thereishope

Welcome. My first question is if the dr office also cultured all the strep tests or did they only do rapids? Was he on antibiotics when he had the strep test done? Also, like mentioned above, you can have setbacks with viruses,stress,a or allergies. My son had a very bad setback with allergies. The behvaiors surface about a week or two before I realized what was going on. Like you, I got a negative strep test and that led to a lot of confusion. For my son, once I got his allergies under control, the behvaior stabilized and put back on track to recovery.

With my son, he had residual OCD. His PANDAS episode was over. I could tell. But OCD stayed the last time.It didn't eventually disappear on its own like the first 2 episodes. It wasn't until we took the residual OCD as OCD did we overcome it. Once I educated myself on OCD and tackled it head on,he actually got better rather fast and the residual OCD disappeared. CBT would not have worked for us. I think what we did was like ERP. Not sure if it's exactly that since I pretty much formulated it on my own. Also, learning more about OCD and all it may encompass, helps all of us recognize early signs that a PANDAS episode might be starting.

I'm curious. Is the H1N1 vaccine like the regular flu shot where even though you get vaccinated, you can still get the virus, just a less severe case?

Char's from Canada. She can start smuggling them for everyone:) It's sad that she lives in the country that can supply meds for people here to help their kids, but she can't get treatment for her son in Canada.

Michele has seen her. She is the one who diagnosed her son, but ran into problems about treatment over state lines. Hopefully, Michele will check this and post more of her visit. If she doesn't, you can try sending her a pm.

As for the frequent urination, when my son was going every 5 minutes, I learned it was an excuse for washing his hands again. He knew I was monitoring hand washing and thought he could get around it by saying he needed to pee. Even at 5 yrs old, they learn to hide OCD very quickly. Then he went through a phase of needing to use the bathroom right before dinner. No matter how much warning I'd give, the second everyone went ot the table, he needed to go. Then he had a time when he'd go to the bathroom right before bed, go to bed, and 5 minutes later needed to go again. His mind just got the better of him. In my son's stuation, it was definitely OCD. He did have a few months when he got up in the middle of the night to go to the bathroom or he'd wet his bed, that wasn't OCD.

In an OCD group I sometimes frequent, one person posted that his OCD is homicidal thoughts. He said he wouldn't act on them, but out of nowhere, the thought would enter his head "you're going to kill the neighbor kid". He actually said one of the worst things someone could ask him was if he was going to act on those thoughts because it would make them worse. I think it reinforced the thoughts and empowered the OCD.But I can totally see why someone would feel the need to ask him that.

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When my son went on a steroid for 5 days, they said they weren't concerned about it compromising his immune system. But, granted, it was short term use.

I've tried briging in my child during rages and extreme OCD. They just had a nervous laugh and told me maybe he's bipolar and I needed to see a psychiatrist. I'm at the point, I don't even want to invite another doctor into our world. But they are the ones with the power of the pen to write prescriptions.

The high fever scared me. My son had 104.8 as well w/ both Motrin and Tylenol in him.

I've seen many people ask about amoxicillan. I thought I'd post our experience with it... My son is one of the rare ones that amoxicillan seems to help. I want to put out there, that if amoxicillan was going to help your child, I saw the downward spiral stop within the 10 days of the prescription, then he very slowly continued to improve after that. We'd have days of no improvement, setbacks that wouldn't really last more than 3 days. Overall, recovery varied from 2 months to 5 months depending on episode. I would continue to see improvement even after the 10 day script was done.He did get a 5 day steroid prescription with his second PANDAS episode since he was very bad off. Even though amox has worked in the past for us, if he ever gets sick again, I am requesting something stronger. You never know when you may get a stubborn infection and I now wonder if recovery wold have been even faster on a different antibiotic.

What is leading to pneumonia? Is it thick congestion, the hacking cough? When my 8 yr old kept coughing, it was scary. I kept having him lean forward, take a adeep breath, and I tried to listen to his breathing through his back. Not that I would have detected anything, but I felt like maybe I was doing something.

With your script running out, call and makes appt tomorrow for the throat swabs. you don't have to say anyone is sick. Just say you need to get the family swabbed since someone had strep. You may be able to get in same day. We do it every time. When one is sick, we all get tested.

