Has anyone had success with the vagus nerve stimulator with AHC and/or
seizures in our group?

karen venti


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

I remember when we started my daughter on the flunarazine she did have some
tremoring and som odd eye movement where one eye moved out of sync from the
other.  She was diagnosed with AHC at 2yrs and started on flunarazine and taken
off some anti seizures cold turkey and weaned slowly of phenobarb.  So symptoms
were from both processes.  The tremors I think were from flunar. and did
subside.  She did start having these grand mal seizures however, and her
flunarazine was ramped up pretty quickly without too much negative side effects
but my
memory isn't great for back then,

hope this  helps

karen and addie



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

Hi, this is Dave Ashleys Dad,she is 16,some ofthis inofrmation is new to
me,What is Hypothyroidism,also these drug,Synthroid or Lexoxyl,what do they do
to any of the symptoms of AHC,please indorm us ===thanksa --Dave and  Ash


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

Based on what my neurologist had informed me. Flunarizine is a slow acting
medicine that increases gradually. I was told that it took 5-6 weeks to see if
it will be favorable. I recall that perfectly because my son had and attack a
few days after starting it and I wanted results fast. To my luck I was informed
to wait a few weeks. Good luck, thelma

oren_graiver <oren_graiver@...> wrote:
Hi,

My son was diagnozed as suspected of having AHC a week ago, we
started giving him Flunarizine 3 days ago currently 2.5mg (half
capsule), we had an episode this morning.
Can sombody tell me how long is it until we can see if the
Flunarizine has any affect?

Best regards,

Oren Graiver





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

Hello thelma here, ,my son mario who's 3 was diagnosed with hypothyroidism. He's
been on it for about two years. He is also taking Levoxyl. Personally, I have
never had any problems with it. It's like taking a cup of water for my child. I
see no difference. My child is not hyper, he's very mellow so his energy is the
same. Although most children suppose to be more energetic. He does glow more.
Softer shinny hair. Nice nails and so on. I have never missed a dose nor been
late so I don't know how he response without it. However, I do think in my
opinion that Mario is not as sensitive to the cold as before. Hopefully your
child response favorable to it. Every child body chemistry is different. Best of
luck, thelma

joanna_emmons <joanna_emmons@...> wrote:
Hello everybody!  I recently wrote to get opinions about growth
hormone therapy.  As it turns out, the endocrinologist judged that
Cameron's growth hormone level irregularity did not warrant
intervention.  However, he did order bloodwork to "rule out" the
possibility that Cameron might have a thyroid problem.  Surprise!
The results are in, and we have started Cam on Levoxyl to treat the
thyroid imbalance.  His underactive thyroid has contributed to his
low stature, intolerance of cold, learning difficulties, etc.
Meanwhile, he has already been diagnosed with AHC and a mitochondrial
complex 3 disorder.  Do any of you have any experience with thyroid
problems or with Levoxyl??

Thanks very much, Joanna





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

Hi Joanna!  Ashlynn, my daughter, is taking Synthroid for
hypothyroidism.  I think that is the same as Levoxyl.  Ashlynn, 2 1/2
years old, was diagnosed last January with hypothyroidism.  None of her
regular doctors could believe it; they thought all of the symptoms were
AHC related.  Dr. Swoboda actually had me post my experience on the
group so that other parents would know to look out for it also.  It took
an intern when Ashlynn was hospitalized for pneumonia to question it. I
could not believe such a difference it created when she was first
started on the medication in a short time.  We have seen such a change
in her hair growth, skin, and energy level. I can always tell when she
is in need of an increase of Synthroid.

Feel free to ask any other questions.  I know that there is at least one
other child that has hypothyroidism and AHC.

Angela Sparks:0)

-----Original Message-----
From: joanna_emmons [mailto:joanna_emmons@...]
Sent: Monday, March 07, 2005 4:17 PM
To: afha@yahoogroups.com
Subject: [ahc] thyroid-new additional diagnosis



Hello everybody!  I recently wrote to get opinions about growth
hormone therapy.  As it turns out, the endocrinologist judged that
Cameron's growth hormone level irregularity did not warrant
intervention.  However, he did order bloodwork to "rule out" the
possibility that Cameron might have a thyroid problem.  Surprise!
The results are in, and we have started Cam on Levoxyl to treat the
thyroid imbalance.  His underactive thyroid has contributed to his
low stature, intolerance of cold, learning difficulties, etc.
Meanwhile, he has already been diagnosed with AHC and a mitochondrial
complex 3 disorder.  Do any of you have any experience with thyroid
problems or with Levoxyl??

