thereishope

Maybe there's more than one thing going on. And it is normal for a child who has something like the fu to do better than get hit again. That happened w/ 2 of kids last year. Sick for a few days, thought it passed, then...boom...sick again. At this point, I'd start the z pack. Maybe ther'es just too many things the body is fighting. Also, if it is H1N1, you don't want there to be another underlying infection. Have you done a complete disinfection of the house and their things to prevent reinfection? I've been trailing my son w/ disinfectant and doing laundry non stop. Every day, I'm washing his sheets, making sure he puts clean pajamas on, etc. Colleen, my son's fever is gone but is cough is still there too. Hopefully, the school won't send him home. I'm following the rules. He's been fever free for well over 24 hours. He feels completely fine except for that cough. I gave him some decongestant to hopefully loosen up anything that might be there. Granted, it sounds like a dry cough, but just in case. That's the thing w/ stopping H1N1 testing. How are they suppose to know what these kids have? It makes the decision process about school harder.

Have you taken him to the doctor?

My doctor never suggested it, but I take him on my own for follow up tests. During his first episode, I realized that if wasn't erradicated by the antibiotics, he wouldn't get better. When new docs see the negative cultures, they always question why I say it's PANDAS w/ negatives. I have to tell each of them they are follow ups. Look at the positive that preceded each oneThen they have a light bulb momement, "Awwwww. that makes sense". Teaching the docs once again....

Elementary will be done in the evening w/ a parent being present. Middle school and high school will be done during school hours. We still need to give a consent form prior to that date saying if we allow it or not. If they were doing during school hours, I would have pulled them out for the day.

Thanks! I'll email them and see if there is a link to donations that way I can post it in various places easier. Also, it would make it easier for one to make a credit card donation. I'll post what their response is.

My husband has slight OCD, which I think I do too. But the kind of OCD that doesn't affect life. The kind that makes someone appear to be a perfectionist. As for his obsession with Star Wars, Indiana Jones, etc. Well, it's the geeky kind of obsession. Nothing to be concerned about. It's not an OCD obsession.

If my son calls me a magical taking trash can again (from SpongeBob), I think I'm gonna scream! This is a good example of when it's hard to decipher the disorder because it involves children. Their personalities might have also just naurally changed over the course of an episode. You really have to get to know your child all over again. If you do suspect it s PANDAS related, sometimes you have to go with the flow during an episode, but you can attempt to overcome it by tackling it head on like some of my previous suggestions. And I just have to do this... "To infinity and beyond" "Play nice" "It's time to go home" Some of my husband's favorite Toy Story quotes that I still have to hear till this day.

My school just sent home consent forms for giving h1n1 vaccine on school prperty. It is not mandatory, but it still send shivers down my spine. We have a small house, so right now my 8 year old is living in my bedroom. I tell the other kids if they want to talk to him, they can but at the doorway but don't enter the room. Coughs and sneezes can reach up to 6 feet. Luckily, the head of my bed is further than that from the door.

My son's fever broke in the middle of the night! At 4pm, he was above 103 when the Motrin was wearing off, then at 10pm he was 98.4! That technically w/ no meds in his sytem. This morning he is 99.1 no meds. Today, I continue to quarantine him so my 3 year old and 6 year old hopefully don't get it.

I know that Dr Cunnigham's test has helped many people. And I know her research is beneficial to the PANDAS movement. But all that testing and research comes at a price. Does anyone know if there is a way a "regular perosn" can donate to her research? I'm not saying it would be much but even it helped cover some of the cost of running a test for one child, it would be good. With the Holidays approaching, I always put a foundation down on my Christmas list that people can donate to if they want to. She'd be one I would back up. Anyway, I wanted to ask here before I bother Dr Cunningham directly. Thanks.

