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RE: [ahc] have some questions...

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  • Kelly A. Andrasco
    This is very helpful...sharing the stories of what sets our children off! Kiley (10) woke up yesterday after 6:30am and had a fit because I wanted to wake up
    Message 1 of 34 , Jan 14, 2012
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      This is very helpful...sharing the stories of what sets our children off!
      Kiley (10) woke up yesterday after 6:30am and had a fit because "I wanted to
      wake up BEFORE 6:30!" I said, "well, set your alarm"...totally led to an on
      the floor tantrum!

      -----Original Message-----
      From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
      MaryKay Riley
      Sent: Saturday, January 14, 2012 10:51 AM
      To: afha@yahoogroups.com
      Subject: Re: [ahc] have some questions...

      Ok so here is another one. Nick and I are heading to downtown Minneapolis
      tonight for a night away from home and a function I wanted to attend,
      couldn't find anyone to stay with Nick so we gets to come along. I am
      packing and went into Nick's bedroom to get something else, saw his favorite
      swimming trunks, grabbed them and put them in the suitcase. He saw them and
      has been going on for a half hour about "why didn't I let him put his flag
      swimming trunks in the suitcase." Oh yeah -- life is interesting!!!!

      Nick too understands enough about AHC to ask questions. Sometime ago
      (probably when I was heading to NC for the meeting last summer) I mentioned
      to him that doctors were doing research on AHC. NOT KIDDING . . .
      everyday flippin' day when I pick him up and one of the first things he asks
      in the am is when will the doctors be done with the research. He wants me
      to call them everyday to find out!!! The stories I have told to satisfy him
      are unbelievable!!!

      Mary Kay




      On Sat, Jan 14, 2012 at 10:11 AM, Becky S. <merido@...> wrote:

