Re: Tics/Involuntary Movements and

[Guest guest]

Kim, could it possibly be a seizure? Seizures can create some pretty unusual

behaviors.

Caroline

> On 1/16/04 11:11 PM, " thesangreal " <vze3f7wf@...> wrote:

> Has anyone had any luck in curing or significantly decreasing tics or

> strange movements on the protocol? Has any one had such luck by

> using antivirals?

>

> My son was sick a lot as a toddler. Also, speech delayed/sensory

> issues. Then at age 3, he abruptly developed an involuntary movement

> disorder which some doctors thought were tics and others thought were

> compulsions, just plain weird movements, etc... (His eyes open wide,

> he smiles strangely, and his head swivels around as if a bee is

> flying around his head. sometimes whole body moves from side to side.

> Always the same movement) He also developed a panic disorder which

> is now much better. The movements come and go. We thought it was

> Pandas. Doctors thought otherwise. We thought a casein free diet

> cured him, but the movements returned. They only happen when he is

> very tired.

>

> Thanks,

> Kim in MD

[Guest guest]

Caroline,

Thanks for responding. One neurologist was convinced that my son was

having seizures (and we were almost convinced too) but then nothing

showed up on his 23 hour EEG and he did have a few faint movements

during the EEG. The other thing is that if we yell loudly or clap

really loudly, he will stop and look at us and " come out of it " which

isn't supposed to happen with seizures (according to the doctor) So,

we don't think we are dealing with seizures...let me know if you

think it might be otherwise.

What is so disturbing to us is that we don't really know what is

happening. One of the premier experts on tic disorders at NIMH saw a

video of my son's movements and said they weren't tics. She

suggested that we look elsewhere. But no one else knows what they

are. Sometimes, when he is having a movement (which can last 30

seconds or even minutes) he looks like he is in another world and

that he is at the worst end of autism...hallucinating. The movements

are always the same. I am at a loss. A child psychologist viewed

the video tape and said that she had seen lots of autistic children

performing similar movements. But then our doctor said that children

don't slip into and out of autism....like a trance or

something....but I don't know. These movements sometimes go away for

months at a time and then return. In many ways he is a very typical

kid, but in others, he is not. We hope to find an answer.

Kim

>

> > Has anyone had any luck in curing or significantly decreasing

tics or

> > strange movements on the protocol? Has any one had such

luck by

> > using antivirals?

> >

> > My son was sick a lot as a toddler. Also, speech delayed/sensory

> > issues. Then at age 3, he abruptly developed an involuntary

movement

> > disorder which some doctors thought were tics and others thought

were

> > compulsions, just plain weird movements, etc... (His eyes open

wide,

> > he smiles strangely, and his head swivels around as if a bee is

> > flying around his head. sometimes whole body moves from side to

side.

> > Always the same movement) He also developed a panic disorder

which

> > is now much better. The movements come and go. We thought it was

> > Pandas. Doctors thought otherwise. We thought a casein free diet

> > cured him, but the movements returned. They only happen when he is

> > very tired.

> >

> > Thanks,

> > Kim in MD

[Guest guest]

Caroline-

I forgot to ask you. Has anyone you know experienced seizures that

doctors had trouble diagnosing?

Kim

>

> > Has anyone had any luck in curing or significantly decreasing

tics or

> > strange movements on the protocol? Has any one had such

luck by

> > using antivirals?

> >

> > My son was sick a lot as a toddler. Also, speech delayed/sensory

> > issues. Then at age 3, he abruptly developed an involuntary

movement

> > disorder which some doctors thought were tics and others thought

were

> > compulsions, just plain weird movements, etc... (His eyes open

wide,

> > he smiles strangely, and his head swivels around as if a bee is

> > flying around his head. sometimes whole body moves from side to

side.

> > Always the same movement) He also developed a panic disorder

which

> > is now much better. The movements come and go. We thought it was

> > Pandas. Doctors thought otherwise. We thought a casein free diet

> > cured him, but the movements returned. They only happen when he is

> > very tired.

