I love your story, we have a son Ryan he 13 and it's hard to believe how far we
have come, Ryan has been very healthy and has a pretty much of normal life for
him, We just spent a christmas party with the youth group at our church last
night he did pretty good and had a great time, thank you for the happy story and
looking forward to many more dances for Ryan and Elaysha in the years to come
Happy Holiday to all the family
John, Betty and Ryan MacLean

--- In Peroxisomal_Disorders@yahoogroups.com, "collinskidsird"
<collinskidsird@...> wrote:
>
> Hello All
>
> I just wanted to share that Elaysha (IRD, 15) will be attending her first
semi-formal school dance tomorrow night.
>
> Elaysha came home from school just giddy yesterday with excitement.  She was
bubbling over with as much details as she could explain about the school dance. 
A boy in her class, Chris, asked her to go.  (They have become BFF's this year.)
To be quite honest, I was taken aback.  I guess I've dealt with so much "disease
and medical" stuff, I never thought this day would come.  lol
>
> Her teacher called me shortly after and explained that ALL the kids in her
class had been talking about the dance and that Elaysha was very interested in
going.  So, I spoke with her dad and we both agreed it would be fine for her to
attend and that he would go along with her also.
>
> What an exciting time for her!!  I never thought I'd be happy for one of my
girls to go on a "date", but this is about one of the most "normal" things to
happen to me in a while.
>
> Thought I'd just share that with ya'll!
>
> Suzanne
>

hi Sarah,

Though I'm not one of the ladies :-), I am very glad to hear your found a
neurologist you can work so well with.

I hope Jordon's treatment goes well, and you guys have time for a celebration
when you get home in 4 days!

Jim

--- In Peroxisomal_Disorders@yahoogroups.com, Sarah Ray <sarah_ray06@...> wrote:
>
>
>
>
>
>
> I Wanted to update all you ladies quickly. I am in the library at the
childrens hospital right now in Ft. myers fl. Jordan has been submitted for 5
days Jordans new neurologist who he seen yesterday morning has been in contact
with Dr. Raymond and will stay in contact with him They both agreed steroids
should be given through iv in the Hospital over a period of 5 days.so we are
here for 4 more days. They will also start him on a med. tomorrow ( dont
remember what its called ) its to help him "loosen up" as when he stopped
walking he became very stiff ....it started with his right leg then spread to
his left and his hips .It makes it very hard to hold him or really do anything
withi him for that matter. I will let you know how Jordan responds and I am very
happy with the Neurologist he seems like he really cares about his patients and
he is more than willing to listen to Dr. Raymond. We have had another MRI on his
brain done and also today an EEG which went well. Thanks again for all your
support. =) Take care
>
>
>
> Sarah Danielson
>
>
>
> p.s. my apologies for any typos!NO TIME TO FIX THEM!
>
>
>
>
>
>
>
>
>
> To: Peroxisomal_Disorders@yahoogroups.com
> From: sbutalla@...
> Date: Thu, 17 Dec 2009 08:49:52 -0600
> Subject: RE: [Peroxisomal_Disorders] Re: Mystery infections
>
>
>
>
>
>
>
>
>
>
> Sam takes 5 mg of cortef (hydrocortisone) in the a.m. and 2.5 mg in the p.m.
too.  He didn't need steroids until his leukemia diagnosis.
>
> When he goes in for a procedure that requires sedation, he gets a triple dose
of his a.m., 15 mg…
>
> Shannon
>

Our Dr. put Peyton on hydrocortisone pills to kick start her adrynal glands into
helping her recover from colds or stressful situations w/out her body having to
work so hard to do it.

