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Kayanne

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Everything posted by Kayanne

  1. In PA, flu vaccines are still optional. Are they required in other states?
  2. I can't speak for the "Pandas community", I can only relate my family's experience with vaccines. They have not caused any PANDAS symptoms in my daughter, and I haven't seen any adverse side effects in my other children either. I believe my daughter got PANDAS because she caught the right strain of strep, has a genetic pre-disposition to it (family history of RF), and her strep was not treated properly at first.
  3. (((hugs))) I'm sorry. I would call his doctor, because strange behaviors can also be related to diabetes.
  4. I don't have a lot of time today to read through a search, but if you do a quick google of just heart valve surgeries, RF and such in India, you will find that RF is still really prevalent. Most of the YouTube videos of kids with SC, are from foreign countries too. I can't speak for other autoimmune conditions, but the post strep ones are still common in countries that have populations that don't have easy access to antibiotics. RF and SC are rare in the US thanks to penicillin.
  5. I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine). Peg, I'm really happy that you've found something that helps Allie. I have some friends who get migraines, and they like Imitrex. I can't comment on histamine or methylation, but there definitely are certain co-factors needed to convert the amino acids into neurotransmitters. One of them is B6 in the form of P-5-P. It's not normally found in multi-vitamins. They usually have B6 in the form of Pyridoxal-phosphate (PLP). A great resource is a free online book in a .pdf format. I don't want to directly link it in case it is against forum rules, but if you google A Way Up from Down by Priscilla Slagle, you will be able to download to the book. It's just a great overview of all of the vitamins, minerals and supplements that can help balance out Serotonin and Norepinephrine. I know there has been a lot of discussion here about glutamate---I want to go back and see if she mentions anything about that in the book or on her website--I just haven't gotten the chance. If you would like, I can pm you the direct link. Good luck.
  6. I don't notice any major differences in my kids when they have sugar, and judging by everyone's posts, I'm the liberal mom who lets my kids have treats about 1-2 times a day. We do think we've noticed our son being more difficult after eating Red dye, so we try to limit that, but are not religious about it. Halloween Candy is something of a problem -- for my waistline. The kids are allowed approx 2-3 per day for about a week, then I start to crack down them...eventually throwing it away.
  7. Yes, that's right. Here is a quote from that link I posted: Mechanism of Action: Glucocorticoids are naturally occurring hormones that prevent or suppress inflammation and immune responses when administered at pharmacological doses. At a molecular level, unbound glucocorticoids readily cross cell membranes and bind with high affinity to specific cytoplasmic receptors. This binding induces a response by modifying transcription and, ultimately protein synthesis to achieve the steroid's intended action. Such actions may include: inhibition of leukocyte infiltration at the site of inflammation, interference in the function of mediators of inflammatory response, and suppression of humoral immune responses. Some of the net effects include reduction in edema or scar tissue, as well as a general suppression in immune response. The degree of clinical effect is normally related to the dose administered. The antiinflammatory actions of corticosteroids are thought to involve phospholipase A2 inhibitory proteins, collectively called lipocortins. Lipocortins, in turn, control the biosynthesis of potent mediators of inflammation such as prostaglandins and leukotrienes by inhibiting the release of the precursor molecule arachidonic acid. Likewise, the numerous adverse effectsrelated to corticosteroid use are usually related to the dose administered and the duration of therapy. Motrin is an anti-inflammatory. It is an NSAID which stands for Nonsteroidal anti-inflammatory drugs.
  8. All of my kids either went to pre-school or are currently in pre-school. It is at a local private school, and by the time they are done with Pre-K, they generally know all their letters, colors, shapes and numbers to 10. They do a lot of singing, coloring, cutting and pasting to help develop fine motor skills. Then in kindergarten, they are starting with all of that again with added math and reading and spelling. To be honest with you, I don't worry too much about the academic end of pre-school. I think it is mostly learning how to behave in school, and follow directions. But our pre-school also seemed more laid back. For my oldest, I went to a Montessori school for a few months, and I like the socializing focus that they have. However, overall, I am much happier with the more laid back approach of our current pre-school.
  9. bronxmom2, I'm really glad to hear things are going well for you guys. Thanks for sharing your experience with Straterra. I'm curious what is the dose that your son takes?
