5 year old boy with tics

[vvalentine]

Hello all. I am glad to find this forum.

 

My son was fine until he had a shot of rocephyn for a swollen eye in may. he had a seizure at that time,a dn aanother 13 days later and was doing well for about two months afterwards. now he has presented with a lot of tics. he blinks, clenches his fists, curls his toes and cranes his neck. this has just started.

 

today i noticed bruxism for the first time. my mother, sister and I all suffer from bruxism.

 

he now has a fever. today after the second dose of tylenol he started witht he tics like crazy. he felt like he had the hiccups to cuddle with him.

 

He's lost focus and after being one of the most sober and receptive children i've ever met is strtign to have a hard time paying attentiona dn is missing things I say and forgetting conversations. this has just started too.

 

i want to get this right the first time and am very appreciative for any help and advice you will offer me. I've spent the last four years battlign breast cancer and am single with no help so i can really use any wisdom to guide me through this. I promised him i owuld do enerythign i can. please help me do it well. as i'm sure you all understand, this little boy means the world to me. i will o whatever it takes to prevent this getting worse, as it seems to be doing, and fast.

 

my questions:

 

(1) he is scheduled for an MRI tomorrow with sedationa nd contrast adn I want to cancel as i think having had a high fever todaya dn needing tylenol and advil his poor little system has had enough.

 

(2) I have had him at a neurologist who said he needs plenty of sleep and that video games and stress could execerbate this. that seems pretty obvious but what else? what sort of doctor that is covered by insurance can help me?

 

(3) he's so smart - startign first grade a eyar early in a couple of weeks and really really scared by the loss of control over his body. How do you deal with the trauma of this? what can i do to make it easier for him? I have literally dropped everything and am able to dedicate all of my time to him so any suggestions are more than welcome. I need help figuring out how all of this works. I do not want to medicate him, I feel he;s already suffering from toxicity.

 

thank you

[faith]

valentine,

hello and welcome,

I would start by going the medical route first, that is, getting him checked by mainstream docs and pediatric neurologis, as at least these visits will be covered.

 

The rest, you will have to research yourself, by reading as much as you can here and any other place you can find info on alternative treatment. It will be hard at first, because you don't really know which way to turn right now, but if your child is having tics, either you will find a medical reason, or it will just be classified as "tic disorder" or possibly tourettes. Then you will have to decide which interventions you will try, dietary, supplements, natural doctors (not covered by insurance and can be expensive), looking into allergies, etc.

 

You say he is five, and you mention the rocyphen (I'm guessing this is antibiotic)? Did he have any recent vaccinations to start school this year? Some of us have the belief that vaccines are a problem for kids with a predisposition to tics and can trigger these problems. Your feeling of him having toxicity is probably on the mark, so maybe start there. I wish I could tell you more, but we'll all be glad to answer any inquiries you have. There's so much to read here, it can be overwhelming. Read over some of the posts that have "new here" in the topic, then you can see what advice other members have given them and you can compare their stories to yours.

 

Blessings,

Faith

[vvalentine]

Thank you so much for your reply.

 

I am wondering what toxins besides lead and mercury. I will talk to his neurologist again tomorrow and want to know all of the tests to request that might be covered by insurance.

 

right now we have had a video EEG a regular EEG an emergency room blood test after the second seizure and four trips to teh Dan Marino center for pediatric Neurology or whatever it is called. I plan to reschedule the MRI tomorrow, I am concerned aobut his fever being so high and then having the sedation and contrast tomorrow, but I do plan to get the MRI asap.

 

I will make an allergists appt and they can order a ton of blood tests, i suppose, although the last set (almost 2 years ago) showed no allergies.

 

Are there levels of anyting that can be checked that make it more clear waht is going on? the neurologist only ordered lead, and i have a call in to add mercury to that.

 

tnanks again.

 

i am reading like mad, but now i think need to sleep too.

[ilovedogs]

Thank you so much for your reply.

 

I am wondering what toxins besides lead and mercury. I will talk to his neurologist again tomorrow and want to know all of the tests to request that might be covered by insurance.

 

right now we have had a video EEG a regular EEG an emergency room blood test after the second seizure and four trips to teh Dan Marino center for pediatric Neurology or whatever it is called. I plan to reschedule the MRI tomorrow, I am concerned aobut his fever being so high and then having the sedation and contrast tomorrow, but I do plan to get the MRI asap.

 

I will make an allergists appt and they can order a ton of blood tests, i suppose, although the last set (almost 2 years ago) showed no allergies.

 

Are there levels of anyting that can be checked that make it more clear waht is going on? the neurologist only ordered lead, and i have a call in to add mercury to that.

