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Jobs & Parenting Expert
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Nov 4, 2009, 09:26 PM
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Originally Posted by N0help4u
One thing that is good for kids with problems that would be helpful is essential fatty acid.
It's been reported recently that we, especially kids, are not getting the Vitamin D we need. The RDA is far, far less than what is needed. Who knows what else we are missing, and what we are taking in that hurts and even kills us.
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Uber Member
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Nov 4, 2009, 10:05 PM
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Have to spread the rep Wondergirl. Yes vitamin D is making a big come back in the media and medical field. Way back when they said we need to avoid the sun and people turned to tanning beds I said that we were going to eventually end up having a problem with vitamin D deficiencies. I am surprised it took so long for them to realize this.
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Ultra Member
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Nov 4, 2009, 10:38 PM
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Originally Posted by N0help4u
Have to spread the rep Wondergirl. Yes vitamin D is making a big come back in the media and medical field. Way back when they said we need to avoid the sun and people turned to tanning beds I said that we were going to eventually end up having a problem with vitamin D deficiencies. I am surprised it took so long for them to realize this.
So true! I live in Australia and for years we have been hammered with 'don't go out into the sun'. I have always been skeptical, because why would we have the sun if we didn't need to get sunlight! So everyone went around covering themselves 24/7 and now of course we have a huge problem with Vitamin D deficiency. And, we are only realizing now how important and essential this vitamin is to the functioning our or bodies and brains.
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Jobs & Parenting Expert
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Nov 4, 2009, 10:44 PM
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We used to play outdoors spring through winter (and got all our vitamin D) until our moms dragged us in at dark to do homework or chores. Now all the entertainment is in the house -- computers, game systems, TV -- and moms don't want their kids wandering around loose outdoors.
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Uber Member
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Nov 5, 2009, 05:29 AM
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CM they tell us that here too. They have everybody believing that but the doctors that are against immunizations have the state law immunization exemption/waiver forms for each state.
I think the others are right that it probably isn't autism in your sons case though.
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Ultra Member
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Nov 5, 2009, 08:48 AM
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I ask him what happens or what's wrong or why does he do it ,I've asked him loads of different ways and he doesn't understand he just says he doesn't know
Hi Cookie,
Don't ask him why he does it or what is wrong. IF it's some kind of seizure, he has no way of knowing why it happens to him or what is wrong. Plus, it's been happening basically his whole life, so it's almost normal to him. So keep that in mind.
Instead, the next time it happens, try to answer the following questions.
Can he hear you and talk to you. Ask him something you know he knows the answer to and that he could normally answer, like a pet's name.
If he can't communicate with you during the episode, then write that down.
Ask him if he feels different than he did earlier. (Don't ask how, because that may be too much for him to answer.) Just ask if he feels different.
If he can talk during or any time after and begins to talk about it in anyway at all--when he sees you are interested in his experience of it -- don't interrupt him, but let him talk and really listen to what he says and write it down. It may not make a lot of sense, because he's four, but I'm guessing if you pay attention, there are clues to what is going on with him.
Do get an appointment with a pediatric neurologist. You might have to travel to see one, but I personally would not hesitate to do that. If your son IS having seizures, they should be controlled, as they are bad for his brain. There are lots of things that can cause seizures, so they are just a symptom. If it's not seizures, you still need to find out what it is.
To me, this does not sound like autism or tourettes, but I am not a neurologist!
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Ultra Member
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Nov 5, 2009, 08:51 AM
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PS. It's important to be able to give the doctor as much information as possible. Your video tape of him sleeping is excellent. You could do the same when he is awake and having an episode, possibly have someone film that while you are trying to get him to talk to you.
You've been hitting some dead ends, but I think your instincts are right and you are doing the right things.
Good luck!
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Uber Member
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Nov 5, 2009, 12:16 PM
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Have to spread the rep.
video taping is an excellent idea and all your points are good.
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Senior Member
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Nov 5, 2009, 04:27 PM
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Asking- You asked if my son has a regular pediatrician who can evaluate his development,They don't do that in ireland they see a health nurse and the older they get the longer between visits.And are new health nurse who the first time she met my son and watched the video of him at meal time shaking his head and me calling him and him asking ''whats wrong mammy'' she said there was nothing wrong with him,she didn't bother with any tests etc she spoke to him and he would not cooperate with her.Hes been seeing a speech therapist the last few months and the odd lesson he won't take part or talk to her and he knows her well.
