Suzan

Hi, we don't have a pool and go to the YMCA all the time to swim. In the summers my girls swim every day. Yesterday after a few hours at the pool, my dd7, who is a PANDAS suspect but has not had any tics, was having what I would call in my former, non-pandas life, a muscle spasm in her wrist and then her thumb. It twitched for a minute or two and stopped. She didn't notice her wrist but did notice her thumb. Earlier she was saying she could not breath well. Of course I'm a little freaked about it. I'd say she's probably done this before but I never knew to pay any attention to it so I can't say what the circumstances were around it. Does this sound like a tic? Would it last only a short time and not reappear again for the rest of the evening? Right now, I do suspect that she is in the midst of a strep episode and she is on antibiotics. I'm so glad you have found something that seems to be working for your son! That is awesome news! Susan

My Mom forwarded this to me from a newsletter she receives from Zooscape. Has anyone heard of this product before? I'm not suggesting it would take the place of antibiotics but if it's true, every little bit of help counts.... > * Blessed Thistle as an Antibiotic Agent * > > Research has indicated remarkably high antibacterial (bacterial destruction or bacterial growth inhibition) and antibacteriostatic (further bacterial growth inhibition) properties in Blessed thistle. These characteristics are attributed to the active compounds cnicin, polyacetylenes and essential oil contained in this herb. When these compounds act in the body, they help slow down and inhibit bacterial growth, and kill harmful bacteria such as Streptococci, Staphylococci and others. Thus, Blessed thistle can also be considered a valuable agent for the prevention and management of bacterial illness. > > * Valuable Nutrients * > > - B-complex vitamins > - Iron > - Calcium > - Manganese (6) > > * Traditional Uses/Actions * > > - Indigestion/ Digestive disorders > - Hormonal imbalances (menstrual and menopausal discomforts) > - Galactagogue (lactation agent) > - Skin disorders (ie. acne) > - Liver congestion > - Anti-bacterial > - Anti-inflammatory > - Anti-oxidant http://www.zooscape.com/cgi-bin/maitred/Gr...uestc100229/r33

Thank you for posting this. Your story about your son's night time experience really hit home with me. I too experienced the same reactions from friends and doctors about my daughter's separation anxiety, specifically at night. Hearing that Dr. K believes this is a PANDAS reaction really confirms what I believe to be true which is that my daughter has PANDAS. I don't know what I will do when faced with IVIG since there is no way I could ever afford it. I hope something changes soon so that it will be more accessable. I hope to have some proof soon of the episode/strep connection. Good luck to you!

Hi Mommd, I am curious to know who your doctor is in Charlotte if you don't mind sharing that. I am curious about the cardiac link, if any. My daughter has a PVC and I was wondering if it might be related somehow. Susan

Hi Sandy, I don't know if this will be helpful but I thought I'd mention that I had a very hard time myself when I started vitamin D supplements due to low vit. D numbers. I was very low and started mega doses. It gave me horrible headaches and I would feel like I could not breathe. I had to try 3 different types of vitamin D and work up slowly to be able to tolerate it. Now that my numbers are good, I can take any vitamin D with no trouble. Just a thought for you anyway to maybe try a different type or brand? Unfortunately I don't know the differences between what I originally took and what I ended up with. They were prescriptions. Susan

I have been finding a large number of women at my work who are testing low for vitamin D. It's like an epidemic. I have hashimoto's thyroid autoimmune disease and was really helped by getting my low vitamin D diagnosed. I had my girls vitamin D levels tested but they were normal but because of my low D, I don't put sun screen on them unless we are going to be out for long periods of time with direct sun. I find the topic of Vit D to be interesting though and I'll have to read up on these links. Susan

My kids hate it and so far I can't find anything I can hide it in that would get them enough daily. I wish there was a pill that offered the same benefit! We got ours from the healthfood store. It comes in different flavors. I've tried many so far and no luck. I LOVED it as a kid. Susan

Hi, strangely enough I ran across this post this morning while searching for something else so I thought I would post the link... Good luck! http://www.latitudes.org/forums/index.php?...amp;hl=chlorine

