

trggirl
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Everything posted by trggirl
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Faith, Bilirubin is an indicator of liver function. The liver processes bilirubin, so if the bilirubin is elevated that could mean the liver is not processing correctly. My daughter does have focus/attention problems. As a matter of fact, your post quite some time ago about your son and his homework could describe my daughter.
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Faith, My daughters manganese was elevated on the hair samples and then her blood test showed an elevated bilirubin. AST and ALT were normal though. After doing much searching, I could not come up with anything. I hope someone else chimes in.
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Looking forward to hearing what happens.
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Thank you so, so much for posting!!!!!! I love hearing stories like this!!! Do you mind if I ask if your son had attention problems???? How about oppositional behavior problems? Minor or major ones? If so, were those issues helped with the antibiotics? Tiffany
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Please let us know what happens when you do it again.
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We had the exact same problem two weeks ago. We ended up using the Lidocaine cream and she did not feel it at all. She was very, very scared for this blood draw but said she would probably not be scared next time.
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Faith and EAMom We are not on antibiotics prophylactically. I am seeing a doctor for the first time regarding PANDAS tomorrow. I got the name of the doc from this site. I am not sure my daughter has PANDAS, but she did start ticcing for the first time three weeks after strep last year so I am going to follow this route for the time being. Yes, I was the one whose daughter talked excessively. She still does. And our homework sessions are almost EXACTLY like you described in one of your posts Faith.
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Faith, Fish oil and any food with added omegas and flax cause her to tic. I found that out the hard way last year. A few weeks after she started ticcing last year, the teacher told me she was having trouble focusing at school. I immediately ran out and bought some fish oil and some foods with supplemented omegas and flax. She went from ticcing to almost convulsive-like movements. I stopped the fish oil and she went back to regular ticcing. I was really hoping that IF it was PANDAS and we treated, the focus issues would be helped. It is really starting to affect her in every aspect of her life. Some kids were calling her stupid at school the other day. It's just heartbreaking to watch what these kids have to endure. EAmom - My daughter is taking Ibuprofen now because she had strep throat this past weekend and is still not feeling well. I will definitely give it a try when things are back to normal to see if it helps.
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So treating the PANDAS will not help the ADHD in some cases??
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Bronxmom2, please, please post if you come up with something.
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Hi EAMom, I don't have a diagnosis of PANDAS yet and I am not totally convinced she has it. We are seeing a doctor Thursday. Interestingly though, she came down with strep this past Saturday and she is now having her first motor tic in a very long time. So it is looking more and more like PANDAS. I am glad to hear that the focus should be improved when the PANDAS is treated. In so many ways, she does not fit the typical ADHD profile and her teacher says she is not like other ADHD kids she has had in the past. My daughter remains a puzzle to her teacher. The teacher has told me she just can't put her finger on what the problem is, but there is definitely a big problem. When I read Faith's description of their afternoons with homework, that is exactly what we go through. It is tough. I just wasn't sure that clearing the Strep would help the focus problem or would damage have already been done??!! Thank you for your input Suzan and Meg's Mom. I truly appreciate it and it gives me some hope that this can be beat.
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Thanks Cheri!
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I am still in the initial stages of learning about PANDAS. We have an appointment with a doctor next week which will hopefully help. After having gone through tics after a strep episode as well as some other symptoms, my daughter's main issue right now is focus along with excessive talking. If it turns out that she does have PANDAS, do the antibiotics help with focus or do I still need to be looking for natural treatment to help with that?
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Cheri, I know you have mentioned that your son has to take the methylB12 rather than regular B12. What happens if it is the regular B12?
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Thank you for posting this. It is so helpful to hear how supplements affect people.
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Thank you, thank you, thank you!! That is exactly what I need!
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Does anyone have suggestions for a doctor that has experience with PANDA'S in the Houston area? I think it is time to find a new doctor.
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SF Mom, thank you for all your information. It is truly appreciated. I will definitely update!
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SF Mom, I am headed over to the PANDAS forum now to start reading. Thank you!!