      > **
      >
      >
      >
      >
      > Ha Ha, I am laughing and crying at the same time...every door and
      > doorknob in my house is broken.
      >
      > Mary Kay - walking is my "get-a-way" from Jake. I plug my ear buds in
      > and walk even in the freezing cold. It often gives both him and me
      > the chance to cool down. Usually by the time I get back, I am better
      > able to handle the issue, and he has usually forgotten it.
      >
      > Becky
      >
      > ----- Original Message -----
      >
      > From: "MaryKay Riley" <marykayriley@...>
      > To: afha@yahoogroups.com
      > Sent: Saturday, January 14, 2012 10:51:36 AM
      > Subject: Re: [ahc] have some questions...
      >
      > Michelle, everything you said hits the mark. It is an all consuming
      > parenting experience that we have been given. I too get
      > angry/frustrated at many things associated with AHC. My son Nick is
      almost 22 (Feb 1).
      > Thankfully we live in Minnesota where there are programs and funding
      > for help the disbled. But that only takes part of one of the aspects of
      this.
      >
      > Last night when we got home Nick found an almost bottle of bubble bath
      > he had put in the recyclables. I took it out since it wasn't quite
      > empty and was going to rinse it out before taking it to the recyle
      > area of the condo building. Well he flipped out!!!! Why did I take
      > it out and he proceeded to go into his bathroom and proceeded to
      > almost break the door. I knew that I couldn't stop what was going on
      > so I took the dog and went outside for a short walk (this is Minnesota
      > it was about 10 degrees out). I stayed outside at least 30 minutes
      > because I knew it could take that long before Nick settled down. This
      > is only one example of something so minor can set him off. Those of
      > us dealing with AHC understand this. Other parents who have children
      > with other disabilities also deal with issues like this.
      > However, for the majority of the general population it is "bad parenting."
      >
      > We need this forum to be able to support one another and know that we
      > are not alone, it is not our parenting skills that causes the behavior
      > but rather our SUPERIOR parenting skills that can deal with the
      > behavior and make sure our children have the best life possible.
      >
      > Mary Kay
      >
      > On Fri, Jan 13, 2012 at 11:43 PM, michelle <teapots44@...> wrote:
      >
      > > **
      > >
      > >
      > > Hi! My daughter Nicole just turned 22 years old. I haven't posted
      > > for awhile but I read all the posts regularly.I'm glad I'm not the
      > > only one feeling like I'm losing my mind.It is harder in alot of
      > > ways than years ago. Nicole's an adult so it's not easy (nearly
      > > impossible) to pick her
      > up
      > > if she's having a really bad episode.There's been plenty of times
      > > she's spent an hour or so on the floor waiting for an episode to
      > > ease up
      > enough
      > > to get up the stairs and in bed. She really does try to help but her
      > body
      > > just won't cooperate. I would love to move to a house with only one
      > level
      > > but with this economy it's hard to sell.She also has a seizure
      > > disorder
      > and
      > > as you know that's a whole other matter. She can never be alone. I
      > > have
      > to
      > > hire caretakers to be with her at nite, I work nite shift, and also
      > > to be with her at this sheltered workshop she just started 2
      > days
      > > ago. I have to pay for her to go to the workshop because of course
      > there's
      > > no money in Illinois to help disabled people. Nicole's behavior has
      > really
      > > been a problem for a long time but especially lately. She's on a
      > > slew of meds but the OCD seems the hardest to control.After being
      > > asked the same question about 5 or 6 times I start to lose it. So
      > > many times I end up yelling and then I feel guilty about it later.
      > > The aggression is bad,
      > too.
      > > I have scars all over my hands and arms from her scratching me, I'm
      > > full
      > of
      > > black and blue marks and when people at work ask me about them I
      > > always
      > say
      > > my dog or the cats or I did it gardening. What am I supposed to say?
      > > My daughter attacks me and I have to protect myself? You're right in
      > > saying
      > no
      > > one understands what we or our kids go through. I have given up so
      > > many friends I had because I can't bear to hear about how great
      > > they're doing and what college they'll be going to or that they're
      > > getting
      > married.It's
      > > not that I'm not happy for them it's just that it makes me sad
      > > knowing Nicole won't have a chance to experience so many things.
      > > What am I
      > supposed
      > > to talk about?, that Nicole had a good day and didn't have an
      > > episode or
      > a
      > > seizure that day, or maybe that she only attacked me once that
      > > weekend instead of 3 or 4 times.She's smart enough to know she will
      > > never drive
      > or
      > > live by herself or hold a job like other kids her age. I don't even
      > > know what to answer anymore when she asks me if the episodes will go
      > > away or
      > if
      > > she'll stop having seizures.I get tired of crying and feeling sad.
      > > She
      > is
      > > so beautiful and is really kind when her crazy head isn't telling
      > > her to fight and get angry.I've been a single parent for more than
      > > 15 years and I'm so afraid of what will happen to her when I die or
      > > get too sick to
      > care
      > > for her. We all know the horror stories about how disabled people
      > > are abused. Thinking about it makes me absolutely terrified. Yet
      > > there are
      > days
      > > I want to run away as far as I can go. I want to be like people my
      > > age
      > who
      > > have children that are adults and they can plan outings with their
      > friends
      > > and go to lunch or shopping without having to worry who's going to
      > > watch their kids;make sure whoever is with her can handle a seizure
      > > so she doesn't fall and get a head injury or aspirate if she
      > > vomits.I know life isn't fair and there are people with worse
      > > problems than my daughter and me. I try to remember that when she's
      > > having a bad day but sometimes I scream at God and say I don't care
      > > about those people,I want to be
      > selfish
      > > and not feel guilty about it. This is the first time I've let myself
      > think