Thanks Vickie, you ask some good questions! I don't know about food patterns but I do know I feel it's better and then it will get worse. She'll start to eat all kinds of things and then she'll get stuck on something and go back to all carbs and start eliminating again. She did recently go on antibiotics and I think she had strep but she was not swabbed. Her food issues though started getting bad I think the last time she had confirmed strep in February. Since then, she had strep again and the flu and then this last round of "maybe". I know that the antibody tests don't diagnose pandas but that's where we started on May 1st when I had never heard of pandas before. I don't know this doc well enough yet to know what he really thinks of these antibody tests but I'm gathering so much information to talk to him about after he gets these test back.... Today he drew these tests: AntiDNASE B ASO Zinc ESR (I googled this one and it says it stands for erythrocyte sedimentation rate. It is a nonspecific screening test that indirectly measures how much inflammation is in the body.) CPS - 345-40 - anyone know what this one is? It might be CP5? Thanks to you too for your stories about your son. These stories are helping me feel like I am going in the right direction. Susan

Wow, thanks, it does help a lot to hear experiences. My dd does this too, she hardly eats anything at school. I send her with nuts and chips and a drink. It used to be nuts, chips and some fruit but now she won't eat the fruit and only eats 1/2 the bag of chips. I stopped worrying so much about healthy too and just told her teacher not to worry about it since I was worried enough and to just not comment on her food (they like to tell the kids whether their food is a balanced meal or healthy, etc.) Cyber hugs to you and your dd! Susan

Thank you for your help on this. She is getting more blood work today, I assume more antibody tests but I have not seen the order yet. I hate to get her cultured, she freaks out so badly. But I hear you, I see that we need it. She seems much improved today but we will see. Our doctor is far away which makes it hard for frequent cultures but I see that it is important. I think I will need to rethink where we are getting care. Do urgent care places do 72 hr cultures or just the rapid? I started to wonder if I was a carrier today. Every time I get swabbed I have it but I only get swabbed when I am obviously sick. Susan

Thanks EAMom for suggesting that I repost this on the PANDAS board, I had orig. been trying to figure out if this food stuff was OCD..... I had already received some feedback over there but any other stories or suggestions would be appreciated as I try to figure out what is going on. I was actually starting to wonder if 6 yr olds could be considered failure to thrive yesterday... But she came home and ate well and had a huge breakfast this morning so I am calmed down for now..... DD6 is slowly eliminating anything she will eat. She will get hooked on one thing (hashbrowns, pancakes, rice, pasta, french toast, eggs, chicken, anything) and ask for it breakfast, lunch and dinner. In the beginning, I was so happy that she was eating so much and so happily that I would make her what she wanted. But then I realized after a while, she'd burn out on it and decide whe doesn't like it any more and won't eat it again. She's a carb-a-holic but she's even eliminating junky stuff like chips and popcorn. She's hungry, she wants to eat, but nothing sounds good. She doesn't like her food to touch. She'd rather eat one type of food at a time so she'd eat her chicken, still hungry, eat some veggies, still hungry, eat something else..... There are so many things she doesn't like. When I get lists from people of all the great things you can pack in lunches, easy dinner ideas, etc. I can usually illiminate most of them as things she won't eat. Right now she gets a lof of her nutrition from nuts. Soon she won't like them either. She won't eat chicken or eggs any more. I'm so worried about her. She has lost weight recently and is still under 40 lbs. I got annoyed with her this morning because she would not find anything she wanted to eat since I would not make her french toast (the only thing she wants to eat lately but we were running late). So I got annoyed and she started crying saying "what's wrong with me? Why don't I have any taste buds left?". She was so pathetic and desperate that my 7 yr old and I both started crying. She won't drink any of the protein drinks that I have found that are gluten/dairy/soy free. The one I have is egg protein and it is really good. Other things that seem OCD - she has a "boyfriend" who she hasn't seen in 2 years. His mom doesn't return our calls so I doubt she will ever see him again but she cries that she misses and loves him and she often plays imaginary games that her dolls are the girl and this boy. If she gets something in her head that she wants to do (make clay pots, go to a jump house, go out to eat) she'll talk about it every day, morning and night until we do it. I'm sitting and waiting to hear from our Neurologist about our possible PANDAS diagnosis. The waiting is killing me and I get more and more stressed about things I see in her. Thanks, Susan

I had to laugh about stocking up on a favorite. This happens to us too. I used to get so excited when I'd find something she loved I'd stock up and then spend months trying to get rid of it! Thanks for your reply.... I just got my antibody test results back today. I posted them on the PANDAS board. We are getting them redrawn tomorrow since she's struggling so badly right nowl, he wanted to see some results during what I would consider an episode. She had vag. strep at the end of January and again in February or March. I think she just had it again 2 weeks ago but I didn't have her cultured.... Susan

