thereishope

Originally, they thought 2 doses would be required like it is when someone gets the seasonal flu shot for the first time However, upon further research, they saw that one might actually be enough to get immunity. They were looking into that because of they thought there were going to be shortages and wanted to know if 2 was really needed.

As for the 2nd flu shot, personally, I would not get the second one. Even if she did okay with the others, there's always the possibility it will send her immune system into overdrive and cause symptoms to resurface. Also, something to remember is every exacerbation is different. Another one so soon after the first one can be worse and not recover easily. That phrase "the one that broke the camel's back" comes to mind. I guess the question is if you want to chance it. How long has she been on her antibiotics? Is she still on any? If anything, I think she would need to be on a prophycatic antibiotic to try to prevent infections. How back to her baseline is she? Would you consider her 100% recovered?

My son had irritability and rage attacks. The rage attacks were very bad during his second exacerbation. They eventually faded away as he recovered. He did not have these problems prior to PANDAS. He does not exhibit them now as he is currently recovered. As for sensory issues, he was extremely sensitive to hot and cold. He had an aversion to touch., esp his head, he had clothing issues, he had problems like looking in a full dresser drawer and being able to process what he was seeing and choosing something. I didn't know that was sensory until I filled out a sensory profile questionnaire. He had a lot of sensory problems. The list goes on. They eventually went away on their own as he recovered. These problems have surfaced during strep triggered exacerbations. During viral and allergy triggered ones, it seems the irritability comes back along with some OCD. The rages do not resurface with viral setbacks.

She sometimes posts her upcoming interviews on her facebook fan pages to promote them. She also has a new email list, but I'm not included on it.

I tried contacting Autism One through their site and my old computer kept kicking me off their message system. I contacted Generation Rescue a week or so ago about PANDAS, not realizing they are part of the conference in May. Perhaps I will try contact them again. This time about Ms Maloney. Do you know if Dr K accepted their invitation? Do you know if he was asked to speak?

She likes to alter the pages to her liking. She is into deleting comment and relevant links if they do not support her thoughts directly.She says it is not a blog or forum for anyone to post anything they would like on, but if someone wants to help ALL children, they need to be willing to let all info be accessible. If you know fb, you know that all groups and fan pages get people supporting the topic and voicing any disagreement. If she doesn't like that, perhaps she should not gone on fb.Since her book came out, however, a PANDAS group on fb has increased by 40 people within one month! As for PANDAS Foundation, they were obviously not ready to go public when they did. I'm starting to think they went public when they did in order to try to gain some footing in approaching Oprah. Note the timing. An organization, I thought, was made as a support group, bridge of information, and a place for people to turn to for help, not another PR tool. I do feel this book may have started with good intention and I know she has helped some kids, but I'm sad to say it looks she may lost her way.

Wireless/electronic devices have had connections to neurological problems I think for awhile. I remember reading how pregnant women should not sleep with their belly facing a clock radio, cordless phone,etc. And it's not an old wives' tale:)

Perhaps more need to write to Autism One. Don't forget that Beth was invited to speak at their international conference in Chgo in May. They should invite Dr K. He's lives right there.

I haven't noticed a direct connection between problems with my son and lighting or electronic devices. My son did have sensory problems when he was in a PANDAS exacerbation but they eventually went away as he healed. When I was a child, I had a hard time at the mall.The flourescent lights use to drive me crazy. I was able to hear the high pitch humming from them that no one else could hear.It was so loud to me we would have to leave the store. Luckily, I don't have that problem anymore.

I think we will all get the standard response "the website is still in the development stage and not info has been uploaded". So, even if they did omit on purpose, they can cover their butts. Let's keep an eye on that site!

I'm trying to keep all you dates straight. A week before he got the azith, he tested + for strep, right? Be prepared for the doctor to say to birng him in for a strep test and if it's + he'll extend the script. If that happens, politely remind him that it would be too after the antibiotic to get an accurate reading on a strep test. I believe Buster had once said it should be done 14 days post antibiotics. Then explain, like EAMom said, how you noticed his PANDAS behvaior getting better on the meds then decline after finishing them. I'm assuming your doc is back on Monday? Is he on board with the PANDAS diagnosis and treatment?

Even with Beth Maloney, Saving Sammy, and Lauren's sneezing tic, most parents whose children have tics and/or OCD do not know what PANDAS is or ever heard of it. Within the past few weeks I have mentioned to some parents on OCD boards to always look into PANDAS when you see your child with OCD behavior. The response is always "What's PANDAS?". If a largely respected group like OCFoundation acknowledges PANDAS and recognizes it can be a possibility in a child diagnosed with OCD, PANDAS may someday be more known in the offices of psychologists and psychiatrists. Also, the media often turns to the OCFoundation for OCD info. That is another way PANDAS can get more recognition. If you remember that Dateline special on children with OCD, they got their info from the OCFoundation. One of the girls that was followed in teh story is actually the OCFoundation spokesperson.