      > > about some of this stuff let alone write it down so thanks for
      > listening. I
      > > hope it gets better for all of us. Michelle
      > >
      > > --- In afha@yahoogroups.com, "Becky S." <merido@...> wrote:
      > > >
      > > > Karen,
      > > >
      > > >
      > > > Oh my goodness, the stress involved taking care of Jake is
      > overwhelming
      > > at times. You are right about the guilt. I feel guilty also because
      > > I am
      > a
      > > nurse. People expect me to always know the right thing to do. The
      > > OCD aspects are the most frustrating. It is so sad because I sense
      > > that Jake knows he shouldn't do it, he just can't stop, such as
      > > asking the same question over and over again. It causes a LOT of
      > > arguments in this
      > house,
      > > especially between my husband and myself, but I thank God there are
      > > 2 of
      > us
      > > because I don't know how a single parent could do this without
      > significant
      > > help.
      > > > Jake was on Phenobarbital from the age of 14 months until around
      > > > 5-6
      > > years old. I believe it contributed significantly to his
      > > moderate-severe developmental delays. He really never talked until
      > > we stopped it. The
      > sad
      > > part is that he never really needed it because he wasn't having
      > seizures,
      > > it was AHC.
      > > > Since he was correctly diagnosed at 6 years old, we don't take him
      > > > to
      > > the hospital anymore and for a few years, I even stopped taking him
      > > to
      > the
      > > neurologist because all they could offer was "here try this or try that"
      > > and nothing worked. We are fortunate that he is very healthy and no
      > > seizures.
      > > > Dennis you are so right about others having no idea what it is
      > > > like
      > > taking care of these kids. It makes it so hard to attend events or
      > > even just go to the mall. They look at Jake and he looks "normal"
      > > then he
      > will
      > > get dystonia or freak out on me and I think to myself, is this
      > > really
      > worth
      > > it?
      > > >
      > > >
      > > > Yes, we all deserve the chance to vent every now and then, isn't
      > > > that
      > > part of the purpose of this board? If anyone would understand, I
      > > hope it would be the people reading this now.
      > > >
      > > >
      > > > Take care,
      > > > Becky
      > > > ----- Original Message -----
      > > > From: "Ms Karen Kluting" <kluting1@...>
      > > > To: afha@yahoogroups.com
      > > > Sent: Thursday, January 12, 2012 4:35:45 PM
      > > > Subject: Re: [ahc] have some questions...
      > > >
      > > > Dennis,
      > > >
      > > > I totally agree and hate Phenobarb with a passion however, I hate
      > > > the
      > > seizures worse and everything that comes with them. I go crazy
      > > trying to decide if what we are doing is helping or making things
      > > worse for
      > Trevor.
      > > With each seizure he we have lost a part of our child and of course
      > > that hurts me deeply thinking it's something I or we did wrong not
      > > knowing
      > any
      > > better. The guinea pig part I feel as a parent of child of AHC is so
      > > complex, traumatic, sad, etc. It has threatened to destroy my
      > > marriage
      > just
      > > in the fact that Trevor is such an intensive child with things
      > > really
      > only
      > > getting worse as the years progress not better. I was always told
      > > things get better as they get older however, we don't find that
      > > true, the emotional outbursts, stress, anger, that has developed
      > > these past few
      > years
      > > is almost more then I can take and even though I make phone calls
      > knowone
      > > has any suggestions that seem to help. Yes, I have called the big
      > > guns
      > > > at AHC but it takes weeks for me to get any answers and it's all
      > knowone
      > > knows for sure even from them. Sorry, I guess I needed to vent a
      > > bit, things are at a all time low here with the emotional stuff and
      > > Trevor so
      > I
      > > am mentally exhausted!! Anyway, hopefully some day for some parents
      > > out there some answers are found and some of these kids and parents
      > > get the much needed help they deserve!!
      > > >
      > > > Karen and Trevor
      > > >
      > > >
      > > > ________________________________
      > > > From: Dennis Kiernan <JIMMYAHC@...>
      > > > To: afha@yahoogroups.com
      > > > Sent: Thursday, January 12, 2012 4:06 AM
      > > > Subject: Re: [ahc] have some questions...
      > > >
      > > >
      > > >
      > > >
      > > > I certainly agree that meds are a mixed blessing and that
      > > > reactions
      > vary
      > > greatly. For example, chloral hydrate was used early on to get him
      > > to
      > sleep
      > > upon onset of episodes. After the first couple of times when he did
      > > fall asleep, it had the opposite effect. He would get like a happy
      > > drunk with
      > a
      > > lampshade on his head and get very active (unfortunately it also
      > > didn't help with the episode).
      > > >
      > > > I like valium - it's a simple, tried and true med. It helps him
      > > > sleep
      > if
      > > a bad episode has begun, it stops severe dystonia, and allows him to
      > > eat during times when 5 minutes before he couldn't swallow and is
      > > slurring badly (just now at breakfast. As to bilateral use, I
      > > brought it up at
      > last
      > > summer's AHC conference. I don't know how deep the suppression is.
      > > Andermann is the one who initially told me and he is one of the few
      > world
      > > experts in AHC. I'm surprised nobody else has brought up this issue.
      > > >
      > > > By the way, I am so sorry forTrevor (and you). Complete
      > > > respiratory
      > > arrest would be terrifying. Jimmy's breathing just gets very shallow
      > > but never stops. My fear with post-seizure time is him choking on his
      vomit.
      > He
      > > has vomited once while sound asleep following a grand mal and often
      > > has such a quantity of phlegm in his throat that it sounds like it
      > > will
      > choke
      > > him.
      > > >
      > > > I wish they could come up with something better for him than
      > > phenobarbitol. My opinion of that won't change (until that became
      > > the
      > only
      > > thing that works; never say never, right?).
      > > >
      > > > Best of everything,
      > > > Dennis
      > > >
      > > > -----Original Message-----
      > > > From: Ms Karen Kluting <kluting1@...>
      > > > To: afha <afha@yahoogroups.com>