As for the other questions which arm its always his left.
His eyes are always open.Mouth slightly open enough for the tip of his tongue to be showing,Its at least a centimeter out of his mouth.
Wondergirl-Both my sons take vitamins,eat fish etc never had a problem with them eating.I bake my own cakes,biscuits,cookies so I know what they are eating they eat fruit aswel and some vegetables,make my own soups also.
Artlady-im not to sure about Aspergers syndrome my son knows when he has done wrong he comes and says he's sorry,or if he's hurt or upset his brother he goes and gives him a hug and a kiss and says he's sorry,or when I've been upset he comes and gets on my knee and gives me a cuddle and a kiss asks why I'm crying or upset or angry.
Asking-When my son is shaking his head and I call his name in alow soft voice he doesn't respond if I raise it louder he will come out of it.When he's shaking his head its like there's nobody home,Sometimes it looks like he's looking at me or something else when he's doing it but he's not actually looking at anything he's miles away.I have asked him if he feels different or strange after he's been shaking his head but he doesn't know or doesn't understand the question,I've asked if his head feels funny or if he feels sick or dizzy I've tried every way I can think of to ask him.and I always listen to what he has to say even if it's the 20th time in 5 minutes that he's asked the same question,and when he's rushing to say something I ask him to stop,calm down and think about what he wants to say and then tell me [he is at speech therapy because sometimes he's hard to understand].
Its OK people saying he needs to see a pediatric neurologist and sort this out as soon as possible because it could damage the brain.But the doctors here are eliminating things step by step its taken a year just to get an EEG,And well over a year for a child psycologist.His pediatric nurse doesn't seem to listen she told me at first he's copying it off someone else [we keep are selves to are selves] so this isn't the case here.she just looks at me as a over worried parent and I think I have right to be as this behaviour is not normal,she basically gives me the ''what do you know'' look,when she hasn't seen it first hand and he wouldn't do it even if she came to are house,he tries so hard to fight it when people he doesn't know are around.hes been going to nursery the last week and without me mentioning it to the member of staff working at the time after I had mentioned it to her she pointed out that she had seen his hand shaking and pulling his arm to his chest and making a fist and slightly shaking his head [he was fighting it so the other kids didn't see] sometimes I think he's aware of what he's doing and other times its like he's not.
I have explained it all in depth to my doctor,His healthnurse,2 pediatric nurses,The doctor who did the EEG.
Is there anyway I could upload a video to show you??
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Ultra Member
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Nov 5, 2009, 04:55 PM
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Cookie,
Apparently, neurologists are in short supply in Ireland. To me, your son's nurse does not sound very helpful or knowledgeable.
I doubt anyone here knows enough to tell much more than we have. Your description is very thorough but none of us is a doctor, let alone a neurologist.
I would advise that you call Brainwave, the Irish Epilepsy Association. Even if it isn't mild epilepsy, I'm hoping they will help you figure out what to do next. Their website says they have a nurse who is a specialist who can talk to you on the phone.
Brainwave The Irish Epilepsy Association
249 Crumlin Road
Crumlin
Dublin 12.
Tel: 01 455 7500
Fax: 01 455 7013
Contact Us - About Brainwave - Brainwave
Specialist Nurse Helpline 01 455 4133 (operates from 09.30 - 13.00 on Monday and Wednesday
See if you think this sounds like your son.
http://www.epilepsy.ie/assets/2/D2FB...l_Seizures.pdf
Read around on their website. Call them soon!
Good luck!
[Posted: Thu 06/03/2008]
Ireland still has the lowest rate of consultant neurologists and rehabilitation specialists in Europe, the Irish Epilepsy Association, Brainwave, has said.
Neurology services still lacking
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Expert
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Nov 5, 2009, 05:05 PM
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I have to spread the love Asking... but I think you are right on target here.
Originally Posted by COOKIE MONSTER
As for the other questions which arm its always his left.
It's possible that the right brain is affected.
Originally Posted by COOKIE MONSTER
Mouth slightly open enough for the tip of his tongue to be showing,Its at least a centimeter out of his mouth.
Another common symptom.
Originally Posted by COOKIE MONSTER
When my son is shaking his head and i call his name in alow soft voice he doesnt respond if i raise it louder he will come out of it.
Has his hearing been tested?
