thereishope

I have a question...for the doctors out there who are the naysayers of PANDAS, what do they think is going on with these children who have a sudden onset of OCD, tics, etc, have a + strep test, then get better over time after taking an antibiotic to once again have the sudden onset with a + strep test, etc, etc? Are they claiming it's just OCD that wax and wanes and the + strep is a coincidence? I know not all PANDAS chilldren fit that definition, but I am using those as an example.

Yoplait Thick and Creamy doesn't have it. I don't think Dannon Natural does either. I saw on the Food Network today that strep bacteria is added to sour cream to give it it's taste. Not sure if that's all brands or just the company they featured.

Does her dad want her to go? I hate saying it, but if your father in law knows what has been happening to his grand daughter, he may not want her to go. Can you somehow find out his wishes? As for travelling, cotanct the airline, tell them you have a daughter with a compromised immune system and they may be able to give you some info too.

My son had his first day of kindergarten today. He got is shoes on before asking, wanted to leave for the stop early, got on the bus without any fuss, and ended up having a really good day. We spent the evening playing school as he re-enacted the day. How can this be the same boy I had a few months ago? I am just going to enjoy every smile and cherish seeing him happy. These kids are amazing.

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I left a message with the only DAN! Cincinnati a few days ago. She returned my message today and talked very fast. She said that could do an oral IVIG in her office that does not include an iv. If she isn't happy with those results, she could send my son somewhere to try traditonal IVIG. But, I haven't ever heard of anyone on this forum referring to an oral IVIG.That confused me. It was just a phone call with her so I didn't really press questions. Something else that confused me is that I didn't even call about IVIG. She just started with the info. Today I haev an appt with a developmental pediatrician to see what he has to say. Overall, my son is doing well, but I haevn't had a good relationship with the current peds office. They do nothing. The DAN! did say to try the mainstream route first before going to her sicne she does not take insurance.

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In my opinion,and it's just my opinion, the child will aways have PANDAS. It's just a matter if that trigger is activated. It's just remaining latent and controlled for the time being. You can have a PANDAS child w/ no symptoms at all. They've gotten better, they act "normal", etc. But the moment that trigger is activated again, it will resurface. I've experienced with my son three times now. I say my son's PANDAS episode is over, but he has PANDAS. Now if your son is exposed to his trigger and nothing happens, then please post it all over this board. I'm telling you, if I ever find out my son has a + strep test and his behaviors DON'T act up, I will be sure to let all of you know. That is the only way I will ever see my son as "cured". My ds is by and large very much past his episode. Someone sent me a private note "it sounds like he might not be PANDAS anymore". I haven't had a chance to email them back, but is that really possible in 2 years from ages 3-5?? I didn't think so, though I would SO like to believe it. I also heard the 2nd and 3rd episode can be more intense --- anyone care to share experiences on this? We've only had one major episode, though little "flair ups" that seem attributed to illness. I'm frankly terrified of something more intense than the last one... With regards to the hair (maybe just sharing some things we've done will trigger ideas for others. I'm always looking for creative ways to deal with the lingering issues), my ds still doesn't like to have his hair brushed. He will, however, oddly allow me to use a comb. At the worst of his fear of water/hair issues, washing his hair was a screaming nightmare...but I discovered by accident that he would sit albeit nervous and uncomfortable to allow a hairdresser to wash his hair. Later, I also discovered that leaning him over the tub or the sink with a sprayer and washing his hair was easier because simply being in the shower or bath cause sensory overload while limiting the water to his HEAD was something he could handle without quite the same level of intensity. Made perfect sense and I could have kicked myself for taking so long to figure out something that simple... ;-) Is there a thread on here I haven't found yet with just little everyday "sanity savers" that people have tried? Also - during the time he didn't like to be touched, he would sometimes give me very strict directions on how to rub his arm or his back - it was essentially a DEEP PRESSURE RUB, not light pressure and in the exact same area, not moving around from one limb to the other, one part of his back to the other. The consistent, deep touch was something he found sometimes (not always) more tolerable, even comforting. Robin

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"Also, not sure if this is related, but dd8 ALWAYS has to have a BM when we are waiting for the doctor to come into the room at a doctor's office. What's up with that?!" That might be just nerves. Actually, as a child, I remember always having to use the bathroom very bad while waiting for the doctor. I also remember everyone thinking I was just trying to avoid the appt. It wasn't the case.

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I don't think the chlorine would null and void IVIG. Nor do I think that it would continue to worsen and worsen weeks after swimming. I was trying to say that many have seen a cause and effect factor w/ chlorine and it may be something to avoid or take precaution. I believe some rub magnesium on their children, shower immediately after, etc. I do not know how long the ill effects of chlorine might last. You said that his tics resurfaced a couple weeks ago, even with IVIG. What tests has his doctors done to rule out an existing infection? Like another said, it may be time to tell/ask the doctors to switch antibiotics to something stronger.

I would think if it affects tics, it could affect OCD as well. I'm in some OCD groups that I can ask that question to. Here is the website I got some info from on chloramine. It does suggest using cold water when you bathe and closing the bathroom door so the pollutents don't go throughout the house. http://www.chloramine.org/chloraminefacts.htm I did also just stumble on a filter that uses VitaminC to filter out chlorine and chloramine.This site also sells tablets you can put in your water. Here's that link... http://renewalenterprises.com/shfi.html

Few things....As many will tell you, the chlorine in swimming pools will worsen many kids' tics. As for that long span of time in which he was "tic free", a couple questions would be if he had any major illness that you could recall during that time? I would be curious to know if he specifically had strep in that time frame. There's a chance if he was healthy, the tics would go away with time as the brain had a chance to heal. Some PANDAS children go completely into remission w/ just antibiotics. A great thing in this website is if you look on the bottom, there is a keyword section. You can look up old theads. Example...if you type in chlorine, threads about that will pop up. You can have a field day typing in all the symptoms that pertain to you.

The avoidance of touch happened with my son too. That's one of the things that prompted a sensory profile on him. He esp hated having his head touched. If you touched his head, he'd scream that his hair needed to be flat and would slap his head over and over to get it just right. The thing is he had a buzz cut. There was no way his hair could get messed up. Now I see it was the need for that "just right" feeling. When my in laws would visit, they just wouldn't understand not to pat him on the head, or take it personally that he wouldn't hug them. It always annoyed me. They enter the room, try to hug him, then let out a heavy sigh when he shrugged away. I hated that sigh! But those are the same people who called him Monk. So, that sums it up for you.

I'm sorry, but can you explain the connection to Prevnar? So it's bad our kids got that vaccine? All 3 of mine got it.

Your story has a lot of simillarities to my son. From the separation anxiety and then being okay when you left to the " "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." . Which I NEVER realized might be a tic. I always thought he was "ticless" (if that's a word). What enlightenment. I so happy you shared that part. I look forward to hearing from you more. Welcome to the "club".

Wow. Your story has a lot of simillarities to my son. From the separation anxiety and then being okay when you left to the " "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." . Which I NEVER realized might be a tic. I always thought he was "ticless" (if that's a word). What enlightenment. I so happy you shared that part. I look forward to hearing from you more. Welcome to the "club".

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