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Pandamom777

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  1. Can anyone give me some info on anti-GAD antibodies? My daughter's was elevated. Thanks, Sharon
  2. I agree that you need to get Vitamin D levels checked. There can be an incredible variance in individual levels. My daughter needs about 3500 IU's to keep in the normal range and she weighs 69 lbs. Her level also went up and down quickly as we tried to find the right dose for her, much to the surprise of her endocrinologist. They didn't think a change in dose could show such a quick response -- but it did for her!! I read quite a bit on toxicity, and you need to be aware as it is one of the fat soluble vits, but I couldn't find any stories on people dealing with side effects from toxicit
  3. No, we haven't done long-term antibiotics. When I first approached my daughter's pediatrician, he was skeptical, but wrote a 10 day prescription for Amoxicillin. After reading posts here, I see that won't be very helpful, so I have been trying to find the right doc to work with to decide which type of antibiotic and how long. What's interesting is when the dystonic movements started, we looked a lot into seizures since she had just started on Depakote when the movements began. Not until I saw Beth Maloney talk about her book did I start looking into Amanda's medical records to discover
  4. I have been trying to find a doc familiar with post-strep dystonia. Since this information is even newer than PANDAS, very few papers have been written on this topic. I spoke with Dr. Kaplan, here in Minneapolis, along with a movement disorder specialist, but have gotten nowhere. PANDAS may be controversial, but post strep dystonia is pretty much unheard of. This seems odd, as Sydenham's chorea is so well documented, and the leap to believing other movement disorders could also be strep related seems fairly logical. Compounding this confusion is that my daughter has a significant d
  5. We met with Dr. Kaplan at the University of Minnesota this week. He was just how you described him. He was kind and listened to what we had to say, but at this point believes in PAND and not so much PANDAS. He said the science just doesn't back up the strep connection to PANDAS, BUT he kept saying that he is keeping an open mind and continues to consult with other doctors with differing opinions. Our case is a little different. Our daughter is in the ASD spectrum with many OCD behaviors, but our main concern is a dystonic movement of her face. Since there are some studies on post
  6. Not sure how this ties in, but my daughter was on the Ketogenic Diet for several years. While reading up on the diet, I learned that the diet is a modification of a starvation diet. They learned, by accident, that seizures declined and/or stopped temporarily in people that were fasting. The high-fat ketogenic diet was created from this concept. Sharon
  7. Hi Steph, We've been gluten and dairy free at our house for a long time. The change over can be rough at first, as you need to rethink how you cook, but after awhile it becomes much easier. One common mistake, I think, is trying to substitute wheat for pre-packaged gluten-free items. You are often trading one problem for another, and you can easily consume way to much rice and/or corn products. They are often over-processed and really expensive. Having said that, we do use some gluten-free products, though I try to limit them. The ones I think taste pretty good are the Tinkyada pa
  8. My daughter has been gluten and casein free for many, many years. It can be tough at first. You need to plan ahead -- fast food is not a good option. I think a mistake commonly made at the beginning (including us) is trying to fill the wheat void with way too much rice and corn products. Processed rice products can really raise the body's glycemic index rapidly; ditto for potatoes. Because of the dramatic increase in autism, you can find a tremendous amount of cookbooks out there now for gluten-free and casein-free diets. The theory is that gluten (the protein in wheat, rye, barley
  9. We were just referred to Dr. Kaplan at the University of Minnesota (infectious disease specialist) by a neurologist at the U of M. I looked briefly on the site and saw that some of his papers have been referred to here. I would love to hear some feedback about him. Thanks, Sharon
  10. I had allergy shots as a teenager. This was a few years ago, so they may have changed how they're done, but I remember they were very hard on my body. I left each time with a huge lump on my arm and it never improved my allegies. As an adult, my daughter and I went to a progressive allergy clinic that does subligual drops instead of shots. It was much easier on my body and, of course, easier than getting shots. We had insurance coverage for testing, but paid out-of-pocket for the drops. They mailed them so we only had to go once a year for a check up. Sharon
  11. Allison, I'm also curious to hear what others have to say. We are in the process of finding out of our daughter has PANDAS, but she has been having periods of hyperventilating and breath holding for a long time -- sometimes to the point of her lips turning blue. Her oxygen levels are always OK, though, and she always starts breathing normally after awhile. Sharon
  12. It's so nice to have a kindred spirit! Sometimes this journey can feel so lonely. We live in Minnesota (go Vikings My daughter, Amanda, is 21. I guess I never thought that some of her early issues could be PANDAS, but she had thrush at one-month old and had impetigo at six-months old. It is interesting that her pediatrician said she looked great when she was born, but had serious concerns at about the six month mark..... This was followed with years and years of chronic infections and antibiotic use. It was after reading Beth Maloney's book that I started looking at my daughter w
  13. My daughter has a global developmental disability, autism, and is non-verbal. She has also had some interesting neurological issues through the years. Mother's instinct has told me that the two were separate and I'm thinking that PANDAS explains the 'odd' neuro behaviors. Because of Beth Maloney's book, I constructed a timeline and found all of the neuro stuff began when she was diagnosed with strep. It was my aha moment!! I know many of you have had difficulties getting docs on board to help and I think I have an extra challenge. Because of her disabiilty doctors tend to explain away
  14. My first question is if anyone's child experiences a change in severity of symptoms during the day. My daughter is always worse in the morning. 3:00 seems to be the time when she usually starts to get more calm, and she is almost always doing better in the evening. My second question has to do with success with treatments. The journal articles I've been reading talk about a great reduction in symptoms after 14 days or so on antibiotics. Then they don't talk much about long-term prognosis or treatment. I see on the site that many kids are on antibiotics for extended periods of time,
  15. We live in Minnesota. I haven't found anyone yet with knowledge/experience with PANDAS. Does anyone have any suggestions of docs in Minnesota with expertise in this area? Sharon
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