lkaanda

Thank you for the information. I think we will try upping her dosage a little as long as she can tolerate it. I am hopeful this will give her even a little relief. Thanks!

We just started giving my dd9 Kids Calm. She weighs about 50lbs. According to the package she is in the 9-13 range which provides 240mg. of magnesium. I have noticed some posts which seem to give more magnesium. I have not heard back from the doctor to get his opinion. I was just wondering if anyone had any thoughts on this amount, I feel like maybe it is not enough? We are desperate to find something to help with her tics. So far, the steroid burst and 3 different antibiotics have not helped. Thanks for your help.

Thanks for the information. I am still waiting to hear back from Dr. T.. Its good to hear there are other antibiotics that do seem to help. Maybe biaxin will be the one that will help us. I will let you know if it works. Thanks again!

I am wondering how many different types of antibiotics you had to go through to find some relief? My daughter did a 5 day seroid burst, followed by amoxicillin. She was on that for about 5 days with no relief when Dr. T. switched her to Azithromycin (due to lack of help and blood results). We are almost done with 10 days of Azithromycin and my daughter still has not found any relief. I am still waiting for a call back about what the next step is going to be. I was just wondering if anyone else had to go through a couple before finding something that would help. My husband and I thought the hard part was going to be finding a Dr. to treat her, we did not realize it would be so hard to find something to help her. Thanks for your help.

She was on 200 mg one time a day for 10 days. Then he put her on 500 mg once a week for one month them a recheck and we will see what happens. The 400 sounds allot to me. Geez make sure you give her a high dose of probiotics and important to wait 2 hrs at least to give the probiotics after the antibiotics. We ended yesterday and of course this am I a get a call from the mom who car pools with my daughter she wanted to let me know that her daughters sister has strep...urggghh I can't believe it but I actually scrapped the bottom of the container of the abx that was still in the fridge and gave it to ava before school..it wasn't a full dose but It made me feel better I am not too familiar with probiotics, other than hearing of them in yogurt. What do you reccomend giving her? I thought I read on here once that yogurt is not good for PANDAS kids since there is streptococcus in it?? Any help would be appreciated. Thanks!

Do you mind me asking what dosage your daughter was on? My daughter is starting 400mg once a day tomorrow. The pharmacist seemed concerned by that amount. She is 9 and about 50 lbs.. Is that similar to the amount your daughter was on? I am hoping after a few says we will see some relief as well.

My daughter has an MRI scheduled for next Wed., and I am worried about her being able to stay still long enough during the procedure. The neurologist does not want to sedate her, which we do not want either. I am just wondering how your experiences were? My daughter does shake her head a bit.

Update...We went to our first neuro appt. today, and it went pretty well. The doctor did say based on the symptoms it could be PANDAS, but did say he thought it was very rare. Its funny he should say that, because after talking to people it seems a lot of people know one or more families dealing with it. He is running the DNase test and the ASO test. He is having her get another Group B and A throat culture also. The one that I was not aware of, is an MRI of her head to rule out any abnormalities. Has anyone had this done? What do you think of it? We have an appt. scheduled to go over the results in a few weeks. He seemed open to it and yet kept mentioning how rare PANDAS is so it was a little strange. Hopefully we will have some results soon. Thanks again for your help.

I am so glad you asked this. I have been trying to find the link for this but am unable to. My husband is planning to go and see what he can learn, and he works up that way. Could you post the info as to where and time etc.? Thank you!

Thanks again for all your advice. I will definitely bring all the information I can with me, and I will let you know how it goes. Thanks!

Thanks so much for all your helpful replies. I brought her into her regular pediatrician, who of course said it was just a tic. Right now we are scheduled with a neurologist who could see us relatively quick. Most seem to have appts. about 6 months out. If I don't feel like I am getting anywhere I will try one of the PANDAS specialists. I live in NJ, and it looks like there is one here. Thanks again for your ideas. At least now I feel like I know what he should be talking about with me as well.

Hello. I have an appt. for my DD8 for her first visit and am wondering what to be sure to ask about, have tested for etc. She started having sudden tics about 2 weeks ago. It started with head shaking and has increased since then. She also makes a face like she is sniffing, although not actually sniffing. She mentioned she also feels like she needs to tighten her arm as if flexing her muscle, and tighten the muscle in her jaw. She does a little blinking at times also. This is all after having 2 strep infections about a week apart (after finishing her antibiotics). After the second round of antibiotics, she lost her appetite and would hardly eat for about a week or so. She said she felt like she would vomit if she did. As soon as her appetite started to come back the tics started. She also has been very emotional, crying without even understanding herself why. From all the research I have been doing, it certainly seem to me like it is PANDAS. I just want to know what I should talk about other than all the information about what has been happening. Is there any tests the doctor should be telling me to have done? Also, do most doctors seem open to the idea that it could be this? Have you come accross some that feel it is not proven or does not truly exist? Thanks in advance for any help. I want to make sure I am getting any information I can.

After a couple years of wondering we finally called to make an appointment with a neurologist to see if our 6 year old son has tourettes. Most of his syptoms have been mild but they seem to be changing lately and coming a little more often. The first available appt. is in February 2005, so I am trying to do as much research as I can in the mean time. I was wondering if anyone who has been to the neurologist could give me an idea of what the first visit is like and what tests they may do that day. I would appreciate any help you can give me. Thank you.