      > > > Sent: Wed, Jan 11, 2012 11:32 pm
      > > > Subject: Re: [ahc] have some questions...
      > > >
      > > > Dennis, the reason we went to propofol after Trevor has a seizure
      > > > is
      > > exactly what you are talking about he was snowed out for days and it
      > didn't
      > > break the seizure, once they started using propofol they would keep
      > > him asleep for the night then wake him up and he was ready to go. I
      > > couldn't handle him being so snowed out on the rest of the meds.
      > > Trevor does take phenobarb normally but only because during the
      > > weaning of it he
      > developed
      > > seizures.
      > > >
      > > > I have never heard of not using the valium for bilateral hemi
      > > > episodes
      > > in fact this is when we use it the most with Trevor and it really
      > > does
      > work
      > > for us, we use oral 95% of the time with great success. I have been
      > > in
      > EMS
      > > for 25 years and have used valium lots over the years, we usually
      > > only
      > see
      > > resp. depression at higher doses of valium. I just wanted to clarify
      > that
      > > yes it can cause resp. depression but these kids react differently
      > > to so many meds you just never know how each one will do. Also, that
      > > we see COMPLETE respiratory arrest in Trevor during any grand mal
      > > seizure this
      > is
      > > and has been documented in every seizure he has had it didn't matter
      > > if valium was given or not. Quite the challenging puzzle these kids
      > > are for sure!!
      > > >
      > > > Karen and Trevor
      > > >
      > > >
      > > > ________________________________
      > > > From: Dennis Kiernan <JIMMYAHC@...>
      > > > To: afha@yahoogroups.com
      > > > Sent: Wednesday, January 11, 2012 4:06 PM
      > > > Subject: Re: [ahc] have some questions...
      > > >
      > > > Hi. Yeah, I just want to clarify one thing. The business of valium
      > > suppressing breathing was told to me by Dr Andermann up in McGill.
      > > He is
      > a
      > > world expert and I called him for advice on a bilateral hemiplegic
      > episode.
      > > It ended up lasting 23 days straight. He was maybe 5 yrs old. It was
      > about
      > > a week in and I was getting concerned and I wanted to see if valium
      > might
      > > help that late in the game. All of those things (valium, chloral
      > hydrate)
      > > generally work best if the kid gets it soon and goes to sleep.
      > > >
      > > > When he asked if it was both sides, that's when he said it's not a
      > great
      > > idea due to both sides (and therefore both lungs) being "weaker". He
      > also
      > > told me to check his pullup and see if it keeps getting wet since I
      > > was afraid to let him dehydrate. I was only giving him water and
      > > kool aid by dripping it in from time to time, especially the instant
      > > he woke up
      > (before
      > > it set in again). He was wet evry few hours so I never had to take
      > > him
      > to
      > > the hospital.
      > > >
      > > > The reason I hated the hospital was because they kept putting him
      > > > on
      > > phenobarbitol for hemiplegia (which they never heard of). Then I'd
      > > have
      > to
      > > slowly wean him off that garbage again. I have a cousin who took it
      > > afew years after an industrial accident caused seizures. He said he
      > > was terrified all the time, hallucinated that the bed was mounted on
      > > the
      > wall
      > > and he was goping to slide off and fall on the floor, etc. He said
      > > it
      > was
      > > like the worst kind of drunk/hangover feeling he knew.
      > > >
      > > > If a seizure wouldn't quit, I might reconsider but I personally
      > > > make
      > > sure I write he is allergic to phenobarbitol (true or not),
      > > otherwise
      > they
      > > could care less.
      > > >
      > > > Sincerely, Dennis
      > > >
      > > > -----Original Message-----
      > > > From: azar hemmaty <maphhemmaty@...>
      > > > To: afha <afha@yahoogroups.com>
      > > > Sent: Wed, Jan 11, 2012 7:04 pm
      > > > Subject: Re: [ahc] have some questions...
      > > >
      > > > Hi Vicky and Tony,
      > > > Our daughter Hannah (4 years old), also has seizure with ahc episodes.
      > > We alway use Diastat at home right after the seizure starts and
      > > unfortunately almost always, it does not stop the seizure and we end
      > > up going to hospital. They give her more seizure meds through IV,
      > > and the combination of Diastat and Phenobarbitol (given in hospital)
      > > in last two hospital visits, slowed down her breathing and heart bit
      > > and made them intubate her. Did doctors tell you that it was apnea?
      > > Because it is
      > usually
      > > the effect of combination of seizure meds, that make them not breath
      > > properly and get intubated and sedated. After 15 hospital trips in
      > > last
      > 3
      > > years, I kind of agree with Denis and wondering if what they do
      > > benefit
      > our
      > > kids to stop the seizure or no matter what we do, they would have
      > > the seizure with AHC episodes and just stay home?!
      > > > Healthwise I also agree with denis, she rarely gets sick. Never
      > > > had
      > > pneumonia or strep throat or flu, just simple cold with low fever.
      > > > Best wishes,
      > > > Azar,
      > > >
      > > > [Non-text portions of this message have been removed]
      > > >
      > > > [Non-text portions of this message have been removed]
      > > >
      > > > [Non-text portions of this message have been removed]
      > > >
      > > > [Non-text portions of this message have been removed]
      > > >
      > > >
      > > >
      > > >
      > > > [Non-text portions of this message have been removed]
      > > >
      > > >
      > > >
      > > > ------------------------------------
      > > >
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      > > > afha-owner@yahoogroups.com
      > > >
      > > > Link to the URL :
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      > > > AHC Website :
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      > > >
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      > >
      >
      > [Non-text portions of this message have been removed]
      >
      > ------------------------------------
      >
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    • Jeff Wuchich
      Dear Friends,  I call you all friends for the very reason many of you have put here- we need each other & understand each other.  I am so grateful that all
      Message 34 of 34 , Jan 25, 2012
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        Dear Friends,