--- In Peroxisomal_Disorders@yahoogroups.com, Karen Smith <karen_7lee@...>
wrote:
>
> We brought Joel in today to get him checked out because of a fever once
again.  The results of the bloodwork again showed a "mild infection" somewhere
they were unable to pinpoint cause the counts were so low and general.
>  
> Man, am I sick of that.  Has anyone else had this happen to their child?  I
don't understand how a "mild" infection gives him a fever of 39.5 or higher
(without the motrin) for 2 days.  Is that normal??  I would have thought a low
grade fever that wouldn't go away would be more typical for a "mild" infection
where white blood cell counts were not that high??  Or maybe I don't know
something?
>  
> The doctor was all unconcerned and saying how kids typically got a lot of bugs
at this age and it was normal for them to get quite a few flus and etc.  Maybe
Caeden was just abnormally healthy, but he never got fevers all the time like
this, it was usually a runny nose and sniffles.  Plus, several times now it had
been an infection of some kind.  I think this is the fourth time we have been on
antibiotics since June, the last fever did not come with elevated white blood
cells, so we got Tamiflu sent home with us instead.
>  
> Why oh why does my child have to be so WEEEIIRD.   I don't really mean that,
as I adore my little guy, but I wish if God were going to give me the
responsibility of caring for him, He would have sent along an instruction
booklet.
>  
> Right now I am constantly either feeling like I am not being proactive enough,
taking him in to the doctor soon enough, etc. or else feeling like I am
overreacting.  In fact, the doctor this time did not even worry about ferbile
seizures as she said they were usually brief and did no damage, unless they
became prolonged. 
>  
> That also gets me.  They have no idea how unclear they are sometimes. 
Prolonged in what way??  In that one episode lasts longer than 5 mins?  In that
there are many little "ticks" and movements within an hour?  In that strange
movements are repeat many times in 10 mins??
>  
> Well, if anyone can help, that would be great.
>  
> And, Sarah, I hope you know that you and your  family are in my prayers
tonight.  I have been thinking of you all day long and I hope it all goes well
for you to get in to see a neurologist right away.  I wish so much you were
closer, and I'd come over and we could cry together and just sit and hang out
quietly.  I am very much hoping that Dr. Raymond can also give you some hope
that Jordan may regain some of what he has lost...
>  
> We love you!
> Karen
>
>
>       __________________________________________________________________
> Looking for the perfect gift? Give the gift of Flickr!
>
> http://www.flickr.com/gift/
>

I received this today, if anyone hasn't signed up, it's an easy way for ULF to
get donations, every time you search or purchase from listed e-stores, a
percentage of your purchase price goes to ULF. It's free!


Hi Patty,

We know that many causes have had a hard year, so we'd like to try something new
to
help United Leukodystrophy Foundation that requires your participation, but is
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plus the usual percentage.

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especially since it's free!  You can even just forward
this e-mail.

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You may need to login first.

>From our families to yours, we hope you have a great holiday season.


Yours,

Robert N. Grosshandler
Founder

Hi Rudi,

Ciera is in the same boat (deaf-blind). She had passed her newborn hearing
screening, then becaume worse and worse. Her hearing was bad by the time she was
2 (she worked ok with hearing aids), and now has basically gone. The good news
is, she qualified and has received a Cochlear Implant, whcih she is responding
well to!

The test your Dr. is talking about (while he is asleep) is an ABR. It is a
measure of the neruological response to sound. It is more accurate for kids,
espceially ones with trouble communicating, because it doesn't rely on anything
but measurable nerve response. I knowd our Doctor was ready to put the ear tubes
in during her ABR, if it was needed, so she wouldn't have to be sedated twice.

Good luck!

