Hi Ragga,

My name is Tom and my daughter Katelyn (12 months) sounds very similar to your
daughter (in terms of age at the time of drug treatment).  I'm not sure we are
seeing the same benefit from the flunazarine though.

Katelyn is currently on 3 mg of flunazarine - can you remember what dose Sunna
was put on when she was 14 months and how long it took before you saw a benefit.

Simarily we had her on Topomax (since August) (30mg) - we didnt see much benefit
in terms of effecting frequency and duration of episodes so we began weaning her
off it over the last couple of weeks.  In retrospect though she may have been
recovering from episodes more quickly with it.  I dont know if we gave it enough
time.

Up until this month Katelyn would have episodes about 10 days in a month and
could go a week or ten days without an episode.  She would usually have one bad
one every month.  Although this month Katelyn's episodes seem to be getting more
frequent (she's had right sided weakness for up to a week now - i'm not sure if
weaning her off the Topomax is feeding into this).

Was Sunna having more frequent episodes when she was younger - my fear is that
Katelyn's episodes will continue to get more frequent and of longer duration.

Just to clarify when parents talk about "episodes" are they talking about just
weakness as well as the full blown head turned eye jumping episodes when your
child doesnt appear to be with you?

I want to know because the idea of getting a month or two off without either
would be amazing.

Any advice or thoughts you or other parents might have would be most welcome.

thanks

Tom
Father to Katelyn (12 months)
Dublin
Ireland


--- In afha@yahoogroups.com, Siggi Jóhannesson <sunnavaldis@...> wrote:
>
> Hi Katrina
>
> In my daughters case I saw a huge difference. I strongly believe that
Flunarizine is helping Sunna (3 1/2 years).
>
> Sunna was on two drugs (Keppra and Phenemal) that did not work at all from
she was 5 months to 13 months. She was wrongly diagnosed with epilepsy at that
time. When Sunna got her final diagnosis, AHC, she started on Flunarizine at age
14 months. We started to wean her off Keppra and Phenemal right after the
diagnosis. Later that year when Sunna was 21 months, after 2 to 3 episodes a
months we put in Topamax.
> Topamax has its downs but overall it has helped Sunna. But what I see in her
that I can relate to Flunarizine is that when she has her episodes, Sunna gains
her strenght back more quickly. She has her episodes less frequently. For
instance there has not been an episode since October 21st.  She can have
episode once a month, get 2 months off and then an episode. Last year we had 5
months of no episodes (thank God)
>
> To cut it short, since Sunna started taking Flunarizine and the mixture of
Topamax, she gets her strenght back after a night off sleep, she is not
paralysed for days like she used to be. It could take up to 14 days for her to
get her hands and feet working again, overall getting her bodys strenght back.
> I will not get into regaining her mental strenght after episodes, that is a
whole another long story.
>
> This is my point of view on this, but the families here are an ocean of good
information, the best really, so you will get good feedback.
>
> Take care
> Ragga Johannesson
> Mom to Sunna
> Reykjavik
> Iceland
>
>
>
>
> ________________________________
> From: Katrina <katrinaplum@...>
> To: afha@yahoogroups.com
> Sent: Tue, November 17, 2009 1:06:10 AM
> Subject: [ahc] how does flunarizine help?
>
>  
> Hi there,
>
> We have obtained flunarizine for our daughter Delaney but are holding off on
starting the medication until we meet with Dr. Andermann. I was wondering from
your personal experiences how flunarizine has helped- does it help with weakness
episodes and/or attacks? Any feedback is really appreciated. Thanks, Katrina
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

We have been doing 3 mg per night and were told we could go up to 5 mg if
needed to.  We were told this by our neurologist, even though they did not
think it would help, but he was on epilepsy medicines at the time so wanted
to be sure it was okay with Keppra and Trileptal.  Nico, my son, was just
about 25 pounds last year.  I don' t know about the mixing with other AHC
meds, but this is the dose he was on.

I have even taken it myself at the same dose and it works quite well.  I
just wanted to see how it felt.  I woke up fine, not too groggy or anything
like that.

Hope you find what works.  I only regret not trying it sooner...3 years is a
long time to go without sleep.

: )

Cassie

On Sun, Nov 22, 2009 at 12:21 PM, Katrina Sliwka <katrinaplum@...>wrote:

>
>
> Thanks, Cassie. How much melatonin do you give him? So glad it is so
> helpful for your son!
>
>
> On Sun, Nov 22, 2009 at 2:17 PM, Cassie Chaparro
<cjchaparro@...<cjchaparro%40gmail.com>>
> wrote:
> > Hi,
> >
> > My son is 4 and was just ruled out for AHC.  However, his spells and
> > symptoms are/were quite similar.  He has baseline right-sided weakness
> that
> > gets worse and goes to full hemiplegia.  We have used melatnonin for a
> whole
> > year now and it made a huge difference.  My son doesn't wind down in
> order
> > to fall asleep, but does stay asleep.  There is a subligual brand
> somewhere
> > that you can just put under their tongues for those who have trouble
> staying
> > asleep.  We just crush up a tablet and give it about 1/2 hour before his
> > bedtime, and like clockwork he now comes to us and says he is tired and
> > wants to go to bed.
> >
> > Before melatonin he had never slept through the night ever and was having
> > daily to weekly spells of hemiplegia.  Now that he sleeps he has a lot
> more
> > tollerance for things that stress him into attacks like riding in the
> car,
> > water, and plain old being tired.  He stills fatigues, but I think he has
> a
> > better quality of life with the melatonin than without.
> >
> > I don't know how it will help in a true case of AHC, and up until a 2
> weeks
> > ago I was coming here looking for advice because what the AHC parents are
> > doing is working for my son too.  I hope it works both ways.  I'd say the
> > melatonin is on the top of my list for helpful things we have stumbled
> > across.
> >
> > Good luck!
> >
> > Cassie
> >
> > On Sun, Nov 22, 2009 at 5:47 AM, Katrina
<katrinaplum@...<katrinaplum%40gmail.com>>
> wrote:
> >
> >>
> >>
> >> I know that someone recently posted something about their child taking
> >> melatonin but I can't seem to find the post. I am wondering families'
> >> experience in using melatonin as a sleep aid. Delaney is 13 months and
> she
> >> will generally fall asleep easily at night (not so much for naps) but
> then
> >> she struggles to stay asleep for more than 2-3 hours. Knowing how
> important
> >> sleep is for our children, I am wondering if melatonin can be helpful.
> >> Thanks for your time. Katrina
> >>
> >>
> >>
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> > ------------------------------------
>
> >
> > Send a mail to the AHC community :
> >  Send a mail :        afha@yahoogroups.com <afha%40yahoogroups.com>
> >  Subscribe   :       
afha-subscribe@yahoogroups.com<afha-subscribe%40yahoogroups.com>
> >  unsubscribe :       
afha-unsubscribe@yahoogroups.com<afha-unsubscribe%40yahoogroups.com>
> >  Owner of the list : 
afha-owner@yahoogroups.com<afha-owner%40yahoogroups.com>
> >
> > Link to the URL :
> >  http://groups.yahoo.com/group/afha
> > AHC Website :
> >  http://www.afha.orgYahoo! Groups Links
> >
> >
> >
> >
>
>
>


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

Thanks, Cassie. How much melatonin do you give him? So glad it is so
helpful for your son!