         I call you all friends for the very reason many of you have put here- we need each other & understand each other.  I am so grateful that all of you are feeling comfortable enough to open up here.  As has been said, we need this forum as a source of emotional support.  We must care for each other so that we can be there for our kids & adults w/AHC.

        I can so often forget that fact myself.   Thank you all for reminding me. 

        As far as meds, Matthew, unlike some of the others, seems to really NEED phenobarbital.  The times we have tried (under dr supervision of course) to wean him off of it have been disastrous (we nearly lost him in Feb 2009).  He has documented epilepsy (from that hospital stay) but fully controlled to the best of our knowledge with pheno. 

        We are already seeing the behavioral issues (aggression, OCD, etc)  but like many of you Renee & I are very reluctant to pursue a medication solution.  That is why we are looking into a variety of behavioral therapy approaches.     I hope that at a Foundation level we'll raise enough funds that we can systematically study some of these approaches and perhaps find some things that work across the board.

        Meanwhile we press on.

        Regards,

        Jeff

        --- On Sat, 1/14/12, Becky S. <merido@...> wrote:

        From: Becky S. <merido@...>
        Subject: Re: [ahc] have some questions...
        To: afha@yahoogroups.com
        Date: Saturday, January 14, 2012, 1:44 PM
















         









        OMG, I think calenders should be banned-they are the bane of my life(and Jake's existence). If he sees I have something written on the calender he freaks out. Any step outside of everyday life is cause for 2 million questions. I have always been an honest person but I find myself telling lies to my son now to prevent these meltdowns - things such as holidays, days off school, doctor appointments...



        I haven't pressed behavior drugs at this point because I'm afraid that 1-it will actually make things worse, and 2-it will affect his AHC in a negative fashion, 3-it will produce serious side effects. I keep hoping that as he gets older, things will start to improve. He is graduating from high school this year and this is causing so much turmoil.



        Becky



        ----- Original Message -----

        From: JIMMYAHC@...

        To: afha@yahoogroups.com

        Sent: Saturday, January 14, 2012 12:33:48 PM

        Subject: Re: [ahc] have some questions...



        Hi,

        It's like the dam burst. I'm glad to hear all this deeply buried stuff

        coming out. Now we're really hearing stuff and venting in a healthy way. One

        conference (Chicago) messed me up because it seemed no one wanted to say

        certain things are happening.



        I've been trying the Abilify for almost 2 months and I'm seeing increased

        OCD and fragile emotional stuff (like hurt feelings, crying from a kid that

        wouldn't cry if you beat him), a sort of fear to go outside or into a

        store, etc.



        The lamictal was recommended a few years ago and I asked the chat room

        about that skin rash thing (Stevens-Johnson Syndrome). I chickened out on that

        and stayed with the topamax and it's apparent side effects of confusion,

        etc because it was keeping him seizure free.



        I've got two questions:



        1. How long has Kiley been on abilify and what changes did it make? The

        neurologist told me it's not for OCD stuff, did yours say anything about that?

        It was for outbursts.



        2. Lamictal is a seizure med, right? I guess your daughter must have

        seizures too? What, if anything, did the doctor tell you it was going to do for

        behavior related stuff? Also, what seizure med had she been on prior to

        that?



        I'm dying to know how these things affect the kids. I know everyone says

        each kid is unique, etc but the reasons for doctors prescribing them is what

        I really want to know - then I can ask better questions. Like I thought

        abilify would do something for OCD but when I said he was getting more OCD,

        that's when he said it's not designed for that.



