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