On Sun, Nov 22, 2009 at 2:17 PM, Cassie Chaparro <cjchaparro@...> wrote:
> Hi,
>
> My son is 4 and was just ruled out for AHC.  However, his spells and
> symptoms are/were quite similar.  He has baseline right-sided weakness that
> gets worse and goes to full hemiplegia.  We have used melatnonin for a whole
> year now and it made a huge difference.  My son doesn't wind down in order
> to fall asleep, but does stay asleep.  There is a subligual brand somewhere
> that you can just put under their tongues for those who have trouble staying
> asleep.  We just crush up a tablet and give it about 1/2 hour before his
> bedtime, and like clockwork he now comes to us and says he is tired and
> wants to go to bed.
>
> Before melatonin he had never slept through the night ever and was having
> daily to weekly spells of hemiplegia.  Now that he sleeps he has a lot more
> tollerance for things that stress him into attacks like riding in the car,
> water, and plain old being tired.  He stills fatigues, but I think he has a
> better quality of life with the melatonin than without.
>
> I don't know how it will help in a true case of AHC, and up until a 2 weeks
> ago I was coming here looking for advice because what the AHC parents are
> doing is working for my son too.  I hope it works both ways.  I'd say the
> melatonin is on the top of my list for helpful things we have stumbled
> across.
>
> Good luck!
>
> Cassie
>
> On Sun, Nov 22, 2009 at 5:47 AM, Katrina <katrinaplum@...> wrote:
>
>>
>>
>> I know that someone recently posted something about their child taking
>> melatonin but I can't seem to find the post. I am wondering families'
>> experience in using melatonin as a sleep aid. Delaney is 13 months and she
>> will generally fall asleep easily at night (not so much for naps) but then
>> she struggles to stay asleep for more than 2-3 hours. Knowing how important
>> sleep is for our children, I am wondering if melatonin can be helpful.
>> Thanks for your time. Katrina
>>
>>
>>
>
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Send a mail to the AHC community :
>  Send a mail :        afha@yahoogroups.com
>  Subscribe   :        afha-subscribe@yahoogroups.com
>  unsubscribe :        afha-unsubscribe@yahoogroups.com
>  Owner of the list :  afha-owner@yahoogroups.com
>
> Link to the URL :
>  http://groups.yahoo.com/group/afha
> AHC Website :
>  http://www.afha.orgYahoo! Groups Links
>
>
>
>

Wishing, Hunter, a quick recovery. Thanks for your information!

On Sun, Nov 22, 2009 at 9:24 AM, <harcompton@...> wrote:

>
>
> We use it occasionally for Hunter. I like it b/c it can be used as needed
> and it is non habit forming and it doesn't interact with any of Hunters
> meds. We did check with the Dr before we started using it. Hunter is in a
> moderately severe episode right now. He went 40 days without one and now its
> bad day 5 of episode and its bilateral today and yesterday. Should be over
> in 4 days
> Renee
> Sent from my Verizon Wireless BlackBerry
>
> -----Original Message-----
> From: "Katrina" <katrinaplum@... <katrinaplum%40gmail.com>>
> Date: Sun, 22 Nov 2009 12:47:35
> To: <afha@yahoogroups.com <afha%40yahoogroups.com>>
> Subject: [ahc] Melatonin
>
> I know that someone recently posted something about their child taking
> melatonin but I can't seem to find the post. I am wondering families'
> experience in using melatonin as a sleep aid. Delaney is 13 months and she
> will generally fall asleep easily at night (not so much for naps) but then
> she struggles to stay asleep for more than 2-3 hours. Knowing how important
> sleep is for our children, I am wondering if melatonin can be helpful.
> Thanks for your time. Katrina
>
>
>
> [Non-text portions of this message have been removed]
>
>
>


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

Hi,

My son is 4 and was just ruled out for AHC.  However, his spells and
symptoms are/were quite similar.  He has baseline right-sided weakness that
gets worse and goes to full hemiplegia.  We have used melatnonin for a whole
year now and it made a huge difference.  My son doesn't wind down in order
to fall asleep, but does stay asleep.  There is a subligual brand somewhere
that you can just put under their tongues for those who have trouble staying
asleep.  We just crush up a tablet and give it about 1/2 hour before his
bedtime, and like clockwork he now comes to us and says he is tired and
wants to go to bed.

Before melatonin he had never slept through the night ever and was having
daily to weekly spells of hemiplegia.  Now that he sleeps he has a lot more
tollerance for things that stress him into attacks like riding in the car,
water, and plain old being tired.  He stills fatigues, but I think he has a
better quality of life with the melatonin than without.

I don't know how it will help in a true case of AHC, and up until a 2 weeks
ago I was coming here looking for advice because what the AHC parents are
doing is working for my son too.  I hope it works both ways.  I'd say the
melatonin is on the top of my list for helpful things we have stumbled
across.

Good luck!

Cassie

On Sun, Nov 22, 2009 at 5:47 AM, Katrina <katrinaplum@...> wrote:

>
>
> I know that someone recently posted something about their child taking
> melatonin but I can't seem to find the post. I am wondering families'
> experience in using melatonin as a sleep aid. Delaney is 13 months and she
> will generally fall asleep easily at night (not so much for naps) but then
> she struggles to stay asleep for more than 2-3 hours. Knowing how important
> sleep is for our children, I am wondering if melatonin can be helpful.
> Thanks for your time. Katrina
>
>
>


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

Thank you for your offer to get the articles for me. If you find an article of
interest please attach it to an email and send it to me at
samson93105@.... Dave met w/his neurologist. He said that the movements
were actually called Tics as it involves jerking, twitching is more of a muscle
flutter. Dave had a 90 min. eeg that did not show any abnormal activity. The
tics often happen when Dave's right hand is hypotonic, evidence of an episode.
We believe that it may be related to the last batch of flunarizine that came
from Canada but was produced in India. We have ordered a new batch that will be
from New Zealand. Dave got a H1N1 shot last week and I have not noted any side
effects.
Thank you Vicky

--- In afha@yahoogroups.com, "Platt, Vicky" <vaplatt@...> wrote:
>
> I am the director of research for a financial consulting firm and have
> access to a lot of databases. I may be able to obtain those articles for
> you without incurring charges. If you wish, email me directly and I will
> see what I can do. My email address is vaplatt@...
>
>
>
> Vicky Platt
>
>
>
> ________________________________
>
> From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
> nancysamson@...
> Sent: Wednesday, November 18, 2009 6:26 PM
> To: afha@yahoogroups.com
> Subject: [ahc] Twitching
>
>
>
>
>
> My son, Dave Samson, aged 29 has recently been experiencing generalized
> muscle twitching. I googled AHC/Twitching and several med articles came
> up but they have to be purchased. Has anyone heard of a correlation
> between AHC and twitching. Dave has done very well on his medications
> the past 10 yrs, having few episodes, he is living in his own apt. and
> has a great job at the YMCA. We get his flunarizine from Canada but the
> last batch we rec'd was manufactured in India. Would appreciate any
> feedback.
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

My son, Dave, also had bowel control problems as a young child and still at age,
28, he occasionally has problems. I used to think he just didn't want to stop
what he was doing and go into the restroom but now I believe that it has to do
with lack of muscle control. There seemed to be a pattern of it happening when
he was in a store where the restrooms are often in the far back corner. The
problem should lessen for your son as he grows older.