Even though you are intelligent, full of information, support, and a help to many....you are still a daddy taking care of his little girl. You deserve a break. Enjoy your family and those quiet moments when you sit and look at you daughter and realize what you have all accomplished. I know, I know... I sort of went into retreat for a while -- even with all the data we had, it was hard to go through IVIG. Lots of worries about blood products and all the things we just don't know yet. Those first two weeks post-IVIG were the worst. I really started to worry we had just made things worse. I do think the mini-longitudinal data is really interesting. I realize it is totally anecdotal at this point but still, the shift from 183 to 119 somehow was really comforting. I also want to stress that not everything is back to "normal." There's still a slight verbal tic -- a sort of irregular breathing. There also remains some separation anxiety. It's unclear to me whether these are learned behaviors i.e., now comfortable habits rather than obsessions/compulsions. Hard to say and we'll just have to see. But all the true obsessional items and complex movement/measurement rituals are gone. Wishing everyone on this forum some quiet time, Buster

Well, my oldest went to the dr. He said it might be H1N1, but they aren't testing for it anymore. The rapid for strep came back negative. We're waiting on a culture. Luckily, my PANDAS son is still behaving normal an not acting sick either (except for some very slight snifles). I am keeping them as far away from each other as possible. Which isn't easy sicne they share a room. The ped did say that ther are a lot of kids coming in with viral throat infection that are not strep. There has been a huge increase in patients within this last month.

My son does this to SpongeBob, Ben 10, and more. He's not in a PANDAS episode. It's just him. My husband does the same to Star Wars, Indiana Jones, etc Granted not exactly like my son, but he still quotes things A LOT and I catch him mumbling parts of the movie to himself (my husband). But then, they both did it pre-strep too. Imagine not EVER having a break and having two people like that! But seriously.....Have you tried telling him he can quote the movies all he wants maybe during a certain time slot, but then he has to stop? Or he's only allowed to do one quote every half hour or hour? If you tell him if he doesn't cut back on the quoting, he won't be allowed to watch the movies help? It very well might be a compulsion and you will have to help him cut back. My son wouldn't stop compulsions on his own, I had to hold his hand through the process.

My son also became ultra sensitive to the warmth of food. At times, if it was luke warm, he'd say it was burning hot. Same with bath water. I should add that some PANDAS kids can have altered taste sensations. For my dd it happened post-IVIG as part of turning back the pages. Dd complained that "things that should taste good don't" and "my taste buds aren't working right". Fortunately, this problem passed after a couple of days. I asked Diana P. about this, she said her son had that same symptoms (altered taste sensation) during the worst of his PANDAS.

Have you seen an ENT? My 8 year old has very large tonsils. The ENT admitted they were but has seen larger. He said he's seen ones that are so big that when the child talks it sounds like they have marbles in their throat. Unfortunately, my kids inherited my tonsils. When you touch the outside of our necks, they feel like lumps.Lumps that move as I push on them. My husband's are so tiny. When I look in his throat, I can't even tell where his tonsils are!

My 8 year old has a high fever and cough. I am taking him to the dr today to get a strep test and see if it's H1N1. Both have been in the school. I am so scared of my PANDAS son getting sick! Cough is occassionally a symptom of strep for my kids. Are you upping his meds or taking him to the dr? If his fever isn't going down good enough, you can give Ibruprofen then an hour later Tylenol. It's important to try to keep their temps as normal as possibe.

Well, my son has been through this 3 times so far. Each episode has been different. Each length of time for recovery has varied. But each time I did get eventually get my son back.This last time, it took 5 months to fully get him back. I know that's short compared to others and I know I am lucky. It's normal to think it won't ever change and this is your new life, but you must somehow find that hope and determination to get your child back. I had moments I turned to my husband and said "If needed, we can always do meds (psych meds),right?". So, you're not alone to ever have that thought. Now, I see that they can sometimes make things worse for PANDAS kids, but I was relieved to always feel I had a fallback. There was always something else to try, if needed. Yesterday, I took my son to have his 6 year old pics taken. I was so nervous. Whe nhe had his 5 year old ones done, he was into a PANDAS epsisode. But that day we didn't know what was going on. We didn't know he had an active strep infection. We didn't knw he had PANDAS. We knew he had OCD out of no where. I look at those pics from a year ago and his eyes look so sad and trapped. I was never able to bring myself to show anyone those photos or put it on the wall. Well, yesterday, we walked into the studio and he did awesome. He posed for the camera, let the photographer touch him to guide him and I have pictures with smiles galore. The difference is unbelievable. I say those pics are PANDAS in pictures. You can see what it was doing to him a year ago and how he is now...RECOVERED. They don't look like the same boy. Just try to find the strength.I pray you will soon be writing your success story to someone.

