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tylermom

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  1. Thanks everyone for the responses. I figured his sudden onset of OCD, rages, and just plain horrible behavior was from the fifth disease. I sure hope this stuff goes away soon.
  2. My ds has had an OHI for Tourette Syndrome since he was in K. Now we are pretty sure that what he's had since 18 months old is not TS but PANDAS. The school has fought me tooth and nail and I finally decided to homeschool him for 4th and 5th grade. This past year he wanted to go to school because he would be going to a middle school. It's been AWFUL. This is a public school not private and it's in a good district. The 6th grade counselor started calling me the 2nd week of school because he was not focusing and already having F's on papers. By this Jan. the counselor called me to ask me if he had seen a neurologist before. WTH of course he has he has a DX of TS where does she think we got the DX from. These people are so stupid. She then decided to tell me she thinks my ds has a brain tumor. I asked her on what basis is she getting this from. She says because he is forgetful. OMG..I called his pedi office and talked with the nurse. The nurse could not believe that a schools counselor would come up with this mess. She talked to the dr. and he said he couldn't believe that she would be saying this about my ds and he said of course that my ds does not have a brain tumor and the forgetfulness is due to the ADD. The counselor wanted him in resource math class. I did not want him is this even though he was struggling in 6th grade math. I know from homeschooling him that he just needs 1 on 1 help and needed them to actually do his modifications in the class and send him to content mastery for extra help. They were not doing any of this. He went a whole 6 weeks without having one of his modifications done. The counselor wonders why he was doing so bad...HELLO do his mods and maybe he will do better in class. So they put him in R-Math and the teacher is horrible. She tells all the students in the class that the reason they are in the class is because they are not intelligent enough to make it in a regular classroom. She then tells them all the time how stupid they are if they don't understand a problem. I finally had enough and my dh and I went and had a conference with her and the 2 principals. She admitted that she talks to her students like that and she said that my ds is going have to get "tough skin" because when he gets in high school it will be worse. I couldn't believe my ears. What in the world has these public schools come to. So needless, to say we'll be homeschooling again.
  3. We do not have an official dx of PANDAS but the pyscologist thinks that both my boys have PANDAS. My 3 year old dd came down with fifth disease Easter weekend. Apparently it's going around my kids elementary school because the nurse sent a note about it on Wed. My 3 y/o does not go to school. My 6 y/o ds who i'm pretty sure has PANDAS came down with the bright red cheeks two days ago. That's when his PANDAS symptoms came out in full force. He is not having tics just horrible OCD and is very defiant. Even his teacher noticed a changed in his behavior the past few days. Can fifth disease bring out the PANDAS symptoms??? If so, when will the symptoms get better? The OCD is so bad that if things are not like he wants them he is yelling and screaming at us. I know fifth disease if a viral illness so i'm sure antibiotics would not help things. Is there any natural supplement I could give him? Jen
  4. I have always wondered if vax caused both my boys PANDAS symptoms. My oldest ds at 14 months old would bang his head constantly on me or walls or the floor, etc. Then he had his 2nd MMR and chicken pox vax at 17 months. At 18 months is when his first tics appeared out of no where. The OCD also started along with the tics. He was a perfectly normal baby and once he started getting vaxed at 2 months old is when all his illnesses and allergies started. Now his is almost 12 years old. Still has PANDAS/TS symptoms but is very healthy other than allergies. I have 5 dc and all of them were perfectly healthy babies at birth and once they got vaxed at 2months started having colds, allergies, ear infections. I have vaxed my 10 months old at 2, 4, and 6 months but I don't think i'm going to get him his MMR and chicken pox. I really do think that all these vax are messing up our dc's immune systems. Of course try to tell the pedi that and look at you like your a one eyed monster.