--- In afha@yahoogroups.com, "yolandae10" <yolanda@...> wrote:
>
> Hi Everyone
>
> My son Theo is 11 years old now, and still have problems controlling his bowl
stools. Some weeks he does so well and other weeks not so good. In general he
has about 65% control. He is not on any diapers, but some times I think I must
put him back onto diapers. I want to know from the parent with older kids, do
this get better over time? Theo has improved over the years, but he is getting
older now and messing in his pants is more of a issue now. I also don't want to
go backwards with him. Any ideas or advise on this?
>
> Many thanks
>
> Yolanda
>

We use it occasionally for Hunter.  I like it b/c it can be used as needed and
it is non habit forming and it doesn't interact with any of Hunters meds. We did
check with the Dr before we started using it.   Hunter is in a moderately 
severe episode right now. He went 40 days without one and now its bad day 5 of
episode and its bilateral today and yesterday. Should be over in 4 days
Renee
Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: "Katrina" <katrinaplum@...>
Date: Sun, 22 Nov 2009 12:47:35
To: <afha@yahoogroups.com>
Subject: [ahc] Melatonin

I know that someone recently posted something about their child taking melatonin
but I can't seem to find the post. I am wondering families' experience in using
melatonin as a sleep aid. Delaney is 13 months and she will generally fall
asleep easily at night (not so much for naps) but then she struggles to stay
asleep for more than 2-3 hours. Knowing how important sleep is for our children,
I am wondering if melatonin can be helpful. Thanks for your time. Katrina




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

I know that someone recently posted something about their child taking melatonin
but I can't seem to find the post. I am wondering families' experience in using
melatonin as a sleep aid. Delaney is 13 months and she will generally fall
asleep easily at night (not so much for naps) but then she struggles to stay
asleep for more than 2-3 hours. Knowing how important sleep is for our children,
I am wondering if melatonin can be helpful. Thanks for your time. Katrina

Marcia,
I just wanted to make sure that you received your check for the AHC Bracelets. 
The check hasn't been cashed yet so I just want to make sure that it made it to
you.  You never know with the mail system sometimes.  Thanks for organizing the
fundraiser.  I was able to sell all of the 100 the I got from you. 

Chrystal Wagner (Hunter 4 years old)




________________________________
From: Marcia Perkins <marcia.perkins@...>
To: afha@yahoogroups.com
Sent: Tue, October 6, 2009 6:49:21 AM
Subject: RE: [ahc] Todd and Sara Wagner's contact information

 
You could try calling his business which is Alexandria Dock Works.
Phone number is 320-759-1711.

____________ _________ _________ __

From: Chrystal [mailto:wagnerchrystal@ yahoo.com]
Sent: Monday, October 05, 2009 6:10 PM
To: afha@yahoogroups. com
Subject: [ahc] Todd and Sara Wagner's contact information

I just wanted to know if any of you stay in contact with Todd and Sara
Wagner. I have talked to them several times by phone, but the phone
number that I have isn't working. I know they had mentioned moving to
Texas but not sure when that was going to happen. If anyone knows how I
can get ahold of them I would appreciate it. Thanks,

Chrystal Wagner (Hunter 4 years old)

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







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

I am the director of research for a financial consulting firm and have
access to a lot of databases. I may be able to obtain those articles for
you without incurring charges. If you wish, email me directly and I will
see what I can do. My email address is vaplatt@...



Vicky Platt



________________________________

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
nancysamson@...
Sent: Wednesday, November 18, 2009 6:26 PM
To: afha@yahoogroups.com
Subject: [ahc] Twitching





My son, Dave Samson, aged 29 has recently been experiencing generalized
muscle twitching. I googled AHC/Twitching and several med articles came
up but they have to be purchased. Has anyone heard of a correlation
between AHC and twitching. Dave has done very well on his medications
the past 10 yrs, having few episodes, he is living in his own apt. and
has a great job at the YMCA. We get his flunarizine from Canada but the
last batch we rec'd was manufactured in India. Would appreciate any
feedback.





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

Hi Angie

Joel is also 7, and you may have seen not long ago, me posting some questions
looking for support for behaviours.   I find that at about 7 the behaviours seem
to be that of a strong willed and somewhat confused 3-4 year old at times (other
times, a little better)!!

Although I too struggle with the behaviours, some of the things we have learnt
are.

1. Offer choices, with the main idea remaining the same - ie, you need to have a
bath, do you want to do it with a toy or without.  You need to go to bed, do you
want to go with me reading a story or without.  The idea behind this is they
have such little control (or none) over their disorder, and some times, just
like to asert control over SOMETHING.

2.  I don't give Joel a lot of time to object, ie, if taking him to the toilet,
I don't tell him first, just walk him in there, and as I am pulling his pants
down, say "come on, go quickly so you can get back and do ....... (what ever it
was he was doing)" - this is because he often doesn't think quick enough to
mount an argument, so if I don't give him time, the event is over before he
knows it.

3.  I have found it REALLY hard to find his currency, (what makes him tick - ie,
I will take you toy away or you will miss out on something if you don't  .... -
he doesn't care about that sort of thing and it seems to change - so that has
been challenging.  REWARD does work a lot more than punishment.  And he likes to
see visual reward based on something he likes, ie.. he has a chart at school
that he must complete activities, each activity he completes, he gets a
spongebob squarepants sticker - so many stickers he gets a merit voucher.  We
celebrate his little successes with hugs, kisses etc... (when he is in the mood)

4. I try not to start a battle with Joel that I am not going to win - so when he
has really really lost, I don't ask him to do something that I know he just
won't do - that way he doesn't get the pattern of "winning".  When I DO ask him
to do something and he turns on the attitude - unfortunately, it is a battle of
wills that I need to win (and don't always - but try!!!)

Our kids can be very rewarding - Joel is generally very loving, happy little boy
- I think sometimes the "cogs" in his brain just get stuck and he can't move
past things ... and STUBBORN ... OMG - gets that from his father (lol....)- at
these times, NEVER argue - cause you just won't get anywhere.  I just tell him
what is happening, and continue to make it happen (sometimes by force - ie,
carry him to the bathroom when he won't bath and undress him and put him in -
this will get harder as Joel gets bigger!!!)

I find consistency as often as possible (never possible 100% which is what these
kids need - but, we are human so not possible all the time).  Also routine and
not moving the goal posts (a little like autistic behaviours)

I am convinced they DO understand right from wrong, and do know that what they
are doing is affecting everyone, I just think at SOME times, they can't move
past it (I believe this is more  neurological than behaviour - something "fuzzy"
going on in the brain) - BUT, sometimes, they are just being little boys - I TRY
to understand where he is coming from - but try not to excuse his behaviours -
although he can't always help it - most of the time he can.  It is a battle and
I wish you luck, if you find a magic solution, please let me know ... otherwise,
I think we just keep supporting and sharing ideas, and lots of deep breaths and
counting.