Thanks very much, Joanna






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Ashlynn, 2 1/2 years old, was started on Flunarizine when she was 11
months old.  We started out with 5 mg once a week and saw no change in
that.  We then changed it to 5 mg three times a week.  That seemed to
help until she was right at 2 years old and we had to increase to 5 mg
every day.  We increased it again last month to 5 mg every day and then
another 5 mg twice a week.  Ashlynn has had tremors with her paralysis
since March of last year.  She no longer has the eye nystigmus though.
The trembling seems to hurt less also.

It will take a few weeks to see any real effects of Flunarizine, so keep
that in mind also.

Angela Sparks :0)

-----Original Message-----
From: janikay1964 [mailto:janikay1964@...]
Sent: Monday, March 07, 2005 7:57 PM
To: afha@yahoogroups.com
Subject: [ahc] Flunarizine for 2 y.o.?



  Hello,

   My daughter ( 2 y.o.)has also started taking flunarizine, but 5 mg.
( 2.5 twice a day). she just started 3 days ago while having an
episode-

good thing was after taking the drug, her episode ( which normally
runs from 3-5 days)lasted only 2 days this time- we don't know if
this was because of flunarizine because we have to stop it for a
while because she started having tremors- We're consulting her
Neurologist again- probably a lower dose is needed.

Has anybody had experience with flunarizine with a child younger than
2 y.o.? and what was the effective dose?

Thanks

John



--- In afha@yahoogroups.com, "oren_graiver" <oren_graiver@y...> wrote:
>
> Hi,
>
> My son was diagnozed as suspected of having AHC a week ago, we
> started giving him Flunarizine 3 days ago currently 2.5mg (half
> capsule), we had an episode this morning.
> Can sombody tell me how long is it until we can see if the
> Flunarizine has any affect?
>
> Best regards,
>
> Oren Graiver






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Hello.
This is Hong, Hannah's mother. Hannah started her flunarizine in
December the 29th. We started her with 2.5 mg twice a day, then
increase to 5 mg twice a day. She is doing good with this dose so
far. She only had one episode which was milder and short duration
only weak arm for a few hours. She used to have weak arm for off and
on several days in a roll. I am so thankful and glad that it helps
her so much. we bought the blood pressure machine to check her blood
pressure (b/c the mechanism of action of this drug was calcium
channel blocker which used to hypertension in this country). So far
she was o.k.
Hannah is 2 1/2 now. you can email me at hongbrod@...
Hong




-- In afha@yahoogroups.com, "janikay1964" <janikay1964@y...> wrote:
>
>  Hello,
>
>   My daughter ( 2 y.o.)has also started taking flunarizine, but 5
mg.
> ( 2.5 twice a day). she just started 3 days ago while having an
> episode-
>
> good thing was after taking the drug, her episode ( which normally
> runs from 3-5 days)lasted only 2 days this time- we don't know if
> this was because of flunarizine because we have to stop it for a
> while because she started having tremors- We're consulting her
> Neurologist again- probably a lower dose is needed.
>
> Has anybody had experience with flunarizine with a child younger
than
> 2 y.o.? and what was the effective dose?
>
> Thanks
>
> John
>
>
>
> --- In afha@yahoogroups.com, "oren_graiver" <oren_graiver@y...>
wrote:
> >
> > Hi,
> >
> > My son was diagnozed as suspected of having AHC a week ago, we
> > started giving him Flunarizine 3 days ago currently 2.5mg (half
> > capsule), we had an episode this morning.
> > Can sombody tell me how long is it until we can see if the
> > Flunarizine has any affect?
> >
> > Best regards,
> >
> > Oren Graiver

Hello,

   My daughter ( 2 y.o.)has also started taking flunarizine, but 5 mg.
( 2.5 twice a day). she just started 3 days ago while having an
episode-

good thing was after taking the drug, her episode ( which normally
runs from 3-5 days)lasted only 2 days this time- we don't know if
this was because of flunarizine because we have to stop it for a
while because she started having tremors- We're consulting her
Neurologist again- probably a lower dose is needed.