        Just one more thing to everyone - does anyone think almost all the

        behaviors can be traced back to OCD? I'm starting to think it is a huge component

        since a lot of things get started if he wants to read the calendar for the

        thousandth time and I'm trying to get him out the door. Or if I move the

        remote out of position and won't let him keep placing it on the exact edge.

        This seems to cause great anger.



        Sincerely,

        Dennis

        p.s. Well thank you, I've slightly exceeded my 2 questions.



        In a message dated 1/14/2012 11:18:10 A.M. Eastern Standard Time,

        kelly_andrasco@... writes:



        Michelle,



        You are not alone! I feel EXACTLY the same way and my daughter is only 10

        years old. We had a really rough couple of months with aggression,

        screaming, etc. We took Kiley off her behavior meds and started over. She

        is now on Abilify and Lamictal. We are not at the proper dose yet for

        Lamictal, but we see improvement already. There is a dangerous rash that

        can occur, so it has to be increased VERY slowly. Does Nicole take anything

        for her mood swings?



        Kelly



        From: _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        [mailto:_afha@yahoogroups.com_ (mailto:afha@yahoogroups.com) ] On Behalf Of

        michelle

        Sent: Friday, January 13, 2012 11:44 PM

        To: _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        Subject: Re: [ahc] have some questions...



        Hi! My daughter Nicole just turned 22 years old. I haven't posted for

        awhile

        but I read all the posts regularly.I'm glad I'm not the only one feeling

        like I'm losing my mind.It is harder in alot of ways than years ago.

        Nicole's an adult so it's not easy (nearly impossible) to pick her up if

        she's having a really bad episode.There's been plenty of times she's spent

        an hour or so on the floor waiting for an episode to ease up enough to get

        up the stairs and in bed. She really does try to help but her body just

        won't cooperate. I would love to move to a house with only one level but

        with this economy it's hard to sell.She also has a seizure disorder and as

        you know that's a whole other matter. She can never be alone. I have to

        hire

        caretakers to be with her at nite, I work nite shift,

        and also to be with her at this sheltered workshop she just started 2 days

        ago. I have to pay for her to go to the workshop because of course there's

        no money in Illinois to help disabled people. Nicole's behavior has really

        been a problem for a long time but especially lately. She's on a slew of

        meds but the OCD seems the hardest to control.After being asked the same

        question about 5 or 6 times I start to lose it. So many times I end up

        yelling and then I feel guilty about it later. The aggression is bad, too.

        I

        have scars all over my hands and arms from her scratching me, I'm full of

        black and blue marks and when people at work ask me about them I always say

        my dog or the cats or I did it gardening. What am I supposed to say? My

        daughter attacks me and I have to protect myself? You're right in saying no

        one understands what we or our kids go through. I have given up so many

        friends I had because I can't bear to hear about how great they're doing

        and

        what college they'll be going to or that they're getting married.It's not

        that I'm not happy for them it's just that it makes me sad knowing Nicole

        won't have a chance to experience so many things. What am I supposed to

        talk

        about?, that Nicole had a good day and didn't have an episode or a seizure

        that day, or maybe that she only attacked me once that weekend instead of 3

        or 4 times.She's smart enough to know she will never drive or live by

        herself or hold a job like other kids her age. I don't even know what to

        answer anymore when she asks me if the episodes will go away or if she'll

        stop having seizures.I get tired of crying and feeling sad. She is so

        beautiful and is really kind when her crazy head isn't telling her to fight

        and get angry.I've been a single parent for more than 15 years and I'm so

        afraid of what will happen to her when I die or get too sick to care for

        her. We all know the horror stories about how disabled people are abused.

        Thinking about it makes me absolutely terrified. Yet there are days I want

        to run away as far as I can go. I want! to be like people my age who have

        children that are adults and they can plan outings with their friends and

        go

        to lunch or shopping without having to worry who's going to watch their

        kids;make sure whoever is with her can handle a seizure so she doesn't fall

        and get a head injury or aspirate if she vomits.I know life isn't fair and

        there are people with worse problems than my daughter and me. I try to

        remember that when she's having a bad day but sometimes I scream at God and

        say I don't care about those people,I want to be selfish and not feel

        guilty

        about it. This is the first time I've let myself think about some of this

        stuff let alone write it down so thanks for listening. I hope it gets

        better

        for all of us. Michelle

        --- In _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com> , "Becky S."

