Carla vi o seu e-mail no grupo de Emiplegia Alternante da Infancia.
Meu ingles nao e muito bom, o que impossibilita a comunicacao no grupo.
Me retenho apenas em ler as mensagens dos outros para ver se surge alguma
novidade.

Tenho uma filha de 2 anos que aos quatro meses foi diagnosticada com
Emiplegia Alternante da Infancia.
Ela foi medicada com 10 gotas diarias de Flunarizina, e nao tenho visto
muita diferenca em seu estado.

Por favor me contate se souber de alguma novidade.

Estou desesperado...  Obrigado

Vilson Lirio

  - Vitoria-ES -

tracolit@...

-----Mensagem original-----
De: Karla Costa <karlafrazao@...>
Para: afha@yahoogroups.com <afha@yahoogroups.com>
Data: Terça-feira, 31 de Julho de 2001 06:25
Assunto: [ahc] AHC Brazil


>Dear Sirs,
>
>My name is Karla Oliveira Frazão. I live in Brazil and my eleven year old
>son Jorge Augusto was diagnosed as having A.H.C. when he was four years
old.
>However, as we know, people’s ignorance about this disease, particularly in
>Brazil, is still a cause for our concern.
>Jorge Augusto doesn´t walk by himself. He also doesn´t read or write
>anything despite going to school.
>The hemiplegic attacks occurs frequently, once a week in average, despite
>the medicine ( Flunarin, Rivotril and Tryleptal ) that he takes regularly.
>The epileptic attacks  are not so frequent anymore, after the changing of
>the medicine from Depakene to Tryleptal.
>According to the last Magnetic Ressonance Imaging – M.R.I. done two months
>ago, Jorge Augusto presents a “temple mesial sclerosis” caused, said his
>doctor, by the epileptic or the hemiplegic attacks. Maybe by both, he does
>not  know yet.
>We have being very concerned about Jorge Augusto`s  behavior, lately. He
>seems  very excited, sometimes behaving  aggressively with no reason to act
>this way. Due to this behavior Jorge Augusto is not going to school these
>days.
>The doctor have changed the medicine more than once but we have no success
>in controlling this behavior.
>We believe, me and my husband, that this behavior is related to hormonal
>changes that should be in process because Jorge Augusto`s sleeping is not
so
>tranquil now-a-days. He wakes several times during the night and even when
>sleeping deeply he moves his body in bed every time.
>
>We have some questions:
>1) Are these changings a sign that the disease is growing ?
>2) Is there any family that have noticed such changings in children of
Jorge
>Augusto´s age?
>
>Thank you all for any help.
>God bless you all.
>
>Jorge and Karla Frazão
>Niterói – Rio de Janeiro -  Brazil.
>
>
>
>_________________________________________________________________
>Seja avisado de novas mensagens do Hotmail e use o comunique-se com seus
>amigos com o MSN Messenger em http://messenger.msn.com.br
>
>
>
>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.org
>
>Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

Olá Vilson, como vai?
   Também não domino muito bem o inglês, por isso tanta demora para entrar
para este grupo. Para nós, aqui no Brasil, foi muito bom ter nos encontrado,
pois até agora nos encontrávamos sozinhos.
   O nosso filho Jorge tem 11 anos e até o momento pouca coisa sabemos desta
doença. Como o seu filho, ele também toma flunarim desde, aproximadamente, 4
anos de idade. Também até hoje não vimos melhoras significativas no combate
as crises de hemiplegia.
   Esta doença é muito individual no seu desenvolvimento, apresentando
quadros diferentes para cada criança, assim como a eficácia do seu
tratamento. Umas crianças conseguem sucesso com o flunarim, outras não.
   Estamos construindo um site para o Jorge(não está terminado), onde o nosso
objetivo é justamente divulgar o nosso problema, para que possamos encontrar
outras pessoas que também estejam precisando dividir  suas preocupações em
relação a esta doença tão rara.O endereço é:
http://membro.intermega.com.br/jorjeaugustojr/index.html
   Vilson, ao longo desses 11 anos  aprendemos que jamais devemos deixar de
acreditar e termos muita fé.Esta doença com certeza, enquanto pais, nos
angústia e nos preocupa muito, mas agora estamos unidos, qualquer dúvida,
angústia,conquistas, sucesso, conte conosco.
    Moramos em Niterói, Rio de Janeiro. Nosso telefone é: 2610-3191 ou
2710-3254
     Fé em Deus!
     Um abraço Karla e Jorge Frazão


