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Everything posted by Bigal

  1. I went to Whole Foods with low expectations on fish oil products for children. Low and behold there was a demonstrator there with fish oil products designed for children from Nordic Naturals. The products contain "pharmaceutical grade" cod liver oil. I took home some samples - I've got packets of four little fish oil soft gels that you bite into, they are sweetened slightly buy by and large have little flavor. One packet of four soft gels contains 82MG EPA and 125 DHA - Omega - 3 effervescent - creamy orange flavor drinks - has 240MG EPA and 260MG DHA - Lastly, there is just an oil that you can put in juice. The woman suggested 1/2 teaspoon a day, which would have 205mgEPA and 312mbDHA Again any suggested as to appropriate doseage would be appreciated. Thanks much Alan
  2. Thanks, I'm going to run over to Whole Foods to see if they have any fish oil supplements for children. Same problem as CJ, my son has never swallowed a pill. I really doubtful that he'll swallow a regular fish oil pill. BTW, what would be the suggested doseage? He's 8.5 about 55 lbs. Thanks Alan
  3. Hi I'm wondering about Omega3s for my 8.5 year old son who has TS and ADHD. His symptoms for both are mild enough that I don't feel a need to treat with medication. But it certainly wouldn't hurt in school if his focus improved. And if it could lessen his tics, that too would be great. I remember reading somewhere that fish oil can exacerbate tics. If that is the case then I definetely want to avoid that. Does anybody have any information? thanks Alan
  4. My son was recently diagnosed with tourette's. I want to make sure that it is not PANDAS though. I have received the names of two Neurologists from the PANDA network. Dr. Rosario Trifiletti in Ramsey, NJ and Denis Bouboulis, MD in Darien, CT. Does anybody have experience with either of them? Or do you have any other recommendation for someone who lives in Western Massachusetts? Thanks Alan
  5. Thanks again to everybody. I will be calling PANDA sprecialitsts this morning. I got two names from Diana the PANDAS network. I don't know if he has ever been on predinisone. I'm more familiar with the marketing names of his medicines. I'll check with his Dr. Are you saying that Prednisone can cause tics? Alan
  6. Wow, you guys are all awesome. I so admire your tenacity and dedication. I just wandered over to this post after reading the very helpful responses to my questions about PANDA (my son was diagnosed with Tourette's last week). I'm feeling much like you all. I hope I live up to your examples. Bravo!! AMEN sister!! Why are family members so doubtful of our God-given motherly instincts. And not to mention they have no problem kicking a dog while she is down (meaning they blame us for the dysfunction of our children!). There is no more devoted mother than me (and all of you) yet I am treated like I am a failure as a mother. My only failure was walking into the pediatrician's office with blinders on and offering up my kids to be injected with multiple poisons. Now I pay the price... Listen, you are a better woman than me. I was so pissed one night I typed out an email to my whole family (aunts, cousins, grandparents, you name it) and I vehemently defended myself, my children and my husband for all the judgement that is passed our way. I let them know that I will not put up with it and that if I have to choose between them and my children, well it is obvious who comes first...I know I made a name for myself and they are all going behind my back and saying that I have lost it. Well, I can not argue with that!!! Problem is they think that my kids have lost it b/c I have lost it, not the other way around. Some things will never change, unfortunately. My husband and I feel very isolated from our families right now. I'm not sure the damage can ever fully be undone. Just another side effect of this awful illness. Stephanie
  7. Thanks again to everybody. I really appreciate your input. I already email our trusted family doctor and will call a Panda specialist tomorrow. SAIDIE10, you said below "don't stop until I ruled out EVERYTHING". Other than PANDAS, do you know of other things that I should be looking at? Thanks again. I really appreciate everybody's kind help. Alan I am sure this is a scary time for you and your family. I would ABSOLUTELY test his titers because although you don't think he has ever had strep, his blood could show elevated titers. Don't stop until you have ruled out EVERYTHING...for your son and your family's peace mind. Good luck and I hope you find the answers here and elsewhere that you are looking for.
  8. Thank You Vickie, Peglem and Fixit No, I don't know if he has had strep then. I just know that he never had a sore throat. But since his brother and sister had strep sore throats, I'd assume that he was exposed to the virus. For that matter, aren't almost all school children exposed to it. So ok, he should have a strep test. But would a negative result mean anything? Would it rule out PANDAS? If he now tests negative for strep, but once had it, can he have PANDAS? No, he didn't have a respiratory infection. He has had respiratory issues, primarily asthma, but also unidentified allergies that give him sinus issues. I've never tried ibuprofen to ease his tics. I didn't realize that they may help. I may try that, but at the same time I want to be low key about his tics. And I don't want to have to tell him I am giving him something because of his tics. At least not yet. That said, if ibuprofen eased his tics would that be indicative of PANDAS, or counter-indicative? It was the braintalk communities Tourette's forum where I first heard the word "PANDAS". I'm not sure if that's where I found the link to this website. I'm wondering now, as I said, he hasn't had any sudden onset. But is it possible that he has PANDAS and the big event just hasn't happened yet? Thank for the information. I will check the websites. Sincerely Alan Welcome. May I ask what Tourette website sent you to PANDAS Network? You say your possible PANDAS son never had strep? Do you know that based on negative strep tests and/or blood tests or that he never complained about a sore throat? You can ghave strep w/o a sore throat or fever. Also, sinus infections can be caused by strep. For starters, if he has not had a strep test, get one. You mention respiratory infection...can you elaborate? Does the words "walking pneumonia" or mycoplasma ring a bell? One more thing I would like to ask is if Ibuprofen eases his tics? Here are some threads about PANDAS that people find useful. Maybe they will answer some questions and lead you to new ones. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl= I gave the last one because often people don't realize that their child has OCD tendencies.
  9. Hi, My 8 year old son was diagnosed with Tourette's on Friday. One of the Tourette's websites led me over to PANDASnetwork.org. So now I'm wondering if it might be PANDAS instead. Honestly, I think it is most likely Tourette's, but I don't want to make any assumptions. I don't believe that he has ever had Strep throat, but his brother and sister have. So he has been exposed to the virus. I believe that at PANDASnetwork, it says that exposure is enough. My son has asthma, as well as respiratory and sinus issues, and some excema. He has anxiety issues. Although I don't have a diagnosis of any sort, I am also an anxious person. His mother has depression. I have an an autoimmune disease (no IGA). So these factors make me think that perhaps he isa likely candidate. I read some of the case studies on The PANDASnetwork.org website. In each of those cases, there was a sudden onset of dramatic symptoms. But I believe that I read somewhere that that doesn't have to be the case. My son did not have any dramatic onset. And honestly, we were noticing potential anxiety issues when he was in pre-school. Then about a year ago, he started having tics. Then they'd get better, then worse. Phonic and motor. So again, there has not been any dramatic event. Does the absence of the dramatic event rule out PANDAS or make the chances very remote. Any thoughts appreciated. Thanks Alan
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