> >

> > Thanks,

> > Kim in MD

[Guest guest]

,

Wow, this sounds like a very difficult situation. Please tell me

again what your son's symptoms are? What kind of digestive symptoms

does he have? Diarrhea or loose stools? Could this be a sign of

severe leaky gut? Is he on probiotics?

We know of a child nutritionist who is very good and is very well

known in our area. We saw her before she hooked us up with our

current allergist. She may have heard of similar cases and be able

to suggest to you possible alternatives. She does phone

consultations too. I think she is relatively reasonable and our

insurance reimbursed us with a note from our pediatrician, but she is

popular and so she may have a wait. Would you like her information?

Has anyone suggested goat's milk to you? I don't know much about it,

but I do know that children who have had trouble with cow's milk have

done better on goat's milk. There is also rice milk, which is what my

son drinks, but I am not sure if it would make sense for your son,

considering he is still an infant. It does not contain any corn, but

it may not contain enough protein or other nutrients. There is also

something called digestive enzymes, but I don't know if that would

make sense for you. Again, I think a nutrionist would be in a good

position to help you.

There is something else you may want to consider. There is something

called a Rotation Diet. During a rotation diet, you rotate foods

every four days or so and do not repeat a food during that four day

interval. The idea is that if something is going to bother your

child you may more readily see a pattern. Also, it is thought to

prevent food allergies because you are not depending on any food for

any great length of time. Often, it is believed that allergy can be

caused (in those who are predisposed) by overexposure. (But talk to

your doctor and see what he/she thinks.) Again, the key is

predisposed. With allergies, it's more about heredity, and not about

anything you have done. I would suggest a rotation diet for you too

when you are nursing your next child, and also stay away from dairy

and other possible common offenders like soy and nuts, including

peanuts. Your doctor can tell you about others, I am sure.

There is a book called " Is This Your Child? " You may want to buy

it. It discusses Unrecognized Allergies in children and adults. It's

by Doris Rapp. It is a less conventional look at allergies.

Sorry for the long email!!! My heart goes out to you.

Kim in MD

> > Hi ,

> > My son had two main events in infancy. At age one he

> > got a bad virus

> > and sinus infection that made him ill for 6 mos.

> > Then at age 2 and a

> > half, one fine spring day his eyes swelled shut.

> > That was when we

> > realized that he had allergies. His symptoms have

> > worsened since

> > then. We now think he can't handle milk protein. As

> > for my NT

> > daughter, she had blood in her stool and explosive

> > diarrhea at the

> > age of 6 wks. Ped figured out she was reacting to

> > the cow's milk in

> > MY breastmilk (I was a big milk drinker) and things

> > finally cleared

> > when I was off of it for several weeks. She can

> > tolerate it now, but

> > does have trouble with fluid in the ears. Did you

> > drink a lot of

> > milk when you were pregnant? I certainly did.

> >

> > I have heard that testing at your child's age is

> > often inconclusive,

> > but I could be wrong. We had our son tested at 2 and

> > a half and it

> > was inconclusive.

> >

> > I have heard that there is a formula out there that

> > doesn't have any

> > cow or soy in it. My friend's daughter went on it

> > and it cost

> > something like seven dollars a can but her daughter

> > stopped

> > projectile vomiting when she went on it. (BTW: You

> > may have heard

> > that there is a high incidence of cross reaction

> > between cow's milk

> > and soy milk. A GI doctor told me that about 40% of

> > the folks

> > allergic to cow's milk are also allergic to soy)

> > But hey, at the end

> > of the day you have to give your child SOMETHING to

> > drink so hang in

> > there!!

> >

> >

> > Kim

> >

> http://hotjobs.sweepstakes./signingbonus

[Guest guest]

Caroline,

Thank you for getting back to me. I appreciate it. This past week has

been particularly bad for us. went from having no " movements "

(for lack of a better word) for six weeks to having several a day and

they are becoming more exaggerated than we have seen for a year. What

is so strange is that when they happen he does not appear to

be " there " if you know what I mean and he doesn't appear to be in

control. It is true that sometimes he looks very happy but with a

twisted smile on his face, and sometimes he looks utterly deranged

with his eyes out of focus and open very wide and he looks up and

moves his head quickly to duck out of the way as if something is

flying around his head and he is trying to get out of its way. He is

also making noises again during the movements which he hasn't done in

a year...a kind of heavy exhalation or moan. They are very

frightening to watch. And yet, he can snap out of it like " that " if

we call his name although he sometimes goes right back into it.