_________________________________________________________________
Seja avisado de novas mensagens do Hotmail e use o comunique-se com seus
amigos com o MSN Messenger em http://messenger.msn.com.br

Hi there,

During the past six months we have been using valium to break Trevors
episodes.  We were only giving it rectally 2.5 mg if he had a severe
episode.  We have been playing with the dosage however and have found
that if I give 1mg of oral valium and a short nap, after a bad
episode (eyes rolled up not responding normal, headache, arm
paralysis)  that this will break the episodes completely.  If he has
the arm paralysis it will resolve in minutes compared to days or
weeks that we used to see.  I have been giving one dose after the
episode and then two more dosages one six hours later and one the
next morning.  This has worked fantastic for us,  we were seeing
severe episodes clusters of them (back to back) and arm and or leg
paralysis that would last for days or up to a week.  I don't know if
this will help anyone else but it may be worth a try.  Since Trevor
is only two we are extremely careful what meds we give him, so far
have not had to admit him to the hospital for sedation which some of
you have tried.  We have spoken to our pediatrician about this and he
is very comfortable trying this since it is a very low dosage of
valium,  Trevor tolerates the valium great with only a little chest
congestion occasionally as a side effect.  Anyway it may be worth a
try to see if it helps anyone else.

Also, I found a great book which some of you may want to read,  it is
called special kids need special parents.  It has been extremely
helpful for our family,  some of it doesn't pertian to us but it was
still worthwhile reading,  the author is Judith Loseff Lavin.  It is
fairly short but helps to deal with a special need child.  It has a
little saying I wanted to tell you,  it's called "Instead"

Instead of walking with you
I will crawl with you
Instead of talking with you,  I will find ways to communicate with you
Instead of focusing on what you cannot do,  I will reward you with
love for what you can do.
Instead of Isolating you,  I will create adventures for you
Instead of feeling sorry for you, I will respect you.

Anyway hope this info helps,  any questions on the valium please let
me know,  it has made this disease a little more tolerable for our
family, and at least made the episodes much shorter and hopefully
less painful for our little guy.

Karen and Trevor

Hi, Karen --  we used to see Dr. Mikati when he was at Children's Hospital in
Boston.  Since his departure, we have seen Dr. Riviello who was aware of Dr.
Mikati's involvement with AHC and who took over some of his patients.  Also,
I understand that Dr. Hellmers (not sure of the spelling) is somewhat
familiar with AHC as well.  They are both pediatric neurologists.  I hope
this helps.

Kathy Hurley


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

Has anyone seen Dr Andermann in Montreal for a review on your child's
AHC diagnosis.  We have been referred there for a second opinion or
more accurately to get more information regarding AHC.

If anyone has been to McGill, please let me know if you think it was
a worthwhile trip and any feedback on the doctor(s) who saw your
child.

Does anyone know if I can email Dr Mikati or other AHC 'experts' for
input regarding my child?  Does AFHA have email addresses for these
doctors?

Our daughter had another major (looking attack) while we were on
vacation yet again, the attack looked different.  She was at the lake
edge and this just overloaded her system.  However, she was
convulsive and jerking, her jaw closed with saliva drooling/frothing
from her mouth.  She was over it in 20 min or so but I still called
911 and took a trip to the ER.  I was afraid she was having
difficulty breathing or would aspirate.  There was no 'classical'
hemiplegia following the attack.  She went to sleep for the night and
the next morning had a little shakiness for the first 20 minutes then
back to baseline.

Doctor upped her flunarizine to 5mg in am/10 mg in pm (26lbs/2yrs
old).  Does this attack sound familiar to others?  Are other kids on
this dosage of flunarazine?


Thanks again to all those who respond.  It really helps to hear
others' experiences.

Karen V.

Hi Karen:

Leslie has been a patient of Dr. Andermann's for 37 years.  To this date, we
still have nothing new.  He works with a team of neurologist and is very
knowledgable.  However, there is very little information on this condition
and I am sure that I would be one of the first to know if there has been any
major breakthrough as Leslie is certainly an interest to him.  We saw him
only two weeks ago when she was in the Neuro. after having had another major
seizure.  He asks me the questions.   We are all learning together.  The
Montreal Neuro. has a fine team of neurologists and certainly, through both
Leslie and Dr. Andermann, many of them are familiar with her condition.  All
of the doctors there are keen to see her and ask lots of questions.  There
have been several other kids with AHC that have also been seen by Dr.
Andermann.   However, other than a diagnosis, I do not think that there is
anymore to they can offer at this time.