Hi and thanks for your response! Regarding your gluten question, we had a celiac panel done on her while trying to determine the cause of her seizures. The test came back normal for celiac but positive for gluten intolerance (IgG). She went gluten free in September 2008. The only problem with celiac testing is it can be very unreliable. I still wonder if my dd has celiac. But, she has improved very much on the gluten free diet. I need to remember this as we go along. She used to watch TV all the time and was so tired she could not play. Now she plays and has a lot of energy. Also, she has very bad gas and diarrhea and stomach pain which has totally cleared up. She can't eat a speck of gluten without getting sick now. The story of your daughter and her eating issues does sound very similar. After we went gluten free, she had an increase in the foods she would eat. I really think her food issues did get worse after her last round of strep. At least I know what to look for now the next time she gets it. Tonight I got her to eat a slice of apple, a drink of soy protein milk and a piece of GF/DF pizza. Now she's eating a bunch of popcorn that has dairy flavoring but at this point I'm happy she's getting a lot of calories. We only did a z-pac for 5 days. I don't know which doctor to ask for more. If the neuro is not interested in thinking it may be pandas, then maybe her ped would do it. I fear that I'll end up with no one who will believe me until things get worse. Susan

At that point, she had me tell her all of my concerns so she could take them back to the doctor and then he came back with wanting to retest so we didn't really revisit the 300 mg dose. I will be sure to talk about it again however. She is on some high doses of various supplements based on past testing we have done. She shows signs of malabsorbtion and mitocondrial markers, at least before we found out she was gluten intolerant...... Susan

I finally got intouch with the neurologist's office. The nurse said that all tests were normal except for a slight elevation of what I assume is the DNAse-B Antibody (I had her spell it for me deoxyribonuclease). It was 94 on May 1st. She didn't have the lab reference range but since my dd is 6 I am assuming it's around 1-60. She said they are "not too concerned about PANDAS" but would like her to take an antioxidant of CoQ10, 50 mg a day. I told them she was already taking 300 mg of it a day (prescribed by her ped and it was in her chart there). I let them know that I thought she might have had strep last week and that she is falling apart. He said he wants to take a bunch of blood work tomorrow while she is in a hightened state. I guess here are my questions. If she had strep the last time in March, how might this affect these antibodies 2 months later after antibiotics for the strep? What is the ideal time frame for testing antibodies after a strep infection? If this next round of tests come back normal, do I assume she does not have PANDAS? Then I will have no direction and won't know what to do next. If you haven't seen it yet, will you check out my post on the OCD page about OCD and Food and let me know if you have any thoughts? Thank you all.... Susan

I was wondering if you could help me to understand OCD and how it could relate to food. Does this sound like it could be OCD? I am just learning about it so I'm a beginner! My daughter is 6 and she has always been a picky eater. She is highly gluten intolerant, has sensory issues and behavior issues and is a PANDAS suspect. I have her on a gluten free/dairy free diet since September 2008. She is slowly eliminating anything she will eat. She will get hooked on one thing (hashbrowns, pancakes, rice, pasta, french toast, eggs, chicken, anything) and ask for it breakfast, lunch and dinner. In the beginning, I was so happy that she was eating so much and so happily that I would make her what she wanted. But then I realized after a while, she'd burn out on it and decide whe doesn't like it any more and won't eat it again. She's a carb-a-holic but she's even eliminating junky stuff like chips and popcorn. She's hungry, she wants to eat, but nothing sounds good. She doesn't like her food to touch. She'd rather eat one type of food at a time so she'd eat her chicken, still hungry, eat some veggies, still hungry, eat something else..... There are so many things she doesn't like. When I get lists from people of all the great things you can pack in lunches, easy dinner ideas, etc. I can usually illiminate most of them as things she won't eat. Right now she gets a lof of her nutrition from nuts. Soon she won't like them either. She won't eat chicken or eggs any more. I'm so worried about her. She has lost weight recently and is still under 40 lbs. I got annoyed with her this morning because she would not find anything she wanted to eat since I would not make her french toast (the only thing she wants to eat lately but we were running late). So I got annoyed and she started crying saying "what's wrong with me? Why don't I have any taste buds left?". She was so pathetic and desperate that my 7 yr old and I both started crying. She won't drink any of the protein drinks that I have found that are gluten/dairy/soy free. The one I have is egg protein and it is really good. Other things that seem OCD - she has a "boyfriend" who she hasn't seen in 2 years. His mom doesn't return our calls so I doubt she will ever see him again but she cries that she misses and loves him and she often plays imaginary games that her dolls are the girl and this boy. If she gets something in her head that she wants to do (make clay pots, go to a jump house, go out to eat) she'll talk about it every day, morning and night until we do it. I'm sitting and waiting to hear from our Neurologist about our possible PANDAS diagnosis. The waiting is killing me and I get more and more stressed about things I see in her. Thanks, Susan