Good luck

Brenda
(Joel 7)


--- In afha@yahoogroups.com, "lxdimd1" <lxdimd1@...> wrote:
>
> OKAY OUR SON IS THE FUNNIEST,BUT LATELY IT HAS BEEN A FIGHT FOR EVERYTHING.HE
HAS BEEN POTTY TRAINED OVER THE SUMMER,BUT HAS ISSUES ABOUT GOING TO THE
BATHROOM ESPECIALLY IN PUBLIC PLACES.IN THE EVENING HE REFUSES TO TAKE A
BATH,BRUSH HIS TEETH AND GET HIS PAJAMAS ON.IN THE MORNING SAME THING.HE HAS
EVEN REFUSED TO GET ON THE BUS IN THE MORNING AND ALSO AT SCHOOL(GONE TO PICK
HIM UP PLENTY OF TIMES THIS YEAR)I DONT KNOW WHAT HAS COME OVER HIM.WHAT HAS
ANYONE TRIED TO DO FOR SITUATIONS LIKE THIS?I HAVE NEVER HAD PROBLEMS HE'D LOVED
TO TAKE BATHS AND ESPECIALLY BRUSH HIS TEETH.HE'S ONLY 7,BUT ACTS LIKE HES A
TEENAGER WITH A REBELIOUS ATTITUDE....
>                 JUST AIRRING OUT,
>                        ANGIE MOMMY TO ISAAC 7 YRS OLD
>

Hi again, I should have read this before sending the last message.

I see you don't live in Canada.  Also, Ryan is not experiencing any twitching. 
Sounds like Dave is doing well, I always felt that if the episodes could be
controlled alot of the other aspects of life would fall into place.










To: afha@yahoogroups.com
From: nancysamson@...
Date: Thu, 19 Nov 2009 00:25:46 +0000
Subject: [ahc] Twitching





My son, Dave Samson, aged 29 has recently been experiencing generalized muscle
twitching. I googled AHC/Twitching and several med articles came up but they
have to be purchased. Has anyone heard of a correlation between AHC and
twitching. Dave has done very well on his medications the past 10 yrs, having
few episodes, he is living in his own apt. and has a great job at the YMCA. We
get his flunarizine from Canada but the last batch we rec'd was manufactured in
India. Would appreciate any feedback.





_________________________________________________________________
Eligible CDN College & University students can upgrade to Windows 7 before Jan 3
for only $39.99. Upgrade now!
http://go.microsoft.com/?linkid=9691819

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

I also chose to give my 18 year old daughter the H1N1 vaccine.  As a Registered
Nurse that works in a Health Care Clinic I see first hand what this virus can do
to people.  While most cases are mild to moderate, I have also seen the
complications that have occured in both healthy children and children with
chronic health conditions.  While this is a personal choice, I can tell you that
all of our pediatricians in our healthcare group have vaccinated their own
children and also received the vaccine themselves.

Our children do fit the "high risk category" that the CDC is recommending get
the vaccine........  I copied this off the CDC Website.

•Neurological and neurodevelopmental conditions [including disorders of the
brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy,
epilepsy (seizure disorders), stroke, intellectual disability (mental
retardation), moderate to severe developmental delay, muscular dystrophy, or
spinal cord injury]



--- In afha@yahoogroups.com, KathHurl@... wrote:
>
>
> I was speaking to Abbie's nurse yesterday and she said that people don't seem
to realize that the H1N1 is a flu vaccine just like all other flu vaccines and
is made the same way.  Each year, when the flu vaccines are created, there is a
determination as to what strains it should combat -- and there are many strains;
H1N1 is one strain of many.  This year, the regular flu vaccine is for 7
different strains and then there is the one specifically for H1N1 because of how
prevalent this particular virus is.
>
> Abbie had her H1N1 shot about 3 weeks ago and so far she is doing well.  I
don't blame parents for being concerned; I think if she had never had any kind
of flu shot, I might have made a different decision.  But because she's been
getting flu shots for years now, I was okay with this one.
>
>
>
>
> -----Original Message-----
> From: lxdimd1 <lxdimd1@...>
> To: afha@yahoogroups.com
> Sent: Tue, Nov 10, 2009 9:13 am
> Subject: [ahc] RE:HINI VIRUS
>
>
>
>
>
>
> I BY FAR AM A MEDICAL EXPERT,BUT AS A MOTHER I CAN TELL YOU I DONT FEEL
COMFORTABLE GIVING MY SON A NEW VACCINE..I DON'T LIKE THE IDEA OF GIVING
SOMETHING THAT HAS NOT BEEN TESTED LONG ENOUGH.I DID HOWEVER GIVE HIM THE FLU
VACCINE,BUT ULTIMATELY THE DECISSION IS UP TO YOU.WHAT DOES YOUR GUT TELL YOU TO
DO?IT TOOK ME AWHILE TO DECIDE,BUT I FELT MORE COMFORTABLE WITH PREVENTION.LOTS
OF HANDWASHING AND I DO NOT SEND HIM TO SCHOOL WITH A RUNNY NOSE OR COUGH.
> BEST WISHES,
> ANGIE MOMMY TO ISAAC 7YRS OLD
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Although I am new to this web group I am not new to AHC. My son, Dave,
is 29yr. Looking back over Dave's childhood I wish someone had told me
that our AHC children need patience, patience and more patience and
positive motivation. I sadly remember that so much of Dave's
childhood/adolescence was a struggle with his emotional and behavioral
difficulties.  Part of it for me was that I truly wasn't prepared for
what was required on my part and it took so many years for me to fully
accept that Dave would always have struggles. Looking back, when he was
Issaac's age I wish I had  known what I know now: whether at 7, 17 or 29
they will have their difficulties and humor and patience on our part is
the only answer because there seemed to be no end to my frustration.
Developing that patience, whether thru hourly prayers, a mantra or
parental counseling, is equal to becoming a professional body builder
but I see now that there is no other answer.
Wishing you strength and boundless love for your son.
--- In afha@yahoogroups.com, "lxdimd1" <lxdimd1@...> wrote:
>
> OKAY OUR SON IS THE FUNNIEST,BUT LATELY IT HAS BEEN A FIGHT FOR
EVERYTHING.HE HAS BEEN POTTY TRAINED OVER THE SUMMER,BUT HAS ISSUES
ABOUT GOING TO THE BATHROOM ESPECIALLY IN PUBLIC PLACES.IN THE EVENING
HE REFUSES TO TAKE A BATH,BRUSH HIS TEETH AND GET HIS PAJAMAS ON.IN THE
MORNING SAME THING.HE HAS EVEN REFUSED TO GET ON THE BUS IN THE MORNING
AND ALSO AT SCHOOL(GONE TO PICK HIM UP PLENTY OF TIMES THIS YEAR)I DONT
KNOW WHAT HAS COME OVER HIM.WHAT HAS ANYONE TRIED TO DO FOR SITUATIONS
LIKE THIS?I HAVE NEVER HAD PROBLEMS HE'D LOVED TO TAKE BATHS AND
ESPECIALLY BRUSH HIS TEETH.HE'S ONLY 7,BUT ACTS LIKE HES A TEENAGER WITH
A REBELIOUS ATTITUDE....
>                 JUST AIRRING OUT,
>                        ANGIE MOMMY TO ISAAC 7 YRS OLD
>

My son, Dave Samson, aged 29 has recently been experiencing generalized muscle
twitching. I googled AHC/Twitching and several med articles came up but they
have to be purchased. Has anyone heard of a correlation between AHC and
twitching. Dave has done very well on his medications the past 10 yrs, having
few episodes, he is living in his own apt. and has a great job at the YMCA. We
get his flunarizine from Canada but the last batch we rec'd was manufactured in
India. Would appreciate any feedback.

I was wondering if a physiatrist could help with Emily's movements and weakness.
Does anyone have any experience with one for AHC or hemiplegic migraine?