Has anybody had experience with flunarizine with a child younger than
2 y.o.? and what was the effective dose?

Thanks

John



--- In afha@yahoogroups.com, "oren_graiver" <oren_graiver@y...> wrote:
>
> Hi,
>
> My son was diagnozed as suspected of having AHC a week ago, we
> started giving him Flunarizine 3 days ago currently 2.5mg (half
> capsule), we had an episode this morning.
> Can sombody tell me how long is it until we can see if the
> Flunarizine has any affect?
>
> Best regards,
>
> Oren Graiver

Hi Joanna,

When Addie was very young we had her thyroid tested and her level was normal.
  Thyroid disease runs in our family and I have taken synthroid or levoxyl
(generic) for 20 years.  My doctor found a small nodule and treated it with
medication and I never had any symptoms from it.  However I did have symptoms
initially when I started the synthroid.  So you may see some very subtle but
noticable signs of the medication.  I ended up at a level too high and I would
jump
every time someone said hello, my legs would twitch when laying down, and my
heart would race.  Once the levels were lowered all this went away.

It is good you caught this!

take care-karen v




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

Regarding CoQ10 enzyme, my daughter takes 100mg/day of the chewable wafer
from Vitaline.  This particular brand's product is supposed to cross the
blood/brain barrier unlike other brands.  The first link below is a Vitaline
site that
lists alot if not all the recent research on coq10 and its benefits.  I buy
mine from a homeopath down the street but our local health food store carries
this line now also.  I think it helped Addie's gate and tremors alot when she
was younger.  She has been on this for 3 years now.  It is costly.  These
recent studies suggest higher doses can have very positive effects but we
haven't
tried increasing her dose.  We are looking for ways to increase her endurance
b/c this after a certain period of time, she is tired, spent, and if she
doesn't come home from school or rest she has seizure.

Does anyone have any success with endurance?  Has anyone ever heard of using
growth hormone to increase endurance and energy?  COQ10 is supposed to help
mitochondria and basic energy source of our cells, so maybe this would help.

Hope this info is helpful.

karen venti


http://www.integrativeinc.com/portal/alias__vitalinecoq10/lang__en-US/tabID__354\
9/DesktopDefault.aspx

http://store.yahoo.com/epic4health/parsandcoq.html


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

Hello everybody!  I recently wrote to get opinions about growth
hormone therapy.  As it turns out, the endocrinologist judged that
Cameron's growth hormone level irregularity did not warrant
intervention.  However, he did order bloodwork to "rule out" the
possibility that Cameron might have a thyroid problem.  Surprise!
The results are in, and we have started Cam on Levoxyl to treat the
thyroid imbalance.  His underactive thyroid has contributed to his
low stature, intolerance of cold, learning difficulties, etc.
Meanwhile, he has already been diagnosed with AHC and a mitochondrial
complex 3 disorder.  Do any of you have any experience with thyroid
problems or with Levoxyl??

Thanks very much, Joanna

Cameron takes CoQ10 twice a day.  I can double check the miligrams
when I get home, but it seems to be the standard size chewable
tablet.  We have not seen any side effects, and we believe that it is
helping him with energy, although we do not have any hard evidence of
this.  He takes so many things that we are not sure which is doing
what.  He does not take Flunarazine though.  The only trouble we have
had with the CoQ10 is in getting insurance to cover it, apparently
there are several brands to choose from and some get covered, some do
not.  A couple of times we have bought it outright, but if you have
an experienced and patient pharmacist you should be able to get it
covered.  Apparently because it is an over the counter supplment that
some people take for energy/performance/memory improvements, the
insurance companies don't tend to think of it as part of a
treatment.  Hope this helps!

Joanna, mom to Cam, age 6










--- In afha@yahoogroups.com, "oren_graiver" <oren_graiver@y...> wrote:
>
> Hi,
>
> My son was diagnozed as suspected of having AHC a week ago, we
> started giving him Flunarizine 3 days ago currently 2.5mg (half
> capsule), we had an episode this morning.
> Can sombody tell me how long is it until we can see if the
> Flunarizine has any affect?
>
> Best regards,
>
> Oren Graiver

Oren-

While I have no experience with CoQ10, some others on the board may be able
to provide some insight.

Good luck.

