thereishope

Faith, Don't you know the rule about Polish jokes...only Polocks can make them! JUST KIDDING! sorry, I can't resist...........have you heard about the polish carpool?

Polish. Both my side and my husband's. Maybe a little Czech in there too, but not much.

Many doctors don't realize that not everything follows what they have learned in the text books or even in their practices. They need to understand that PANDAS is covering new ground. It is something that does not follow classic definitions or rules. Doctors need to see that they are witnessing new discoveries of the body, brain, and bacteria. As doctors, I wish they would get little excited about being part of it and want to help how the future will diagnosis and treat this disorder. You think that would be something they would be proud of.

Buster, In between your daughters exacerbations, what was the longest lapse in time? From recovery to another exacerbation? If this is at all like an allergic reaction, I think the longer they go w/o exposing themself to the allergen , the subsequent reaction isn't as bad. Back to the peanut allergy reference. My nephew has a peanut allergy. When they first found out, the dr told them to keep him away from all peanuts at all costs because the longer he goes w/o exposure, the more likely subsequent exposures won't be as bad. They did that and he is improving. Allergy tests show he is still allergic, but if he eats a M and M he won't get hives like he used to. So do you think if you can keep your child away from strep or strep exposure for a long period of time, eventually the viral reactions will become more minute? I'm asking because "knock on wood" that seems like it may be the case with my son. I'm only referring to viral triggers, not strep. Those who have posted here with exacerbations after years after remission, are they mostly strep or mostly viral?

How old is your dd? I think your post is intersting. My PANDAS son never did anything like that but my 8 year old non-PANDAS osn had a streak of "waking up" moaning, I want to say screaming but not really screaming, complaining, crying, etc. I would even pull him out of him bed and sit on the coach with him. One turning on the tv. He'd calm down and I 'd put him back in bed. In the morning, he wouldn't remember any of it. For him it was like a phase. He had clustered incidents of it spanning over a week or so then stopped out of no where. It's been months since that happeed. Side note, he used to have nigt terrors as a toddler. He'd go to bed around 8 and have this happen around 10-10:30 pm. Does she remember any of it in the morning?

I think it depends on what your definition of cured is. I think these kids can achieve fully functioning lives and return to their previous selves. Hopefully PANDAS can be a thing in the past and never have it surface again. I would say that the problems that arrise during an exacerbation may be able to be cured, but as for the actual immune disorder...I see it more as remission.

I agree. He doesn't sound like he understands the complexity of strep or the disorder. Where did you stand with your regular ped? If you can it would probably be good if you can go to /speak to an expert. Have you asked your doctor if they would accept the directions from an expert?

I understand stating the steroid burst here as a diagnostic tool. I wasn't saying to use long term steroids for PANDAS but since my son received it early on in antibiotic treatment, even the 5 day burst helped him in recovery. But, I understand what what the steroid is representing on the table. I am nervous having the Cunningham blood drawn listed prior to starting abs listed. If someone read that I don't want them thinking they should hold off on starting antibiotics until they get their kit. If you don't think that would happen, then it's all good with me. I just get nervous someone would interpret it like that.

Yes. If you brush up against him, he'd say you hurt him. He hates being tickled. He says that hurts. He still says that. As for light, ultra sensitive to that as well.He didn't appear to be sensitive to sound. He was also ultra sensitive to hot and cold. Food and bath water.

I'm a little confused. Is this suppose to be the order of steps someone should take following the yes or no? I have another question in regards to the steroid burst. Are you using that only as a diagnostic tool for seeing if the child is a candidate for IVIG? Some have used it as part of their treatment.

I lost you at "Go Vikings". My husband and kids are Packers fans:)

Glad to hear there was improvement and you got a break! About the falling asleep so early. I wouldn't worry at all about that. I actually see that as a positive. His body realizes it needs the rest to heal. Sleep is also the time when the brain process information. When my son has a strep infection, I see a worsening of symptoms until somewhere between days 3 and 5. When I say improvement that can mean he starts to plateau or I see the beginning of the calming down stage. I can't fully explain it, but I think the meltdowns become less frequent, clamer, don't last as long. The OCD and stuff would still be there.Isn't it fabulous that I have to strain my brain to remember! I would have setbacks, bumps in the road, times of plateauing again, and continued improvemnt for the next 2 months or longer. So, is he still on meds?

I think the best diaper cream is that Bordeaux's Butt Paste. I probably misspelled it since I haven't had to use diaper cream in a year. Thank God my youngest potty trianed pretty quick! Anyway, it's not an antibiotic, but that stuff is great. My friend who is a ped said you may be able to clear a carrier state with Augmentin. She said usually docs give Augmentin or Clindamycin.

From what I understand, they had to raise the price of the test because they lost funding and I believe in the past some parents banded together to donate money to cut the cost of the test to parents. That money finally ran out. At least the test is still being done. What would be a good question to ask is if you can deduct it on taxes as a donation or a medical expense. I know it doesn't help with the initial charge, but maybe you can get some of it back?