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Faith, we are doing our testing through a Chiropractor. My daughter started ticcing in the fall. When I first started these changes, it was in the springtime. To go into more details, we got the results back from the chiropractor (using neuroscience for the neurotransmittor testing) and he and the company suggested Calcium, Magnesium, and Zinc. We gave the Lactate version and it did not agree with her. After reading about tourettes and muscle contractions, and knowing her Calcium and Magnesium were out of balance, I really felt she needed the Magnesium. I know I am simplifying the whole thing, but if you look at a muscle contraction, Calcium contracts and Magnesium relaxes. So, I decided to cut the dairy due to the high Calcium content and added spinach every day because it was high in Magnesium and my daughter loves it. Keep in mind, I was just experimenting to see if anything would happen. Amazingly, vocal and motor tics stopped completely after doing this for two weeks. Summer then arrived. I knew my daugher was thoroughly sick of spinach so my goal was to try another Magnesium supplement. That is when I started the Kids Calm. The motor tics have not returned, but the vocals came back. It is so frustrating to me because I really feel that something in the spinach stopped the vocals but clearly, it was not the magnesium which was my original thinking. There is another experiment that I did this summer that you might find of interest. My daughter has a focus issue. I started reading about Lecithin increasing Acetylcholine which is good for focus. I read somewhere that Norepinephrine is a noisy focus (lots of static) whereas Achetylcholine is a strong focus. That makes total sense to me when I think about my daughters personality and learning style. As I mentioned, she has an amazing memory, but she gets distracted and has a hard time focusing to use the memory. For example, at home when it is quiet, she is fast as lightening at doing her math facts. At school though, her math grades are all over the page because she hears a noise that distracts her. The teacher is constantly sending me notes home to work with her on this or that but when I do, my daughter knows the material amazingly well. She just doesn't display it at school because there is too much going on. Anyway, back to my experiment... I was nervous about supplements so after reading about Lecithin, I saw that one egg contains close to 300mg of Lecithin. I decided to give her three eggs a day (900mg lecithin) for about a week just to see if anything would happen. She also loves hard-boiled eggs and I was more comfortable with giving eggs than giving the supplement. After about 4 days, my husband and I were amazed at her focus. For the first time in her life, she sat at the dinner table through a whole meal without me having to remind her to sit. The bad news was that her tics started increasing. So, something in the eggs helped her focus and something in the eggs caused her to tic. My thinking was that the Lecithin helped the focus and the Omegas caused the tics, but I finally tried the Soy Lecithin and I think it made her tic. I quit it quickly but may try again later just to make sure. You mentioned dyslexia. I don't think she has dyslexia. She reads fine. She just has to say a sentence or word over and over. I think I have read that it can be an OCD thing but I really don't know. SF Mom - My daughter did have strep three weeks before the tics started. Originally, I was convinced it was PANDAS, but I had her strep tested and sent the culture off to grow and it came back negative. I will definitely check out the PANDAS threads and the PANDAS site though. Anyway, still lookin for suggestions. I feel like I need something to calm and relax her brain. I just don't know what.
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Hi, My daughter started ticcing last October and I was thrown into the tourettes world. After reading and reading, I found a doctor that did Neurotransmittor testing and hair analysis. This is what came back: Hair: Calcium was off the chart high. Magnesium was high, but just slightly (the ratio between the two was way off because of the high Calcium) Sodium, Potassium, Iron were all a bit low. Copper was normal Manganese was high Chromium and Selenium were low The only toxic metal that showed up was Aluminum and it was not terribly high. Neurotransmittors: Norepinephrine was off the chart high Serotonin was a bit low Dopamine normal Epinephrine normal Gaba a bit high Glutamate a bit high histamine a bit high I started her on Kids Calm 85mg, I stopped dairy completely, and I just kept a watch on the Calcium intake. She still gets Calcium from diet, I just don't let her eat food with high Calcium. The motor tics have stopped. The doctor is trying to find a Calcium source she can tolerate because she needs more for a growning body. The problem is that when I increase the Kids Calm dose, she gets OCD tendencies. Anyway, we are working on that, but fortunately the motor tics are gone for now. Our problem is the focus and excessive talking. She has an absolutely fantastic memory, but she can't sit still and focus long enough to do any school work beyond just straight memory. She struggles to read a book. She will say a line over and over and her body is just fidgeting while she sits and reads. She can't stand it for long. It is like an internal restlessness that won't let her relax. And her talking....oh boy! She can't stop. From morning to night, she talks and talks. It is really getting her in trouble at school and is hurting her socially because she won't stop long enough to listen to friends. I would almost say it is manic-like but she never experiences downs so I don't think she is bipolar. Anyway, I am looking for some help. My gut tells me it stems from the high Norepinephrine and when I look at that metabolism, it is usually B12, folic acid, Methionine, and SAMe. I just don't know where to start. Oh, forgot to add that she is having some vocal tics. She says "yes, yes, yes" over and over. And she has been sniffing for several months Looking for advise! Please help!
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Hi, I did want to mention that Omega 3's cause my daughter's tics to go from "barely noticable" to almost convulsive like. Just an fyi.
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Hi, I will be watching this thread closely. I have been a lurker since October and I'm now ready to jump in. I started Magnesium Lactate last week on my daughter. Besides fish oil which was a disaster, this was the first thing I have tried. Two days later we quit. She was definitely getting worse. I know you asked this, but I am also curious if some Magnesium will work and some won't. I feel your frustration. So sorry.