  5. My oldest ds was dx with TS at 2.5 years old and my 6 year old ds was dx with a tic disorder at 4 year old. I have wondered for along time if both kids have PANDAS. My oldest is 11 y/o and will be 12 April. He still has tics but the OCD seems to have got better. My 6 year old hasn't had a motor tic in over a year but has severe OCD. I do think my 6 year old has coprolalia. He will say inappropriate phrases which has to do with potty talk (fart, poop, etc.) he will scream this out at his kindergarten friends when i'm picking him up at after school. He says these things at inappropriate times and has even told me he wishes he could stop it but his brain tells him to say it. So it sounds like a vocal tic to me. My oldest ds's tics started on Oct. 23, 2001. He was 19 months old. He had been to a family reunion in a rural area that day with my inlaws and 2 hrs after he came home his eyes started rapidly blinking and his head was jerking. It was clearly a tic. 10 years later he will still get these same tics. He had never been dx'd with strep throat at that time. He did have illness in his 18 months of life. Lots of ear infections, RSV at 9 months old, stomach virus' and common colds. He also started having OCD symptoms like lining up toys, books, etc. Freaking out if the toys were moved and having severe temper tantrums that could last for hours. I've researched about Lyme's since he had been in a wooded area right before the tics/OCD started. He has never had a tick seize up on his skin. So I really do not think it's Lyme's. I can't really recall a date when my 6 year olds tics/OCD started. I do know that when my 6 y/o ds was 4 months old he had his first documented strep throat infection. At that time I had 3 kids and all three tested positive for strep. My dd who is 19 months younger than my oldest had strep throat so much that she had to get her tonsils out at 7 years old. So both boys have been around strep a lot. Also, my niece and nephew whom my children are with all the time also have had lots of strep infections and my nephew had kawasaki disease 5 years ago. From what I've read about that it has something to do with with strep. My niece also has a tic. 2 years ago she suddenly developed a coughing tic along with a head jerk. She's went to dr. and dr. and had so many test, chest xrays, etc. She also has severe anxiety and OCD. The dr. says it's a tic from anxiety. I feel like she probably has PANDAS as well. I'm at my wits end and want to find out whats wrong with both my boys. Both struggle in school. I actually had to homeschool my oldest one for 2 years due to academic issues in school. He can't write and was dx with visual perception problem and has severe math problems. He wanted to go back to school this past august and it's been a train wreck. He's having tics, rages, failing everything. He does not have rages at school only at home. My 6 year old is failing kindergarten. I work with him daily and he can't retain the info that he learns. My oldest has this same issue with retaining info. Both boys are behavior problems at home. They scream at one another constantly, fight one another, etc. This is not your normal sibling rivalry. I want answers. Please if you all can let me know what lab work that I could ask the pediatrician to do for my boys I would appreciate it. Their dr. has suspected PANDAS but has not actually done blood work for it. He just wanted to send them to TExas children's hosp. to get tested. It takes 1/2 year to get into dr.'s at TCH. I want answers now. Thanks and sorry this is so long. Jennifer
  6. My niece is 9 years old and has been having a coughing tic for about 8 months. Both my ds's have tics. My oldest is almost 11 and he started having eye blinking and head jerking tics at 18 months old and was dx'd with tourette's at 2 1/2 years old. My youngest ds started having tics at 4. both of my boys have mild tics and i think that both of them could have PANDAS. my oldest had eye blink tics a few month ago and was put on antibiotics after having a mole removed just for precaution 1 day after being on the antibiotics the tic went away and he has been tic free for 3 months. we have a family history of tics my dad has a throat clearing tic, cough tic and picks a spot on his forehead all the time. i also had some tics when i was little. so for my niece to have a coughing tic is not really a huge surprise since it runs in our family. however, her parents refuse to believe that its a tic. her pedi dx'd her with asthma and she was on breathing treatments, inhaler, cough med and the cough did not get any better. in fact it doesn't even really sound like an actual cough it's more like a sound that just resembles a cough and she puts her hand in front of her mouth so it looks like she's covering her mouth. she has now started going to an allergy/asthma dr. who ran allergy testing on her last week. she was not allergic to anything. he also did sinus and chest x-rays on her and everything came out clear. she did faint during the allergy testing and the dr. was called in to see if she was ok. he noticed that her hands were sweaty and he said he thought it was anxiety. she also has panic attacks all the time where she feels like she can't breath. the dr. said he though this was anxiety. the dr. told them to not give her anymore breathing treatments or asthma meds because he said he did not feel this is what she needs. my brother and sister in law are still giving her the asthma meds and breathing treatments because they refuse to believe that this is a tic. several family members have told them this sounds like a tic and they refuse to believe it. today they took her back to the allergy dr. and he told my brother that he thinks it could be a tic but that he wants to rule out reflux. he also gave her one last cough med and if this doesn't work then he wants to see her back in 2 weeks and wants to go down her throat to see if it's reflux. i'm wondering if it could be PANDAS or TS. her and her brother have strep all the time. her brother had kawaski disease 3 years ago and from what i've read that can be caused from strep. she's also having weird thoughts. a few months ago she was having obessive thoughts about killing her mother with a gun. she told her mom that she couldn't quit thinking about how she wanted to shoot her mom in the head with a gun. she told her mom "i love you mom and really don't want to kill you but i can't keep thinking in my mind how i want to shoot you in the head with a gun." she also was apparently having thoughts of doing this to other people. she also was having thoughts about wanting to have sex with a kid in her class. she's only 9 and knows way too much for her age. her home life is not that great either. her parents fight all the time and cuss each other out. they cuss at her and her brother. it's a very chaotic home. she's constantly nervous and very hyper. her teacher calls her parents all the time because the teacher says her cough is disruptive to the class. also, the kids at her school are making fun of her because of her chronic cough. this is the first year (3rd grade) that she is saying that she hates school. i homeschool my children and she is always telling them how lucky they are for being homeschooled. i feel so sorry for her. she was at my house yesterday and i think she coughed none stop for the 2 1/2 hours she was here. the cough also seems to get worse when she's excited. christmas eve was horrible for her she coughed nonstop and was saying she couldn't breath and having panic attacks. let me know if this sounds like PANDAS or TS. i'm hoping her dr. will get to the root of this soon to give this poor child some relief.
