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mar
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Everything posted by mar
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pyroluria test -- how do you get it
mar replied to smartyjones's topic in PANS / PANDAS (Lyme included)
Thanks for the info. Mar -
Did eliminating certain foods reduce tics?
mar replied to Claire's topic in Tourette Syndrome and Tics
Did she have the ige or the igg (sensitivity)? A lot of things showed up on the sensitivity blood test for ds and that's where I started. Mar -
I am just curious here. I have been reading about being rh negative since I myself am and both of my children are. From what I have read it seems that rh - people have more copper in there blood and less iron. Is anyone here or their children rh negative. Mar
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pyroluria test -- how do you get it
mar replied to smartyjones's topic in PANS / PANDAS (Lyme included)
Coco I would like to get the info for the test without the doctors signature if you are able to locate it. I do recall there being a place but will research also. funny how I was just reading up on this today. Mar -
Kimballot thank so much for replying. Ds does have a yeast allergy and this has been making we wonder if this reaction has something to do with it. I did give him a dose of culturelle kids it's lactobacillus gg I billion cells this morning after he had anibitics last night and he had the antibiotics today at 6:30 and gave him another dose of probiotic two hours later. This is the only one I could find b/c of all his allergies. But it's weird b/c he acts different in the bad way every time he is on antibiotics. It kills me to put him on them because i always felt the yeast is making him worst. And like I mentioned we definetly noticed before we had him on yeast diet these past couple of years. Interesting. Please let me know I'd there is anything else I could be doing. Mar
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Have a quick question. It seems that when dd son is put on antibiotics he acts differently. He had 1st dose last night and today at 5:30. So he is constantly putting his fingers in his mouth. It's either he is sucking on them or making poping noises with his mouth and fingers. But it's driving me crazy b/c I worry about dd. his fingers are in mouth and then touching everything. He was on the ground rolling back and forth through the living room once and I ask him why he is doing this and said it feels good. I dont know but it seems being on med makes him flare more. He is still doing the look with his eyes to the side. I should say that he does these thinks more when he is bored. If you start talking to him and he keeps busy he seems a lot better. He likes to interact and when left with having to figure out what to do then this behavior occurs. So basically I don't see a change when put on antibiotics. I also recall in the past when he was much younger DH would say every time he is on antibiotic he acts different. He is just more all over. Mar
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Am sorry but I am bad with my typing on the iPod. This was mar and not mat
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So because of DH having tics I always though ts. But here is another example. Ds has been doing well with his diet and tics and attitude . He got strep high fever on oct 31 2011 positive strep. Is doing well was put on ativiotics. Dd had strep on 2/15/12. Within a week ds tics got high and seems different. Stupid me did not do anything with him. Tics got better. Dd did have sniffing tic for several weeks after even though she was not congested during strep just high fevers of 103.5 for 4 days. Ok so Sunday ds looks pale and tired. By Monday is having tics with eyes looking sideways. Mentions them to me so I know they are bothering him. I can tell he is either reacting to some type of allergy or strep. Comes home today and said throat hurt. Took him in and has strep. I am starting to see a connection with strep and tics and anxiety. Dd has been acting hyper but then again she is always like that but I do think it's worse. I think she is add. Interesting. He is on 5 day athirst. Let's see what happens. Mat
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So sudden you just made me cry. Your situation sounds so much like my ds that it's scary. Back when ds was 7 1/2 ( he just turned 10) . It was August/ sept and he came down with lots of tics and anxiety that went along with it. He would ask when dad will be home and watch the clock and say he is late ( 1 minute) and gk on saying from there that he might be in a car accident. I would constantly reassure him but that didnt work. I started putting paper in front of the clocks so he wouldn't look at the time. Then driving to ccd he would ask who is picking up and are you going to come in ( some parents pull up) what if you get into car accident and are not there. Constantly reassuring someone will bd there. Going to bed at night wanted his pillows a certain way and if I moved one of his CCDs he would want it moved back to where it was. He seemed very depressed. I would take them to the park and he would sit next to me on the bench and didn't want to play. He was 7 and I found that very unusual. He also just found out he is allergic to dogs and a bunch of foods so I though this was to blame. He LOVES DOGS, so his world was crashing. We got home from park and cried in my arms saying its hard to be a kid. We cried together. He looked pale at this time eith bags under eyes. He had phobias and panic anxiety. Was doing headstands and twisting head/neck in weird yoga poses. Was always falling to the floor. Was spinning and moving and getting to the floor. Had raging moments . St one point hit dd outside and when I brought him in hr screamed at the top of his lungs and when he got to his room he said I hate him and that he can't stop being made. We hugged and he just cried. Things have gotten better with diet. I do see some issues occasionally but more mild then before. Mar
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What does yeasty diapers look like?
