thereishope

I'm not saying it has to be a long defintion. I suppose a reference to the NIMH for OCD may be sufficient, but I have not looked at that. I didn't remember reading that a DSM IV diagnosis was required in the original definition. I'll have to look at that. It would nice if that could be altered over time. I'd hate for a doctor to say they cannot give abx until you see a psych for a eval if a strep test comes back neg. It takes months to get into a psych if you are a new patient. My son was diagnosed w/ PANDAS w/o seeing a psychiatrist. I can guarantee his score would have been 30+. I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before. While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis. Buster

Maybe all other suggestions/comments can go under the new thread devoted to this... Is there a way to close the thread?

I'm nit picking here, so bear with me... 1.I know PANADS/OCD is mentioned in paragraph form, but I think it should be in the itemized list as well. Perhaps w/ a very brief generalization of what OCD may be. Presence of OCD (rituals, intrusive thoughts, unreasonable fears). The stuff in the () could be altered. I'm just too tired to think clearly right now. I just view the itemized list as very important because that is what a parent will automatically go to if they visit the site. 2.I think in the treatment paragraph, the wording of proph antibiotics needs to be in its own sentence. Thta makes more of an impact. There is just so much importance in docs realizing it's okay to give long term proph antibiotics. 3. Realistically, you can include this website for doc referals, but they will never put that up. You did a great job! Where do find the time?

I know PANADS/OCD is mentioned in the pargraph after the list of symptoms, but I think it should be in the itemized list as well.

Make sure you let us know about appearances and any stories written. That way we can help if anyone has the nerve to say something negative about you, Lauren, or PANDAS. We got your back! You're not in this fight alone.

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For those looking to add Omega 3's ino the diet w/o taking a supplement, they now offer many foods with Omega 3's incorporated in it. Peanut butter, pasta, butter/margarine.... And it is all reasonably priced. I have very picky eaters and you can't tell something has been added.

DHA is what babies get for healthy brain development. I see it that the inflammation has to go down and then the brain needs to repair some of the damage that was caused by the inflammation. Like there's a bruise that needs to go away.

I think the story also got media attention because it was able to be catagorized as a sneezing issue in a time when viruses and illness is in the news and will catch people's attention.

The vaccine may have gotten the ball rolling then the virus threw it over the edge. Or.....the vaccine is what caused the PANDAS to surface then it was the repetitive sneezing/turning that led to a tic. I have a question, and I may sound stupid here, but is it definitely a tic or could it be OCD related? if it was OCD related that would explain how it started out as a natural motion and led into a OCD ritual. I agree, don't give Gardasil. The thing is we really don't know her full medical history. The Mom does not have to disclose every detail to us and the more the docs prodded her, the more info and revelations may have surfaced.

I do think the vaccinations may have played a part but I still think the media is kinda weird about voicing too many negative things about vaccines while they are trying to help sell the H1N1 vaccine. When was the time table for the vaccines vs the virus vs the tic?

I remember her saying that they were doing the Cunningham test.Those results probably aided in making a diagnosis. There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information. What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode. If she doesn't have a current strep infection, I'd be surprised if the abx eradicated this girl's tic, the same as for many of us here who have had symptoms for some time now. Some may not agree with me either, but for me, it was the Gardicil and the Dtap vaccines (double whammy) that she got in the months before that triggered her sneeze/vocal/tic. I've been on these boards for years and hve tracked alot of information given by the parents here, I know this has happened to several here. I don't ask question after question for no reason. I got a book yay thick. Faith

Even if you didn't change your name, my brain is too fried to keep everyone's "stories" straight. Some have said that it took even up to a month to truly see improvements.If you had to try to put a percentage on improvement, what would it be? As for how long it takes, I feel bad when I say this, but it really does vary child to child. Also, some kids may eventually, need to take further steps to go into remission. For my son, the first two strep triggered exacerbations took about 6 weeks to overcome. The last strep triggered exacerbation took 5 months to completely overcome. In my opinion, as long as you continue to see some improvement, that's good. It's when you have dramatic setbacks lasting awhile or reach a plateau in recovery and you still don't consider your child back to themself that you need to question what is going on. Also, give supplements to help the brain heal from all those years of inflammation. Omega 3's, DHA, are good for the brain.

