Re: Failed melatonin sleep EEG

[Guest guest]

Oh Margaret what a nightmare, I think I'll try and skip this altogether if its suggested

Mx

As I suspected, the whole thing was a very stressful failure. They only prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more agitated and wanted to run off. There were delays in getting the medication, so he was already agitated and trying to run off. The room was clinical and didn't say sleep and relaxation. No way was he going to sleep. I am going to write to the neurologist and say I want a sleep EEG done overnight at the Neville Childhood Epilepsy Centre.Margaret

[Guest guest]

Hi MargaretHow disappointing... though not completely unpredictable.. they simply do not think.. When we did Tash's sleep deprived.. having had to keep her up at home... she was greeted at hospital in a brightly lit noisy environment full of exciting activities and toys!!

Hope that they agree to a sleep deprived one.. as it is only with this tiredness and additional stress that you are anywhere likely to have any seizure activity on an EEG.Best Wishes

Tracey

 

As I suspected, the whole thing was a very stressful failure. They only prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more agitated and wanted to run off. There were delays in getting the medication, so he was already agitated and trying to run off. The room was clinical and didn't say sleep and relaxation. No way was he going to sleep. I am going to write to the neurologist and say I want a sleep EEG done overnight at the Neville Childhood Epilepsy Centre.

Margaret

[Guest guest]

Margaret,DS is 5 and 40 lbs and it took 6 mg for him to sleep for his EEG (and that took 45 minutes) so I can actually imagine what you went through and I'm so sorry you had to endure this. 2 mg is nothing.The first time they did DS's EEG they gave him a drug that made him arm flap, go completely into his own world and weak at the knees. I yelled like a big grizzly and they then did it my way. My point, let them know how angry you are and get them to do it the way you want to do it. You know the child best.I'm always so upset to hear what children must endure. I really hope the next time it goes better. xSubject: Failed melatonin sleep EEGTo: Autism-Biomedical-Europe Date: Thursday, January 20, 2011, 3:12 AM

As I suspected, the whole thing was a very stressful failure. They only prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more agitated and wanted to run off. There were delays in getting the medication, so he was already agitated and trying to run off. The room was clinical and didn't say sleep and relaxation. No way was he going to sleep. I am going to write to the neurologist and say I want a sleep EEG done overnight at the Neville Childhood Epilepsy Centre.

Margaret

[Guest guest]

Hi Margaret,

Sorry to hear your bad experience. Roni was given 10 mg melatoning, kept him

sleep for an hour..

I was thinking about Tracey's words..if you keep a child awake all night, chance

for having a seizure perhaps higher...tiredness..I am going to ask the

consequences of sleep deprived EEG to my neurolog on Friday..Why did they give

low dose of melatonin, I wonder...dosage must be adjust with the child's weight,

isn't it.?

Best wishes

nevin

>

> As I suspected, the whole thing was a very stressful failure. They only

prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more

agitated and wanted to run off. There were delays in getting the medication, so

he was already agitated and trying to run off. The room was clinical and didn't

say sleep and relaxation. No way was he going to sleep. I am going to write to

the neurologist and say I want a sleep EEG done overnight at the Neville

Childhood Epilepsy Centre.

> Margaret

>

[Guest guest]

We had a similar experience with 2mg finally being given but no sleep coming ... all that stress for nothing on tape! Our test was over a year ago and what I now remember the most was trying to keep charlie awake, we ended up going shopping at ASDA around midnight, I was shocked by how many kids were there at that time of night! The test was a lot of stress and then the sleep deprivation set us up for more seizures we gained nothing from this.Last week we got our 24hr EEG at cromwell hospital. We had been having seizures every day but true to form for that 24hrs absolutely nothing!!! On the plus side we have had a whole week seizure free! We did however show some abnormality so was informative but still labelled with generalised seizure disorder. We had a debrief at CWH with the ped neuro today. We have now been offered a lumbar puncture which we will not take up in the short term, a little over testing charlie with no real answers to date (outside of ruling what rare things he has not got!). I am sticking to TST, diet and good sleep.With the recent closure of St mary's 24hr EEG unit CWH is setting up their own 24hr EEG hoping to open by March to help look after children with seizures. Hope your little one sleeps well.Kate

Hi Margaret,

Sorry to hear your bad experience. Roni was given 10 mg melatoning, kept him sleep for an hour..

I was thinking about Tracey's words..if you keep a child awake all night, chance for having a seizure perhaps higher...tiredness..I am going to ask the consequences of sleep deprived EEG to my neurolog on Friday..Why did they give low dose of melatonin, I wonder...dosage must be adjust with the child's weight, isn't it.?

Best wishes

nevin

>

> As I suspected, the whole thing was a very stressful failure. They only prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more agitated and wanted to run off. There were delays in getting the medication, so he was already agitated and trying to run off. The room was clinical and didn't say sleep and relaxation. No way was he going to sleep. I am going to write to the neurologist and say I want a sleep EEG done overnight at the Neville Childhood Epilepsy Centre.

> Margaret

>

[Guest guest]

hi all i see you are all using 2mg melatonin I have a friend who used 12 mg on

her 8 yr old and it seems to do the trick.. the other thing to attempt as i

found it works on everybody I mentioned it to is:is frankinsence oil mixed into

a base oil and rubbed into the feet at night. this oil is slow release and

certainly helps people isobel x

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> > > As I suspected, the whole thing was a very stressful failure. They only

prescibed 2mg of Melatonin for a tall, heavy 11 year old. He grew more and more

agitated and wanted to run off. There were delays in getting the medication, so

he was already agitated and trying to run off. The room was clinical and didn't

say sleep and relaxation. No way was he going to sleep. I am going to write to

the neurologist and say I want a sleep EEG done overnight at the Neville

Childhood Epilepsy Centre.

> > > Margaret

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> >

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