We have thought about stimming and I have brought it up with the

doctor but he keeps dismissing it. What's strange is that these

movements almost never happen when he is mentally stimulated, they

always happen when his mind is in a lull...at the dinner table, in

his carseat, rarely at school and rarely during play. I know tics wax

and wane...does stimming?? It sounds like it. I need to show my doc a

video tape; he didn't care to see it the first time around. Maybe

that will settle it.

Thank you for letting me know about the link b/n panic attacks and

herpes virus. I may have forgot to mention that our babysitter at

the time gave my son a very nasty virus. The entire family became

very ill and she was bed ridden for a week. My son got a high fever,

and secondary bacterial infection. The panic attacks started two

weeks later. We thought strep, but he had no positive aso titers then

or later. How does herpes virus show up? I know that chicken pox is

a herpes virus. Can a sore throat be a herpes virus? He did have

latent EBV, but not active at the time. I don't think the neurologist

we saw at the time tested for herpes but he did test for EBV.

When you typed MEG in your email, I assume you meant to type EEG.

True? Just making sure that there isn't some other big test I am

missing out on (smile)

Kim

>

> > Caroline-

> > I forgot to ask you. Has anyone you know experienced seizures

that

> > doctors had trouble diagnosing?

> > Kim

[Guest guest]

Dawn,

Thank you for writing again. I went back and read your original email

and now I think I understand. I did a brief search on the internet

about MEGs, but let me just confirm. During this test are they

looking at bloodflow in the brain? And can poor bloodflow signify

seizure activity or some other disorder?

While your son's EEG's are normal now, had your son ever had an

abnormal EEG? Finally, during one of your son's episodes (e.g.,

staring episode), is it possible to get him to snap out of it by

making a loud noise or grabbing his arm or something?

Kim

> Hi,

> I wanted to respond because my son has seizures, I wrote earlier

about the difficulty we had in identifying what was going on. After

3 years finally found a neurologist who wanted an MRI and MEG scan as

badly as we did. While performing the MEG scan they put some

electrodes on and did a very detailed EEG and found that my son had

some low level problems in his frontal lobe. The doctor then handed

me a book that was very helpful in understanding all the different

types of seizures. My son had ones that seemed to be hallucigenic

and staring episodes but in addition he would have seizures that

would not stop for hours affecting his breathing. We seemed to be

met with baffled ER staff's that just didn't have an answer for what

was happening. The very helpful book by the way is Epilepsy Patient

and Family Guide, by Orrin Devinsky, M.D.. My son is high

functioning, Aspergers and didn't really show strong signs of AS/Nids

until after he contracted the rotovirus. I hope this helps

> some I have been helped so much by the post on this website and

hope I can return the favors.

>

> We are not yet a patient of Dr. G's but hope to use his protocal as

soon as we can convince a doctor to sit and read the data. Our local

A.S.A chapter is gaining an understanding and looking also for local

doctors to assist our children. I do not want to sound like I am

expert on seizures but the book helped me determine what was a

seizure and what was stimming, or even daydreaming and tics. Much

luck to you.

[Guest guest]

Thank you all for responding. Much appreciated.

I am going to look into all of the information you gave me. I really

think we need to do more testing to figure out what is going on. I

just need to find the right doctor/neurologist (since Dr. G is not

seeing new patients). I find it very interesting what you said about

fine motor skills and herpes. My son has very poor fine motor. Even

after two years of intensive OT, when he sits down to cut with

scissors or write with a pencil he always does it using TWO hands on

the instrument and even then he can't complete the task. Someone has

to position those things correctly and help him every time. His brain

doesn't know what to do with the left side of his body. His OT said

he fell in the bottom 4% of children his age, but you wouldn't know

it by looking at his gross motor skills. Very puzzling. Thanks again

so much!

Kim