mar

So ds has been ticcing lately. Yes I have noticed and yes Am very sorry for him. But today comes home from football practice and see his lips red and is making facial twitches with lips and says its cold out and it bothers him. I see the licking and red lips lips as he is telling me something and he saids it's better then being crossed eyed. He has been crossing his eyes and I would think this is better. But this just killed me because he would rather do eye tic then have red lips. This is so hard to see him struggle! He has been doing so well and has gone downhill with the tics. I hope his. Lips get better. I guess just the pain of seeing your child suffer is wrong. I constantly have that feeling of what I could do. Just venting some what. Mar

I understand. Ds is 10. But this is very interesting. For the last several years he gets obsessed with Christmas.. He makes his list and rechecks it and takes a long time to figure out what he wants. He would plan it out several months in advance. Yes I think this is OCD with my experience. I have been hoping he will realize their is no Santa and I am in the clair. But yes he would dwell and rethink what he wants.

I always wondered if this has anything to do with pandas or something else. Looking over the years things that my kids did. Ds would spin in circles with his eyes closed. Not always but sometimes and say it felt good. He stopped and then would do it so often. Dd would do it but don't know if she learned it from him at those times or what. Also ds during bad times would sit with his head down on floor and legs curled around and said this feels good . This is one thing that goes away but I see him doing if again at certain times. He slides across floor and seems to like like to be lower during certain times. This was a shock when he was 7 but k am noticing this at 10 . He had strep back in may with three doses of antibotics. But see him doing this now. Was tested for strep and nothing. My question is do you notice this behavior with allergies and colds or is it strictly strep. He has done the hands out and eyes closed walking but not excessively. He would say its fun. But it would only be a couple times a day and then he was done with it. Are these actions pandas or could they be something else? He's 10 and when I see him on his head if freaks me out! Like I said its not constant but he has that need. He was tested for strep on thurs and nothing. Could these actions come out with stress or a cold for pandas children . Does it have to be strep? Mar

Ds can't have Motrin. He had it three years ago and sneezed for an hour strait and the then next dose several months later he got sk congested within 20 minutes that he cried and it was pretty crazy and scary and has not had it since then. I know there has to be something causing this but don't know what! Mar

So u are doing test on your own? What lab are u using? Mar

Never have and never will do flu shots. Mar

Has he been sick lately? Otherwise I would keep his diet clean. Keep clear from dyes and preservatives and sugar. See how that helps out. My next suggestion would be test for allergies. Food or environmental. Mar

This is really hard! Ds has been doing well for awhile with occasional tics hear and there. But with strep in may several times between him and dd a little worst but okay and these past couple of weeks total downside!!!! Pulled something in chest no broken injury and now all congested eith a cold I think. Was at doctors for injury but got strep swab also and nothing. He is now fighting a cold with coughing and pale. Last couple of days just all over , jumpy not really listening. He is laying on the floor and on head at times. He is around sister and just keeps pushing buttons. I feel so bad for him! I know he is not feeling well but what is up with the hyperness at times. He is bouncing on minitrampoline and I ask what about your pain by rib . He saids it's okay if j jump a certain way. He missed all week of football bc of pain but is all over. I guess when I see my 10 year old on the kitchen floor who is 5 foot 4 it really breaks my heart. His OCD is up. He is more clingy. Sorry just venting and realizing this never ends. He has this constant little mouse sound tic for about a week. Mar

Hello everyone, I am trying to get as much feedback as j can about pyroluria . My first question those who have done this test on their own how reliable was it and how have you proceeded with supplements? Did you take results to doctor so she can recommend treatment? I have been researching this a lot lately and feel that everything describes ds. I have heard that ped might not know much about this. Any info on this would be very helpful!! Mar

I replace a half a banana mashed per egg in the muffins and pancakes I make and has worked out. Also flax seed eith some water can replace egg. It's on the box and can't recall at the moment. Mar

This is all so interesting! For my ds yeast from what I have seen played a role. One he was on a yeast free diet his tics and overall behavior improved. He is 10 now and from when he was 7 getting yeast out helped. Mar

