thereishope

I wonder how his lifestyle has changed since the diagnosis of PANDAS. What supplements/vitamins does he take? Have they tried to rid themselves of enviornmental factors that may have helped aid in the surfacing of PANDAS in the first place? I'm sure we all have questions that we would like answered. Perhaps someone can compile questions and email her via her website. She does respond to those emails.

I had that too. Target is a good place for getting liquid meds filled. I love thier syringe. If you need to, ask them if you can see it before you switch pharmacies and they'll explain how it works. You can control dispensing it more and I think it's easier to measure. Anway, when it was the antibiotic, we agreed with my son it would half and half. We'd squirt half into his mouth and then he was ready for the second half, he'd tell us. Otherwise, I think it was too much in his throat at once. When it was the steroid, he hated the taste even more. My husband held him down while I squirted a little at a time by his cheek. That way it would be harder for him to spit out and I had more chances of getting something in him. When he was at his worst, I think I even held him tilted back a little for each squirt and waited for the gulp of swallowing it. I remember sitting there crying wondering how the heck he was going to get better if he didn't take his meds. Over time, he became more complaint and the issue eventually vanished.

No, I haven't contacted the Ohio School of Med yet. I will look into them tonight and contact them. I don't mind contacting various places, getting their stance on PANDAS, and trying to educate them more. To my suprise, I've had a lot of positive feedback so far. btw...Did you see how the AARDA fb group posted a link to the you tube video? And they found it on their own! I contacted them a few months ago giving them info on PANDAS. Off topic, we also have a local free parents magazine for the tri-state, I want to conatct them for at least a blurb in their mag. I can see them being interested in the disorder. My brother in law is a surgeon. He just finished his fellowship last year. He had never heard of PANDAS prior to my son, but then, he is not in pediatrics, psychology, neurology, etc. What does he do? Oh, yeah, I think it's bariatric. I know a few more in the med field (specifically pediatrics) and they haven't had good leads. I was in contact with Beth Maloney too and she has yet to find anyone in Ohio.

I live in Cincinnati. I'm still exploring a few more options. All hope is not lost yet.

The reason I cannot get a prophylactic antibiotic around here is because the pediatric neurologist that everyone turns to to ask his opinion about proph antibiotics and PANDAS, is one of the people who I think criticized that study.

My son had an eating probelm that filtered into school. That's when I was thankful it was just half day preschool! When he was finally willing to bring his lunch tote again, he made his lunch. It was the same thing everyday. At first he'd only eat an applesauce, then he graduated to cream cheese and jelly roll ups and an applesauce. How old is you son? Is he young enough that you can try to have a silly conversation with him about things bees might hate. And that can lead to things he might be willing to take. I have a fear of bees and I cannot eat outside. I feel for him. I don't know if this is an option, but are you allowed to visit them at lunchtime? My kids' elementary school allows parents to visit and eat lunch with their child. If that's a posibility, perhaps that might help the situation. Would a movie like "Bee Movie" make him more scared or show bees in a more funny light?

I change them every 3 months unless strep or some illness hits the house. I try to make sure the brushes do not touch each other. My PANDAS son conveniently got a cover with his brush so his is totally separate from the rest. I keep meaning to gte separate kids' toothpaste for my kids, but keep forgetting. If your kids like kid tooth brushes, they usually have some licensed ones at the dollar store. Much cheaper than Taregt or Walmart. I've seen Spiderman, Care Bear and more.

He responded. He was very polite. Provided me with the NIMH link to PANDAS which I've read countless times over the past year. For those who were still considering emailing him, I think it is best not to.

Paul Grant returned my email. He wants to review the link. I am waiting for another response. I was polite in my original email and just cited how son's history and the obvious strep/PANDAS connection. I told him I would be happpy to correct any misundertsanding PANDAS parents have if he would like me to do so explain his stance clearly.

I believe that is his email and you just add @aol.com. I have aol but haven't looked a profile up in such a long time. I'll mess around and see if I can remember. It used to be if you have aol you have access to other aol users info. Don't know if it's still the case.

Will do!

Just so you know AOL comments have always been like that regardless of topic. You need to ignore them. I think most peole who click on the topic on AOL know not to take the comments seriously. Read the article and go on....