How is behvaior right now? I think I remember you saying his scrpit ends on Sat. If you are not giving him Ibuprofen right now, I suggest doing it on Sunday while he is meds free until you speak to the dr. Good luck! First try to get an extension. If he refuses, then try to get another antibiotic. But do try to keep him on meds.

This is what I think happened. When I contacted them awhile ago, they told me they were going to revamp their website in the upcoming months and PANDAS would be easier to find. What I'm guessing is the revamping was making it "International OCFoundation". That's why your link, which says OCFoundation, is redirected the international site. So, they did revamp it as they said, but took off anything to do with PANDAS, whereas their original website had at least something you could eventually stumble on. This is the direct opposite of what I was told. So, anyway, my conatct to them was explaning what my response was from them and how they instead omitted PANDAS completely. I told them they have a resonsibility to these children and expect them to follow through with what they said. So, my email was different than what you intended this thread to be, but I am very angered right now.

Okay. I just viewed the link. It seems like it is run by the OCFoundation, but different. I am so angry. They told me months ago they were going to make PANDAS more visible by their organization and they have done the complete opposite. I just contacted them. Thanks for posting this.

Is the OCD website you are refering to the OCFoundation? If so, they have been around for awhile. They do have a small section on PANDAS, but you have to search it out. I contacted them awhile ago about PANDAS Network and they said they will refer to that site. I requested that they make PANDAS easier to find and visible and updated. I guess they haven't done that yet.

With my son, I would start to notice behaviors kicking back up at the 5 hour mark. I was giving it every 6 hours . That one hour wait until I could give it again was so long. I gave it to him every 6 hours when it is bad . Then when he just seems on edge (but not sure if it's PANDAS or not yet) I'll give it once in the morning-timing it around school. I think it's more for my comfort knowing he has it in his system for school.I do not regularly give it to him on a daily basis.I just wanted to say that so you know I wasn't giving every 6 hours for real long term. Yesterday, I was trying to look up info on Ibuprofen and I guess it also is used to help delay the start of Alzheimer's and dementia. But, like with PANDAS, naproxen does not seem to work as well. Then I was finding some other studies on IB and the BBB. So the connection has been made before. It will be interesting as the decades go on to see how all this different disoder will benefit frome each others research.

Does Advil have any blood thinning qualities? Could that be why they don't want it on the same day as a procedure?

Awesome! 3 days of improvement is a great sign!

I would get an extension on your script then eventually be put on a prophylactic antibiotic.

Happy Thanksgiving to each of you. You are part of my extended family. I wish you peace, health, and happiness.

This is great! I hope someone is there to take photos or a news outlet is invited. Ths needs to be documented for textbooks. Isn't it amazing that we are seeing history in the making?

Ibuprofen is a NSAID (Non Steroidal Anti Inflammatory Drug). It takes down swelling. With PANDAS, there is inflammation on the basal ganglia. So, the Ibruprofen, in some cases, takes down enough inflammation that some of the symptoms may lesson. This is info you should share with your doctor. It doesn't solve the problem, but does offers some relief for some kids. I believe that strep usually can resolve itself in time. I don't know if that is the case with PANDAS kids since their immune system is so messed up. What you don't want to chance is that it comes back full force by not being fully eradicated. If you ever think your child has strep, you need to get to the dr asap. Once the strep is gone, then the antibodies will begin to lower and you see improvements in PANDAS symptoms because the inflammation now has a chance to go down.

My son's biggest symptoms were mood, behvaior, OCD, and more. The first 2 times, it did all go away on its own. The third time, he had residual problems and we had to overcome those different than in a PANDAS exacerbation. I believe for some, some symptoms may end up becoming habit or the brain is so used to thinking that way, you need to eventually retrain it. As it stands, my son still has some bad behvaior now and then, but he's 6. The difference now is I can reprimand him and reason with him. I can give utimatums and such. During PANDAS, that is impossible.

There are others that never tested positive for strep. I agree with the others, you need to be on antibiotic. Also,as EAMom suggested, Ibruprofen sometimes decreases the symptoms It does nto fully solve the problem but it may help give her some relief while recovering. I would also suggest giving her Omega 3's and DHA to help the brain heal. Recovery, unfortuanely, does dont happen as fast as the onset. It takes awhile. Does she tell you what those intrusive thoughts revole around?