for the same subject just a few months later. And I think it helped them know that this was not a kid who got "lazy" or "careless" overnight, or who had never mastered penmanship. The visual evidence was pretty irrefutable, and it helped them help us, too, since sometimes they would see the handwriting deterioration before we would see anything at home, and could alert us. I like the idea of samples, but she has never had proficiency let alone mastery of handwriting. I am not sure her samples would make the point. But I do like that idea.

Thanks everyone, I love the video, and even as a teacher, I needed a reminder that what will help your teacher more effectively teach your child is key.

Resources for schools Gen. Resources to present to schools Handout on teaching children with PANDAS I am putting together a packet -- not to0 long, easy to read -- for my child's new teachers. They just don't seem to "get" PANDAS when I explain it. I would love suggestions of items that are teacher friendly, clear and concise. I am starting with a few of my own. I need the best easiest explanation for her condition. Has anyone used either of the PANDAS network letter for the school. Thanks.

See the new comments on the OCD conference a couple of threads back to see some notes regarding Dr. Swedo's comments about allergies. She recommends H1 and H2 treatments. Your comments are good. We are in a similar place. Our dd7 has had PANDAS for 4 years with most of the symptoms but no tics or tourettes, but only started treatment in Feb. We have just switched to Zith which seems to make a difference.

Perhaps the master dr. list needs to also include insurance accepted by the physician. Might save folks lots of time.

We had dd then 6 tonsils out last fall and it helped tremendously with breathing/ sleeping and even some with behavior. This was how we discovered the PANDAS because the behavior on the post op antibiotics was such a marked change in behavior-- took us until December to get a diagnosis. There are lots of articles available about sleep issues and behavior. Our dd had had a tonsilectomy at 3, but the dr. only did a partial tonsilectomy. He is no longer our ENT. The full tonsilectomy with Dr. Klug in Memphis was successful, and her color, mood and even growth improved after surgery. The pathology-- no surprise-- those tonsils were full of strep. She has had PANDAS a long time and is still in recovery after starting meds last Feb. I can't tell you the t/a "fixed pandas" but it did bring her better health. Do you have an ENT you could trust in your area? Could you go see one before putting your 6 yo through the sleep study? Our dentist was also a huge advocate b/c our dd's teeth were effected by her mouth breathing and was actually the one who sent us and a recommendation for t/a to our new ENT. Hope this helps.

Ya'll, we are so grateful for all your input. This forum is such an education. We were thinking about seeing Dr. L. I am sure we will call and see who might take our CIGNA insurance and get an appointment. I have already started adding in ibuprofen with some success. There are really moments Keaton seems nearly normal if that makes sense. Jill -- your comments about education are right on. I have taught for 26 years and know all the limitations. But I also know the dangers of educators who place way too much trust in limited evaluation. I especially appreciate those of you who have shared the stories of young children who have gotten PANDAS. We are so grateful and lookforward to being as helpful for others. Debbie

Dr. Elisa Benaim -- Pediatrician in Memphis, TN http://pedseast.com/doctors -- Dr. Benaim has treated several children with PANDAS and has consulted with specialists. She is most helpful and really loves the children. Dr. Dean Klug-- ENT in Memphis, TN http://www.mid-southent.com/sinus-center/ Dr. Greg Hanessien -- Allergist and Immunologist in http://www.memphisallergist.com/

Cobbie, thanks for the advice. We are in Memphis. Who is the closest PANDAS specialist? Dr. K in Chicago?

Hi Kiera, We are working though Cigna as well. I would appreciate any info you might have. Debbie

Jill, I cannot thank you enough. I needed this. We finally did an IEP etc this fall. Our dd IQ was 97. I teach and looked at these "professionals" and said I know a 97 IQ. That is not my kid. Both sibs are way above avg. We keep fighting. Don't know if we need to see the big time PANDAS docs. Our doc is in touch w/ them. We are working on IVIG approval and finally have a neurologist who will see us. Previously no ped neuro. in Memphis would talk to anyone about PANDAS. I will tell Keaton, my baby w/ PANDAS about your daughter. She loves to know about kids w/ PANDAS and this will be especially encouraging. So much gratitude. Debbie

Thanks everyone. Your responses were so thorough, thoughtful and helpful. We have finally found a way to get azith-- not generic-- here. Our pediatrician is in contact with some of the major pediatricians who treat PANDAS? We are looking at IVIG and finally have a neurologist who is willing to see us. Do we need to go see one of THE PANDAS gurus? What would they do differently?