I'm glad she got her diagnosis, but I also feel for the family. I remember when I found out it really was PANDAS. Relieved that I knew why this happening to my son. Scared that I didn't knwo what the future may hold. I hope she comes back here for support. It would be great if they helped spread the word, but we must all remember their first job is to get Lauren better. What we can do as a community is to start contacting media outlets and use Lauren's Today Show story as an example. Thatway whomever reads the email with have something to associate PANDAS with. Explain how the word needs to get out and Lauren is an example of a child that could easily fallen through the cracks. I will try to search out links to contact various shows an dsuch to make it easier. if we contact them in big numbers, we cannot be ignored.

It's tricky, isn't it. I've posted things on various groups and forums just to then feel like it could come back to kick me in the butt. I'd say leave it up. I also wonder why I used my name as my user name. That wasn't very smart of me when I really think about it. Now I can't deny it's me:)

I also think the severity of viral triggered setbacks has to do with how soon after the last strep infection was. Like the cold that happened rather soon after my son's last strep infection was let's say "on the lower side of medium" and the allergy induced one that was less than a month after strep was actually pretty bad to the point we brought him in for strep test. But, the viral ones he's gotten months after being strep free are rather minor to the point if you didn't know PANDAS you'd say he was acting that way just because he had a virus. So out of curiosity, EAMom, you say that H1N1 was big trigger for you. How soon after the last + strep test did that occur? Our H1N1 occurred about 7 months after his last + strep. He had a setback due to H1N1, but it wasn't that bad and didn't last long.

It's actually not uncommon to find doctors who will diagnosis PANDAS or agree to the diagnosis, but will only give an antibiotic for a + throat swab. Even then, you get 10 days and that's it. They say there's no research to show a longer dose is needed and tune you out when you explain to them they are wrong. Same w/ prophylactics.I know EAMom already posted the link about amoxicillan failure in strep, but some doctors are just convinced if they didn't find the info ,it's not worth reading.

You can strep on the skin. 2 of my older son's classmates had that last year. They looked like blisters or sores. In my son's case, he is strep free and has been so for months. I have seen some slight PANDAS resurfacing when he has a virus. For him, I give him Ibuprofen and it helps. When his virus goes away, the PANDAS that resurfaced goes away. But when it is a viral trigger, for my son, the PANDAS that resurface is very minor compared to strep triggered PANDAS. Again, the reaction to a viral trigger and the severity varies child to child. I just learned my son's "pattern" for the time being. In regards to a culture, I guess it depends if they cultured the part that would have the strep and if they got a good enough culture. Not all strep is in the throat.

Eczema ia an autoimmune problem but I don't believe it is caused by strep.

You're having a good week, huh? First that study you found that proved what your doctor thought, then the immunologist, now the intertrigo. Good things are coming your way!

I am so sorry you have been living this for so long. But know you have so much support here. I, too, would like to know what he is currently taking? There are still options out there that may help your son so don't lose hope! I agree that a good amount of success has been with chidlren taking Zithromax or Augmentin. What are his current symptoms? For now, try giving him some Ibuprofen and see if that helps at all. I can't say it alway works, but for some it eases some of the problems. My son also had OCD. Some involved agorphobia, and issues with going out into public or into buildings. Let me tell you, now he is fine. He leaves the house no problem, runs around outside with no "protection" like a coat or hat arms extended like an airplane-not a care in the world, he looks up when he walks and no longer looks down at the ground. Just don't ever give up hope.

In regards to a viral reaction or even to a vaccine or allergy, I think I remember you once explaining that every time the immune system kicks in, some of those bad strep antibodies are released too. I understood (or misunderstood) that was the case even though the strep was erradicated. In other words, just because your child has a reaction to a virus does not mean they have active strep hiding somewhere.

I believe some have bought Zithromax online. I have not. I would say try contacting your ENT and his PCP first before looking into online ordering. Maybe they'll suprise you....

A lot of parents have said that their children seem almost symptoms free while they are sick. The calm before the storm. I remember at least 2 kids that their most success was on Keflex.

I'm guessing both patients and non-patients contact her the same way? Perhaps she need to set up an email address or voicemail that is for established patients only. It would help her to weed through the contacts and let her know who she has a true commitment to in responding.