This episode that you child had sounds very much like seizure activity to
me.  Dr. Andermann may suggest some anti-convulsant mediation.  It works for
us.

Lynda Burnham
-----

Hi Karen,
It sounds like your daughter had a seizure
Our daughter Michele is 4 and she doesn't jerk and never had the drooling
and
frothing.The only thing that happens to her when she has an attack is she
slowly looses the use of her arm and her eyes pull to the side that is
affected sometimes it affects her leg too.Just last Wednesday it started on
one
side and within an hour it moved to the other side and she was completely
paralyzed until she fell asleep and then she was fine for about an hour and
then it started all over again.Thankfully she was better the next day only
two attacks each about 30min. to an hour,always relieved by sleep.
Michele takes 5mg of Flunar.in the morning and 2.5mg at night.Her Dr thinks
that giving her more would be too much                      She also
takes 0.5mg of CLONAZEPAM 2x a day.In our opinion this is the  medic.that
helps her the most.She weights 35 lb.our neuro is in Hamilton ON. and
he also has 1 or 2 other patients with AHC ,he diagnosed Michele when
she was only 6 months old.       Suzie.---- Original Message -----
From: <popcornkcv@...>
To: <afha@yahoogroups.com>
Sent: Saturday, August 11, 2001 9:32 AM
Subject: [ahc] Expert Opinions


> Has anyone seen Dr Andermann in Montreal for a review on your child's
> AHC diagnosis.  We have been referred there for a second opinion or
> more accurately to get more information regarding AHC.
>
> If anyone has been to McGill, please let me know if you think it was
> a worthwhile trip and any feedback on the doctor(s) who saw your
> child.
>
> Does anyone know if I can email Dr Mikati or other AHC 'experts' for
> input regarding my child?  Does AFHA have email addresses for these
> doctors?
>
> Our daughter had another major (looking attack) while we were on
> vacation yet again, the attack looked different.  She was at the lake
> edge and this just overloaded her system.  However, she was
> convulsive and jerking, her jaw closed with saliva drooling/frothing
> from her mouth.  She was over it in 20 min or so but I still called
> 911 and took a trip to the ER.  I was afraid she was having
> difficulty breathing or would aspirate.  There was no 'classical'
> hemiplegia following the attack.  She went to sleep for the night and
> the next morning had a little shakiness for the first 20 minutes then
> back to baseline.
>
> Doctor upped her flunarizine to 5mg in am/10 mg in pm (26lbs/2yrs
> old).  Does this attack sound familiar to others?  Are other kids on
> this dosage of flunarazine?
>
>
> Thanks again to all those who respond.  It really helps to hear
> others' experiences.
>
> Karen V.
>
>
>
>
>
> 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.org
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

Hi Karen,

It sounds like your daughter had a seizure.  My son has them along with the
episodes. One of his seizures have lasted over 30 minutes.  Our mistake is
hurrying to up his seizure medication before waiting to see if he had
another one. If I had it to do over again I'd wait to see if he had anymore.

Good luck.

Carol

> -----Original Message-----
> From: popcornkcv@... [mailto:popcornkcv@...]
> Sent: Saturday, August 11, 2001 6:32 AM
> To: afha@yahoogroups.com
> Subject: [ahc] Expert Opinions
>
>
> Has anyone seen Dr Andermann in Montreal for a review on your child's
> AHC diagnosis.  We have been referred there for a second opinion or
> more accurately to get more information regarding AHC.
>
> If anyone has been to McGill, please let me know if you think it was
> a worthwhile trip and any feedback on the doctor(s) who saw your
> child.
>
> Does anyone know if I can email Dr Mikati or other AHC 'experts' for
> input regarding my child?  Does AFHA have email addresses for these
> doctors?
>
> Our daughter had another major (looking attack) while we were on
> vacation yet again, the attack looked different.  She was at the lake
> edge and this just overloaded her system.  However, she was
> convulsive and jerking, her jaw closed with saliva drooling/frothing
> from her mouth.  She was over it in 20 min or so but I still called
> 911 and took a trip to the ER.  I was afraid she was having
> difficulty breathing or would aspirate.  There was no 'classical'
> hemiplegia following the attack.  She went to sleep for the night and
> the next morning had a little shakiness for the first 20 minutes then
> back to baseline.
>
> Doctor upped her flunarizine to 5mg in am/10 mg in pm (26lbs/2yrs
> old).  Does this attack sound familiar to others?  Are other kids on
> this dosage of flunarazine?
>
>
> Thanks again to all those who respond.  It really helps to hear
> others' experiences.
>
> Karen V.
>
>
>
>
>
> 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.org
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>