Ds would tic in march/April for a couple of weeks and then again in the fall for a couple of weeks when he was younger. This was 3,4 ,5 years of age . He was getting ear infections and strep occasionally. At 7 during the fall it hit hard core!! Got him tested and he is allergic to ragweed, mold, pollen, grass. He was miserable with several sinus infections from what they said. Thrown on antibiotics and told he is borderline asthma. Took an inhaler for a week. I asked if their could be food involved and she said no! He would have eczema. She said he would suffer all year long and need allergy meds and to watch for asthma!!! This is where my story begins no I was not okay with this!! Within a couple of weeks we watched a family members dog for a couple of days (ds was tested for dog dander and all good) ds started coughing and looking miserable. By second day He could bearly get up stairs lips turning blue! took hom to doctor and of course needed breathing treatment! Had to send dog out of house bc had this crazy feeling it was the dog. As everyone is telling me it's not the dog I feel it is in some way!! Even thought he was tested I just didn't want that dog in the house. So within a week got ds tested for dog saliva and bingo he was highly allergic!! So at this point I was just scared and just wondering what is going on with the sudden allergies, tics, OCD and everything !!! After finding this site I learned that food could be involved with the tics. Got blood work and wow!! Food sensitivities to like 30 out of 88 things. In the meantime we tried Claritin and if helped with the sneezing but did no justice to congestion! Ds asked to go off bc when he sneezed it helped it to come out. At this point I am looking at this 7 year old with bags under his eyes, pale and just misurable bc he is allergic to dogs. His lips are red from constantly licking them! My son loves dogs to a point of no return!! So this is where I started his diet. It took a while but after clearing out all sensitivities and allergens it looked better. He is not ashmatic thank goodness. He was told to be put on singular and other allergy med by ped but I didn't agree bc I was afraid of side effects. So yes I think ragweed or any allergy could cause tics. He is ten now and over the last three years it's crazy and amazing how his tics very with certain things. I am suffering with allergies right now and ds is doing okay. He has bad days and good days but a lot depends on what he eats. He has not taken any allergy meds in the last three years! We only tried Claritin and he didn't like it bc it didn't help congestion but at the time his congestion could of been due to sensitivities so it was not causing relive. I have heard it does help others. He does react when he has strep. With some tics, anxiety and OCD so it is a never ending battle. Do want to point out with dd and her sniffles. Yes when dd who is 7 now got/ or gets congested she sniffles nonstop. She is different then ds. She is gluten free and milk free and all dyes like ds. But her symptoms were mainly leg pain and stomach issues which is complete opposite of ds. But when she gets a cold it's the sniffle tic. So far she has been spared of the eye blinking, and llip linking and eyes rolling., and of massive allergy attach . But she is very impulsive and does show OCD. But to just end this with yes I think allergies play a key roll whether it's Tourette or pandas or who knows what! I think finding out about this had helped my children. I just think that if your doctor throws them on allergy meds bc they don't know to diig further. Let me know if you have any questions. I know everyone's situation is different. But this site helped me greatly and I hope all it will help others! Mar

Thanks for the replys! Yes from what I read it won't stop strep but my concern is it will help him in any way. I just have this weird feeling that his anoids are messed up. Yes he has allergies but from a child he always is congested and recently gets a cold or whatever it was he is like a fountain of mucus!!! Probably allergies and cold combined. I have noticed for a while now like ten years that when things hit him he can bearly breath. His tonsills aren't huge like mine where when I was his age but who knows from what I have read. it seems that you guys don't regret it. My son is also at the point where he is not suffering full blown pandas but has other symptoms that make me wonder. He has occasional tics, OCD, sensitivities but is manageable at the time. This is why I feel I need to do the T&A. He will panick and freak when he finds out!!! If will not be easy with him and that is why I want to be sure I can provide him with antibiotics and all so no other symptoms arise. I feel that I should do this during summer break when he will be 11. Is this too late!! I just don't know if it's good to do it through the school year when he is prone to catch strep or what not.will I be waiting too long ? Did your kids have axiety prior bc i know ds will flip!!! Mar

Bees knees mommy I am really interested In the t&a for ds who is ten. I had many sore throats as a child and strep and was going to get tonsils taken out until my mom panicked and cancelled the surgery!! DH also has strep on his side with his mom who almost died with rheumatic fever. He also mentions of sour throats that he just never was put on Antibitics at 16. Anyway I think there is a lot of strep on both sides. I am considering this greatly but what is keeping me to presenting this to doctor is the I fear that I need to do the antibiotics before and after and they will think I am crazy. Ds is doing well and I don't want to mess him up!!!! So If I get doctors to do this without antibiotics I am scarred!!! I guess I should say he is doing well but manageable. I still see OCD and fears and what not but is not life threatening and making his life miserable like I have seen in the past. if you can pm me about your experience that wound be great!! I have this weird feeling in me that I need to take it all out maybe bc my mom didn't and I still had strep to a point. Mar