Vicky

-----Original Message-----
From: Oren Graiver [mailto:oren_graiver@...]
Sent: Monday, March 07, 2005 1:32 PM
To: afha@yahoogroups.com
Subject: RE: [ahc] Affect of Flunarizine


Hi Vicky,

Thank you for your rapid response.
We were suggested to add CoQ10 as supporting vitamin to the treatment.
Our son is 3.5 YO, do you have any information about the affect and
effectivenes of CoQ10.
Can CoQ10 cause any damage in the long term, what is the recommended dosage.

Thanks,

Oren

Vicky Platt <vaplatt@...> wrote:
Oren-

Flunarizine has a very long "half-life". That's the amount of time it takes
for a medication to be at its therapeutic level. I believe I am correct in
saying that flunarizine's half-life if 19 days. At the very least, it is
more than 3 days. Good luck.

Vicky Platt
Mt. Prospect, Illinois

-----Original Message-----
From: oren_graiver [mailto:oren_graiver@...]
Sent: Monday, March 07, 2005 9:00 AM
To: afha@yahoogroups.com
Subject: [ahc] Affect of Flunarizine


Hi,

My son was diagnozed as suspected of having AHC a week ago, we
started giving him Flunarizine 3 days ago currently 2.5mg (half
capsule), we had an episode this morning.
Can sombody tell me how long is it until we can see if the
Flunarizine has any affect?

Best regards,

Oren Graiver





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



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Hi Vicky,

Thank you for your rapid response.
We were suggested to add CoQ10 as supporting vitamin to the treatment.
Our son is 3.5 YO, do you have any information about the affect and effectivenes
of CoQ10.
Can CoQ10 cause any damage in the long term, what is the recommended dosage.

Thanks,

Oren

Vicky Platt <vaplatt@...> wrote:
Oren-

Flunarizine has a very long “half-life”. That’s the amount of time it takes
for a medication to be at its therapeutic level. I believe I am correct in
saying that flunarizine’s half-life if 19 days. At the very least, it is
more than 3 days. Good luck.

Vicky Platt
Mt. Prospect, Illinois

-----Original Message-----
From: oren_graiver [mailto:oren_graiver@...]
Sent: Monday, March 07, 2005 9:00 AM
To: afha@yahoogroups.com
Subject: [ahc] Affect of Flunarizine


Hi,

My son was diagnozed as suspected of having AHC a week ago, we
started giving him Flunarizine 3 days ago currently 2.5mg (half
capsule), we had an episode this morning.
Can sombody tell me how long is it until we can see if the
Flunarizine has any affect?

Best regards,

Oren Graiver





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

Oren-

Flunarizine has a very long “half-life”. That’s the amount of time it takes
for a medication to be at its therapeutic level. I believe I am correct in
saying that flunarizine’s half-life if 19 days. At the very least, it is
more than 3 days. Good luck.

Vicky Platt
Mt. Prospect, Illinois

-----Original Message-----
From: oren_graiver [mailto:oren_graiver@...]
Sent: Monday, March 07, 2005 9:00 AM
To: afha@yahoogroups.com
Subject: [ahc] Affect of Flunarizine


Hi,

My son was diagnozed as suspected of having AHC a week ago, we
started giving him Flunarizine 3 days ago currently 2.5mg (half
capsule), we had an episode this morning.
Can sombody tell me how long is it until we can see if the
Flunarizine has any affect?

Best regards,

Oren Graiver





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

Hi,

My son was diagnozed as suspected of having AHC a week ago, we
started giving him Flunarizine 3 days ago currently 2.5mg (half
capsule), we had an episode this morning.
Can sombody tell me how long is it until we can see if the
Flunarizine has any affect?

Best regards,

Oren Graiver

My 13 year old son started at about that age. I never thought it would
happen but it did. The same went for speech. Everything was late but it will
likely happen. He was cruising furniture for the longest time and it seemed very
labored and difficult so I had  only to hope and listen to people like the
Hurley's whose daughter Abby was 2 year's older and doing things like  walking.

It was around that age and earlier when we first met up in Boston at
Children's Hospital. I just recently looked at videos of that time and it was
shocking. They seemed so far behind and Jimmy seemed light years behind Abby. 
The
progress seems to come in spurts and it really is only in seeing videos that
the progress can be appreciated.