Karen,

Your daughter's attack sounds to me like a seizure.  My daughter has AHC
and Epilepsy.  She has the very same kind of seizures.  They have
happened the same way when she's near water.  I think the glare off the
lake cause it.  We go camping alot in Mississippi and there is a lake
that we go to and it happens every time. Some of Kristen seizures have
lasted for 2 hours.  She has been on Flunarizine for many years and it
has not helped with seizures.  My advice would be to look further into
the possibility for seizures also.  Our doctor seems to think that the
seizures were caused from the AHC.  Although we are not sure.  Kristen
is on several medications for seizures and is doing good.

Hope this helps you.  Feel free to contact me at any time.

Yvonne

popcornkcv@... wrote:
>
> Has anyone seen Dr Andermann in Montreal for a review on your child's
> AHC diagnosis.  We have been referred there for a second opinion or
> more accurately to get more information regarding AHC.
>
> If anyone has been to McGill, please let me know if you think it was
> a worthwhile trip and any feedback on the doctor(s) who saw your
> child.
>
> Does anyone know if I can email Dr Mikati or other AHC 'experts' for
> input regarding my child?  Does AFHA have email addresses for these
> doctors?
>
> Our daughter had another major (looking attack) while we were on
> vacation yet again, the attack looked different.  She was at the lake
> edge and this just overloaded her system.  However, she was
> convulsive and jerking, her jaw closed with saliva drooling/frothing
> from her mouth.  She was over it in 20 min or so but I still called
> 911 and took a trip to the ER.  I was afraid she was having
> difficulty breathing or would aspirate.  There was no 'classical'
> hemiplegia following the attack.  She went to sleep for the night and
> the next morning had a little shakiness for the first 20 minutes then
> back to baseline.
>
> Doctor upped her flunarizine to 5mg in am/10 mg in pm (26lbs/2yrs
> old).  Does this attack sound familiar to others?  Are other kids on
> this dosage of flunarazine?
>
> Thanks again to all those who respond.  It really helps to hear
> others' experiences.
>
> Karen V.
>
> 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.org
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/

Karen,
Our daughter was diagnosed by Dr. Andermann in 1982 (at which time we first met
Lynda Burnham's family for the first time).  He might be good for confirming a
diagnosis, but as Lynda said, there really isn't much new as far as treatment
for AHC.  It might depend on how close you live to Montreal.
If you do decide to go, and if your daughter will be admitted to hospital, try
to get an agreement beforehand on how long she might be staying.  We found some
of our daughter's hospital stays to be very very lengthy: I figure she has spent
several months altogether over the years in the Montreal Neurological Hospital,
and we live about 7 hours away by car.
On the other hand, Montreal is a great place, and it's nice to have an excuse to
visit.  Dr Andermann and all the doctors we have seen there are very interested
and approachable.
Good luck
Janet Kilpatrick
-----Original Message-----
     From: popcornkcv@... <popcornkcv@...>
     To: afha@yahoogroups.com <afha@yahoogroups.com>
     Date: Saturday, August 11, 2001 9:32 AM
     Subject: [ahc] Expert Opinions


     Has anyone seen Dr Andermann in Montreal for a review on your child's
     AHC diagnosis.  We have been referred there for a second opinion or
     more accurately to get more information regarding AHC.

     If anyone has been to McGill, please let me know if you think it was
     a worthwhile trip and any feedback on the doctor(s) who saw your
     child.

     Does anyone know if I can email Dr Mikati or other AHC 'experts' for
     input regarding my child?  Does AFHA have email addresses for these
     doctors?

     Our daughter had another major (looking attack) while we were on
     vacation yet again, the attack looked different.  She was at the lake
     edge and this just overloaded her system.  However, she was
     convulsive and jerking, her jaw closed with saliva drooling/frothing
     from her mouth.  She was over it in 20 min or so but I still called
     911 and took a trip to the ER.  I was afraid she was having
     difficulty breathing or would aspirate.  There was no 'classical'
     hemiplegia following the attack.  She went to sleep for the night and
     the next morning had a little shakiness for the first 20 minutes then
     back to baseline.