  7. yes, i have been bit by tics several times in my childhood. they would attach to me and my mother would have to pull them off with tweezers. we went camping a lot when i was a child and from what i can remember the tic bites that i would get happened when we were camping. i have lived in southeast texas all my life. we used to camp in east texas, central texas, southwest louisiana and we went a few time to arkansas to camp. my husband's parents have a camp in western louisiana that we go to all the time. i have been going there since high school when my husband and i met and our kids have been going since birth. my oldest ds started having tics at 18 months and it happened a few hours after coming home from the camp house. i've always wondered if it was something there that triggered the tics. none of my kids or myself or husband has had any tick bite that we know of from going to the camp in louisiana. it's in the thick woods so i'm sure there are ticks. my in laws have 3 dogs and they always bring the dogs to the camp and i do remember a few years ago when the tics were a problem. the dogs were getting 20+ tics on them. that hasn't happened again. i read the article and i do have some of the symptoms as well as my kids. i do remember as a young child having "tics" but i just thought it was a habit that i had developed that was hard to break. i had stomach aches all the time and anxiety problems until the age of 22. i was also sick all the time as a child especially with strep throat. my dc have lots of the symptoms listed. my kids are really not sick all the time other than my dd having her bouts with strep throat. since the tonsils came out she's only had 1 strep infection. my daughters main symptom her whole life has been severe fatigue. my boys main symptoms are tics, OCD and behavior and learning problems. jen
  8. my dd is about to be 9 years old, she has been having bouts of fevers and fatigue for since she was 2 years old. she's had strep throat multiple times and two years ago we had her tonsils removed. she done much better since the tonsils have been removed as far as the strep goes but she is still tired all the time. this past week she had her first strep infection since her tonsils were removed. i took her to the dr. last week and i told him about her chronic fatigue and i also told him how her previous pediatrician had tested her 2 years ago for epstein bar and it was positive. i asked him if he thought that the EBV could be causing her fatigue. he said it would very rare since it's been two years that she tested pos. for EBV. now when she tested pos. 2 1/2 years ago the pedi that tested her only tested to see if she was pos. for it, she did not test to see if it was an active case of EBV. so this new pedi said he could order a blood test that would test to see if the EBV is still active. we just got the results in today and the EBV is active, her white blood count was low it was 2.2 and should be at least 4.5, her liver enzymes were elevated and her ASO titer was 1000. the nurse called me today and said that the pedi want my dd to see a pediatric infectious disease dr. to find out why she is still testing pos. for EBV after 2 years and since she's been tired for 7 years. i'm really worried that she has Lyme. in fact i think all 4 of my dc have symptoms of Lyme. i have two boys who have been dx'ed with tourettes. one of my ds started having tics at 18 months old. my other one just started having tics at 3 1/2. all 4 kids have OCD issues and the 2 boys have adhd and behavior and learning problems. i have read about Lyme and read that you can pass it to your child via breast milk. i nurse all 4 of my dc and i am pregnant right now and planned on nursing this one. none of my 4 kids have been bit by a tick that i know of however, i was bit numerous times by ticks as a child. so i'm wondering if perhaps i have lyme and have passed it to my kids thru breast milk. will the infectious disease dr. test for Lyme or do you have to go to a lyme dr. to be tested. also do my dd's symptoms look like lyme and also would she have abnormal lab results such as elevated liver enzymes, low white blood count, etc. with lyme or could it have just been her strep infection and the EBV thats causing the lyme? let me know if any of you who have dc with lyme have experienced these symptoms, etc.. thanks. jen
  9. thank you all for your info. i'm going to try to find a lyme dr. i feel that i need to be tested because i was bit by tics several times as a child. i'm wondering if i have it if i could have passed it to my children thru breastmilk. my 2 sons have tics, adhd, OCD and my 4 y/o ds has horrible tempers and autistic like features. my dd is 8 and has chronic fatigue since a baby but she does not have tics. i think it would be good to rule out lyme. can someone tell me what the dr. in Alexandria, LA name is. that is about 4 hours from where we live and i would be willing to drive 4 hrs to go to a dr. that knows lyme. thanks. jen