  10. ohh...I love you! Can my Doctor Who doll come and visit your dolls? He's been lonely...LOL...sorry I couldn't resist. You made a great point, though
  11. I agree with dcmom and LLM's posts.* There isn't much to add. However, I found this site to be really informative about prednisone: http://noairtogo.tripod.com/prednisone.htm *With the exception of LLM's interpretation of Bee's Lyme Lab results--I don't have an opinion of that because I haven't needed to learn about it.
  12. I'm crossing my fingers that clindamycin helps. It has been a good antibiotic for us. When my daughter tested positive for strep throat for the 4th time, she was put on 10 days of clindamycin at 300mg 3x/day -- 900mg total daily. She was 6yrs old and only about 42-43lbs. It cleared the strep for her, and by day 10 we saw some good improvements. However, by 1 1/2 days after stopping it, she seemed to get much worse. Then she was put on her first pred taper (and 100mg azith daily)-- I think the clindamycin got the infection, but the pred stopped the inflammation and autoimmune response. ((hugs)) Good Luck.
  13. I am speaking very sincerely when I say that I wish you would post WHATEVER you think you want to share with your PANDAS family. Also, please DO NOT soften it with an apology either. You're doing us a favor by sharing information. I don't make it over to the Lyme forum much, so if there is something that could help PANDAS parents on there, I appreciate the information. The same holds true for the TS forum. Your posts are ones that I go out of my way to read. You have a wonderful way of expressing how I feel most of the time. In this post, I couldn't agree more with your suggestions. However, I want to take it a step further and point out that the majority of the posts that deal with both Lyme and PANDAS are respectful. It's posting style and personality clashes...it was happening even before Lyme was suggested on this forum. Remember? Anyway, I appreciate the time that you do take to post, and I really hope that no one gets scared off.
  14. I am so saddened by your post. This forum is/was/and continues to be a tremendous resource to many families. I feel in my heart and soul that EVERYONE is allowed to post in any forum here. I do so hope that you don't let this upset you. I just needed to speak up and put this in a proper perspective. This is NOT about Lyme vs. PANDAS. It never has been about that. I firmly believe that every person who posts here wants all of our suffering children to get better, and ALL of the posts reflect that. This is more about personality conflicts than anything else, and I really would urge everyone to understand that dust ups like this have been happening for some time now. Not even with regards to Lyme and/or PANDAS either. For me, it is just disheartening to read posts that sound so definitive and they are put across as fact, when in reality there is very little "Facts" in the whole treatment of Neuropsych disorders. I understand that it is a posting style of some, but couching comments with phrases such as: "it's been my personal experience"; "our doctor has speculated that..."; "parents have reported successes with..." are so much more helpful than a flat statement that is put forth as if it's a fact. When something is presented as a fact, not as possible helpful information, it makes other posters who have decided that they want to pursue a different course of action feel as if they are not doing the right thing for their child. I don't know any parent who isn't going to get defensive if it seems someone thinks they aren't helping their children enough. When someone posts in such a way that insinuates they are speaking the truth, and it's really just their strong opinion, they should be called on it. Frankly, one function of this forum is sharing anecdotal information. That anecdotal information has helped soooo many people. I urge Everyone to continue to post what they feel is applicable. It's our jobs to objectively decide if that information is something we want to pursue or not. Positive thoughts and prayers to all. Good Luck.
  15. It could have been, but if they didn't spread or itch--it might have just been dry skin or something else too. When I've noticed it, it was 2 on one day, then 6 the next -- and the kids complained that it itched (or I was telling them to stop itching). Our ped told us skin infections are usually strep or staph. Strep is a faster moving infection than staph..If you ever see them again, ask your doctor to swab them for strep. A few times our ped has done that. Once it was negative and he said it was then staph, so he sent out for a MERSA culture (thank God that was negative!)
  16. Yes, my kids have had impetigo 3 times...each time it looked like teenage pimples--red bumps. Some of them had a center some didn't. No weeping at all.
  17. The last 2 years all of my kids have had flu shots. They've had no adverse reactions. I based my decision on the fact that my PANDAS daughter was well when it was time for them, and on the idea that the antibody load from vaccines is much less than actually getting the flu.