     Doctor upped her flunarizine to 5mg in am/10 mg in pm (26lbs/2yrs
     old).  Does this attack sound familiar to others?  Are other kids on
     this dosage of flunarazine?


     Thanks again to all those who respond.  It really helps to hear
     others' experiences.

     Karen V.





     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.org

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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

hi, Im Ashley's father she is 12 yrs,she is now at times raising her elbow
out stright with her fist toward her face and its stiff and she cannot
control it,it comes and goes has anyone else had this happen please
respond--David


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

Hi David,
      I am Donna, my son Jayme has had this for years, He is fifteen now It
is part of the Dystonia that goes along with the AHC in some of thie kids.
It last in Jayme for a few minutes then goes away. He has it in his feet
some too. He goes for long periods without any dystonia then he will have it
frequently for days... Hope this helps. Jayme gets this in his mouth alot
too while eating........I think it is painful also....He acts like it is.
                 Donna
-----Original Message-----
From: MANEEXP@... <MANEEXP@...>
To: afha@yahoogroups.com <afha@yahoogroups.com>
Date: Monday, August 13, 2001 3:27 PM
Subject: [ahc] Re: seeing something new in my dayghter


>hi, Im Ashley's father she is 12 yrs,she is now at times raising her elbow
>out stright with her fist toward her face and its stiff and she cannot
>control it,it comes and goes has anyone else had this happen please
>respond--David
>
>
>[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.org
>
>Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>
>

Hi,
   My son Louis who is 16 also gets this,exactly as Donna described Jayme
getting them. Louis has been getting them for the past few years and he also
says they are painful. The best thing is for him to try and relax,as  it will
also affect his feet and mouth. They usually come during his episodes.

Adele


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

I haven't gotten to get on the computer much with a new baby and
all.........but it's so weird lately when I do get on the questions I wanted
to ask are right there in front of me.........about the stroller wheel
chair..........hailey is almost 5 and I might be able to squeeze 1 more year
in my regular stroller  (she is so tall though)   so I was just wondering
what people are using....and does your ins cover it  everything is so
expensive.
Thanks Mindy

Hi mindy, we have in Penna. Medicade,which covers anything over and above our
insurance,we have HOM also,Ashley is 12 and is in a pogon stroller which is
big enough for her till about 14 she is tall and works well also she has a
wheel chair that also fits her needs.Let me tell you and all others that you
must fight and fight hard for all that you have rights for,insurance
companies dont want to pay untill they are faced with hearings law cases and
someone who wont take no for an answer.Look to state reps, organizations for
specal children and fight for everything.Good luck and God Bless------David
Piersig


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

Hi, Mindy --  we got a wheelchair for Abbie when she was about 8 or 9.  She's
able to walk short distances without too much problem but we really needed
the wheelchair for long distances such as shopping at the mall or visiting a
zoo or amusement park.  Before we got it, I would have to carry her when she
got too tired and as she grew older that, of course, was very difficult for
me.  She loves her wheelchair and feels very special in it and it has been a
big help to me.  If I remember correctly, our insurance paid for about half
of it and we had to pay the rest.

Good luck.  Kathy


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

After seeing the recent emails posted, I would like to know if most
every child affected with AHC will require the use of a
wheelchair/stroller?
Our daughter Alaina (16 months) seems to have strong arm and leg
muscles, but we are told that she has low muscle tone in her trunk
area from the shoulders down.  She also is extremely flexible.
She does not stand on her own yet, and forget about walking. When we
do support her to try and allow her to stand, she always hyperextends
her lower leg (calf). It even seems her ankles and toes just do not
know what to do - her ankles go from side to side and her toes will
overlap.
We are working with a physical therapist and occupational therapist
one time a week. We also try and have her wear high, supportive shoes.

Can any of you relate to our experience? If you can relate, when did
your son/daugher start showing strength in standing and walking? I
wonder if you have any suggestions for me or the PT/OT.