Thanks,
Fran

OKAY OUR SON IS THE FUNNIEST,BUT LATELY IT HAS BEEN A FIGHT FOR EVERYTHING.HE
HAS BEEN POTTY TRAINED OVER THE SUMMER,BUT HAS ISSUES ABOUT GOING TO THE
BATHROOM ESPECIALLY IN PUBLIC PLACES.IN THE EVENING HE REFUSES TO TAKE A
BATH,BRUSH HIS TEETH AND GET HIS PAJAMAS ON.IN THE MORNING SAME THING.HE HAS
EVEN REFUSED TO GET ON THE BUS IN THE MORNING AND ALSO AT SCHOOL(GONE TO PICK
HIM UP PLENTY OF TIMES THIS YEAR)I DONT KNOW WHAT HAS COME OVER HIM.WHAT HAS
ANYONE TRIED TO DO FOR SITUATIONS LIKE THIS?I HAVE NEVER HAD PROBLEMS HE'D LOVED
TO TAKE BATHS AND ESPECIALLY BRUSH HIS TEETH.HE'S ONLY 7,BUT ACTS LIKE HES A
TEENAGER WITH A REBELIOUS ATTITUDE....
                 JUST AIRRING OUT,
                        ANGIE MOMMY TO ISAAC 7 YRS OLD

HI MY NAME IS ANGIE BEFORE WE HAD STARTED MY SON ISAAC ON FLUNARIZINE(HE WAS 4
AT THE TIME)HE WAS HAVING EPISODES ALL THE TIME.HE WOULD HAVE AN EPISODES TWICE
A WEEK AND THEY WOULD LAST FOR 3 DAYS.WE STARTED HIM ON THIS MEDICATION AND IT
WAS JUST A BIG DIFFERENCE.HE WENT FROM HAVING THEM 2CE A WEEK TO 1CE A MONTH AND
NOW HAS THEM EVERY 6 WEEKS AND THEY ARE NOT THAT BAD.(MOST OF THE TIME)I DONT
HAVE ANY COMPLAINTS WITH THIS MEDICATION.HOPE THIS HELPS.
   WISH YOU THE BEST,
          ANGIE MOMMY TO ISAAC 7YRS OLD

Hi Susan

I know that Dr Swoboda has a protocol for children who are in a severe
state.  It involves putting them in a coma like state for a short
period of time.  We have never used on our son but our neurologist has
the protocol in case we ever need.. It may be worth getting your dr.s
to contact her..she is very approachable.  As a additional note..Ethan
has had epsiodes lasting upto a month in length..they are very bad for
the first 2 weeks and tend to drop of there after..maybe Rhys is
having an extended episode.

Good luck and I hope Rhys starts to get better soon.

Claire
Dr. Kathryn Swoboda
University of Utah School of Medicine
Department of Neurology
30 North 1900 East, Room 3R413
Salt Lake City, UT 84132
Phone 801.585.9717 to reach any of our coordinators
Phone 801.581.3551 to reach Dr. Sandra Reyna, co-director
Fax 801.587-9346
or email our coordinators:
benjamin.chisum@...
michellem@...
jenna.dodds@...

On 17-Nov-09, at 2:12 PM, SUSAN JONES wrote:

> hi can somebody please help my grandson Rhys(6) had AHC at the
> moment he is in hospital with very severe body movements the doctors
> have tried various medicines but nothing is working has anyelse had
> these problems? We live in Leiston England i would be grateful if
> anyone has any ideas we are desperate Sue (nannie)
>
> --- On Tue, 23/6/09, mkderks@...
> <mkderks@...> wrote:
>
> From: mkderks@... <mkderks@...>
> Subject: Re: [ahc] swimming
> To: afha@yahoogroups.com
> Date: Tuesday, 23 June, 2009, 13:10
>
> Nick (now 19) used to hate the water when he was little. Baths were
> an aerobic activity for me. I think it was a sensory thing and
> experienced episodes once in a while. However, we continued to work
> with him slowly with the water, sometimes it was just his feet in
> the water. He now loves being in the water. I agree with you that
> it's probably the excitement not the water bringing on the episode.
>
> ----- Original Message -----
> From: "Vicky Platt" <vaplatt@willamette. com>
> To: afha@yahoogroups. com
> Sent: Monday, June 22, 2009 11:18:07 AM GMT -06:00 US/Canada Central
> Subject: RE: [ahc] swimming
>
> Angie,
>
> My Emma is also 7 years old. She never would go near water and even
> baths were challenging. She never had episodes in water because we
> just
> couldn't get her near it.
>
> This spring Emma started taking private swim lessons for 15 minutes in
> an indoor heated pool. She watched her sister take lessons since the
> fall and went in the pool this spring without incident. This month she
> just started with a 30 minute private lesson. We are constantly in
> shock
> over how well she does in the pool. The smile on her face is well
> worth
> the cost of private lessons.
>
> She did have one episode of mild Hemiplegia coming out of the pool. I
> think it was more excitement driven than triggered by the water.
>
> Good luck with Isaac and I hope you continue to have success in the
> pool.
>
> Vicky Platt
>
> Willamette Management Associates
>
> 8600 W. Bryn Mawr Ave., Suite 950-N
>
> Chicago, Illinois 60631
>
> 773-399-4314 (w)
>
> 773-399-4310 (f)
>
> < http://ahcwalkforki ds.com/index. html >
>
> ____________ _________ _________ __
>
> From: afha@yahoogroups. com [mailto: afha@yahoogroups. com ] On
> Behalf Of
> Angie Davis
> Sent: Monday, June 22, 2009 10:28 AM
> To: afha@yahoogroups. com
> Subject: [ahc] swimming
>
> I have a couple of questions for everyone and wanted some feedback on
> experiences. Our son Isaac has not been able to go swimming without
> having an episode.He has not ever been able to get in a
> pool,river,ocean, sprinkler, water balloons,nothing. ...When he does
> go he
> gets the worst types of episodes,like both sides go limp and looking
> miserable.But we try it every Summer at least twice.This Summer he has
> gone swimming 4 days in a row without anything happening to him.I'm in
> shock.Does anyone have a child that has water (swimming)as a trigger
> and
> then all of the sudden it stopped?Out of curiosity,I would like to
> know
> ...
> Thank you,
> Angie mommy to Isaac 7yrs old
>
> [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]

hi can somebody please help my grandson Rhys(6) had AHC at the moment he is in
hospital with very severe body movements the doctors have tried various
medicines but nothing is working has anyelse had these problems? We live in
Leiston England i would be grateful if anyone has any ideas we are desperate Sue
(nannie)

--- On Tue, 23/6/09, mkderks@... <mkderks@...> wrote:


From: mkderks@... <mkderks@...>
Subject: Re: [ahc] swimming
To: afha@yahoogroups.com
Date: Tuesday, 23 June, 2009, 13:10








Nick (now 19) used to hate the water when he was little. Baths were an aerobic
activity for me. I think it was a sensory thing and experienced episodes once in
a while. However, we continued to work with him slowly with the water, sometimes
it was just his feet in the water. He now loves being in the water. I agree with
you that it's probably the excitement not the water bringing on the episode.

----- Original Message -----
From: "Vicky Platt" <vaplatt@willamette. com>
To: afha@yahoogroups. com
Sent: Monday, June 22, 2009 11:18:07 AM GMT -06:00 US/Canada Central
Subject: RE: [ahc] swimming

Angie,

My Emma is also 7 years old. She never would go near water and even
baths were challenging. She never had episodes in water because we just
couldn't get her near it.