mar replied to Thinkandreceive's topic in Autism Spectrum Disorders
From what I was told I thought you had to eliminate all juice and candy or anything eith sugar. With dd she was having major meltdowns ag the time. Would throw herself on floor and sream for candy. She has gotten better because we limit it well but when she gets sugar in her system She is a different child. If u are trying to fix yeast all sugar needs to be eliminated from what I have heard. Mar -
Familyof 5 I have followed your posts with the mold and always though not a problem here. Well this was a shocker. We bought our home 10 years ago. It was just built when we moved in. So several years ago when ds was going crazy with allergies and all I would say to my DH maybe there is something in the house. I always had this feeling about mold. It might be from reading your posts. Ds felt better over time with what we were doing so I kind of got off the mold thing and assumed I was crazy. Ilways looking for something to blame. So last fall DH went into neighbors attic to look at some vents for him and ds wanted to look on our attic. DH was like no forget it and I was like key him look for crying out loud so he would stop talking about it. When I got up and looked I almost passed out on the ladder. I seen black on several pieces of wood. I told DH its mold and he didn't believe me once again. Thought I was crazy!!! Once everything stopped screaming inmy head like crap!!! I felt like I always knew but in a newly built home with no water damage??? As I started researching and several mold companies came out it seems that the wood was wet when built. The mold is not growing. We are having it fixed on Monday. Just goes to show you that you never know and thanks to ds urgency to see the attic. So my world crashed once again but I keep chugging along. I remember reading your posts and thinking j would die if it happened to me b/c ds is allergic to mold and all the other things that go along. You have to keep moving and not let all the setbacks crash u down. I was devastated but have to keep my head above water. Mar
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I am curious about tonsils being removed and strep. Dd and ds get strep about 2 to 3 times a year from what i know ( where it was positive). I'm curious if getting this done helped your children from getting strep. Was it worth it? I was thinking about this route but only if it truly helps. I had strep a lot as a child and was going to get them out but my mom backed out b/c she was afraid. I only had strep a couple of times as an adult. I know someone who got them taken out b/c o constant sour throats but ended up getting sour throats after. So don't want to put ds through this if it doesn't help. Mar
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I came across another mother's story
mar replied to TessaKrista's topic in PANS / PANDAS (Lyme included)
This is really interesting. I keep my kids far away from candy. The only thing they have occasionally is ginger snaps and glee gum. But yes dd gets wired with sugar. It is definitely a different type of energy. I can totally tell by the look in her eyes and face. Can't try the chocolate since they both have milk allergies so the result my be conflicted. But dd shows sensitivities to cocoa. When dd has two many motts freeze pops that we get from Costco (thanks to the neighbor who thinks they are being nice b/c they have something she can have, but I give 1 or 2 on hot days and find out she had three more over there) she gets very emotional and wired. She keeps asking for more and when I say no hello tears and breakdown. She needs to be brought in at times to calm down. Thanks for the info! Mar -
Yes tags had to be cut out of ds shirts a couple of years ago also and he would not wear a winter coat at the time saying it makes him look fat. He would cry and throw lots of fits every morning till we got him one of those warm zip ups with the fur inside. It was pure torment on both ends. He would not wear jeans. As he got better round two came on with dd. she would say the same thing about the coat but I would wonder if she picked it up from ds. She has listened to her share of arguments b/t ds and I. The jeans came next. I was more knowledged and prepared this time around. But what's different about her is the forgetfulness and being very impulsive. Ds was never impulsive . He usually thinks twice about what he does. He is more of an analyzer like me. Chemar you mentioned forgetfulness could be add what about impulsiveness. How do you realize which could be Sid and which are add. All these disorders kind of sound alike with certain issues. Like add and impulsiveness are found in Sid. They say to not treat add before you figure out if its sid. From what I have read it seems that a lot of children diagnosed with add have Sid. Also impulsiveness could be a sight of Sid and add. I know that dd and ds have Sid symptoms but is the add completely different or a part of this. I was playing scrabble with dd yesterday and she was constantly moving and making noises and just all over. When I ask her if she could relax and play she says i am sorry I have a lot of energy. I tell her that's fine I wish I had all your energy. On a last note it's funny but Ds would give you that slice of cake if you asked nicely and really needed it while dd would probably rip your eyes out for that slice. Mar
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Sorry also wanted to add this in which boggles my mind. I picked dd up from school so I can carpool ds home from techlogy Club. This is once every two weeks. She knows this and after being home for 10 min with her we head off to pick ds up. Half way there ( 5 min ride) she asked where are we going? Seriously??? Then she says ah yeah I remember. Why does she always forget. Mar
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So dd is putting on shoes and saids she thinks there is a wood chip in her shoe. She pulls out the smallest rock ( like a tiny bread crumb) and saids " seriously this is what felt weird". I say it felt like a wood chip? She said yes but laughed about it (amen). When she comes home from school she saids that the rainfall outside distracted her from thinking. I asked why and she said she doesn't like the sound. A year back if it rained as I am taking her to school she looked real sad and said she does not like rain. It makes me cry. are these Sid symptoms.