Videos from 2 to 2 1/2 yrs are me encouraging and trying to get him to get
his leg over the play pen to get out and then try to climb back in. He's not
talking in them except Dada and stuff once in a while.

He just got named "super tagger" in this past Friday's notes from school.  He
tagged out 9 kids in P.E. I'm sure its generous and the kids are 5th graders
who are fun and cool anyway. They might have allowed some tags but so what.
It's  funny that I just got the school note and then got on to copy music and
checked  emails for the heck of it.

Keep the faith. The Hurley's and Dr. Mikati told us that ages ago and it is
so true. He runs with his arms too straight down for my taste and its erratic
and he got paralyzed last night when we went to watch sparring at the boxing
club where he is my exercise partner ( mostly pestering me during my minute
rests) so it may not disappear but it definitely gets better and more hopeful
no  matter how much you may think it'll never happen.

Dennis


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

Hi there,

   Our Pauline ( 2.2 y.o.) has not yet walked independently either,
but she already started to stand and tries to walk with support. She
has small feet that she tends to pronate ( draw inward) and therefore
the orthopedic doctor prescribed her a foot orthotic to hold the feet
in place.

   hope this helps

John



--- In afha@yahoogroups.com, thelma salcedo <dat1grl77@y...> wrote:
>
> Mario who will be 3 1/2 in May is still not walking. He received a
walker about five months ago and refuses to use it. A walker really
benefits children. Mario has a pretty bad gait as well, he wears
braces also. He just recently is able to stand alone for about a
minute. He began physical and occupational theray when he was one.
> Hopes this gives you an idea how different children range from
walking. thelma:)
>
>
>
> ---------------------------------
> Celebrate Yahoo!'s 10th Birthday!
>  Yahoo! Netrospective: 100 Moments of the Web
>
> [Non-text portions of this message have been removed]

Mario who will be 3 1/2 in May is still not walking. He received a walker about
five months ago and refuses to use it. A walker really benefits children. Mario
has a pretty bad gait as well, he wears braces also. He just recently is able to
stand alone for about a minute. He began physical and occupational theray when
he was one.
Hopes this gives you an idea how different children range from walking. thelma:)



---------------------------------
Celebrate Yahoo!'s 10th Birthday!
  Yahoo! Netrospective: 100 Moments of the Web

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

Cameron is 6 1/2 and he is still not walking independently.  He is
getting MUCH better at walking with less and less support though---
holding hands on either side works well for us.  He has also recently
discovered that he loves using the treadmill at physical therapy, and
that is helping him with his gait.

Joanna




--- In afha@yahoogroups.com, Rebecca Bushell <bushmar17@y...> wrote:
> Our son is 3 1/2 years old with ahc.  He is still not walking
independantly.  What ages did your children start to walk without any
help.  Russell and Rebecca (Vic, Aust)
>
>
>
> ---------------------------------
> Find local movie times and trailers on Yahoo! Movies.
>
>
> [Non-text portions of this message have been removed]

Rebecca, our daughter, Jocelyn, did not start walking independently until she
was 3 1/2, almost 4 yrs old.  She did use a Kaye walker to help her until she
was ready.  It gave her independence and she loved it!
Heather, J. and Jocelyn (6 1/2 yrs)
   ----- Original Message -----
   From: Rebecca Bushell
   To: afha@yahoogroups.com
   Sent: Friday, March 04, 2005 12:06 AM
   Subject: [ahc] independant walking


   Our son is 3 1/2 years old with ahc.  He is still not walking independantly. 
What ages did your children start to walk without any help.  Russell and Rebecca
(Vic, Aust)



   ---------------------------------
   Find local movie times and trailers on Yahoo! Movies.


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



   Send a mail to the AHC community :
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[Non-text portions of this message have been removed]

Rebecca-

My 3 year-old daughter started to walk independently when she was 2 ?. She
just turned 3 in February. She has worn SMOs, an ankle brace, for the last
year to prevent her feet from turning inward. She has also had physical
therapy since she was 4 months old.

We just started Emma in Equine Assisted Therapy, physical therapy on
horseback. Our therapists said that she would greatly benefit from the
rhythm of the horse and we should see improvement in her walking and speech.
Maybe this is something for your son as well.

Good luck.