-Jim



--- In Peroxisomal_Disorders@yahoogroups.com, "RudiG" <rudigracie@...> wrote:
>
> Hi all,
>
> Sooo Cameron had his hearing test today and they said its hard to tell but he
seems as though hes not hearing, he again has fluid in his ear but both ears
this time, they feel he has little or no hearing if at all. They have said that
cameron will need grommets to clear the infection which have to be put in
surgically. They then said that they want to do a test where cameron is aleep to
test whether his brain reacts to sound. They are weary of putting him to sleep
twice as they informed me its "more risk for a child like cameron" Great! so
they are going to see if it can all be done in one go.
>
> I feel sad because its another thing on this mad, crazy fair ground ride but
feel happy too as this is maybe why cameron very is so un responsive, maybe,
well im hoping this can change him once hes able to hear. Blind and deaf thats
not good.
>
> Well all updated here, hope all is well with you all, well as well as well can
be for our group!
>
> thanks Rudi xx
>

Hi all,

Sooo Cameron had his hearing test today and they said its hard to tell but he
seems as though hes not hearing, he again has fluid in his ear but both ears
this time, they feel he has little or no hearing if at all. They have said that
cameron will need grommets to clear the infection which have to be put in
surgically. They then said that they want to do a test where cameron is aleep to
test whether his brain reacts to sound. They are weary of putting him to sleep
twice as they informed me its "more risk for a child like cameron" Great! so
they are going to see if it can all be done in one go.

I feel sad because its another thing on this mad, crazy fair ground ride but
feel happy too as this is maybe why cameron very is so un responsive, maybe,
well im hoping this can change him once hes able to hear. Blind and deaf thats
not good.

Well all updated here, hope all is well with you all, well as well as well can
be for our group!

thanks Rudi xx

Hey Karen

Elaysha had a great time at the dance, I posted one pic and will put up more
soon.

As far as the fevers....on any given day, Lizzie can have a fever.  Today she
had a low-grade fever for no reason.  No other symptoms or issues.  Its just
become a way of life for us and if the fever isn't up to 100, I never treat it. 
It seems to often work itself out.

She's the type of kid that she's either on fire or freezing...it's amazing, but
I think it's "her normal" and it doesn't bother her.

As far as the seizure meds and febrile seizures.  Here is kinda her history
around that...

Jan 2002, Lizzie had her first set of febrile seizures and was hospitilized for
7 days.  She came home on medication.  After 6 months, I started weaning her off
the meds.  I didn't like the way it made her act.  The Neurologist wasn't keen
on my idea, but I did it anyway and just kept Diastat at home for emergencies.

Oct 2008, This was the next round of seizures for Lizzie.  Once again in the
hospital for 7 days.  It was determined that she had a UTI.  I chose not to go
home with daily meds as this was only her second set of seizures in almost 6
years.  Once again, went home with Diastat for emergencies.

Feb 2009,  Another round of seizures and another UTI.  7 days in the hospital. 
This time she started on Keppra and profolactic antibiotics.

June 2009, Seizures again and another UTI that was resistant to the antibiotic
she was on daily.  7 days in the hospital.  Continued the same regimine at home.

Nov 2009, More seizures and another UTI.  5 days in the hospital.  Upped her
Keppra dosage and changed her profolactic antibiotic as the last two UTI's were
resistant to the Bactrim and now we are using Macrodantin one month and then
Bactrim the next and so on and so forth.

I don't know if that helps you, but I hope it gives you a better understanding
of what Lizzie has been thru.