Thanks in advance,
Jennifer










--- In afha@y..., KathHurl@a... wrote:
> Hi, Mindy --  we got a wheelchair for Abbie when she was about 8 or
9.  She's
> able to walk short distances without too much problem but we really
needed
> the wheelchair for long distances such as shopping at the mall or
visiting a
> zoo or amusement park.  Before we got it, I would have to carry her
when she
> got too tired and as she grew older that, of course, was very
difficult for
> me.  She loves her wheelchair and feels very special in it and it
has been a
> big help to me.  If I remember correctly, our insurance paid for
about half
> of it and we had to pay the rest.
>
> Good luck.  Kathy
>
>
> [Non-text portions of this message have been removed]

hi Jennifer, My son Ryan walked at five and a half. As a two year old the
therapist fixed us up with a walker. He loved it and he learned how to get
around by pushing with his legs even though his trunk was very floppy. This
walker was not the plastic type you would get at the toy store, but stainless
steel, with a leather sling type seat surrounded by a leather covered donut.
I remember him being very proud of himself in that thing.  Later, around
three and half  I sat him on one of those push car toys that you do buy at
the toy store, and he ended up using a variety of those till his legs just
got too long for them. That would be at about five, and considering they are
made for two year olds, he really got good use of them. When  Ryan started to
walk more   we got him a regular walker, the kind you see seniors using all
the time.  That proved to be harder on him since there where many times when
his left arm would be very tight and he couldn't hold on to the handlbars. To
cut this short I would say that Ryan stared to walk without aids or a helmet
on  when he was about 8.   If you have any questions feel free.   Hannah

My son Nick is 11 and we do not have a wheel chair or stroller for him.  I
don't think he would use either one without putting up a huge fight.  Nick
walked independently when he was 2 1/2 -- but was walking around things at 18
months.  Up until the time he walked, he was barefoot most of the time.  I
think this did more for strengthening his muscles than anything.  When he did
start to walk, the shoes he had helped with his balance, which was what he
most needed at that stage.  We did have a PT for him starting at age 2 but
after awhile she told us to just let him try to keep up with his older
brother, which is what we did.

Thankfully his really bad episodes are infrequent -- when they do occur, I
have him walk right next to me and help him that way.  Nick does understand
that sleep or rest will take the episode away and is very cooperative with
taking a break when he has an episode.  As far as now, Nick walked about 2
miles with me and the dog tonight and last Mother's Day, we took a walk
around one of the local parks that was 6 miles.  Nick did it with about 5
breaks but he did walk it all himself.  In school, his adaptive PE teacher
has him run a mile on the treadmill at least twice per week.

I guess the whole point of this is that I believe with Nick it was important
that he build up his muscles and encourage him to use them as much as
possible.  He did walk very late but he did make it.

Hi Jennifer,
My name is Sherry and my son Tom has AHC and is 22 years old.  He started
pulling himself up at about 22 months and was walking independently at about
28 months.  We had a wheelchair for him when he was 10 because he did not
seem to have a lot of endurance or stamina for malls, walks and especially
when we would vacation at the beach.  It was a relatively inexpensive one
that would fold for traveling.  It lasted about six years and we did not
replace it.  His stamina improved once he was off the seizure meds.  Tom was
not diagnosed with AHC until his late teens.  He receives OT and PT until
age 21 and also had orthodics for both feet. He no longer will wear the
inserts for his shoes but gets around fine.  Hope this is helpful.
Sherry

jennifer
   My daughter hailey started walking at age 2   she does have low muscle tone
and isn't so sturdy on her feet but i was just looking into a stroller  for
when she is in her attacks and we still have to go somewhere...she is just
getting bigger and I will not be able to carry her much longer...we do use
our regular stroller right now but she won't last in there much longer
mindy

Mindy,

Jake is 9 and can't walk long distances.  Also, he is too heavy for me
to carry now.  We have used 3 different stroller type chairs for him.
One was a Maclaren stroller which is very convenient...holds up to 100
pounds and folds up like an umbrella stroller, very lightweight.  We had
another chair which was much heavier, difficult to fold up and put in
the car, but more comfortable for him when he was down.  I forget the
brand name but I know they don't make it anymore.  We still have it but
he is growing out of it...they use it for him at school and keep it
there because it is too bulky to transport.  We recently got a Convaid
Cruiser(?).  It is also like an umbrella stroller but more sturdy.  It
is much easier to push him. It comes with attachments (all costing extra
of course!!!) which help position his head when he is really bad.  It
cost our insurance company about 2300.00 dollars.  They paid for every
cent.  The Maclaren is great for someone around Hailey's age because it
is so portable.  You can buy them at a Medical supply store but I would
definitely try to go through your insurance company first.  Get her Dr.
to write a prescription and then call your insurance company.  They may
want to send someone to you to go over different kinds of chairs...don't
let them push you into something you don't want.  My insurance company
wouldn't pay for the Maclaren, but they paid for the other 2 chairs.
The second one cost 2800.00 dollars.  I have seen the Maclaren for less
than 500.00.  A good idea is to look on the internet and also consider
buying one used if you have to pay yourself.  Disability sites like
Specialchild.com have classified ads for people wanting to buy and sell
chairs and other equipment.  Look up durable medical equipment and
specify stroller.  A wheelchair doesn't work well with Jake because the
back is too upright...he needs a slight tilt.  Sorry this was soooo
long...email me back if you have any questions.