So ds is now 10. He has this thing with repeating things that he likes to talk about or making sounds that his friends make also. So I tell him the other day in the car to stop making some sounds bc it is annoying dd. we have kind of talked about this the last couple of days and I ask why do you have to do it several times after I ask to cut it out. So he throws this at me " mom I was watching pawn stars ( or something similar) and there was an adult who had to keep saying or doing an action over again and he has some syndrome he says can't remember what it's called he's says I think I have that!! He seems all excited . And he throws in mom don't worry it's nothing crazy. But I think I have this , it's like me. When you tell me to stop making a noise or whatever I feel like I have to do it a couple more times. He is all fine and thinks nothing of it. Just want to mention that ds knows children on our block and from school that have aspergers, autism, add, adhd. So the next day he is doing homework and he is boucing and needs needs to be told several times to focus. And he looks at me and saids I like to move around and maybe mom you never know I could have add. So I now he is getting older and the think is what do I say!! Yes I think he is somewhat add. Manages thru school with no real issues. So I ask him how do you manage In school for that long without getting up and moving. He said I love rececess bc I try to burn my energy there and I ask for washroom breaks just to get up and move around. So dd says how a kid in her class was rocking back on her chair and cracked to the ground. Ds says he has done that and been there . I am like what??? He tells md of several kids doing this in his class and that he has done if several times. He says it's funny! So I guess my question is that he is seeing things and pointing out things that I have known abown do j say yes you have this?? But you have to remember that ds freaks out about things do I say you do have add and this syndrome will be be okay or dwell on it and live his life thinking he has something wrong with him. he is older and smarter. What is a good wAy of talking to him about this? Mar

I just wanted to throw in that he propably does feel the itch. My ds Dix a lot of throat clearing also. I have had this actually happen to me that my throat itches and you have to clear it but with ds is was constant tic nature. But it's amazing on how much it helped with eliminating his allergies and sensitivities and all dyes or preservatives. He would tic nonstop and I would see the look in his eyes. He does tic now once in awhile but I know if his diet is good it helps a lot. Stress makes it worse but at least I know it wont last long we revamp things and I try to destress him and he is doing much better at 10 then he was at 7. Even being sick causes tics. Even think about and look into step if he has had it. Bc this is one sickness where I see thinks getting worst. I never would think that strep plays a roll but do see a change with both kids. If he has had it keep an eye on that. Mar

Stress will bring it on but just want to let you know ds is ten and started school with no tics this year. His bus stop is with five girls that give him him a hard time at times. With him 3 years past I checked food allergies and sensitivities. He is also allergic to pretty much all outdoor allergies. This was at 7 and he is doing much better with tics with helping with his allergies. His tics are doing alot better. yes axiety will make tics worst but if you help and discovers other symptoms then the anxiety will not make Tics a s bad. Have to run let me know if you have any questions. Mar Ed

Yes sounds familiar. You need to help him. He is suffering something. It could be tics and yet it could be allergies or a strep infection causing this. Like I say it could be torrettes But be certain that their is a history and even with a history think twice. there are many things that can cause this behavior. Like allergies or food sensitivities or sicknesses like strep! Keep an eye on it. Mar

Hey, I would look into food and dyes. Yes some people could have Tourettes but u need to to rearch and see if there is something more with the tics. Mar

So the other day ds repeats noises and saying as we are driving to football. I say okay cut it out and he says he was watching pawn stares or one of those shows and said there was a guy on there the kept repeating things and he had some type of syndrome . He couldn't remember what it was but said mom I think I have it, don't worry it's nothing bad but I like to repeat sounds and sayings and I think I have the same thing. I was frozen in the drivers side. Ds is 10 now and did he really just say this. He was all calm and sure of himself. Then today ds is doing homework at kitchen counter as I am making dinner and he is bouncing like usual. I tell him to do his work several times and he goes back and forth and says mom remember about that guy and goes to say I like to move around and maybe I have add. I have never spoken to my kids having this but they are around many kids with add, ADHD, aspergers, autism that they understand. He is in 5th grade now and say how do you handle school ? I say how do you do at school? He says recess is fun because I can burn my energy and I go to several bathroom brakes so I could get up and move around. Other then that I feel zoned out. Dd told me how a girl fell back on her chair in class today and ds is like I did that lots of times. Why did no one tell me??? I have never gotten any bad feed back about ds about this. I laugh bc he is packing his snacks for lunch tonight and I say do you want this plastic spoon for soup or a real one? He said give me the real ond otherwise I will be tempted to shoot something across the lunchroom. He is such a smart kid. One other thing ds tends to talk in this high pitch voice when he wants his way? He is fast, bossy and this high pitch voice. Mar

