Just tics

[lss]

Does anyone else out there with Panda kids have just tics or mainly tics as a symptom, and how or what has helped. We are going thru a horrible time right now with the tics and I'm not sure what triggered this. He had a horrible sinus infection a few weeks ago, then we had a foriegn exchange student move in with us (long story...) he was sick, and I think my son may be reacting to all of this. He was put on 500 mg x 2 daily for the sinus infection and was previously on zith, and still didn't help with the tics, the zith seems to help with the ocd issues. Also, while the foreign exchange student had (has) a cold, my son developed cold sores on the corners of his mouth, dr. gave him the zoviraz ointment for that, could this be triggering the tics?

Linda

[greeneyes48072]

My son's primary symptoms are tics as well. We have been dealing with this since 11-28-08. We have tried went through two different antibiotics, he is currently on azith. At no point have his tics gone away, even with the antibiotics (except for a week or two with the steroid burst). They got even worse when he had a cold a couple months ago, this was also right after he was at a indoor waterpark...Since we've hit the five month mark without any change, we are now looking to doing IVIG. If you haven't done the steroid burst yet, you may be able to give him at least a temporary break from them by trying it. Besides that, we have had no luck, though some of the other parents with tics have seem some help from keflex as their antibiotic...

[lss]

greeneyes,

Thanks for the reply. We are doing the steroid burst right now (day 4) and what I have seen is that it the steroids have made him very hyper, but still has the tics. Someone else told me that doing the steroid burst relieved other symptoms, but the tics were still there. We are scheduled to do IVIG with Dr. K at the end of May. I hope that gives him some help.

Linda

[greeneyes48072]

Hang in there. Is this your first steroid burst? When our son did his first, the tics actually did reduce, but not until day 5. Reduced tics by 80% at that point, but lasted less than a week and went right back up to 100%. We then did a once a day low dose that reduced them by 90%, but then that lost effect after about a week. We just recently tried another burst. It only reduced his motor tics that time, and didn't even touch his verbal tics, which were pretty bad. Dr K said that the steroid burst only seems to work the first couple times and that we had "cashed out" on it's effectivness...but if this is your first, then maybe in another day or two you will see something!!FYI, our first burst was Methylprednisolone 21 pill pack...

[lss]

I'm keeping my fingers crossed. We got the methylprednisolone 16mg tablets, and he is taking 3 a day for 5 days. These last few weeks have been really bad at school. I feel badly for him as well as the other kids and the teachers. They will not send him home, but if I want to keep him home that is ok with them. They have been unbelievable (kids and teachers). My son has just the vocal tics. They seem to get worse right before bedtime and right before he falls asleep. Right now I'm just counting down the days before school is out and we get IVIG done.

Linda

[greeneyes48072]

Just checking in Linda, any improvement the last couple days??

 

Rachel

[lss]

Just checking in Linda, any improvement the last couple days??

 

Rachel

 

Thanks for asking

 

I only noticed that the pred made him hyper, but my neighbor was over and she said she could tell a difference in the way he spoke to her, was more communicative with her. I did notice his scense of humor was there as well. Tics, only vocal are still there but not as bad this morning on the way to school. I guess all we can do is wait till end of May for IVIG.

 

Linda

[bmom]

Just thought I woud respond. My sons symptoms began as mainly and only tics. It then progressed into some separation anxiety and urination issues over time. We are five months post IVIG and although it has been some bumps along the way and not quite 100% the IVIG has been well worth it.

[lss]

Hi Bmom,

 

Im so happy to hear that your son is doing better. We did do the steroid burst, tics didn't get worse, but he was hyper. We continue to wait for the end of May for IVIG with Dr. K, I only hope and pray that we get results like so many others on this board have gotten.

Linda