I'm curious, were you really observant of his glands prior to his last strep infection for comparison? For example, my glands (I still have my tonsils) would probably be considered enlarged or look swollen even though they are not infected. That's just how they are. How swollen are they?

Personally, I'd give his body a break and not do it right now. Maybe down the line when you've all had a chance to have peace and has been in good health for awhile, then you approach that idea. My son had his out and I don't regret it since I don't know how many times it will stop him from getting strep. But, I would wait for now if I were you. Who is providing you the script for your antibiotics? Dr K? I ask because if it's the ped, you also don't want them to say your son doesn't need proph antibiotics if his tonsils are out or give you some type of ultimatum...no antibiotics if you don't have surgery. Contemplate if you even want to chance putting that thought in their mind. Meaning it's best to make your own personal decison before approaching it with the doctor.

My son was also border line agorophobic with his last episode. He also had times when he would have bad thoughts while falling asleep. Let's say monsters (but it was others stuff) would get into his head and be mean to him. I sat at his bedside demanding his brain to stop it and telling those bad thoughts to leave him alone. Kind of like when the person with OCD has to talk back to OCD, but I was the one doing the talking for him. I'd have to go into his room maybe 3-7 times doing this, but in a matter of an hour or so, he'd fall asleep. I told him to tell those thoughts to leave him alone. he actually did try, but he'd always say it didn't work he wanted me to do the yelling. When I did that, I warned him I was going to sound a little mean but I was being mean to those thoughts and not to him.

Someone else posted a bit back a post about the strep being resistent to amox. I think it was EAMom. I printed it off to take to the peds' office if he ever gets sick again. http://www.entrepreneur.com/tradejournals/.../169459644.html

My son would have issues when seasons changed and the attire would change. Luckily, this time we're okay. It shows me much of it was PANDAS related. When he was in his last episode he would only wear long sleeves, his spring jacket and his hood up. He would never take that hood off. We eventually graduated to hood off in stores, but wear a baseball hat in stores. Then no hood at all, but always a baseball cap, now he can go back and forth to whatever suits him for the day and he has no problem switching it around. Still, now that fall is here and that hood goes up sometimes, many sad memories coming flooding back. I remember having to explain the to the peds' nurses that it was like his protection. Like a force field for him. Not to force him to take it off. All staff in peds' offices really need to take a class every year about being sensitive to kids and realizing sometimes you need to bend the rules. What worked for us was baby steps.

My son had horrible physical rages. quote name='erica240' date='Oct 4 2009, 06:34 PM' post='40036'] Bronxmom, exactly he doesn't see how it impacts others either. Interesting is that when I am reading here I see a lot of the girls have the phsyical rages and the boys seem to be mouthy and more emotional. I know I am just basing it on what has stood out to me on here. I would have expected to see that the other way around.

That's what I'm trying to figure out. I don't think the surgery is the reason he got strep so fast, but I've wondered if he had a small amount of strep in his tonsil area still then once they did surgery, it was exposed then multiplied. What totally throws off that reasoning for me is that he was 100% back to being himself presurgery. So if strep was still hiding out, he shoudln't have gone back to 100%. Maybe I'm just trying to find reason where there is no reason. I tend to do that. I'm a big overthinker. I know one PANDAS teenager who says when she had her tonsils out, she continued to get + strep tests for months. Maybe she even said a year. Then, suddenly it went away and she hasn't had strep in a couple years. Obviously that's what I'm hoping for. He'll just stop getting it.

It seems like a lot of our kids got strep shortly after t and a surgery. I'm curious how many. My son tested + one month after. As usual, no classic symptoms, just behavioral.