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Everything posted by thereishope

  1. I always feel funny saying what I give him cause it's nothing fancy. Just a plain old Disney vitamin...Walle to be exact He will only take gummies.They are natural dyes too. It sounds like you're son might have a fish allergy, so it'd be best stay away from those too. The DHA in it derives from fish oil. Gummie vitamin.... Are you talking about the one from Shaklee? We tried that on my other pandas son, and his OCD got worse. At least thats what we think.
  2. Also, those involved have to realistic and know a show about PANDAS will have doctors also trying to prove that PANDAS does not exist and may even use twist their children's stories to help prove that. Make sure you have a thick skin in case that would happen.
  3. I'd have to think about it. However, since my son gets extreme but does for the most part improve w/o IVIG & is not on preventative antibiotics, I may hurt the story more than help. I don't want it to turn into, "look, there's no need for these procedures". I don't agree w/ that and don't want to end up backing up that stance. I don't know if in the future I may be faced w/ that decision. Right now, I've been lucky.
  4. This is the link to Primetime. It doesn't play the whole segment, but gives some text. Would "youtube" have it? I started working on my letter and I started to ramble and preach. I have to scrap it and start over. I think it will be best to wait until the kids are asleep. http://abcnews.go.com/Primetime/story?id=8214328&page=1
  5. Yesterday, I was on the OC Foundation website and saw they were doing a study to see how Omega 3's help w/ OCD symptoms. To be part of that study you could not be taking any supplements that helped w/ OCD. These are the supplements they listed... inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins. My son takes a gummie vitamin that contains inositol and DHA from fish oil so who knows if that's helping him overcome some of the remaining OCD.
  6. I watched the show last night. They did not mention PANDAS, but to be honest, if they did, it would have been such a fast blurb that they would have misrepresented what we all go through. It really needs to be a show on it's own. For those of you who recorded it and wasn't sure if you should watch, it touched on 4 kids w/ OCD. All ended on a good note. I didn't cry until the very end, but it was a good cry for me. It reminded me of the accomplishments my son has made. So, Tonight I will contact Primetime and ask them to do a show about PANDAS.
  7. To my knowledge. my son only has seasonal allergies, no food like eggs. I live in OH and can take a philosophical exemption. I think he's caught up on immunizations for school right now so I don't have to worry about it right now. Or, at least I hope he's caught up. I'm concerned about the possibility of swine flu shots given at schools...if that happens.
  8. How do they do an upper respiratory culture?
  9. I think OCD can manifest in babies. I can't remember the age the psychiatrist told us. Somewhere bet 6-18 months. I know it's a big range, but I can't remember.However, not many kids get diagnosed until much, much older.My son is 5, so I would be curious to "compare" .Thanks for letting us know about it. I think I will watch it. It will help me write a better letter.
  10. btw...flu mist is a live virus. It may make symptoms worse. I am ridden w/ guilt that my son got it last year during an episode. We didn't know he had strep at the time and we didn't know he had PANDAS yet. We found out 3 days after he got FluMist.
  11. I started a thread like this a couple weeks ago. If interested, here it is... http://www.latitudes.org/forums/index.php?showtopic=5053 This was the link I found that says what states allow what exemptions.. http://www.nvic.org/vaccine-laws.aspx
  12. I'm not sure. When you're in the midst of it, you tend to forget to ask those questions. I didn't find this group until after that whole episode ended, so at the time I didn't even know what a steroid burst was.
  13. My 5 yr old son received predinsone when he was finally considered an extreme case. He wasn't eating ANYTHING for days, talking about wanting to go to heaven, talking about wanting me to go to heaven, rages beyond some imaginations, not dressing himself, OCD, etc, etc. So it was bad. I don't remember the dosage, but he received it for 5 days. He started it about maybe 5 days after finding out he had strep again. He was also in the middle of a 10 day course of amox. On day 4 (after 3 doses were now his system), I began to see him plateau w/ some improvement. He wasn't continuing to sprial. That was good to see. In my opinion, the steroid jump started recovery. I think he finished his 10 day course of amox and his 5 day course of prednisone around the same time. He was then med free. We continued to see improvement and ultimately he went back to baseline ( until he got strep again). Overall, it took about 3 months for him to get back to being himself. Let me add, he did not get a streoid during his first episode or his third. The neurologist reserved it only for an extreme case. Which his second time was.