This spring Emma started taking private swim lessons for 15 minutes in
an indoor heated pool. She watched her sister take lessons since the
fall and went in the pool this spring without incident. This month she
just started with a 30 minute private lesson. We are constantly in shock
over how well she does in the pool. The smile on her face is well worth
the cost of private lessons.

She did have one episode of mild Hemiplegia coming out of the pool. I
think it was more excitement driven than triggered by the water.

Good luck with Isaac and I hope you continue to have success in the
pool.

Vicky Platt

Willamette Management Associates

8600 W. Bryn Mawr Ave., Suite 950-N

Chicago, Illinois 60631

773-399-4314 (w)

773-399-4310 (f)

< http://ahcwalkforki ds.com/index. html >

____________ _________ _________ __

From: afha@yahoogroups. com [mailto: afha@yahoogroups. com ] On Behalf Of
Angie Davis
Sent: Monday, June 22, 2009 10:28 AM
To: afha@yahoogroups. com
Subject: [ahc] swimming

I have a couple of questions for everyone and wanted some feedback on
experiences. Our son Isaac has not been able to go swimming without
having an episode.He has not ever been able to get in a
pool,river,ocean, sprinkler, water balloons,nothing. ...When he does go he
gets the worst types of episodes,like both sides go limp and looking
miserable.But we try it every Summer at least twice.This Summer he has
gone swimming 4 days in a row without anything happening to him.I'm in
shock.Does anyone have a child that has water (swimming)as a trigger and
then all of the sudden it stopped?Out of curiosity,I would like to know
...
Thank you,
Angie mommy to Isaac 7yrs old

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
















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

Laura,



This may sound odd, but does Berit wear sun glasses to the pool? If not,
maybe give it a try. The reflection of light on water is full of motion
and very intense.



I hope you find a solution. Emma just loves the pool and takes 30
minutes lessons once a week. Good luck.



Vicky Platt

<http://ahcwalkforkids.com/index.html>



________________________________

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
Laura Cooper
Sent: Thursday, October 29, 2009 9:22 AM
To: afha@yahoogroups.com
Subject: Re: [ahc] New to the group, lots of questions





Hi,
My daughter Berit (14) never has problems with car trips. When she was
little I would take her for a drive if she was having an attack because
it would lull her to sleep and the episode would end. We have taken many
multi-hour trips while on vacation, or when we used to drive to Canada
for flunarizine. I just make sure she has things to do, and snacks.

There are so many similarities with our kids, and yet so many
differences...

Water is a trigger almost every time-- even showers if I don't plan
well. The worst for me is a full blown episode with shampoo still in her
hair. For Berit the worst is when she has FINALLY arrived at the pool
and her body goes. I feel so bad for her, but I have no idea how to
manage this. It happens even if she doesn't know where we are going, so
she only gets a couple minutes of play before she falls apart. Any
ideas??

Thanks,
Laura

From: Fran May
Sent: Wednesday, October 28, 2009 7:56 PM
To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>
Subject: Re: [ahc] New to the group, lots of questions

Thanks Cassie.

What is odd is that we can go on extended car trips or short ones and
nothing will happen. Her last car episode happened after we had been in
the car for less than 5 minutes.

From what I can tell, she has had 3 migraines with pain. My side of the
family has a significant history of migraine.

She has had some "epileptiform" activity on her regular EEGs, but
nothing on the video ones.

I hope we both get some answers!
Fran

--- On Wed, 10/28/09, Cassie Chaparro <cjchaparro@...
<mailto:cjchaparro%40gmail.com> > wrote:

From: Cassie Chaparro <cjchaparro@...
<mailto:cjchaparro%40gmail.com> >
Subject: Re: [ahc] New to the group, lots of questions
To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>
Date: Wednesday, October 28, 2009, 10:25 PM

Wow, your story sounds a lot like mine. We are still being worked up,
but
our neuro is leaning more towards migraine hemiplegia. His spells have
mainly been in the car. The things that helped him cope in the car were
putting shades on the windows, reclining the seat, putting movies on to
keep
his gaze inside, and antihistamines. This just came from a lot of trial
and
error, but now he can ride in the car for about 30 mins. If we have a
drive
longer than that, he takes the antihistamine so he can sleep through and
have less affect when he wakes up.

When I read the others' stories on here, it sounds just like my son,
phrases
we all use "wobbly spells" "good days and bad days" "water and cars
bother
them" "behavior issues" "keep juice and snacks on hand"...These
similarities lead my back to the neurologist questioning who is right.

My son spent 2 years on Trileptal and Keppra with no help. (3 neg EEGs
and
1 4-day neg EEGs). He has speech delay and sometimes loses speech
altoghether. My neuro says this is what makes him think it is migraine
and
not AHC. Also, if there is family history of migraine. He felt (and I
don't know if this is accurate) that AHC is diagnosed with all of these
symptoms and there is no history of migraine in the family,and that
speech
is affected by migraine (along with vision and/or hearing can be
afffected
by migraine). He also said that the fact that it happens in the car
leads
him to believe this is migraine, as motion sickness is a variant of
migraine
in itself.

I don't know if this is helpful or not. I follow this board because I
have
not found one for migraine hemiplegia and the symptoms are very similar.
Plus the other parent tips have helped me with my son regardless of
diagnosis.

I used to really need the right diagnosis... but now I just need the
right
advice and that comes by listening and sharing and trial and error. I
read
one study that believes there is some crossover between the 2 and I
think
that seems quite likely.

Good luck,

Cassie

On Wed, Oct 28, 2009 at 4:28 PM, FM <jasonfran1@yahoo. com> wrote:

>
>
> Hi,
>
> My 4yo daughter has not been diagnosed with AHC, but it was suggested
a
> while back. Since then, everything I've read seems to lead me back to
AHC.
> Currently, my daughter's drs are thinking she has migraines or a
migraine
> variant. Since August 08, we were told she had epilepsy, but even that
is
> being questioned. All that time she was on epilepsy drugs, but she
still
> kept having episodes, especially in the car. My main question is, can
AHC
> attacks look like seizures? For instance, on some car rides, she will
stare
> off and become unresponsive for 30seconds to 1 mintue. She will be
confused,
> then slowly return to normal. But, for days after that, we will see
terrible
> behaviors and rages. That looked and sounded like seizures to all of
us, but
> after 2 4-day video EEGs in the hospital--no seizures. We are in the
process
> of weaning her off her epilepsy meds.
>
> Starting this summer, she would have left-sided facial weakness which
they
> said was Todd's paralysis. That lead into changes in her posture and
> walking. Some days she walks great, other days not. Yesterday the left
side
> of her face was weak, but today that is better but her leg is weak.
She has
> held her hands at odd angles since she was a baby, but now she curls
up her
> arm fairly often. Since all this started, she has times where her
speech is
> affected, but that is happening more often. She is also having strange
eye
> movements. She is mildly developmentally delayed.
>
> One of the main drs said that this was not AHC because her symptoms
are
> "mild." She is fiercely independent, but there are days that she begs
me to
> carry her or to put her in the stroller because she is weak.
>
> I have done as much research as I can as a parent. Does any of this
sound
> familiar to any of you? Is there something else that maybe this could
be?
> Does anyone know if migraines or migraine variants can look like AHC?
>
> Thanks,
> Fran
>
>
>

[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]

Hi Katrina

In my daughters case I saw a huge difference. I strongly believe that
Flunarizine is helping Sunna (3 1/2 years).