        <merido@...> wrote:

        >

        > Karen,

        >

        >

        > Oh my goodness, the stress involved taking care of Jake is overwhelming

        at

        times. You are right about the guilt. I feel guilty also because I am a

        nurse. People expect me to always know the right thing to do. The OCD

        aspects are the most frustrating. It is so sad because I sense that Jake

        knows he shouldn't do it, he just can't stop, such as asking the same

        question over and over again. It causes a LOT of arguments in this house,

        especially between my husband and myself, but I thank God there are 2 of us

        because I don't know how a single parent could do this without significant

        help.

        > Jake was on Phenobarbital from the age of 14 months until around 5-6

        years

        old. I believe it contributed significantly to his moderate-severe

        developmental delays. He really never talked until we stopped it. The sad

        part is that he never really needed it because he wasn't having seizures,

        it

        was AHC.

        > Since he was correctly diagnosed at 6 years old, we don't take him to the

        hospital anymore and for a few years, I even stopped taking him to the

        neurologist because all they could offer was "here try this or try that"

        and

        nothing worked. We are fortunate that he is very healthy and no seizures.

        > Dennis you are so right about others having no idea what it is like

        taking

        care of these kids. It makes it so hard to attend events or even just go to

        the mall. They look at Jake and he looks "normal" then he will get dystonia

        or freak out on me and I think to myself, is this really worth it?

        >

        >

        > Yes, we all deserve the chance to vent every now and then, isn't that

        part

        of the purpose of this board? If anyone would understand, I hope it would

        be

        the people reading this now.

        >

        >

        > Take care,

        > Becky

        > ----- Original Message -----

        > From: "Ms Karen Kluting" <kluting1@...>

        > To: _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com>

        > Sent: Thursday, January 12, 2012 4:35:45 PM

        > Subject: Re: [ahc] have some questions...

        >

        > Dennis,

        >

        > I totally agree and hate Phenobarb with a passion however, I hate the

        seizures worse and everything that comes with them. I go crazy trying to

        decide if what we are doing is helping or making things worse for Trevor.

        With each seizure he we have lost a part of our child and of course that

        hurts me deeply thinking it's something I or we did wrong not knowing any

        better. The guinea pig part I feel as a parent of child of AHC is so

        complex, traumatic, sad, etc. It has threatened to destroy my marriage just

        in the fact that Trevor is such an intensive child with things really only

        getting worse as the years progress not better. I was always told things

        get

        better as they get older however, we don't find that true, the emotional

        outbursts, stress, anger, that has developed these past few years is almost

        more then I can take and even though I make phone calls knowone has any

        suggestions that seem to help. Yes, I have called the big guns

        > at AHC but it takes weeks for me to get any answers and it's all knowone

        knows for sure even from them. Sorry, I guess I needed to vent a bit,

        things

        are at a all time low here with the emotional stuff and Trevor so I am

        mentally exhausted!! Anyway, hopefully some day for some parents out there

        some answers are found and some of these kids and parents get the much

        needed help they deserve!!

        >

        > Karen and Trevor

        >

        >

        > ________________________________

        > From: Dennis Kiernan <JIMMYAHC@...>

        > To: _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com>

        > Sent: Thursday, January 12, 2012 4:06 AM

        > Subject: Re: [ahc] have some questions...

        >

        >

        >

        >

        > I certainly agree that meds are a mixed blessing and that reactions vary

        greatly. For example, chloral hydrate was used early on to get him to sleep

        upon onset of episodes. After the first couple of times when he did fall

        asleep, it had the opposite effect. He would get like a happy drunk with a

        lampshade on his head and get very active (unfortunately it also didn't

        help

        with the episode).

        >

        > I like valium - it's a simple, tried and true med. It helps him sleep if

        a

        bad episode has begun, it stops severe dystonia, and allows him to eat

        during times when 5 minutes before he couldn't swallow and is slurring

        badly

        (just now at breakfast. As to bilateral use, I brought it up at last

        summer's AHC conference. I don't know how deep the suppression is.

        Andermann

        is the one who initially told me and he is one of the few world experts in

        AHC. I'm surprised nobody else has brought up this issue.

        >

        > By the way, I am so sorry forTrevor (and you). Complete respiratory

        arrest

        would be terrifying. Jimmy's breathing just gets very shallow but never

        stops. My fear with post-seizure time is him choking on his vomit. He has

        vomited once while sound asleep following a grand mal and often has such a

        quantity of phlegm in his throat that it sounds like it will choke him.

        >

        > I wish they could come up with something better for him than

        phenobarbitol. My opinion of that won't change (until that became the only

        thing that works; never say never, right?).