Vicky Platt
Mt. Prospect, Illinois

-----Original Message-----
From: Rebecca Bushell [mailto:bushmar17@...]
Sent: Thursday, March 03, 2005 11:06 PM
To: afha@yahoogroups.com
Subject: [ahc] independant walking

Our son is 3 1/2 years old with ahc.  He is still not walking independantly.
What ages did your children start to walk without any help.  Russell and
Rebecca (Vic, Aust)



---------------------------------
Find local movie times and trailers on Yahoo! Movies.


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



Send a mail to the AHC community :
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[Non-text portions of this message have been removed]

Our daughter started walking independently at about 1.5 years old.  By 2 her
gait had narrowed more and she was much steadier.  Her gait would widen as she
got closer to an episode which seemed to be every 3-6 weeks.

karen and addie (5.5 yrs old)


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

Hi,
Alaina started walking independently the week of her 4th birthday.
She was very slow and awkward at first (similar to babies when they first
start walking) and slowly got stronger.
At this point, she can walk pretty fast, and is stronger on her feet.  She
has a bit of a gait when she walks and because of her low muscle tone, her
feet go inwards.  Because of that, she wears ankle braces to support and
position her foot and ankle.
She does not run, but, I think this will come in time.
Hope this helps.

Take care,
Jennifer (mom to Alaina, 4/7/00)


----- Original Message -----
From: "Rebecca Bushell" <bushmar17@...>
To: <afha@yahoogroups.com>
Sent: Thursday, March 03, 2005 11:06 PM
Subject: [ahc] independant walking


>
> Our son is 3 1/2 years old with ahc.  He is still not walking
independantly.  What ages did your children start to walk without any help.
Russell and Rebecca (Vic, Aust)
>
>
>
> ---------------------------------
> Find local movie times and trailers on Yahoo! Movies.
>
>
> [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
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>
> Link to the URL :
>   http://groups.yahoo.com/group/afha
> AHC Website :
>   http://www.afha.org
> Yahoo! Groups Links
>
>
>
>
>
>
>

Hi Rebecca,

Joel (almost 3) started walking independently at about 17 mths old -
although his balance is very ordinary and his gait just isn't right.  All
kids are different, your son will get there - we used to think it was also a
confidence/fear thing.  As Joel's fear increases - he is less willing to
walk during episodes (I think because he has been falling harder and hurting
himself more).

Have you been in touch with other families in Australia?  How many families
in Australia access this site?? We have been in touch with Cassie and Gus
from Coffs Harbour, Narelle and Keely from Melbourne and Glenda and Laura
from Melbourne.  We are heading to Sydney in May and hoping to catch up with
Glenda and Laura, Cassie and Gus, and I intend on calling Narelle and Keely
to see if they can make it.  If you are interested, let me know.

Good luck,

regards

Brenda and Joel (NSW, Aust)
----- Original Message -----
From: "Rebecca Bushell" <bushmar17@...>
To: <afha@yahoogroups.com>
Sent: Friday, March 04, 2005 4:06 PM
Subject: [ahc] independant walking


> Our son is 3 1/2 years old with ahc.  He is still not walking
independantly.  What ages did your children start to walk without any help.
Russell and Rebecca (Vic, Aust)
>
>
>
> ---------------------------------
> Find local movie times and trailers on Yahoo! Movies.
>
>
> [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
> Yahoo! Groups Links
>
>
>
>
>

Hi Rebecca,
Are you new to the group?
Whereabouts in Victoria do you live?
I live in Mitcham, Victoria.
My daughter, Laura, has just turned 18.  She didn't start walking until she was
3.

Best wishes,
Glenda.
   ----- Original Message -----
   From: Rebecca Bushell
   To: afha@yahoogroups.com
   Sent: Friday, March 04, 2005 4:06 PM
   Subject: [ahc] independant walking


   Our son is 3 1/2 years old with ahc.  He is still not walking independantly. 
What ages did your children start to walk without any help.  Russell and Rebecca
(Vic, Aust)



   ---------------------------------
   Find local movie times and trailers on Yahoo! Movies.


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

Our son is 3 1/2 years old with ahc.  He is still not walking independantly. 
What ages did your children start to walk without any help.  Russell and Rebecca
(Vic, Aust)



---------------------------------
Find local movie times and trailers on Yahoo! Movies.