  18. My PANDAS daughter didn't have a flair of symptoms after her T&A. I think Dr. L is letting you know the risks, but that doesn't mean ALL kids have flairs. I could be completely wrong, but it is my understanding that tonsils can harbor more than just strep. My non-PANDAS daughter's tonsils cultured positive for haemophilus influenzae. I think there can be latent viruses in the tonsils too...but not much is really known about it. I recall an article (or was it an abstract) that discussed viruses using bacteria as hosts, and that a lot of times it's really just the environment (what types of bacteria, viruses, fungus...you know biofilms) around that contribute to someone getting sick or not...a perfect storm. Anyone else remember that or have a link? Someone had suggested (I can't for the life of me remember who? perhaps it was Swedo in one of her speeches or interviews...? Anyone know?) that perhaps a previous virus, combined with strep a few months later...could be that perfect storm for genetically susceptible kids. When I explained to our ENT how my dd's symptoms got worse even though she didn't test positive on the rapids and culture, he said that those tests are only looking for group A strep. I took that to mean that he believes other types of strep can cause PANDAS symptoms too. Although, he did admit to not knowing a lot about PANDAS.
  19. (hugs) What antibiotic was he on as a preventative, what dose and how often? Was he tested for strep when his PANDAS behaviors came back? Were family members tested? If positive, what antibiotic was he given (again, dose and frequency, and length of time)? Have you seen a PANDAS doctor before? I'm really sorry that you are suffering right now...I pray every day for our kids. I know the feeling of floundering...it was weeks of indecision, and concerned glances shared with my husband...and hours and hours of dissecting every thing my PANDAS daughter did -- but we were finally showed that IT was back when she became a crying, huddled mess in the bottom of her closet because she couldn't decide what to wear. It's like being kicked in the gut. My daughter was on pen vk....this shouldn't happen... For us, Omnicef and prednisone pulled her out of it in a matter of weeks...thank God! I'll just keep on praying... I'm signing off for the night, I'll check back tomorrow.
  20. Ceftin (Cefuroxime) is a 2nd generation Cephalosporin. My oldest daughter was prescribed it for a sinus infection. It did the trick in one round. It's nasty...even taking the pills is difficult (according to our pediatrician). My daughter was a real trooper and took the liquid twice a day. Omnicef (Cefdinir) is a 3rd generation Cephalosporin. It's been prescribed for my kid's strep a lot. My PANDAS daughter takes 150mg liquid daily as a prophylaxis. She doesn't complain about the taste. We don't have lyme, so I can't chime in on herxing and such, but my experience with them has been really good. Good luck
  21. Dr. L is our PANDAS doctor. A D.O. is a Doctor of Osteopathic Medicine: http://en.wikipedia.org/wiki/Doctor_of_Osteopathic_Medicine Instead of an M.D., they will have a D.O. after their title. It was a D.O. who first brought up the idea of PANDAS to us...the very first time we brought up our concerns about my daughter. I have purposely, over the years sought out D.O.'s--they just seem to fit better with me. They spend a little more time learning about ways to keep healthy, and nutrition in their schools. When I was a teen, I worked with a girl going to the Phila. College of Osteopathic Medicine, so I learned about D.O.'s from her. I've always been happy with the D.O.'s that I have seen.
  22. Hello, I usually post on the PANDAS forum, but I know you won't mind if I post this here too. I know it's easy to miss something that we see everyday, but the progress meter on the main forum page shows only $500 more is needed. That is sooo close: It's $10 from 50 of us. It's $15 from 34 of us. It's $20 from 25 of us. It's $30 from 17 of us. It's $40 from 13 of us. It's $50 from 10 of us. Well, when I think of it that way...it really shouldn't take a lot of time before they reach their goal. This forum is priceless.
  23. Hello, I usually post on the PANDAS forum, but I know you won't mind if I post this here too. I know it's easy to miss something that we see everyday, but the progress meter on the main forum page shows only $500 more is needed. That is sooo close: It's $10 from 50 of us. It's $15 from 34 of us. It's $20 from 25 of us. It's $30 from 17 of us. It's $40 from 13 of us. It's $50 from 10 of us. Well, when I think of it that way...it really shouldn't take a lot of time before they reach their goal. This forum is priceless.
  24. Hey, I know it's easy to miss something that we see everyday, but the progress meter on the main forum page shows only $500 more is needed. That is sooo close: It's $10 from 50 of us. It's $15 from 34 of us. It's $20 from 25 of us. It's $30 from 17 of us. It's $40 from 13 of us. It's $50 from 10 of us. Well, when I think of it that way...it really shouldn't take a lot of time before they reach their goal. This forum is priceless.
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