That sure is a big piece to the puzzle! I hope you scrubbed your hands after diaper changes. My 2 non-PANDAS kids I are not carrriers, since they clear on amoxicillan, but they both do not get symptoms of strep even when they have it. It's like a possible hidden monster that can be lurking waiting to strike your PANDAS child. It is very stressful. Clindamycin tastes awful. When my daughter was a baby she had a stubborn ear infection and I think that's whta they tried to give her. threw up the first dose. Omnicef ended up clearing it up for her. If the strep is on the skin only, would that still make the child a carrier? Has she been given oral abs for it before? I was just having a disussion with a friend who's a ped and she broke down which abs are most pleasing tasting for a young child. I'll try to pull it up later and post it. Is there a topical ab they are giving for it?

Allergies is a trigger for my son. The reflooring is probably not a coincidence. I read that carpets have their own ecosystem! It's filled with bacteria and all other kinds of nasty stuff. I think I remember reading that carpet cleaning can sometimes aid in Kawasaki's because of all the bacteria. But I am not the expert on that. SFMom is.

I was asking because I recently read the are doing a study to see if pregesterone would help with brain injuries because they think it would take down swelling on the brain. So, then I thought, well, progesterone increases in girls with puberty then once again during pregnancy. I wonder how much it drops post pregnancy. If that would at all play a factor in way you you backslid afterwards. If the increase in progesterone took down more inflammation then the drop was a shock and swelling reoccurred. Just thinking out loud.

If you still see improvement with the rages that's good. It's would be wonderful if everything improved at once and went away quickly but it's like peeling an artichoke. There's so many layers. I still saw new things creep up as he shed other ones. Some backsliding is expected but needs to monitored closely. There's a line between bumps in the road and red flags that the med isn't working. As for the cut on the tongue, keep an eye on that. To be honest, that would worry the heck out of me. Please continue to update us. I am particularly intersted in this antibiotic due to the study in which they are using it and I think docs would be rather willing to give it. I think it is a common stepping stone when amox doesn't work. ps. My son acted like a dog.

As a child I was also sensitive to sounds. I couldn't go to the movies since the Dolby sound pierced my ears. I also heard the lights in the malls and department stores. It was so high pitched it was like nails on a chalk board to me. No else had this problem. I also had many teeth issues too. So, Kay, during pregnancy, things seemed to level out? Another thing that is intersting is my first child was premature and they said, in hindsight, it may have been toxemia. They said when that happen the body sees the baby as a foreign object and tries to find a way to rid the body of it It doesn't happen with subsequent pregnancies with the same man because the body now recognizes it? I can't fully remember the explanation.

Has she been through any testing for food allergies or intolerances? Is there a chance that some foods really might be hurting her, like if she is lactose intolerant? Then that would lead her to think any food will hurt her. I would offer her a snack mid day. If you think she may not want anyone see her eat, just make sure things are within reach and let her know she can eat when she wants. If she could somehow get a snack down, her stomach won't be empty at dinner and there won't be any discomfort from that. Also, if you have an empty stomach, your stomach may actually start to hurt from the sudden intake of food. I don't know what her favorites are, but I know I was always apt to get him he faves in hope of filling his belly. But do take caution that if her fave is a fast food burger, the grease might be getting to her and causing pain. What I am trying to say is to make sure there really isn't pain. Don't automatically dismiss it. Once you are sure it really isn't painful, then you can start brainstorming techniques. Okay, I feel a little odd asking this questions, but are her bowel movements okay? Is she constipated or diarrhea. You could ask her in private without anyone else around what foods she think are okay and won't hurt. I say in private so she won't feel self conscious.

If he has allergies, that may be causing that weird feeling. Also, if the house is even a little dusty, he could be getting little pieces of dust caught in the hairs in his nose. Sounds funny, but that's what it would feel like...like baby powder in your nose. Change his sheets and pillow case too. My ped said dust mites are making it big this year.

My son's hood/hat thing started out simply that is was cold and he had to wear it. It then morphed into OCD. It was hard to get him to overcome it.

Thanks for adding that mcneil link. So it looks like it's just certain lots of pills and chewables, right? Not the liquid?

Food issues are so stressful. I rememebr thinking how would he get better if his body doesn't have the nutrition it needs to fight and heal. Right now, don't limit grazing or snacks. Try to keep them healthy, obviously. I think once they limit their food, after awhile the body gets used to it and that "hunger" mechanism starts to go away. When he was at his worst with eating and he ate nothing, then I even let him junk if he wanted. I just wanted that stomach to remember what it felt like to have food in it. Eventually, as he started doing better with food, obviously I didn't keep letting him eat a donut for breakfast. My son didn't tell me why he didn't eat. I think it was multi faceted. I did notice when he started to eat again, it was very food specific. It took a lot to figure out the puzzle, but once I did, we did take baby steps back to normal , healthy eating. I'll post some brainstorming ideas later when I have more time to type.

Motrin was recently recalled. Here's the link to the story http://news.yahoo.com/s/nm/20100115/us_nm/...hnsonandjohnson For an alternative Ibuprofen, you still have Advil and generic. I know some Targets carry a generic dye free liquid.