So the other day ds repeats noises and saying as we are driving to football. I say okay cut it out and he says he was watching pawn stares or one of those shows and said there was a guy on there the kept repeating things and he had some type of syndrome . He couldn't remember what it was but said mom I think I have it, don't worry it's nothing bad but I like to repeat sounds and sayings and I think I have the same thing. I was frozen in the drivers side. Ds is 10 now and did he really just say this. He was all calm and sure of himself. Then today ds is doing homework at kitchen counter as I am making dinner and he is bouncing like usual. I tell him to do his work several times and he goes back and forth and says mom remember about that guy and goes to say I like to move around and maybe I have add. I have never spoken to my kids having this but they are around many kids with add, ADHD, aspergers, autism that they understand. He is in 5th grade now and say how do you handle school ? I say how do you do at school? He says recess is fun because I can burn my energy and I go to several bathroom brakes so I could get up and move around. Other then that I feel zoned out. Dd told me how a girl fell back on her chair in class today and ds is like I did that lots of times. Why did no one tell me??? I have never gotten any bad feed back about ds about this. I laugh bc he is packing his snacks for lunch tonight and I say do you want this plastic spoon for soup or a real one? He said give me the real ond otherwise I will be tempted to shoot something across the lunchroom. He is such a smart kid. One other thing ds tends to talk in this high pitch voice when he wants his way? He is fast, bossy and this high pitch voice. Mar

I. Also believe this is OCD. Both my kids always say sorry for simple things like bumping into me it's always sorry. I feel like they always feel like they did something wrong bc of the I am sorry. Mat

Thanks for the replys! Even thought I was consitrating on dd I learned some things about ds. He is going into fifth grade but last year him and I struggled with homework he always did it at the kitchen counters and dd would get him going and with me cooking dinner I felt it needed to change as he got older. Got desk in basement and has room in bedroom but he would be upset and say he can't go in basement ( I think he is afraid) but anyway would say he can consitrate and is fine in kitchen. But he was always off task and doing other things while doing homework. Wow I totally see this in ds! I would try for hom to get most of his hw done before dd would get home b/c then she distracts him and it's a fight for time. So dd has been getting straight A's with a B here and there which amazes me. But over summer he mentions that it's hard to stay focused some time at school. He has mentioned the rocking in his chair which I do see at home. I just wonder how this kid puts it together at school but is different at home. Now going back to dd who I fear about at this time. She comes home and would do her homework right away. She is very bright but has these foggy moments and impulsive and clumsy. Its weird but has read chaper books in first grade but has this what where" which reminds me of DH. She still lies and ag times seems confused. This is what scares me. It's the whole look in her eye of what? I am not into add meds and hope to find something to help them. Mar

So I am been researching add in adults and as I am reading this it's my DH to a t. Dd is exactly like her dad. Is there anything I could do to help her without putting her on meds! I do sugar free as much as I can and the sugar she gets is very minimal. She is dye free and preservative free. She is calmer on this diet but she still has the impulsiveness and forgets thinks like DH. Like seriously she is a mini dad. I have been with dh for 17 years so i know him very well. I am seeing her act like dh and it freaks me out! Is there anything I could do to help her with this? Mar

Who knows it might not be gluten but in my case thank goodness it helped dd. when all this started with ds I lost my job and had to try to help him. DH does not cook at all!! Everything was on me !! When I mentioned leg pain in dd he would say I have that some times. Thanks for the help.! So basically it was no help from DH but you do work so it's hard ! I cook but nothing like my mom. Changing everything for my ds was a smack In the face I was lost! But I tried. At the time I would tell my DH what to make and He called me several times b/c he was lost. He never cooked and their was stress . There is still stress now. I seriously believe he has no idea what ds could have. He doesn't !!! I always say try it for a couple of weeks and see what happens. I had a mother at my door several years back with a pen and papper saying I heard you are gluten free. I showed her the things my kids eat and and explained that it won't hurt to try on her dd who had lots of stomach pains. She went gluten free and 2 of her three daughters are celiac and going gluten free they have been growing! Another mom mentioned that their shoe size went up within a couple of months and that this mom went gluten free and she feels better. I was happy that I was able to help a family out! Ds was sensitive/allergic to 30 things plus outdoor allergies. It was scary!! I don't know how I did it! Talks about asthma and what not but he is better. Then he goes and has asthma attack with a dog in the house we were watching. Speak with DH and seg a plan. I did it on my own which is hard big it worked! Mar