Originally Posted by COOKIE MONSTER
.When hes shaking his head its like theres nobody home,Sometimes it looks like hes looking at me or something else when hes doing it but hes not actually looking at anything hes miles away.
This is another common symptom of epilepsy.
Originally Posted by COOKIE MONSTER
Its ok people saying he needs to see a pediatric neurologist and sort this out as soon as possible because it could damage the brain.But the doctors here are eliminating things step by step its taken a year just to get an EEG,And well over a year for a child psycologist.His pediatric nurse doesnt seem to listen she told me at first hes copying it off someone else [we keep are selves to are selves] so this isnt the case here.she just looks at me as a over worried parent and i think i have right to be as this behaviour is not normal,she basically gives me the ''what do you know'' look,when she hasnt seen it first hand and he wouldnt do it even if she came to are house,he tries so hard to fight it when people he doesnt know are around.hes been going to nursery the last week and without me mentioning it to the member of staff working at the time after i had mentioned it to her she pointed out that she had seen his hand shaking and pulling his arm to his chest and making a fist and slightly shaking his head [he was fighting it so the other kids didnt see] sometimes i think hes aware of what hes doing and other times its like hes not.
I have explained it all in depth to my doctor,His healthnurse,2 pediatric nurses,The doctor who did the EEG.
Is there anyway i could upload a video to show you????
Unfortunately, this is part and parcel of socialized medicine. I'm glad we don't have it here in the US. Hope we never do as a matter of fact. This nurse sounds like a quack to me, as well as the doctors he has seen.
You can't upload a video here... BUT you can upload one to YouTube and post the link here so that we can see it.
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Uber Member
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Nov 5, 2009, 05:24 PM
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I hope we never get the socialized medicine either.
I agree with asking and J_9, he needs a good evaluation. I hope everything works out for you. I know it is hard going through something like this.
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Jobs & Parenting Expert
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Nov 5, 2009, 05:29 PM
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My 26 y/o cyber son in Denmark had a form of juvenile epilepsy with similar symptoms. If I see him online tonight, I'll ask him more questions.
I would rule out Asperger's or any other form of autism.
Yes, please follow up with the information asking gave you.
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Ultra Member
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Nov 5, 2009, 05:35 PM
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Glad we all agree --except on the socialized medicine.
I pay $1200/month for my health insurance and it's draining my savings like water out of a bathtub. I will have to sell my house at some point soon if we don't get a public option. I'm hoping I can wait until my son graduates from high school.
I pay all this money, but when I had a post surgical infection inside my abdomen after major surgery, I went to see my doctor, and she wouldn't even see me (she came out and peeked at me in the waiting room and then ducked around a corner to hide), and the local hospital wouldn't accept me either. The receptionist sent me to an emergency room in a city 85 miles away where I sat in a hallway for 17 hours before I was admitted to the hospital and given (duh) antibiotics. They were apparently afraid of malpractice, so my own doctor would neither treat me nor talk to me or help me in any way.
I would love medicare for all! If I''m going to be treated like that, I'd like to be able to keep my house...
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Senior Member
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Nov 5, 2009, 06:04 PM
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Hi again I have just uploaded vids to utube for you to see for yourself it's the only way that you can understand what I mean,all 4 are of my son
YouTube - BECKYJCOOKIE1
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Senior Member
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Nov 5, 2009, 06:14 PM
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My son was sent to temple street hospital in dublin for his EEG I'm still waiting the results they should be back in the next 3 weeks [FINGERS CROSSED]
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Jobs & Parenting Expert
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Nov 5, 2009, 06:31 PM
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I watched three of the videos (thanks, COOKIE!). It's definitely involuntary, and not a habit or something he is wanting to do.
When did the head shaking start? Did he bump his head badly as a toddler, or have some kind of head injury? Did anyone ever check his spinal fluid? Even as an infant did he make unusual movements?
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Senior Member
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Nov 5, 2009, 07:02 PM
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Well it started with him talking and laughing to himself about 2 years ago, then shortly after the head shaking started.
He did have 1 fall but he was fine,no lumps bumps or anything,wasn't sick or concust or sleepy [was taken to the docs for a once over and she said he was fine].
He was fine until he hit 2 he wasn't clumsy,walked fine,speech wasn't great,no head shaking nothing.
No mone ever checked his spinal fluid,he did have a sweat test because he was always constipated and in serious pain and smelt REALLY bad.
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