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    #104379 - 06/07/11 07:35 AM Re: His doc is shocked. [Re: JustAMom]
    Nik Offline
    Member

    Registered: 11/02/10
    Posts: 286
    Thanks Grinity,
    I actually have that book...Guess I need to read it again. My DD fits the "delayed sleep phase syndrome" described on that link. I understand that people with ADHD don't produce melatonin so the suggested light therapy probably wouldn't be effective in that case. We have melatonin pills - I guess I just need to make sure she takes them regularly (which is hard to monitor because I fall asleep around 9:30pm whether I like it or not and she forgets to take the pills or chooses not to since she likes reading all night!)

    Oh, where is the magic fix-it-all-now pill????

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    #104382 - 06/07/11 07:58 AM Re: His doc is shocked. [Re: Nik]
    Grinity Offline
    Member

    Registered: 12/13/05
    Posts: 7207
    Loc: Connecticut
    Originally Posted By: Nik

    Oh, where is the magic fix-it-all-now pill????

    www.appliedmeditation.org

    and

    Transforming the Difficult Child Workbook: An Interactive Guide to The Nurtured Heart Approach (9780967050751): Lisa Bravo, Howard Glasser

    I will warn you that 'now' is a relative term (wink)
    But, seriously, we have complete freedom of perspective, and almost always we can choose to see our circumstances a number of different ways. There is so much about life that we can't know, so 'back seat driving' eventually becomes less apealling, yes?

    Love and More Love,
    Grinity
    _________________________
    Coaching available, at SchoolSuccessSolutions.com

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    #104421 - 06/07/11 09:11 PM Re: His doc is shocked. [Re: Nik]
    ginger234 Offline
    Member

    Registered: 04/03/10
    Posts: 94
    Loc: Florida
    I will try give you the cliff's notes version: Beginning in high school I had terrible issues with getting up in the morning. I also had a difficult time staying asleep at night. All through college I missed classes if they were scheduled in the morning. I avoided taking those offered during early hours as much as possible, but I went to a small school & it wasn't always feasible. Most people thought of it as laziness (that was painful). frown
    Back in 1990 at the end of college I started seeing a psychiatric resident at a local university medical center for depression. She picked up on the sleep problem & realized I was dealing with something organic. This particular medical center happened to also have a sleep center & she got me in to have a sleep study done. I was dx'd with nocturnal myoclonus & periodic limb movement disorder; now pretty much just known as Restless legs syndrome. My legs were moving about once a minute for 5 hours. And I was having alpha-delta sleep. I have been on a couple of different meds since except when I have been pregnant. The medication I take now is one that Parkinson's disease patients might take.
    This is a link to the Web MD info on restless legs syndrome: restless legs info They have good info on other sleep disorders, too.
    If you have other questions I will try to answer them. Or you can PM me. sleep
    _________________________
    When you're curious, you find lots of interesting things to do. Walt Disney

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    #104445 - 06/08/11 06:13 AM Re: His doc is shocked. [Re: ginger234]
    JustAMom Offline
    Member

    Registered: 06/28/08
    Posts: 89
    Ginger, it sounds quite similar to what my son is going through at the moment. I knew two of his favorite teachers were at their wits end trying to get him to graduate and they wondered why a smart guy like him was making decisions to procrastinate instead of ask for help. Lazy had been tossed around many times. While the consequence of going to court and mandated tutoring significantly improved failing grades to nearly perfect final exams, his math teacher ran to the school councilor's office to complain about my son missing her finals... the morning he had his seizure. The whole intervention committee was shocked as I was. I guess the conclusion would be, yes, he is highly capable and yes, he has an undiagnosed medical condition affecting his capabilities.

    So far I've learned there is a very small number of neurologists who treat patients with ADHD, seizures, and can diagnose Asperger. We were given a recommendation to one who has an interest in patients with Asperger and seizures however, her waiting list begins in 2012! In the meantime, his current neurologist can send information for consultation.

    Unique. I'm finding the statistics for my son put him in a very small percentage of the population: high IQ, ADHD, (possible) Asperger, had a generalized seizure. Even his response to keppra is a little surprising to the pharmacist. He is more impulsive and hyperactive like where he is usually absent minded, quiet, and shy. At least I know what he's thinking at the moment.

    Nik - I want the answers "now" and I can't find my magic wand.


    Edited by JustAMom (06/08/11 06:14 AM)

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    #104455 - 06/08/11 07:34 AM Re: His doc is shocked. [Re: JustAMom]
    Nik Offline
    Member

    Registered: 11/02/10
    Posts: 286
    Thanks for sharing Ginger, I'm sorry it took so long for you to finally find the right dx. I really would like to have a sleep study done for DD but the cheapest I can find is over $2K and I am not even sure my DD would be able to fall asleep in a strange place knowing she is being studied...she has a hard enough time in her own bed!

    I know it must be painful to have everyone think you are just lazy, My DD has been dealing with that for many years "major procrastinator" "no work ethic" "super smart but lazy" "choosing to fail" even "passive aggressive" are what she heard regularly from many of her teachers. I only just recently woke up to realizing something else was at play, unfortunately, even with the formal dx we have, my DH and my ex seem to think I am just making excuses for DD frown

    Good luck Justamom, with waiting lists that long, you would think more docs would realize the need and jump on it.

    Have they ruled out the medication as the cause of the generalized seizure? I am sure they know what they are doing and I know nothing about this stuff but I read somewhere that when people go off the stimulants and then back on, they can have really severe reactions like heart attacks etc. I wish I could remember where I saw that.

