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for the ticcers...has anyone had to deal w/ hopping stomping


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now the hops are gettting more intense...like step hop isn't enough...

it's like they have to be forceful

the house is shaking today....

and the hopping isn't constant...if he is standing for a while he might hop, maybe not. 50/50....if he start walking its step stomp step hop..if he gets going he might have to jump like he did before to kick his own back side....

the motion of using the muscle triggers the tic...

like when we were at 85-90%..his motors were gone unless a specific muscle movement triggered them...ie hair in the eyes..tried to flip his hair with his head, then turned into twisting his head 3 times..

yes the screeches are still here..they came back the same day has the hop..

i guess the question is ..does anyone else have anything going on in the legs

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now the hops are gettting more intense...like step hop isn't enough...

it's like they have to be forceful

the house is shaking today....

and the hopping isn't constant...if he is standing for a while he might hop, maybe not. 50/50....if he start walking its step stomp step hop..if he gets going he might have to jump like he did before to kick his own back side....

the motion of using the muscle triggers the tic...

like when we were at 85-90%..his motors were gone unless a specific muscle movement triggered them...ie hair in the eyes..tried to flip his hair with his head, then turned into twisting his head 3 times..

yes the screeches are still here..they came back the same day has the hop..

i guess the question is ..does anyone else have anything going on in the legs

the hop/jumping was the first tic my dd had. I remember thinking, "wow she is so happy". What a ding dong I was, I had no idea. As the hopping continued, I figured it out. She would walk but when she stopped is when she jumped. It is like every where she went it ended with a hop. This only lasted for a month or so then all the other motors started showing up one by one. She has had tics for almost 5 yrs now, and we have only seen it that time. I have always felt that it was connected to ocd. If her bangs are too long - usually the head shake would start, if she had a cold, the sniffing would come on and stay long after the cold. I am sorry for what you are going through. I get it.

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Yup, I had a hopper, so severe at the start of our spiral downhill. She would have to do it so hard (and she always wears flip flops, so it was really loud) she would constantly scare people in stores and places in public. Haven't seen that since the 1st dose omnicef in april, even though OCD is still pretty severe.

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I've got a hopper and a screecher. Hopped so much his butt was black and blue from the heels of his feet. IVIG has helped a great deal with the hopping. No more black and blue marks. Some days no hopping. Some days maybe 5 hops. Screeching seems to have picked up since ivig. He also no longer walks in an "L" shape. He use to bend in half when he walked. I noticed a lot more vocal tics and random opening of the mouth it since ivig. He has had three high dose ivig's this summer. Our next neurology appointment is Friday. I actually put hopping in the OCD category. Don't know if I am right about that. It seemed like a compulsion. I am not sure what the difference is any more. Tics, compulsions, obsessions. It's all just odd behavior. I am ready for it to be gone. Just want my normal kid back. Tired of all this B.S. I have developed muscle twitching all over my body from the chronic stress. Today it was in my face. Tomorrow I will go for a run and try to clear my head while burning off the anxiety.

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now the hops are gettting more intense...like step hop isn't enough...

it's like they have to be forceful

the house is shaking today....

and the hopping isn't constant...if he is standing for a while he might hop, maybe not. 50/50....if he start walking its step stomp step hop..if he gets going he might have to jump like he did before to kick his own back side....

the motion of using the muscle triggers the tic...

like when we were at 85-90%..his motors were gone unless a specific muscle movement triggered them...ie hair in the eyes..tried to flip his hair with his head, then turned into twisting his head 3 times..

yes the screeches are still here..they came back the same day has the hop..

i guess the question is ..does anyone else have anything going on in the legs

 

My daughter stims. Not a tic though. She has stimmed since she was 6 months old. She hand flaps, hops and crosses one eye. I couldn't do all of that at once if I tried. The good thing is that she has learned that it's not appropriate to do in public. So, now she only does it at home when she thinks noone is looking. I'm very eager to see if the new treatments will have any affect on the stimming.

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My dd is sashaying. It just looks like she's a bouncy happy girl at first glance. But it's in a pattern and she can't stop doing it until it feels right and she does it when she does not feel good or right. At least it's quiet! I found out yesterday that she's doing it in school but no one has noticed it as anything unusual yet.

 

But I think hers is OCD and not a tic though...