        >

        > Best of everything,

        > Dennis

        >

        > -----Original Message-----

        > From: Ms Karen Kluting <kluting1@...>

        > To: afha <_afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com> >

        > Sent: Wed, Jan 11, 2012 11:32 pm

        > Subject: Re: [ahc] have some questions...

        >

        > Dennis, the reason we went to propofol after Trevor has a seizure is

        exactly what you are talking about he was snowed out for days and it didn't

        break the seizure, once they started using propofol they would keep him

        asleep for the night then wake him up and he was ready to go. I couldn't

        handle him being so snowed out on the rest of the meds. Trevor does take

        phenobarb normally but only because during the weaning of it he developed

        seizures.

        >

        > I have never heard of not using the valium for bilateral hemi episodes in

        fact this is when we use it the most with Trevor and it really does work

        for

        us, we use oral 95% of the time with great success. I have been in EMS for

        25 years and have used valium lots over the years, we usually only see

        resp.

        depression at higher doses of valium. I just wanted to clarify that yes it

        can cause resp. depression but these kids react differently to so many meds

        you just never know how each one will do. Also, that we see COMPLETE

        respiratory arrest in Trevor during any grand mal seizure this is and has

        been documented in every seizure he has had it didn't matter if valium was

        given or not. Quite the challenging puzzle these kids are for sure!!

        >

        > Karen and Trevor

        >

        >

        > ________________________________

        > From: Dennis Kiernan <JIMMYAHC@...>

        > To: _afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com>

        > Sent: Wednesday, January 11, 2012 4:06 PM

        > Subject: Re: [ahc] have some questions...

        >

        > Hi. Yeah, I just want to clarify one thing. The business of valium

        suppressing breathing was told to me by Dr Andermann up in McGill. He is a

        world expert and I called him for advice on a bilateral hemiplegic episode.

        It ended up lasting 23 days straight. He was maybe 5 yrs old. It was about

        a

        week in and I was getting concerned and I wanted to see if valium might

        help

        that late in the game. All of those things (valium, chloral hydrate)

        generally work best if the kid gets it soon and goes to sleep.

        >

        > When he asked if it was both sides, that's when he said it's not a great

        idea due to both sides (and therefore both lungs) being "weaker". He also

        told me to check his pullup and see if it keeps getting wet since I was

        afraid to let him dehydrate. I was only giving him water and kool aid by

        dripping it in from time to time, especially the instant he woke up (before

        it set in again). He was wet evry few hours so I never had to take him to

        the hospital.

        >

        > The reason I hated the hospital was because they kept putting him on

        phenobarbitol for hemiplegia (which they never heard of). Then I'd have to

        slowly wean him off that garbage again. I have a cousin who took it afew

        years after an industrial accident caused seizures. He said he was

        terrified

        all the time, hallucinated that the bed was mounted on the wall and he was

        goping to slide off and fall on the floor, etc. He said it was like the

        worst kind of drunk/hangover feeling he knew.

        >

        > If a seizure wouldn't quit, I might reconsider but I personally make sure

        I write he is allergic to phenobarbitol (true or not), otherwise they could

        care less.

        >

        > Sincerely, Dennis

        >

        > -----Original Message-----

        > From: azar hemmaty <maphhemmaty@...>

        > To: afha <_afha@yahoogroups.com_ (mailto:afha@yahoogroups.com)

        <mailto:afha%40yahoogroups.com> >

        > Sent: Wed, Jan 11, 2012 7:04 pm

        > Subject: Re: [ahc] have some questions...

        >

        > Hi Vicky and Tony,

        > Our daughter Hannah (4 years old), also has seizure with ahc episodes. We

        alway use Diastat at home right after the seizure starts and unfortunately

        almost always, it does not stop the seizure and we end up going to

        hospital.

        They give her more seizure meds through IV, and the combination of Diastat

        and Phenobarbitol (given in hospital) in last two hospital visits, slowed

        down her breathing and heart bit and made them intubate her. Did doctors

        tell you that it was apnea? Because it is usually the effect of combination

        of seizure meds, that make them not breath properly and get intubated and

        sedated. After 15 hospital trips in last 3 years, I kind of agree with

        Denis

        and wondering if what they do benefit our kids to stop the seizure or no

        matter what we do, they would have the seizure with AHC episodes and just

        stay home?!

        > Healthwise I also agree with denis, she rarely gets sick. Never had

        pneumonia or strep throat or flu, just simple cold with low fever.

        > Best wishes,

        > Azar,

        >

        > [Non-text portions of this message have been removed]

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        >

        >

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