Yes, I've only heard of it as bacteria which is why you always need an antibiotic and can't just wait and see if it goes away...... Susan

I think the IgG response is so important to look at and very often is not by doc's. I always wanted to get an ELISA test for the girls but never have. The celiac panel tests do test for IgG for gluten but our initial blood test years ago was only IgE so we didn't catch her intolerance until much later.

By this time she had confirmed seizures. When she was 3, I noticed she would look like she was staring off into space and thought it was strange. By the time she was 4 I could tell that she was "gone" and non responsive during these staring spells. I took her to a neurologist who did a 1 hr EEG and confirmed that she was having hundreds of seizures a day but most not long enough to start giving her physical symptoms (I'd usually see 10 or so a day). She would stare off and move her body in a strange, but subtle, way. Sometimes she'd repeat whatever her last movement was over and over until the seizure was over (7-10 seconds) or she'd just walk off in another direction or try to clime something, etc. We tried medicine after medicine but nothing worked. After about a year of this, after her first EEG, this is when they put her into the hospital. The thing about the video EEG is that they will be able to see what his brain is doing and also see what his body is doing. It helped our doc for him to see the physical things that I was seeing when she had a seizure in conjuction to what her brain was doing. Susan

Although I don't know if my daughters have PANDAS, it seems we are falling into this category somehow with symptoms so I thought I'd post about our allergy testing.... They both had a blood test of the most common allergies several years ago. DD7 was highly allergic to dairy and dust and many grasses and trees. I tried to reduce dust and she's been dairy free on and off since then. Saw much improvement off dairy (dark circles gone, skin less itchy) DD6 had a few minor but nothing to speak of They both have had a celiac panel last year DD7 was negative but I took her off diary and gluten (12/08) and she has a huge improvement in her behavior and her skin (her skin totally cleared up from eczema, itchy...). She says she feels angry and out of control when she eats gluten. DD6 showed positive gluten intolerance (celiac possible but unconfirmed) took her off gluren (9/08)- She's much improved without gluten (no more gas, tummy pain, more energy and participation in life, started growing and finally started losing her baby teeth) but she is still struggling a lot. They both had strep for the first time around 1 1/2 years old. Countless ear and sinus infections and many strep infections. Both had ear tubes put in. DD7 had her tonsils and adenoids removed. She improved a lot after this surgery, sick less, slept better, better behavior. DD7 wet the bed until I put her through a bed wetting program and she finally is dry since the end of 2008. But with each "better behavior" improvement, something always seems to set us back so here we are.... I think we'd be much worse off without the dietary changes. Susan

I've been reading about this product as well to reduce brain inflamation... wondering if anyone has any experience or thoughts..... http://www.lutimax.com/ http://www.luteolin.com/health_benefits.html

My dd had a 48 hr video EEG for her seizures. She has fond memories of the experience (really she does!). We just hung out in the hospital after getting all the wires connected to her head and she got to watch TV, play, have visitors, etc. while I watched for seizures. Each time I saw one I pressed a button to mark it on the tape. We go back for a 1 hour soon and she's bummed that we can't stay over night, LOL. Anyway, good luck and I hope this helps find the answer for you guys. It did help us find the right medication mixture to stop her seizures and she's been seizure free for over a year now. Susan

Really great article, thank you! It is helpful for me as well as my kids since I often think of having a beer or wine around 3:00 in the afternoon. It always bothers me, why does it pop into my head, what's wrong with me, am I totally stressed, etc.! I think I'll up my serotonin and decrease the nutrisweet and see if that goes away! susan

Well, I am glad that everything is good for him now. How do you feel about the diagnosis? I'm glad you have a plan with the meds. I'll be watching to see how things so in case I need to switch doctors or go back to Dr. N. for a second opinion! Susan