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I would defiantly look at diet. Dd is very impulsive. Has gotten better over the years I think but we try to limit sugar as much as possible. She is milk and gluten free also. When we gave her some cheese weeks after being off dairy she bounced off the walls. I was actually scared and amazed at the same time. She was flying in every direction. Summer is also harder b/c they want ice cream. I get these Mott freeze pops and when she has more then one she is a different person. She wants more and goes through emotional breakdowns and is more hyper. I would defiantly look at diet before meds. Mar
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Do you think it's ok to just search for a ot or do I need to go through the ped. Does anyone know anyone good in Illinois? Mar
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Last spring my son had the spitting tic. It was definetly a tic b/c he would do it constantly. He never did it in the house but the minute he went out he would spit. Then the younger boy he plays with started doing it b/c he tends to want to act like my ds. Sowe had two spitting throughout the spring. I associated it with his spring allergies. I didn't mind it as much b/c was better then him having a facial tic. And it looked more like boys will be boys. I also knew he couldn't control it. It became a habit I guess. Though at times when I'm talking with a group of adults and he just sits there Spitting I was hoping he would stop. I also got into an argument with the next door neighbor (husband) b/c he would constantly tell him to stop. His wife is really nice so I felt bad. But his son has aspergers from what we can see and I never once over the past eight years have made any comments about him coming up to me and grabbing me in inappropriate places. I would move aside and would listen to what he wanted to tell me. I knew he couldn't help it. so protective mother went into defensive mode and let him have it. I blamed it on my ds allergies and said he can't control it and told my son not to go on his driveway. We don't speak much anymore but but if I don't stand up for my ds who will! My ds actually had a smile on his face b/c he was happy that I stood up for him. Every time he would comment on my sons spitting I could tell it made my son nervous b/c he couldn't stop. So that was the day d/s realized I had his back and he loved it. Mar
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The books are on order. I have read probably over a hundred replays to this condition. A lot of them are real bad and mentioned autism. So a lot have mentioned issues at school. So far I have not had any phone calls from school from issues. Thank goodness I try to lay low. So last week when I found out about spd of course ds the next day out of the blue says his head hurts while doing hw. He said his head always hurts and feels funny when doing homework. He has never mentioned this before. Of course something else for me to stress about. He has been doing well with grades thus far and his teacher mentioned that he takes longer on exams but finishes in time. He is very disorganized. So what is up with the headaches. Also he received a study guide today for test that is tommorow and I was annoyed b/c he had no time today with religious Ed and baseball. Anyway he tells me that they received one Wednesday but his teacher talks to fast and he can't write the answers down In time. So it is his fault for not getting it earlier. When I ask him to study he gets upset. He hates preparing for a test. It's torture. I feel like I am torturing him when I tell him to go into another room to study. Why is this and is their any easier ways to deal with hw and studying. He also constantly bites on his pencils and saids his teacher thinks its ok. He also sucks his shirt a lot when doing hw. Could this have to do with spd. He will also at times just fall to the ground . Crash into things b/c it's fun. But my main concern is school work . Does anyone else notice concerns with hw and exams. Hole Says
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I am on amazon to order the " out of sync child". They also have "the out the sync child has fun" , should I get both? Are they completely different? I would like to get this ordered asap if anyone knows about the second book. Thanks!!
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I posted recently that dd has not worn jeans in over a year. Well my typical " it would be a lot easier to pick out an outfit if you could wear a pair of jeans". I went throught this with ds for over a year when he was 7-8. So seeing this in her broke my heart. She didn't like the felling and would just sit in front of her closet and cry. We did leggings and skirts for over a year. During this time I would have her pick her own clothes. I would mention the jeans issue every one in awhile. I knew ds got past it and was praying that she would. So Sunday morning I mentioned jeggings and she actually wore them. At the end of the day she said they didn't bother her and was happy. Monday morning I ask her to go get dressed and she comes out with a pair of jeans on and asking if they are floods. I was so amazed!! They were close to floods but i didn't care and she went to school. I worried on how she would feel during school but I think it went ok! Seeing the look on her face that night telling me that she did it and it didnt bother her was awesome! I know this may sound silly but my dd wore jeans!!!!
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My DH has OCD and both of my children show signs. DH says he never has dreams. One in a blue moon he will recall a dream but pretty much never recalls dreams. Both the kids don't recall dreams either. Once again once in awhile they will menion a dream but not even 1 a week or 1 a month at times. I will tell them about my dreams and they always wish they dreamed more often. I was also curious about this. I dream constantly and always wondered why they did not. That's interesting.
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When my kids spin they do get dizzy. Ds has crashed to the ground before and that scares me b/c i don't want him to bang his head. they would both look at me during these times with their eyes crossed and say it feels good. I have been reading up on sid and it is very interesting. I truly believe this sounds like my kids. They are 10 and 7 now. I am just wondering if therapy truly will help. We have crazy insurance so I don't think it would be covered. I was just wondering if it's worth the expense. If it really helps.
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I would really love to see this clip. I can't get it to appear. Even when I log into Facebook it said that it is no longer available or I don't have access. Is there anywhere else I could see this?