 

tnanks again.

 

i am reading like mad, but now i think need to sleep too.

 

As for other toxins you could have problems such as yeast or chemical sensititives. I agree with Faith in that you should get the testing done(I agree with waiting on the tests for now b/c of his fever) and rule out other causes of tics. There was a mom(I believe her name was 'myrose') here who found out that her dd was having seizures and that it was causing tics and anxiety. Once they got her on the right medication, all the strange behaviors stopped.

Welcome to the boards, by the way!

[kim]

Valentine,

 

Is this the drug that your son was given?

 

ceftriaxone or Rocephin Roche Pharmaceuticals

[vvalentine]

Yes, It was administered in the hospital via two intramuscular shots. He had his first seizure as they were pulling the needle out. He had sea lice in his eye. I didn't want to get the shot but the doctor said to and my exhusband likes to do what the doctor says. THe nurse cried out "seizure adn hooked him to the vitals tracking machines as soon as it started. But when the doctor was summoned he said it wasn't a seizure, that my son had fallen asleep and been startled upon awakening. SO there's no record of it being a drug reaction.

 

Even my exhusband, who ws there says things like, "but the doctor said it wasn't a seizure" and I say "you were there, you saw it" and he wants to go with what the doctor said instead. I grew up with a close friend with epilepsy, I know what a seizure looks like. I reported it to his doctor, who disregarded it and gave him a second antibiotic (he's allergic to amoxcicillin, broke out in spots with it) that when I read the infor online said was not for anyone with a seizure history. I asked her about it, she said the hospital report says no seizure, therefore there was no seizure.

 

Then, a few days later he has a grand mal seizure at school. Theya re calling that the first seizure and saying there's no explanation.

 

I am very frustrated and don't know how to get my voice heard. I am a Phd level researcher with some experience in teh sciences (although I major/teach more along the lines of philosophy of science/structure of scientific/medical studies rather than applied science) , I am his mother, I have been home with him all summer and researching (seizures, the tics just started so i'm just starting to learn more about them). I need to find local experts that are likely to take me seriously and consider my son as an individual. WE are in the fort lauderdale area and willing to go south to miami or as far north as Jupiter for a good doc who takes blue cross

 

i don't mean to lay everythgn out but i am busy taking care of him (he's got a fever/sore throat/runny nose and all these new tics), when i get a minute to research i get very task oriented

 

i'mtaking it i shoud test for PANDAS while he is sick? i will not take him back to doc who get me here. THere must be soemone good in south florida. I'm going to go assemble the leads.

 

thank you so much for all insights - especially things that might seem obvious to you that i haven't even considered!!

 

Valentine,

 

Is this the drug that your son was given?

 

ceftriaxone or Rocephin Roche Pharmaceuticals

[Chemar]

Hi

 

sorry to post and run but am working....a flag went up for me when u said "fever, sore throat...."

 

in addition to whatever else is happening ......maybe also check for strep/PANDAS

 

have a look at our "essential threads" pinned to the top of the forum too

 

hope all stabilizes soon for your child

[vvalentine]

thanks, Chemar. I was able to get an appt with albert robbins who wrote a book chapter about this and he will be strep and strep titer tested this afternoon. i thank you for responding form work. please, when you have more time, i would really appreciate any other of your insights as I see you have a mountain of knowledge/experience. i man a breast cancer board where i help epople not make the mistakes I did and am very lucky to find a similar place to get advice for my son as i give to tohers about my subject of unfortunate "expertise"

 

Hi

 

sorry to post and run but am working....a flag went up for me when u said "fever, sore throat...."

 

in addition to whatever else is happening ......maybe also check for strep/PANDAS

 

have a look at our "essential threads" pinned to the top of the forum too

 

hope all stabilizes soon for your child

[kim]

Valentine,

 

I'm wondering if your son had any blood work after the seizure activity.

 

This article made me wonder about the way his body may be utilizing (or not) calcium? How about liver function?

 

I hope your appt went well and started you on the road to some answers for your son.

 

http://www.medscape.com/viewarticle/562684

 

September 11, 2007 — The safety labeling for ceftriaxone sodium injection (Rocephin; Roche Pharmaceuticals, Inc) has been updated to describe the potential risks associated with concomitant use of calcium or calcium-containing solutions and products in patients of any age, the US Food and Drug Administration (FDA) advised healthcare professionals in a new alert today.

 

Edit.. I can not get the link to this article to work. If you search.... Rocephin Plus Calcium Linked to Fatal Reactions

It will pop right up. I thought the med scape article was most helpful