Pandamom777

Can anyone give me some info on anti-GAD antibodies? My daughter's was elevated. Thanks, Sharon

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 toxicity. In fact, I've known many docs prescribing 50,000 IU's short term to get very low levels up in adults. Dr. Mercola talks alot about the value of D on his site. He also listed it as one of the top things to take to avoid the seasonal flu and suggests that our country's chronically low vitamin D levels could be the reason so many people get the flu in the winter. Just my two cents, Sharon

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 that she had strep at that time as well. Amanda had repeated ear infections, followed by repeated sinus infections and was on over 60 doses of antibiotics. They often didn't bother testing for strep, since they were giving her an antibiotic for her ears/sinus anyway. This dropped off significantly when we started home schooling, and this is also the time when the dystonic movements were gone. Hmmmm.... The movements stopped for 7 years after dental extractions. She was given Ancef in an IV and Keflex orally. I found it interesting that she had never been given these meds before and that I read that they are used for 'resistant strep,' although Dr. Kaplan said that there is no such thing as resistant strep and that it is easy to kill. I'm trying to figure out if getting antiobiotics in this combination was key, or if there was an infection in her mouth that resolved, or something else.... Thanks for your offer to help, Dr. T, I will be emailing you soon to discuss Amanda. Sharon

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 developmental disability, autism and is non-verbal. Before I heard about post-strep disorders, we saw MANY neurolgists (and others) looking at possible dystonia or seizures. Sadly, many of them felt, because of her disability, that the movement is a "behavior." Only a few were willing to look further. We never got any answers and quit looking. Years later, after dental extractions (and antiobiotics) the movements disappeared for many years. Now that they have returned, I'm hoping the added info regarding post-strep movement disorders along with how they stopped could be the missing pieces. Where to go???!!! What to do???!!! Sharon

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 poststreptoccal dystonia, I thought Dr. Kaplan would be interested. We left empty handed, but he does want to talk more to offer us some direction. Sharon

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

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 pastas (they sell every kind of pasta). Just don't overcook them. Udi's makes some good white and wheat bread. Van's makes good gluten-free waffles. As someone else said, Trader Joes organic products are really reasonably priced. Just don't overdo it as you will be getting way too many processed carbs and will be spending a lot of money! A better option is to replace processed carbs with simple ones -- increase fruits and veggies and cook more from scratch. It's cheaper and healthier as you are getting more variety in your diet. As far as cost goes, there are the 'dirty dozen' fruits and veggies which are better to buy organic. The rest do not contain pesticides and are OK to eat conventionally. This can save a lot of money! As far as organic grass-fed meat and organic chicken, look for a local farmer where you can buy in volume. The cost per pound is much, much lower than buying a pound at a time at the grocery store. Your local coop may be able to give you the names of some farmers. Swanson is a company that sells very reasonably priced supplements. They have several kid-friendly Omega 3 supplements you could try. Their site is www.swansonvitamins.com. I'm sure there are other companies as well. I think your doc is very wise to suggest some changes. They are finding that an increasing number of people are having trouble with gluten. Because of the way they now grow wheat, it has 50% more gluten in it than it did 50 years ago. This could help explain why our grandparents did not have the problems eating wheat, but so many people do now. Fatty acids are so important for good brain function. Don't forget to increase the good fats, too: olive oil, avocados, nuts, etc. Good luck, Sharon

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 and contaminated oats) and casein (the protein in dairy products) break down into peptides that can cause problems for people with leaky gut, which is a common problem for kids with autism. The peptides get into the bloodstream and have an opium-like effect on the brain. I know of children that will sneak the jug of milk out of the fridge and guzzle it down to get their fix. The change I've noticed in kids is that they are still autistic in the way they think, but the rages, meltdowns and aggressive behavior is greatly reduced. Allergy testing can help pinpoint foods that kids are allergic to, but this issue is more of a sensitivity/intolerance, not an allergy that involves the immune system. I don't know of a test to see if removing these foods will help; most families I know just try it to see if it will work. Because it can be such a challenge, a lot of families remove casein first to look for changes, before taking on the challenge of a gluten-free diet. My daughter has been on the Specific Carboydrate Diet for a few years now. It was designed for people with irritable bowel and Crohns disease, but has been used more and more for people with autism. It is a diet designed to reduce yeast and heal the gut. It elminates all grains, but allows honey and fruit. I know this seems contrary to elminating yeast, but the theory is that the foods that are most quickly digested will not give yeast time to feed on it. So far my daughter has done really well and no longer has a chronically distended belly and constant gas. The pecanbread site is a branch of the diet geared to autism. The main book on SCD is called Breaking the Vicious Cycle by Elaine Gottschall, and the website is breakingtheviciouscycle.info. Another option I haven't heard mentioned is the Body Ecology Diet. It is also a diet used to reduce yeast in the body. They take a different approach then the SCD does, but has helped a lot of people, too. They use food combining, include some grains, use stevia and lakanto as sweeteners and use a lot of fermented foods. Just my two cents... Sharon

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

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

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

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 with fresh eyes. I began wondering if all the ritualistic behavior, the weird breathing patterns, dystonia movements, etc. could all be connected. After reading your post, I am now adding in her apraxia -- both motor and vocal to the mix. It also makes reminds me of a conversation I had with our chiro/accupuncture doc who told me he feels Amanda does not have a developmental disability. He said he's worked with many kids that do, but that those kids look much different. He said they often look tuned out -- Amanda appears to be more locked out. Basal ganglia issues??? Since the dystonic movement recurred, I scheduled an appointment with a neuro who specializes in movement disorders. Not sure if he is up on the new info on the movement disorder-post strep connection or if he supports this. Depending on how that goes, it looks like Dr. Kovacevic in Chicago would be the one to help us. Any other ideas? How is your daughter doing?

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 any possible medical issues as behavioral. I've been told many times, "These kids just do these things." It is so frustrating! My question is what are possible PANDAS symptoms in a non-verbal child. Most of my daughter's repetitive, compulsive actions have been attributed to autism and I thought gut issues explained the irritability and rages that come and go. Thanks, Sharon

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, so I'm a bit confused. Are there some kids that respond quickly and do not need to continue antibiotics for a long time? Are IVIG treatments, antibiotics or plasma treatments or a combo showing the most promise? My last questions has to do with finding a doc to help. Do most of you find best success with working with someone that is very knowledgable about PANDAS, or can a doc that is willing to help be as useful? From the journal articles I've been reading, it seems that there are so many different and conflicting diagnosic tests and treatments, including dosages. Thank you for helping me understand this further. Sharon

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