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    #104458 - 06/08/11 07:47 AM Re: His doc is shocked. [Re: JustAMom]
    Grinity Offline
    Member

    Registered: 12/13/05
    Posts: 7207
    Loc: Connecticut
    Originally Posted By: JustAMom
    We were given a recommendation to one who has an interest in patients with Asperger and seizures however, her waiting list begins in 2012! In the meantime, his current neurologist can send information for consultation.

    Best Wishes Justamom. It's possible that the consultation request from the current neurologist will provide a quicker opening than going through the front door with the waiting list. Or it's quite possible that the current neurologist - with help from this specialist - will be able to do a good job.

    There is a 'joke' expression in medicine: 'See one, Do one, Teach one' that actually points to the very good job that the training and enculturation does to help physicians be lifelong learners and teachers.

    Love and More Love,
    Grinity
    _________________________
    Coaching available, at SchoolSuccessSolutions.com

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    #104504 - 06/08/11 12:25 PM Re: His doc is shocked. [Re: Nik]
    Grinity Offline
    Member

    Registered: 12/13/05
    Posts: 7207
    Loc: Connecticut
    Originally Posted By: Nik
    Thanks Grinity,
    I actually have that book...Guess I need to read it again. My DD fits the "delayed sleep phase syndrome"

    My son also seemed to take f.o.r.e.v.e.r to fall asleep. The melatonin helped him fall asleep, and also, it helped him a lot to have a regular 'early' bedtime. It seemed that the more hours he slept the 'better' his quality of sleep, and the easier it was for him to settle in. We'd notice around age 12 that if he went up at 9:30 it was 74x easier for him to fall asleep than if bedtime was 10pm.
    As DS has gotten older, we've been less determined to stick to this,
    I'd give the meletonin when I go to bed and used to 'put the electronics to bed' around that time also. Boy it's been a tough issue. This year he is at boarding school and says up much too late, but I don't have to deal with any of it, and he seems to be tolerating it.

    Smiles,
    Grinity
    _________________________
    Coaching available, at SchoolSuccessSolutions.com

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    #104506 - 06/08/11 01:02 PM Re: His doc is shocked. [Re: Grinity]
    barbarajean Offline
    Member

    Registered: 05/27/11
    Posts: 102
    Just an update and a note

    I just wanted to say that you post a lot of useful info. I keep seeing similar behaviors to my ds10. And this sleep issue is so true for my ds, and yes I think I am going to make an appointment with Dr Amend in Kentucky ( referred to in an earlier post), and hopefully get a plan to work on. So I guess now the next step is to organize all the behavioral info for the call. I'm concerned that I am going to miss info in the call. I guess I'm a bit intimated to make the first call but reading this forum is really, really helping to move to the next step.

    By the way is there a spell to use on this forum?

    barb

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    #104520 - 06/08/11 05:07 PM Re: His doc is shocked. [Re: Nik]
    JustAMom Offline
    Member

    Registered: 06/28/08
    Posts: 89
    Originally Posted By: Nik
    Have they ruled out the medication as the cause of the generalized seizure? I am sure they know what they are doing and I know nothing about this stuff but I read somewhere that when people go off the stimulants and then back on, they can have really severe reactions like heart attacks etc. I wish I could remember where I saw that.


    It depends on which doctor I ask. Sleep deprivation and excessive stress was most likely the cause. His psychiatrist who has been treating him the longest, doesn't want him on anything. His general practioner says he needs better sleep habits and get this checked out ASAP. He agreed with one neurologist that he may be "neuro-sensitive". It's not exactly a medical term but that is how the ER neurologist explained it (he also put him on Keppra with enough refills for 3 months) The ER neurologist didn't think my son should have stopped Vyvance which is a very small amount - 30mgs. (That is all my son would agree to take to improve his school situation) We went to the ER again for medical management until his appointment with a neurologist who will take my son as a patient. The 2nd ER doc also thought it was most likely sleep deprivation and stress. He says the amount of Vyvance my son was taking was the amount he prescribes for 10 yr olds and my son has been on vyvance since his freshman year at much higher dosages before. He says the tests they will do will deprive him of sleep in order to show irregular brain waves so having a seizure just tells us he has an underlying neurlogical condition that needs to be determined. All of them said he needs 10 hours of uninterrupted sleep daily.

    The strangest part is his EEG. We can't find it. The ER neurologist had blocked it on the record "to be interpreted by neurologist only" and told us he would study it and get back to us in a month. The 2nd ER doc says we can get it on a CD disc the next time we come back to the ER. We went to another hospital the 2nd time because they have a seizure center there. The first ER neurologist is on vacation and his office cannot help because they haven't seen him there. The 2nd ER doc thought it was peculiar that he was put on Keppra for having a generalized seizure for the first time. He thought the EEG may show something concerning but I shouldn't worry because a neurolgist wouldn't jeopardize his career. crazy

    Anyway, the neurologist he will be seeing in a few days is quite established. His office says if my son is needing a specialized epitologist, they will refer him out. My son says he feels great... though the rest of us think keppra is making him very loopy.

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    #107039 - 07/14/11 04:48 PM Re: His doc is shocked. [Re: JustAMom]
    JustAMom Offline
    Member

    Registered: 06/28/08
    Posts: 89
    We're getting closer to resolving his issues....

    After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

    He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

    I think the next step is to manage the seizures before they start to address attention issues.

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