Jake also had low muscle tone when he was younger.  He cruised around
furniture for almost a year before he started walking independently at
age 2.  He can walk and run and ride a bike with training wheels but his
attacks often come without warning so I always take his chair with us
even if he doesn't use it.  Lynn Egan gave me a great tip that really
helped Jake alot. She recommended a Big Wheel...its great for these kids
because it supports their back, helps develop their leg muscles, lets
them ride along with other kids, and they have lots of fun.

Becky

All children are going to be different.  My daughter, Jenny (14), walked
when she was 17 months.  She does periodically have the need for a
stroller/wheelchair but the majority of the time she is fine on her own.
Marcia

-----Original Message-----
From: Jennifer [mailto:jejeaja@...]
Sent: Saturday, August 18, 2001 10:38 PM
To: afha@yahoogroups.com
Subject: [ahc] Re: Stroller/Wheelchair Input


After seeing the recent emails posted, I would like to know if most
every child affected with AHC will require the use of a
wheelchair/stroller?
Our daughter Alaina (16 months) seems to have strong arm and leg
muscles, but we are told that she has low muscle tone in her trunk
area from the shoulders down.  She also is extremely flexible.
She does not stand on her own yet, and forget about walking. When we
do support her to try and allow her to stand, she always hyperextends
her lower leg (calf). It even seems her ankles and toes just do not
know what to do - her ankles go from side to side and her toes will
overlap.
We are working with a physical therapist and occupational therapist
one time a week. We also try and have her wear high, supportive shoes.

Can any of you relate to our experience? If you can relate, when did
your son/daugher start showing strength in standing and walking? I
wonder if you have any suggestions for me or the PT/OT.

Thanks in advance,
Jennifer










--- In afha@y..., KathHurl@a... wrote:
> Hi, Mindy --  we got a wheelchair for Abbie when she was about 8 or
9.  She's
> able to walk short distances without too much problem but we really
needed
> the wheelchair for long distances such as shopping at the mall or
visiting a
> zoo or amusement park.  Before we got it, I would have to carry her
when she
> got too tired and as she grew older that, of course, was very
difficult for
> me.  She loves her wheelchair and feels very special in it and it
has been a
> big help to me.  If I remember correctly, our insurance paid for
about half
> of it and we had to pay the rest.
>
> Good luck.  Kathy
>
>
> [Non-text portions of this message have been removed]



Yahoo! Groups Sponsor

ADVERTISEMENT

<http://rd.yahoo.com/M=211550.1562866.3121829.1261774/D=egroupweb/S=1705
061589:HM/A=763352/R=0/*http://www.classmates.com/index.tf?s=5085>

<http://us.adserver.yahoo.com/l?M=211550.1562866.3121829.1261774/D=egrou
pmail/S=1705061589:HM/A=763352/rand=675906512>

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.org

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .




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

Hi, my 10 year old daughter, Brooke has been on Flunarizine since age 2.  I
remember that a couple of AHC children are on Neurotin.  For those of you
who have children on Neurotin or if it was ever tried on your child (what
were your experiences with this drug), can you describe the types of
episodes your child has and did the episodes get better or worse while on
this drug.  Also, are there any children both on Flunarizine and Neurotin??
  We recently went to our neurologist and he mentioned this drug so I wanted
to ask parents about their experiences.  Are there any children that have
ever tried or are on either of the two migrane drugs - Tryptans or
Imitrex??  In addition, I know that there have been many inquiries about
Ritalin.  Has anyone tried it with their child?  Are there any children who
are on both Flunarizine and Ritalin.  I would appreciate any information
you can provide me with.

I hope all your children are doing well and wish them a great school year.

Thank you.

Dana Tasi

Why are children with AHC on Ritalin?  Is it due to attention issues or is
their some link with the dopamine uptake?

I have a 2yr old with AHC and a 7 yr old with ADHD.  It is very interesting
when I hear my 7yr old's psychopharm asking us to try something like
Neurontin for ADHD when I was only familiar with it for seizures.  It is even
more interesting to hear AHC kids being prescribed Ritalin.  I wonder what
the neurotransmitter connections are.