  10. i looking for a Lyme dr. in Tx or La. i would love to get tested and have my kids tested as well. there's reason to believe that we could have it. i will need a referral with my insurance i know that my dr. would give me a referral but my kids pedi will probably give me trouble. so i'm wondering if the testing for Lyme is really expensive if i had to pay out of pocket for the kids if the pedi would not refer us? jen
  11. thanks so much for the replies. i'm glad to hear about pipe apple juice helping it leave the body sooner. i will try that with my ds. also, i will check out gf/cfkids. thanks! jen
  12. i posted this on the autism/asperger boards and no one would answer my question. can someone on here please tell if you've had experience with casein free diet with your pandas/autistic/tourette's child if so how long does it take for casein to rid the body. my had ice cream this past sunday and is still acting out. is this normal??? here's what i posted on the other board: we have found that our ds (4 y/o) has autistic like and tourette's or PANDAS like issues from milk products. yesterday my mother in law gave him some ice cream today he is having major behavior issues, temper tantrums since last night after eating the ice cream, high pitched squealing, repeating words. i've already had to restrain him 4 times today and 2 time last night. he's been banging his head on the walls, biting his arms, when he gets like this and is having one of his temper tantrums no one can look at him if they do he starts throwing things or banging his head on the wall or he will continuely squeal if you look at him. i'm about to get the video camera out so i show all the ppl that think i'm nuts for thinking this is a milk allergy. this child only acs like this when given milk products. now he still has some temper issues even without the milk but nothing to this degree. so i'm wondering for those of you that have your child on a gf/cf diet how long does it take for dairy products to leave the body. also do you all keep your children from beef as well. i am still letting him eat the beef but i'm just keeping him away from milk, cheese, ice cream, etc. he still gets butter and milk in somethings like cakes or cookies. i'm thinking about eliminating all of that as well. but we have seen a dramatic improvement with just taking the milk, cheese and ice cream from his diet. he is like a different child when his body is free of dairy products. so just let me know how long it takes for it to exit and if you all keep your kids from beef as well. thanks. jen 0
  13. we have found that our ds (4 y/o) has autistic like and tourette's or PANDAS like issues from milk products. yesterday my mother in law gave him some ice cream today he is having major behavior issues, temper tantrums since last night after eating the ice cream, high pitched squealing, repeating words. i've already had to restrain him 4 times today and 2 time last night. he's been banging his head on the walls, biting his arms, when he gets like this and is having one of his temper tantrums no one can look at him if they do he starts throwing things or banging his head on the wall or he will continuely squeal if you look at him. i'm about to get the video camera out so i show all the ppl that think i'm nuts for thinking this is a milk allergy. this child only acs like this when given milk products. now he still has some temper issues even without the milk but nothing to this degree. so i'm wondering for those of you that have your child on a gf/cf diet how long does it take for dairy products to leave the body. also do you all keep your children from beef as well. i am still letting him eat the beef but i'm just keeping him away from milk, cheese, ice cream, etc. he still gets butter and milk in somethings like cakes or cookies. i'm thinking about eliminating all of that as well. but we have seen a dramatic improvement with just taking the milk, cheese and ice cream from his diet. he is like a different child when his body is free of dairy products. so just let me know how long it takes for it to exit and if you all keep your kids from beef as well. thanks. jen
  14. thank you for the reply. i have looked into Dr. K and Dr. B. Dr. K does not take my insurance so i can't use him. i haven't found out if Dr. B takes my insurance. I have seen him on the today show and i would love to take my 2 boys to him. we live in texas and i think he is in ct. we would be willing to take a trip just to get our boys the help they need. my problem with my insurance is that all of the pandas dr.'s are out of town for us and that would most likely mean out of network with my insurance. all of you who have seen a pandas dr. did your insurance pay for the visit. if so, did your pedi have to give you a referral to see the pandas dr??
  15. what dr. are you using from Texas???? We live near Beaumont, TX which is 90 miles east of houston, tx. I wonder why Texas has a high incidence rate of PANDAS??? I actually have 2 boys that show signs of PANDAS.
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