browneyesmom

Actually, that is who I am working with... someone who works with him, who is working on the study he is directing at Yale. I understand he is unavailable right now, but will be back early next week, so I am hoping that will help. Thanks for the mention though... I would have wanted to know if someone had not already told me - you guys are AWESOME here - thank you so very much for all the information and support!!!

I have to tell you that the brain inflammation has me really concerned in all this and I want it arrested before it does any long-term damage. I did start her on ibuprofen and I am communicating with someone else who may be able to help me. Her handwriting has not been so great and before I knew about PANDAS, I would have her re-write things, but I decided to let that go for the moment due to the severity of the other issues. When I met with her counselor on Tuesday, she said that she does not see the repetitive compulsive behaviors, so she questions if she really has PANDAS. Sigh... ok... fine... if it is not PANDAS, I don't want to treat for the wrong thing, but *something* is wrong with my daughter. I did inquire if it is possible to have PANDAS and not have the compulsions of OCD, but have so many of the other symptoms, but she said she does not know as she is not that familiar with it.

I suppose you meant this in part, as something said in jest... but you are seriously onto something here. If the news media were to start reporting on this, it would be enormously helpful! What is Dr. Sanjay Gupta up to these days? I just sent an email to CNN asking them to ask him to consider investigating and reporting on this. I hope it goes somewhere... if anyone wants to follow up and send more emails to CNN on this, please be my guest! The more we can increase awareness, the more it may help! What a great idea, Pat!!!

Yes, I'm aware of the IVIG and plasmpheresis. I'm hoping it doesn't come to that for her, but I am certainly thankful that research is continuing in this area. It so happens that she gets migraines and has been on 10 mg of Prozac (Fluoxetine) for about 10 months now. I read that is often what is suggested in PANDAS cases, so I'm hoping it will have some + effect, although I feel like I don't know much of anything at the moment, having only just learned the condition existed on Friday. I'm learning all I can as quickly as possible so I can so whatever I can to help her as this has been such a huge struggle for her, both at school and at home. So many ideas have crossed my mind... homeschooling is one of them; however her dad and I are divorced (I am remarried, he is not) and at the moment, he does not believe she has PANDAS at all. His understanding is that the doc said he does NOT think she has it, while I understood he thinks she might have it. When I called to confirm today, I was told it is not definitive either way, but he thinks it is a possibility she might have it and he offered to write a note for school if that would help. I think it is very unlikely that her father would agree to homebound schooling right now, although I do see some benefits to it for the short-term. She has been having a great deal of separation anxiety as well as anxiety about attending school, which is very unusual for her. How has your son done with homebound instruction? Do you think that has been the best option for him? Are there other options I might consider? Should I consider a neurologist for her, rather than a pediatrician... we have an excellent group in town... or should she be seeing a psychiatrist for this? Exactly WHO makes the diagnosis of PANDAS? What specialist do we need to see to find out if she has this or not and get her the help she needs? Thanks so much!!

We live in southeastern Virginia. Is a counselor able to diagnose PANDAS or must an MD diagnose it? She has been seeing a LCSW since beginning of August and I am meeting with her tomorrow alone to discuss this, so I am wondering if she might be able to help us here. I am just reaching out anywhere and everywhere I can right now... MD, counselor, school, etc. I just called to check what antibiotic she took for the strep/scarlet fever... it was Omnicef. I don't recall reading in any of the literature about that being used to treat PANDAS, but we did not suspect that at the time. You guys are probably going to think I am nuts, but we had the dog tested on Saturday to be sure she is not a carrier. Other than my daughter, my husband and I are the only other two in the household. It may sound crazy, but sometimes, pets can be strep carriers also so I want to rule out that possibility. Thanks for the Ibuprofen and Omegas tip... those both make sense to me. Where do you find information about how much of the Omegas to give her? Did her MD provide that? I would not want to overdo as I know it can cause bleeding risk. Thanks! I am an RN, I might be able to find it in one of my drug guides, so I will check there as well. I just changed her toothbrush and toothpaste (NO ONE will share her watermelon toothpaste - lol) and have a ready supply for future needs. I am actually starting to suspect that she may have had this since around June of last year as she had a night-time bedwetting incident at that time, which she had never had since toddler-hood. She has had one or two more since then, as well as some during the day, although not many. Is it possible for them to have symptoms that change? Certainly nothing has been as severe as this past month, but there have been definite changes since late spring/early summer of 2008.... those were more inattentiveness and refusal to eat, convinced that she was "fat"... her BMI at the time was actually below normal healthy weight, so I was getting a bit concerned. She has since put on some weight and is at a good weight for her growth curve now, so I think we are past that, but she has retained a lot of the negative thoughts and the defiance has exploded. Thanks for your input; I have so much to learn.