We have not actually tried the neurontin or ritalin for AHC.  I did see an
article (Seoul Korea) talking about the benefits of Flunarizine and Lamictal
for AHC kids.  My daughter happens to be on both now because the Lamictal is
left over from previous misdiagnosis of epilepsy.  Has anyone else been put
on this combo?

Thanks

Dana,
        My daughter Amanda in on neurotin and has been for 2 years.  We are on
it to help with behavior and also seizure like episodes.  We have seen no
ill-effects at all.  The neurotin work with Carbatrol to help stabilize her
behavior, we have seen alot of aggession, anger and unpredictable times. Feel
free to e-mail me if you have any questions.


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

My daughter, Jenny age 14, has taken Imitrex for headaches but as she
got older found that Advil almost works as well along with using
Migraine Ice (a gel pad that sticks to your forehead and stays cool for
up to 4 hours).  She was also on Ritalin for two short periods of time.
We only saw bad changes in behavior and an inability to sleep so we
discontinued it.  I know it is different for all children.  I hope
something works for Brooke.
Marcia Perkins

-----Original Message-----
From: Dana Tasi [mailto:dtasi@...]
Sent: Monday, August 27, 2001 6:21 AM
To: afha@yahoogroups.com
Subject: [ahc] AHC Medication


Hi, my 10 year old daughter, Brooke has been on Flunarizine since age 2.
I
remember that a couple of AHC children are on Neurotin.  For those of
you
who have children on Neurotin or if it was ever tried on your child
(what
were your experiences with this drug), can you describe the types of
episodes your child has and did the episodes get better or worse while
on
this drug.  Also, are there any children both on Flunarizine and
Neurotin??
We recently went to our neurologist and he mentioned this drug so I
wanted
to ask parents about their experiences.  Are there any children that
have
ever tried or are on either of the two migrane drugs - Tryptans or
Imitrex??  In addition, I know that there have been many inquiries about
Ritalin.  Has anyone tried it with their child?  Are there any children
who
are on both Flunarizine and Ritalin.  I would appreciate any information
you can provide me with.

I hope all your children are doing well and wish them a great school
year.

Thank you.

Dana Tasi



Yahoo! Groups Sponsor

ADVERTISEMENT

<http://rd.yahoo.com/M=211550.1562866.3121829.1261774/D=egroupweb/S=1705
061589:HM/A=763352/R=0/*http://www.classmates.com/index.tf?s=5085>

<http://us.adserver.yahoo.com/l?M=211550.1562866.3121829.1261774/D=egrou
pmail/S=1705061589:HM/A=763352/rand=184307418>

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.org

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .




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

well it is official....we are going to Disney Land....

My mom and dad have decided that we will be driving down from Hamilton
Ontario Canada threw the states....we will be leaving on October 7th...and i
have no idea when we are coming back....no we are not going threw
Make-A-Wish...this is just a trip my parents want us to take....

anyone have any suggestions while we are there?....what kind of rides might
be good?....how accessible is the place?....oh yeah TJ is 9 years old

Wendy

Wendy,
We went to Disney World and it was totally accessible.  If you child
isn't always in a wheelchair put him in one anyway for the parks.  You
are able to go to the front of all the lines which allows you to do so
much more in the time you have there.  We also started each day early in
the morning because the parks just seem to get busier as the day goes
on.  Have a great trip, take lots of pictures and enjoy!
Marcia

-----Original Message-----
From: lyxanna{TZ} [mailto:lyxannatz@...]
Sent: Monday, August 27, 2001 2:38 PM
To: afha@yahoogroups.com
Subject: [ahc] disney


well it is official....we are going to Disney Land....

My mom and dad have decided that we will be driving down from Hamilton
Ontario Canada threw the states....we will be leaving on October
7th...and i
have no idea when we are coming back....no we are not going threw
Make-A-Wish...this is just a trip my parents want us to take....

anyone have any suggestions while we are there?....what kind of rides
might
be good?....how accessible is the place?....oh yeah TJ is 9 years old

Wendy




Yahoo! Groups Sponsor

ADVERTISEMENT

<http://rd.yahoo.com/M=211550.1562866.3121829.1261774/D=egroupweb/S=1705
061589:HM/A=763352/R=0/*http://www.classmates.com/index.tf?s=5085>

<http://us.adserver.yahoo.com/l?M=211550.1562866.3121829.1261774/D=egrou
pmail/S=1705061589:HM/A=763352/rand=939896477>

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.org

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .




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