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

I understand the feeling of loss for my little girl too, My Emily is getting
so big I don't know how to handle it sometimes..But like everything with her
I go slow and watch and learn  it usually works out in time.

The hormone thing has shown up with extreme personality/mood swings, there
are days when she cries because she misses her friends from NY and then
other days when she is so quiet and brooding, others which is the majority
when she doesn't thing of anything but who she can call on the phone, email,
or what is on TV so she can fight with her sister about who has control of
the remote.  I think a lot of this stuff is very normal for this age, and
the "Special needs" part, comes in how to explain so she knows what is
happening to her, teaching her to deal with the changes, and feeling
responsible to care for herself more, and depend on others a little less as
time goes on.  Emily was much more involved as an infant with almost
constant episodes, and every week leading up to a full body episode for at
least a day or two.  now she has had minimal full body episodes...once a
month for a day in and out....and less loss of use of her body parts each
year.  We are hopeful that it will continue and she will continue to get
physically stronger,,Her education and learning delay has not been improving
at the same pace...she seems to hit these plateau in her schooling and it
takes some real focus to get her past that place..but she is a hard worker,
and I know she will do the best she can.

You mentioned Asperger's  isn't that a type of autism?  My neighbor has a
little girl that plays with Emily that has that also, She seems very high
functioning, and just a little ...over focused.....on things, I just figured
she was "perseverate" like Emily.  Emily gets a task in mind,,,for example
calling our niece for her birthday...she will think about it three weeks
before the date, and she will talk about it with all her friends or at least
make mention of it, every day until the day the call is made, then she will
hang up the phone and say something like well now we have to remember to
call Nana her birthday is next month....and she won't even talk about her
phone call to my niece....so her behavior just doesn't flow the way you
would expect it to..

We used a lot of behavior modification when she was younger, hand over hand,
and controlled tasks and environment, and now she seems to follow a lot of
the same systems she established at a younger time...routines I like to call
them...she also loves the independence it gives her to be responsible for
her own list of things and planning what that list is, is very important to
her also.  She is planning her birthday party...two months from now, and she
types a list in the computer, puts there addresses and phone numbers all
there so she can print them and use the info for labels, for invitations,
thank you's...etc.. and she is starting to develop a list of the games she
wants to play at the party, and the gifts she wants, and the gifts she wants
to put in the loot bags....so she is busy planning and developing....
well write back anytime,
lee

   _____

From: aztobkkmorris [mailto:camrn1@...]
Sent: Tuesday, March 01, 2005 11:29 PM
To: afha@yahoogroups.com
Subject: [ahc] Re: Hi there



Sorry this took so long! I forget to check this website.  I will do
more often.  As far as your questions from this last note.  The
Tsunami really had no effect on them. Fortunately both girls have
very mild symptoms - and they usuallu present when they are over
tired or over stressed.

Haley, who is 13, is in the middle of the hormone crazys. What
happened to my sweet little girl :)

Croline has some OCD type behavior as well - she is 10 - some
Asperger's type behavior too, but not diagnosed with either?
Caroline is more of my behavior challenge, but she seems to be
maturing a bit for her, too.

Bothe girls are onmeds for ADD type behavior.  It seems to help the
girls each in different ways, interestingly enough.

As far as your question re: the weather - we have not lived in a
cold climate since 1996 so it would be hard to assess that issue.  I
see not change when we are back in Chicago during the winter, but
then we are there only for brief periods of time.