  14. My son's neurologist said that no one really knows if all strains of strep can cause PANDAS to surface. Even w/ my son, the neurologist said that there is a chance he may contract strep one day & not have the symptoms of PANDAS. There's not enough research to know. Do your daughters have a reaction if they are just around strep? I find it odd that a doc thinks it's ok to have permanently strep B. Is that what they screen when you're pregnant & they swab you? If you need to, call the gyne and ask. Maybe they'll be more proactive in clearing it up.I think, psychologically, you'll feel better knowing it isn't there.
  15. can she give my 3 year some pointers in going to back to bed? glad to hear things are going well. and Nancy's comment reminds me of the time it took 4 nurses and my husband to hold my 5 year old son down and pry his mouth open for a strep test. oh, the memories... keep up posted!
  16. 1. Charts do not work for us. He actually alters them so what he wants to do. Can you imagine how that frustarted me? 2. Right after a + strep, I "go w/ the flow". The reasoning is gone and not really a point to try to alter behavior. Instinct tells me when it's time to intervene. 3. For OCD, he has residual OCD. This is not what to do during a PANDAS episode when you're experiencing meltdowns. You'd handle that differently. To give you an idea, we are 4 months since he last + strep test. Anyway, we are not doing meds. He went to psychologist who after 2 appts said the remaining OCD is different than regular OCD, thus reinforcing the remaining OCD is a result of PANDAS. She is holding off on CBT for now and I was told I knew what I was doing since I am seeing results fast. So, after only 2 appts and 2 parent visits, he is no longer seeing the psychologist. He may not even need CBT in the future.I started w/ all rituals I had to take part in. I give him a day or two warning that I will changing or eliminating it. If it's complicated w/ many layers, I wean him off it by changing it up. Otherwise, I simply don't do it w/ him or I don't allow him to do himself. I get some anxiety the first 2-3 times we eliminate it. The anxiety only lasts for about 5-10 minutes. You CANNOT give in at this point. Then, the extinction burst subsides and he's fine. Usually by day 3, the problem is gone w/ an occasional want by him to complete the now gone task. Every Monday I pick a new thing to tackle.Only one thing a week. It does sound a little complicated but it is working remarkably. Even the psychologist was amazed. Let me add, during recovery shortly after a + strep, I had to a lot more weaning than straight elimination and go at a slowly pace. The first time, he had germ/dirt problems. He wouldn't touch his toys. I had to sit there and take one of his fingers at a time until he grasped a toy. But then he was fine and would sit and play. 4. The psychologist and myself agreed to meet (w/o my son unless needed) once a month to track progress. Because all docs are associated w/ the same hospital, she will send updates to the psychiatrist and neurologist. we are keeping a chart of his anxiety, level of OCD, how it affects enjoyment. She is leaving him as an open patient so if I should need her to see him we don't have to wait.She is also going to aid me in getting PANDAS and OCD cited in an IEP under OHI. She said I can email her whenever I want. 5. I've decided to go as HFCS free as possible, greatly reduce food dyes, and go as natural as organic as I can. If I can think of anything else, I will add later.
  17. Question...on the contact page can she put a blurb like this... Help us, help others. Please share your story with us at (email address here). That way she doesn't have to forward you anything. All replies will go directly to you.
  18. I've already posted pandas network on at least 15 forums and websites. I will continue to post as I find more appropriate places to do so. When I post, I ask them to share their story. Do you want me to give your email in future posts or will Diana be able to just forward you any that comes via the website for you to sort through?
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