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I asked her the same. She said to send both. I think it's more of an impact.

My husband said he read an article saying one of the top people in the company that makes the H1N1 vaccine kept saying in an interview that they are having great profits this year because of the vaccine, but they can't guarantee next year's profits. That's all he talked about. no concern for people, just profits. You'd think someone from PR would be telling him the right thing to say.I swear the more I hear about H1N1, the more I believe the conspiracy theories.

Maybe there's a simple answer for her not calling. Are you in the same time zone as she is? I'm sorry....

Some people can have secondary problems due to the swine flu. My 8 yr old had a horrible, harsh cough that lasted quite awhile. I can see if someone had asthma, there being a lot of concern. Also, I think the congestion can go into the lungs and cause pneumonia. My 6 yr old and myself had the congestion. After 1 1/2 weeks, I still have congestion. So, for some it's not a big deal, for others it can be. But then look at chicken pox. That's a required vaccine, yet a child can have chicken pox and recover fine like many of us did. In my state I don't think a second chicken pox is requied, but it if it is, my children will not be getting it. I'd rather them get chicken pox and have a lifetime immunity rather than getting a shot every 7 or 8 years then contract it as an adult when real complications can occur.

My husband was the only one that didn't contrat it. Swine flu did hit the United States before. I think in 1974 so some people may already have a natural immunity. My husband was born in 1969 so that might be why he didn't get it.

This is from the Saving Sammy fan page... Oprah Push Phase II: Would you be willing to email me a photo of your child? info@savingsammy.net. We're putting a package together of the faces of PANADAS so that she can see these treasured children. No names will be used. I think it could ...be very compelling, but I totally understand if you'd rather not. Thanks for considering!

They did not test my kids because they said the test was too expensive and the accuracy is very low. I look at the symptoms my kids had along w/ going around in school and I know that's what they had.The dr said they put it down as the regular flu, but seasonal flu hasn't hit Cincinnati yet so, therefore, it is H1N1, but they cannot write that down since they don't actually test for it. Talk about a run around answer. Good news, you are suppose to have immunity to it once you had H1N1.

H1N1 vaccine is here in Ohio. It is currently being given at schools, hospital staff, etc. High schools have already received it and my elementary school will start getting next week. Believe it or not they are doing the LIVE nasal vaccine at the schools. That is totally unacceptable. My kids had H1N1 already, so I don't think I need to pull them out of school after the vaccine is given to the other children. I think a lot of people will have H1N1 and never realize it. My neighbor's kids got it last week and they are still going to vaccinate! I tried to explain that they don't have to do that, but people are set in their thinking. I hope that little boy recovers fast.

I also read that raised blood pressure can open up the BBB. So high stress situations and anxiety is something you want to try to control. My son has had increase in PANDAS symptoms in high stress situations. He's able to deal with them better now, but not the case while he was in the midst of an episode or recovering.

My son goes to public school. He is in kindergarten and currently has not had a PANDAS episode since starting school this year (knock on wood). All 3 of his bouts w/ PANDAS was when he was in preschool. He missed some school due to PANDAS, but he also attended during exacerbations too. When he attended during an exacerbation, he actually behaved better in school. He did distnace himself from the other kids, gravitate to specific activities, had issues with eating lunch there, and had 2 instances when the teacher had to bring something to my attention (1 was obsessive hand washing and the other was a full fledge meltdown when he tried to run out of the school). Getting to school was our daily struggle. Overall, when he was able to get to school, it was like he got a break from PANDAS for a bit. But keep in mind, he went only 2 days a week for a 1/2 day each. As for his public school and kindergarten he goes to, the school knows his "situation'. He has an IEP in place for speech and PANDAS is reflected in the medical history. I had a very lengthy conversation w/ his teacher explaining what has happened in the past and what to look out for. And to try to group him with healthy kids. I have spoken to the principal, the health aid, the slp he sees, and I have emailed the school psychologist. For my son, public school is the only option because of $, but I also think with public school, they are able to be held more accounable for things and I feel like it is the right place for him. But I do also like our school and it is a very caring place. I know not all school are like that.