Write when you have a chance,
Chris

--- In afha@yahoogroups.com, "lee" <leesofia@s...> wrote:
> hi
> Welcome back, I have Emily she is 12 and is doing better now that
we moved
> to warmer temperature of SW Florida.  How have you and your girls
been doing
> we have been seeing some intense "stuff" from the Tsunami that
came through
> there, are you in that area?  Did you notice any decrease in
episode
> activity, or intensity when you moved?? Actually was Phoenix warm
also, We
> have noticed a tremendous improvement in her activity level.  We
have gone
> through phases of behavior issues, we mostly go with Behavior
Modification
> techniques, and pre planned scheduling to combat some minor OCD
type things,
> mostly we try to work out one issue at a time.  I guess we have
been lucky
> she responds pretty well to that...Patience, lots of
Patience..they are at
> that crummy age pre-teen, hormones are crazy, mood swings, moon
phases what
> ever cycle they follow is still a mystery.
> lee
>
>   _____
>
> From: aztobkkmorris [mailto:camrn1@h...]
> Sent: Thursday, January 06, 2005 12:47 AM
> To: afha@yahoogroups.com
> Subject: [ahc] Hi there
>
>
>
> I am Chris Morris, parent of Haley (13) and Caroline (10).  Both
> girls have AHC, and I am just reconnecting with everyone after a
> year or so.  We moved from Phoenix AZ in Sept. 03 to Bangkok,
> Thailand.  I was wondering if anyone knows of any kids here in
> Southeast Asia with AHC.
>
> Haley and Caroline are doing well - medically they are both very
> stable and healthy, and the AHC episodes are very sporadic and
> minimal.  We are now primarily focusing on education and behavior
> issues. Behavior especially with Caroline.  Would be willing to
> share experiences - insight with anyone interested.
>
> Thanks,
> Chris Morris
>
>
>
>
>
> 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
>
>
>
>   _____
>
> Yahoo! Groups Links
>
>
> *      To visit your group on the web, go to:
> http://groups.yahoo.com/group/afha/
>
>
> *      To unsubscribe from this group, send an email to:
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> <mailto:afha-unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
>
> *      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]





Send a mail to the AHC community :
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[Non-text portions of this message have been removed]

Sorry this took so long! I forget to check this website.  I will do
more often.  As far as your questions from this last note.  The
Tsunami really had no effect on them. Fortunately both girls have
very mild symptoms - and they usuallu present when they are over
tired or over stressed.

Haley, who is 13, is in the middle of the hormone crazys. What
happened to my sweet little girl :)

Croline has some OCD type behavior as well - she is 10 - some
Asperger's type behavior too, but not diagnosed with either?
Caroline is more of my behavior challenge, but she seems to be
maturing a bit for her, too.

Bothe girls are onmeds for ADD type behavior.  It seems to help the
girls each in different ways, interestingly enough.

As far as your question re: the weather - we have not lived in a
cold climate since 1996 so it would be hard to assess that issue.  I
see not change when we are back in Chicago during the winter, but
then we are there only for brief periods of time.

Write when you have a chance,
Chris

--- In afha@yahoogroups.com, "lee" <leesofia@s...> wrote:
> hi
> Welcome back, I have Emily she is 12 and is doing better now that
we moved
> to warmer temperature of SW Florida.  How have you and your girls
been doing
> we have been seeing some intense "stuff" from the Tsunami that
came through
> there, are you in that area?  Did you notice any decrease in
episode
> activity, or intensity when you moved?? Actually was Phoenix warm
also, We
> have noticed a tremendous improvement in her activity level.  We
have gone
> through phases of behavior issues, we mostly go with Behavior
Modification
> techniques, and pre planned scheduling to combat some minor OCD
type things,
> mostly we try to work out one issue at a time.  I guess we have
been lucky
> she responds pretty well to that...Patience, lots of
Patience..they are at
> that crummy age pre-teen, hormones are crazy, mood swings, moon
phases what
> ever cycle they follow is still a mystery.
> lee
>
>   _____
>
> From: aztobkkmorris [mailto:camrn1@h...]
> Sent: Thursday, January 06, 2005 12:47 AM
> To: afha@yahoogroups.com
> Subject: [ahc] Hi there
>
>
>
> I am Chris Morris, parent of Haley (13) and Caroline (10).  Both
> girls have AHC, and I am just reconnecting with everyone after a
> year or so.  We moved from Phoenix AZ in Sept. 03 to Bangkok,
> Thailand.  I was wondering if anyone knows of any kids here in
> Southeast Asia with AHC.
>
> Haley and Caroline are doing well - medically they are both very
> stable and healthy, and the AHC episodes are very sporadic and
> minimal.  We are now primarily focusing on education and behavior
> issues. Behavior especially with Caroline.  Would be willing to
> share experiences - insight with anyone interested.
>
> Thanks,
> Chris Morris
>
>
>
>
>
> 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
>
>
>
>   _____
>
> Yahoo! Groups Links
>
>
> * To visit your group on the web, go to:
> http://groups.yahoo.com/group/afha/
>
>
> * To unsubscribe from this group, send an email to:
> afha-unsubscribe@yahoogroups.com
> <mailto:afha-unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
>
> * 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]