Edited by Suzan
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Wow..thanks for sharing everyon...

i hadn't heard anyone else talk about such things with the legs...

 

(early childhood tics were simple that would remit with abx)

 

When this episode started 4/6/09..ds was that very jump where he had to kick his behind..not just a hop...it wasn't till a week later, when he took a shower in our room and he turned and his entire back side was black and blue..we had to carry him some during that episode...his legs where so tired.if he couldn't jump, he would buckle..

it was that single tic....then as mentioned others started to roll in..

 

i'm just freaked as i feel like this is going to take forever to get rid of again...and i think the chaining is starting a little...like a hop screech..

 

arm flapping came later, then became like one arm bandits and did them very hard and continued to the point he had bruises again on his shoulders..and would do several others together, as you said, i couldn't put them together with the intensity,,,and i have tried.

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We also have a hop and jump tic. Some days it would be every couple steps and she would get tired and sore from all the jumping and kicking. I've found that the vast majority of our tics tend to be food related. For example, the hop and jump/kick tic tends to be triggered by certain fruits (berries, grapes, others high in sugar), as well as articial flavors and preservatives. We also see it if there's just too much sugar in the foods that we've eaten that day or the day before. My daughter is very sensitive to some salicylate foods, so we have to be careful.

 

An interestig thing to note is that although we've found some of these salicylate foods to be a trigger (by doing an elimination diet), most of them didn't show up as a problem food throughout our food intolerance testing. So I guess what I'm saying is it's worth keeping a food diary even if you don't think your child has any particular food triggers.

 

We've found a lot of great info on this site as well as the Feingold website throughout our research.

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We also have a hop and jump tic. Some days it would be every couple steps and she would get tired and sore from all the jumping and kicking. I've found that the vast majority of our tics tend to be food related. For example, the hop and jump/kick tic tends to be triggered by certain fruits (berries, grapes, others high in sugar), as well as articial flavors and preservatives. We also see it if there's just too much sugar in the foods that we've eaten that day or the day before. My daughter is very sensitive to some salicylate foods, so we have to be careful.

 

An interestig thing to note is that although we've found some of these salicylate foods to be a trigger (by doing an elimination diet), most of them didn't show up as a problem food throughout our food intolerance testing. So I guess what I'm saying is it's worth keeping a food diary even if you don't think your child has any particular food triggers.

 

We've found a lot of great info on this site as well as the Feingold website throughout our research.

 

just out of curiousity...do you give your child vitamin C....

what about quercitine a dirivitve of grapefruit seed extract......

do you give pears or apples if they are peeled

and what about the processed fruits...like apple sauce...

 

ds did seem to have a saclicitae issue....fruit made his mouth itch..

we added quercitine...and it seemed like he could eat an apple or a pear if it was peeled

 

hope you get this...thanks for any info...

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I give her a multivitamin from Kirkman that has a bit more than the RDA of Vitamin C. We've found it to be a really good multivitamin and free of all the artificials and common allergens. In addition to that we give her calcium, since she was extremely intolerant to all forms of dairy when we had her tested. She didn't test positive on the scratch test, but the IgG came back high for the whole dairy group. Other than that, she has a daily probiotic since we most likely have some healing to do in the gut from years of eating/drinking dairy.

 

We did a yeast test through Great Plains at one point and she didn't have a yeast issue, so I haven't supplemented with anything like grapefuit seed extract. We stay away from most of the salicylate foods listed in the Feingold diet, berries and grapes being the worst for us. However, I think sugar in general can be a problem as well if it's not mixed in with certain other food groups in the right amount. Too much sugar just doesn't work for us. Unfortunately the fruits my daughter likes the most are the ones we have to eat in moderation. An occasional apple or pear peeled thick works, but we can't do it every day. Others like bananas and melon are much better for her though. I find that the salicylates don't just add to the tics though, they also seem to make her a bit whiny.

 

Early on my daughter used to get a bit of a coated tongue, so I assumed a yeast problem. However, I found out later that salicylates can cause this same reaction. When we removed the salicylates, the coated tongue went away. Initially it took several days of removing the salicylate foods and really limiting sugar to see improvement in the tics. It's the whole glass filling up affect that everyone talks about. In our case it took a while to get the cup emptied out a bit so that we weren't seeing so many tics.

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