Sunna was on two drugs (Keppra and Phenemal) that did not work at all from she
was 5 months to 13 months. She was wrongly diagnosed with epilepsy at that time.
When Sunna got her final diagnosis, AHC, she started on Flunarizine at age 14
months. We started to wean her off Keppra and Phenemal right after the
diagnosis. Later that year when Sunna was 21 months, after 2 to 3 episodes a
months we put in Topamax.
Topamax has its downs but overall it has helped Sunna. But what I see in her
that I can relate to Flunarizine is that when she has her episodes, Sunna gains
her strenght back more quickly. She has her episodes less frequently. For
instance there has not been an episode since October 21st.  She can have
episode once a month, get 2 months off and then an episode. Last year we had 5
months of no episodes (thank God)

To cut it short, since Sunna started taking Flunarizine and the mixture of
Topamax, she gets her strenght back after a night off sleep, she is not
paralysed for days like she used to be. It could take up to 14 days for her to
get her hands and feet working again, overall getting her bodys strenght back.
I will not get into regaining her mental strenght after episodes, that is a
whole another long story.

This is my point of view on this, but the families here are an ocean of good
information, the best really, so you will get good feedback.

Take care
Ragga Johannesson
Mom to Sunna
Reykjavik
Iceland




________________________________
From: Katrina <katrinaplum@...>
To: afha@yahoogroups.com
Sent: Tue, November 17, 2009 1:06:10 AM
Subject: [ahc] how does flunarizine help?

 
Hi there,

We have obtained flunarizine for our daughter Delaney but are holding off on
starting the medication until we meet with Dr. Andermann. I was wondering from
your personal experiences how flunarizine has helped- does it help with weakness
episodes and/or attacks? Any feedback is really appreciated. Thanks, Katrina







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

Message Alert - You Have 1 Important Unread Message!
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http://adelaovx.zoomshare.com/files/sexygirl.htm

Hi there,

We have obtained flunarizine for our daughter Delaney but are holding off on
starting the medication until we meet with Dr. Andermann. I was wondering from
your personal experiences how flunarizine has helped- does it help with weakness
episodes and/or attacks? Any feedback is really appreciated. Thanks, Katrina

Hi,
My daughter Berit (14) never has problems with car trips. When she was little I
would take her for a drive if she was having an attack because it would lull her
to sleep and the episode would end. We have taken many multi-hour trips while on
vacation, or when we used to drive to Canada for flunarizine. I just make sure
she has things to do, and snacks.

There are so many similarities with our kids, and yet so many differences...

Water is a trigger almost every time-- even showers if I don't plan well. The
worst for me is a full blown episode with shampoo still in her hair. For Berit
the worst is when she has FINALLY arrived at the pool and her body goes. I feel
so bad for her, but I have no idea how to manage this. It happens even if she
doesn't know where we are going, so she only gets a couple minutes of play
before she falls apart. Any ideas??

Thanks,
Laura


From: Fran May
Sent: Wednesday, October 28, 2009 7:56 PM
To: afha@yahoogroups.com
Subject: Re: [ahc] New to the group, lots of questions


   Thanks Cassie.

What is odd is that we can go on extended car trips or short ones and nothing
will happen. Her last car episode happened after we had been in the car for less
than 5 minutes.

From what I can tell, she has had 3 migraines with pain. My side of the family
has a significant history of migraine.

She has had some "epileptiform" activity on her regular EEGs, but nothing on the
video ones.

I hope we both get some answers!
Fran

--- On Wed, 10/28/09, Cassie Chaparro <cjchaparro@...> wrote:

From: Cassie Chaparro <cjchaparro@...>
Subject: Re: [ahc] New to the group, lots of questions
To: afha@yahoogroups.com
Date: Wednesday, October 28, 2009, 10:25 PM



Wow, your story sounds a lot like mine. We are still being worked up, but
our neuro is leaning more towards migraine hemiplegia. His spells have
mainly been in the car. The things that helped him cope in the car were
putting shades on the windows, reclining the seat, putting movies on to keep
his gaze inside, and antihistamines. This just came from a lot of trial and
error, but now he can ride in the car for about 30 mins. If we have a drive
longer than that, he takes the antihistamine so he can sleep through and
have less affect when he wakes up.

When I read the others' stories on here, it sounds just like my son, phrases
we all use "wobbly spells" "good days and bad days" "water and cars bother
them" "behavior issues" "keep juice and snacks on hand"...These
similarities lead my back to the neurologist questioning who is right.

My son spent 2 years on Trileptal and Keppra with no help. (3 neg EEGs and
1 4-day neg EEGs). He has speech delay and sometimes loses speech
altoghether. My neuro says this is what makes him think it is migraine and
not AHC. Also, if there is family history of migraine. He felt (and I
don't know if this is accurate) that AHC is diagnosed with all of these
symptoms and there is no history of migraine in the family,and that speech
is affected by migraine (along with vision and/or hearing can be afffected
by migraine). He also said that the fact that it happens in the car leads
him to believe this is migraine, as motion sickness is a variant of migraine
in itself.

I don't know if this is helpful or not. I follow this board because I have
not found one for migraine hemiplegia and the symptoms are very similar.
Plus the other parent tips have helped me with my son regardless of
diagnosis.

I used to really need the right diagnosis... but now I just need the right
advice and that comes by listening and sharing and trial and error. I read
one study that believes there is some crossover between the 2 and I think
that seems quite likely.

Good luck,

Cassie

On Wed, Oct 28, 2009 at 4:28 PM, FM <jasonfran1@yahoo. com> wrote:

>
>
> Hi,
>
> My 4yo daughter has not been diagnosed with AHC, but it was suggested a
> while back. Since then, everything I've read seems to lead me back to AHC.
> Currently, my daughter's drs are thinking she has migraines or a migraine
> variant. Since August 08, we were told she had epilepsy, but even that is
> being questioned. All that time she was on epilepsy drugs, but she still
> kept having episodes, especially in the car. My main question is, can AHC
> attacks look like seizures? For instance, on some car rides, she will stare
> off and become unresponsive for 30seconds to 1 mintue. She will be confused,
> then slowly return to normal. But, for days after that, we will see terrible
> behaviors and rages. That looked and sounded like seizures to all of us, but
> after 2 4-day video EEGs in the hospital--no seizures. We are in the process
> of weaning her off her epilepsy meds.
>
> Starting this summer, she would have left-sided facial weakness which they
> said was Todd's paralysis. That lead into changes in her posture and
> walking. Some days she walks great, other days not. Yesterday the left side
> of her face was weak, but today that is better but her leg is weak. She has
> held her hands at odd angles since she was a baby, but now she curls up her
> arm fairly often. Since all this started, she has times where her speech is
> affected, but that is happening more often. She is also having strange eye
> movements. She is mildly developmentally delayed.
>
> One of the main drs said that this was not AHC because her symptoms are
> "mild." She is fiercely independent, but there are days that she begs me to
> carry her or to put her in the stroller because she is weak.
>
> I have done as much research as I can as a parent. Does any of this sound
> familiar to any of you? Is there something else that maybe this could be?
> Does anyone know if migraines or migraine variants can look like AHC?
>
> Thanks,
> Fran
>
>
>

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Hi Heather,

Thanks for this information.  I am going to get this worked up for Nico and
myself.  When I was a baby I could only tolerate 4 foods and this improved
as I got older.  But recently was found to have slow motility on an upper GI
and I have always noticed food feeling stuck.  I haven't had an emergent
episode, so thought this just happens. Now that I have read a bit on EE, I
think I better go get it checked out.  Even water gets stuck sometimes.