My son had slight setbacks (not full fledge PANDAS) when he had a cold and allergies. I have not come across a setback just from being around a virus. I know some parents on this forum have said their PANDAS child has a flare up when they are just exposed to strep and not directly infected.

Here's a link to the article.... http://www.aolhealth.com/health/caregiver-...ulsive-disorder

Thanks for looking that up!

With fall weather approaching, it will soon be the time when I pull out the humidifiers for the bedroom. My PANDAS son usually really needs one because he lips get so chapped overnight. But, I started thinking about it and are humidifiers actually a breeding place for strep? A side note is that my 2 sons share a bedroom. If a child has strep, would that bacteria get reciruculated into the air by going through the fan of the humidifer? Even if it does, would it cause any greater risk at infection when compared to just breathing the same air as an infected person.Again, my concern over this is because of the shared bedroom. Also, would I need to change the humifier filter every time one is sick? I guess this question can spiral into filters in the home heating system. Should those get replaced after illness too?

I hate the peds' office. There are times when I feel maybe he needs to go but I need to weigh if he'll be exposed to something. As a reminder, adults need to request cultures too. My husband's rapid came back negative. He demanded a culture (that they did not want to do) and that came back +. Also simple things like cleaning stuffed animals they sleep with is important.

I am very careful how I share this part of history w/ doctors. If I share it at all. Suicide and attempts of suicide are on my side of the family. In the middle of it, I didn't want anyone to take him away. In hindsight, I don't want them to say I didn't protect him.

My newly turned 6 year old boy is, but I think it's a 6 year old boy thing. His cousin, same age, is the same. I have to hear about skeletons, gravestones,etc all the time. Things he should be scared of he isn't. He built a cemetary out bricks and little people the other day. The little people were dead and buried. There is a chance it's not PANDAS. For some kids, the cute to scary switch happens very fast, even w/o OCD lurking in them

At times, my son would hit himself in the head. Once he also opened the hamper, put his arm down and closed the lid. He wanted to make it look like he was pushing hard onit to injure himself, but secretly I saw he was really closing it all the way. There were times he threatened to open the windows and jump. He also threatened to jump off the stairs. When he started with those threats, I was very honest with him and told him about reality of death. You don't come back, no one really knows what it's like. You don't jump then just get get up again like they do in cartoons. I also told him if he didn't die, it would be painful and he have to stay in the hospital. Thank God I might have gotten through to him because he never followed through. Sometimes, I wasn't sure if he was just trying to see my reaction so I wouldn't always run after him but secretly watch to see what he was doing, just to make sure he was safe. I did hide the steak knives just in case. One of the hardest days was hiding the steak knives from a 5 year old to make sure they don't use it on you or themself. He never threatened that, but my fear was there. But on the bright side, he hasn't done any of the above in quite awhile and it did not resurface with his last PANDAS episode.

I need to cut/paste your "to do " list for new people and save it on my computer. There seems to be more every week. I imagine the more "Saving Sammy" gets publicity, the more will inquire. Also,Beth Maloney is going ot put together a database of doctors too. She said she's gotten more than 400 emails, a handful including names of docs that have helped. I told her to talk to pandas network since they are doing the same. She doesn't have time to that now but said she will be happy share her info with them once it's compiled.

But you see improvement with IVIG, right? Even if it doesn't last, it does help for a certain amount of time? Do you see any improvement going on simultaneously with the setback (if that makes sense). I saw that with my son's second PANDAS episode. It was bizzare. I remember you saying you have a dog. Have you tested it? I think you said your girls occassionally dip into the dog food,right? Or was that someone else who said that. We need bios posted on each person in a single thread. My memory isn't as good as it use to be. I think dealing with PANDAS killed some of MY brain cells. And I'm serious about that.

I live in Ohio so I have no suggestions for doctors. I'm sorry. But as you being your search (and I'm sure more will post here soon), start by making an appt with your pediatrician and rule out a possible strep infection. Ask for a rapid AND culture. There is a chance your child has PANDAS and you will get a negative result so don't rule it out just because of that. But your initial need/request of an antibiotic will be much eaiser if it does come up positive. If you have a ped that won't do one just because you request it, fib and say your child was exposed to strep and has been complaining of a sore throat.

If the tooth was abscessed could the infection have entered the bloodstream? What pain meds did the dentist put him on?

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