Oh, gosh... to flat out not believe her at all is a huge step for me. This child has been so easy and very trustworthy up to this point. She is actually the one who has been bullied in the past. I do realize that there is that possibility now because of the current situation as I have seen some rage-like tantrums at home, so I'm not saying that I believe her no matter what at the moment and I certainly realize that her perceptions are a bit off. Further... I hadn't mentioned this yet, but I'm an RN, so I really do recognize and realize that things are really not right in her brain right now. I realize she is a very sick little girl at this point... I'm just saying that it is heart-wrenching for me that it has come to this and I so wish there were something I could do to fix this for her... it was so much easier when I could just wrap my arms around her and make everything better, you know? Ok, sorry, having a moment here... it's just been really challenging and it kills me seeing her struggle with this and not being able to help and to be honest, I really miss her and have no idea if that 'her' will ever return, so I am accepting and loving my now, special needs daughter, but my heart still breaks and worries for her, if that makes sense. Her behavior is so very much like my daughter Gaby's was last year when she first started this. Since then her symptoms have changed and she has gotten better, than worse again, then better. Don't believe your daughter when she says other kids are starting trouble or that the teacher is mad at her about something. My daughter used to be completely convinced that her twin was touching her food and making it taste bad so she wouldn't eat. She also said that her twin was being mean to her. She was so convincing that if you weren't right there and saw that it wasn't true, you would definitely believe her. Your daughter believes whatever it is that she is saying, but it most likely is not true.

She is currently taking Amoxicillin, which I have read is also indicated for PANDAS, which I assume is why he chose that one. If she is not starting to improve at the end of this round of meds, I will probably ask that she be re-tested for strep as I also read in my research this weekend that is advised. There was an incident with another girl today at school, in which my daughter says the teacher got mad at her when the girl "told" the teacher. I'm not really sure what to believe at this point... if the other child was instigating something or if my daughter was having one of her tantrum-type situations at that time. My daughter was near tears as soon as she saw me after school so I brought her back in there and we spoke with the guidance counselor, who will talk with the girls and the teacher tomorrow. Oh, boy... these things have never happened with her before... gosh, it's a lot of work and I know it's a lot of confusion for her, bless her heart.

My 9 yo daughter has been like a different child for about the last month. She had strep/scarlet fever about 3.5 weeks ago, then tested + for strep again on Friday. He said that she *might* have PANDAS. I was trying to convey to her pediatrician how different she has become... she has always been one of the top students in her class, she's in an advanced math class, a gifted reading class and generally is an A, occasionally B student. Suddenly, she is struggling in school to the point that she is having trouble with simple subtraction, forget multiplication! Also, putting words in alphabetical order, she insists is soooo hard... she's been reading about 3-4 grade levels above her grade for about 3 years, has a very advanced vocabulary and has always been an excellent speller. Suddenly, it's all in question. She's also become very defiant at home. I'll tell her to do something and she will cross her arms and say, "No!" and she is having these tantrums now that I've never before seen with her. She's had maybe 2-3 tantrums in her entire life before... now, she's having sometimes that many in one evening, with kicking and saying that she hates me and I hate her. I've never seen her like this. She seems to have to go potty almost all the time, no UTI, we checked that. Occasionally, during the day, she will shake her head, hands and legs... says she feels like she needs to shake them. She's also been having trouble with focusing/attentiveness in class this year, as well as keeping her things organized... so much so that I was having her evaluated for ADD. I know something is very wrong with her. I've been reading about PANDAS and it seems to make sense, but her MD said it is not definitive one way or the other, so I'm not sure if I will be able to get support for her based on that. She is also seeing a counselor and I have an appointment for me to see her alone tomorrow before my daughter's regular appointment later in the week so we can discuss all this as I want to know how on earth I can best support my child. She is really struggling with school and I am uncertain how to help her. Homework takes literally hours every night and she is not always completing all of it. There are nightly battles and she is so frustrated, anxious, worrying about so many things... Getting her to school in the mornings is a whole other battle. I've decided to start having her sleep in the clothes she will wear the next day. This morning, she sat on the potty and refused to stand; grabbed the seat and would not let go. I finally got her through that and we got her clothes, then she scooted under the covers, grabbed the comforter and would not let go... said she had to go to sleep. I wound up dressing her. She will sometimes refuse to eat and she has hypoglycemia so that is not an option. I emailed the nurse, her teacher and the guidance counselor about that one to see if I can bring her to school to eat so she has some transition time there as she also wants me to stay in school with her the whole day lately. I could also walk her to class, which seems to help a bit... or maybe she is just too embarrassed to make a scene in front of her classmates, I'm not sure which, but at least she is in the door by then. Can anyone offer me any suggestions? We are all completely exhausted and drained over here... her included... which, as far as I can tell, only exacerbates her condition, but she's having trouble sleeping at night also. Sorry this is so long... Thanks!!