As for Nico, he avoids all proteins.  Loves anything that carb-based, but
never really has an appetite.  Even he will want a cupcake or something
other kiddos have, and then ends up just holding it.  When we do get meat in
him it is a hotdog or bologna.  I use Neocate by mouth mixed in V8 Fusion
juice (as he avoids all veggies too).  I let him lead now what he wants to
eat by mouth excluding milk and soy protein, and he seems like he knows what
bothers him.  We have to pay for the Neocate because he does not have a
G-tube, but from what I have heard about G-tubes, this can be a blessing in
disguise.

Did you little one have problems early on...sorry for the grossness...but
diarrhea, vomiting, severe eczema...?  Nico has all of that but tested
negative for true allergies.  I'm wondering if EE is associated only with
true allergies or sensitivities too.

Thanks again.  Please email me any time.

Cassie

On Tue, Nov 3, 2009 at 11:22 AM, Heather <hgates@...> wrote:

>
>
> Cassie, has your son been scoped (endoscopy) for Eosinophilic
> Esophagitis (EE)? When I saw he was on Neocate and trouble with
> proteins it raised huge red flag! Jocelyn has EE (dx at 2yrs) and her
> esophagus cleared on Neocate Jr. Since then we have trialed 13 foods
> and kept them all in the diet. She has been trialing milk this year and
> so far so good. She still takes Neocate Jr thru g-tube for sole
> nutrition, but eats some. Feel free to e-mail me at
hgates@...<hgates%40bex.net>and
> look up apfed.org for info on EE.
> Take care,
> Heather
>
>
> Cassie Chaparro wrote:
> >
> >
> > Hi Fran,
> >
> > Again...sounds just like my kiddo. At one point, my son woke up with
> > hemiplegia and no speech everyday for 3 months, but it went away for
> > 10 a.m.
> > or so. My neuro and I just talked about this whole morning symptom issue,
> > and he said it is also making him lean towards migraine hemiplegia. He
> > said
> > AHC should be more without correlation or cycle. He admitted that he
> > doesn't know much about AHC, as it is one of those mystery diagnoses and
> a
> > diagnosis of exclusion.
> >
> > We use the periactin in the car for long rides (I think I mentioned
> > before).
> > I did not try the Elavil for my son, though we were offered it. I take
> > Elavil myself for migraine prevention, and only 10 mg knocks me out. I
> was
> > mostly afraid to be honest.
> >
> > I do more with diet, and routine, and controlling his environment
> > whenever I
> > can. The really big change with the morning symptoms did come though
> after
> > we started Melatonin for sleep. Taking him off milk at 14 months changed
> > his life. Neuro thinks milk is a migraine trigger. He remains off milk
> > now, but we have tested (again trial and error) many foods. All protein
> > seems to bother him, and they have not figured out that one, but do
> > have him
> > on Neocate formula.
> >
> > If you are comfortable, I would be happy to chat with you on IM or
> private
> > email or even the phone. I haven't talked with anyone with such a similar
> > story. We go to the neurologist today for a followup on our last MRI,
> > so if
> > there is any new revelation, I'll let you know. From our last phone call,
> > he's pretty confident that MH is the diagnosis. I guess I'll have to find
> > the right board if that's what he decides! Although, I do like this
> group,
> > and the symptom crossover makes it easy to use their ideas and try new
> > things.
> >
> > Good luck,
> >
> > Cassie
> >
> > On Tue, Nov 3, 2009 at 8:20 AM, FM
<jasonfran1@...<jasonfran1%40yahoo.com>
> > <mailto:jasonfran1%40yahoo.com <jasonfran1%2540yahoo.com>>> wrote:
> >
> > >
> > >
> > > Hi--in my reading on AHC, sleep is supposed to help symptoms. My
> > daughter
> > > has been waking up every morning for the last several days with
> > weakness on
> > > one side of her body. The weakness doesn't go away completely, but
> > it does
> > > get better at times throughout the day.
> > >
> > > Also, we just switched from elavil to periactin for migraine. She
> > seems to
> > > have much less pain, but the weakness is persisting longer than
> > usual. (Her
> > > drs are still pursuing hemiplegic migraine.) Has anyone used either
> > of these
> > > meds?
> > >
> > > Thanks!
> > > Fran
> > >
> > >
> > >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> > ----------------------------------------------------------
> >
> >
> > No virus found in this incoming message.
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> > Version: 8.5.424 / Virus Database: 270.14.47/2478 - Release Date:
> 11/03/09 07:36:00
> >
> >
>
> [Non-text portions of this message have been removed]
>
>
>


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

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Hi Hannah

Thank you so much for that advise. I have tried so many things, but I think
by him cleaning himself might work. Like you say. All takes time with these
children.

Many thanks

Yolanda
----- Original Message -----
From: "Hannah Garnet" <hannahgarnet@...>
To: <afha@yahoogroups.com>
Sent: Tuesday, November 10, 2009 3:31 PM
Subject: RE: [ahc] Bowl Control


>
> Hi Yolanda.  I know exactly how you are feeling.  I used to think that
> with all of my son's problems, this one was the one issue that would hurt
> him the most, because it would prevent him from being able to go places
> and do things that he was capable of doing.  Its so frustrating because as
> you say there are times when he is successful in the toileting dept. so
> you know he can do but it seems that he just doesn't care.  Of course it
> is so much more complicated than that.  I used to really freak out about
> this, and that never helped one bit.  This is so hard to admit, but Ryan
> was probably around 19 when one day I just stopped reacting.  I also
> stopped cleaning him up, unless absolutely necessary.  I told him that he
> was too old for me to clean him, and he would have to look after it
> himself.  I stopped showing him how worried I was about it.  There were
> times he would spend an hour in the bathroom cleaning himself, and I
> stayed away.  After about a year of this, he finally got the message.
> He's 28 now and hasn't had any serious accidents in years.  However, when
> we go out to a mall or whatever, I always like to know where the washrooms
> are cause when he has to go, he has to go.  We often run to get there.  I
> have to say that life is so much better now, for him and everyone around
> him.  I know not all of our kids have this problem, but we did and all I
> can suggest is try not to get too upset in front of him and when possible
> make him deal with it on his own.  Not sure what your son's physical
> abilities are, and muscle tone must play into this too.
>
> It will get better, but its a long haul.
>
> Hannah
>
>
>
>
>
>
>
>
>
>
> To: afha@yahoogroups.com
> From: yolanda@...
> Date: Tue, 10 Nov 2009 06:56:01 +0000
> Subject: [ahc] Bowl Control
>
>
>
>
>
> Hi Everyone
>
> My son Theo is 11 years old now, and still have problems controlling his
> bowl stools. Some weeks he does so well and other weeks not so good. In
> general he has about 65% control. He is not on any diapers, but some times
> I think I must put him back onto diapers. I want to know from the parent
> with older kids, do this get better over time? Theo has improved over the
> years, but he is getting older now and messing in his pants is more of a
> issue now. I also don't want to go backwards with him. Any ideas or advise
> on this?
>
> Many thanks
>
> Yolanda
>
>
>
>
>
> _________________________________________________________________
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> 7 now
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>
> [Non-text portions of this message have been removed]
>
>
>
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