Suzanne

--- In Peroxisomal_Disorders@yahoogroups.com, Karen Smith <karen_7lee@...>
wrote:
>
> Suzanne, I am so jealous, and I mean that in the best possible way!  I am
very happy for this, and I hope that your children may go on to do many other
"normal" things.
>  
> I have a few questions about Lizzie and her ferbile seizures.  Was she
already on seizure meds when she was having them?  Do you try to give her meds
to prevent the ferbile seizure activity, or do you just manage the fever?  Does
she have fevers often?  (ok, I know you said she was prone to infection, but it
seems like Joel has been having a fever every 3 to 5 weeks since June!)
>  
> I tried the Motrin, and it works better than the Tylenol (which now seems to
do absolutely nothing), but it didn't work as well as I had hoped.  It did
bring down his fever starting within half an hour through to an hour, but it
didn't seem to last more than 4 to 6 hours, instead of 6 to 8 hours.  I had to
give him 4 doses in 24 hours, instead of the recommended 3 doses maximum.  I
have asked the symptom management team for Joel to help me with this, but I
wanted your thoughts?  Or anyone else?  Anyone else with a child who seems
difficult to manage fevers??
>  
> Ok, I gotta run!  Thanks for the help.
> Karen.
> Yup, send pics of the girl all dressed up!
>
> --- On Thu, 12/10/09, collinskidsird <collinskidsird@...> wrote:
>
>
> From: collinskidsird <collinskidsird@...>
> Subject: [Peroxisomal_Disorders] School Dance
> To: Peroxisomal_Disorders@yahoogroups.com
> Received: Thursday, December 10, 2009, 11:49 AM
>
>
>  
>
>
>
> Hello All
>
> I just wanted to share that Elaysha (IRD, 15) will be attending her first
semi-formal school dance tomorrow night.
>
> Elaysha came home from school just giddy yesterday with excitement. She was
bubbling over with as much details as she could explain about the school dance.
A boy in her class, Chris, asked her to go. (They have become BFF's this year.)
To be quite honest, I was taken aback. I guess I've dealt with so much "disease
and medical" stuff, I never thought this day would come. lol
>
> Her teacher called me shortly after and explained that ALL the kids in her
class had been talking about the dance and that Elaysha was very interested in
going. So, I spoke with her dad and we both agreed it would be fine for her to
attend and that he would go along with her also.
>
> What an exciting time for her!! I never thought I'd be happy for one of my
girls to go on a "date", but this is about one of the most "normal" things to
happen to me in a while.
>
> Thought I'd just share that with ya'll!
>
> Suzanne
>
>
>
>
>
>
>
>
>
>       __________________________________________________________________
> Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark your
favourite sites. Download it now
> http://ca.toolbar.yahoo.com.
>

Elaysha had such a wonderful time.  We bought 4 dresses and the final choice was
a beautiful turquoise and purple gown with sequins.  She looked so gorgeous.

Marvel (dad) drove Elaysha and stayed around to make sure all was well.  She met
up with two classmates and Chris (the boy who asked her to the dance).

Marvel said she was just glowing and enjoying the whole experience.  A slow
dance with Chris and all!!

This is an experience I will never forget.  I posted one pic of her and Chris
and will post more soon.

Thanks to everyone for your kind words...and thank you for sharing these life
moments with me.

Suzanne

--- In Peroxisomal_Disorders@yahoogroups.com, "Ciera's Dad" <vtshopper@...>
wrote:
>
> That's awesome! I have a huge grin on my  face as I am typing this!
>
> It's fantastic for your daughter, and your family. It's also a great reminder
to all of us that there is a lot of joy in our kids, regardless of their medical
situation.
>
> -Jim, Ciera's Dad
>
>
> --- In Peroxisomal_Disorders@yahoogroups.com, "collinskidsird"
<collinskidsird@> wrote:
> >
> > Hello All
> >
> > I just wanted to share that Elaysha (IRD, 15) will be attending her first
semi-formal school dance tomorrow night.
> >
> > Elaysha came home from school just giddy yesterday with excitement.  She was
bubbling over with as much details as she could explain about the school dance. 
A boy in her class, Chris, asked her to go.  (They have become BFF's this year.)
To be quite honest, I was taken aback.  I guess I've dealt with so much "disease
and medical" stuff, I never thought this day would come.  lol
> >
> > Her teacher called me shortly after and explained that ALL the kids in her
class had been talking about the dance and that Elaysha was very interested in
going.  So, I spoke with her dad and we both agreed it would be fine for her to
attend and that he would go along with her also.
> >
> > What an exciting time for her!!  I never thought I'd be happy for one of my
girls to go on a "date", but this is about one of the most "normal" things to
happen to me in a while.
> >
> > Thought I'd just share that with ya'll!
> >
> > Suzanne
> >
>

We have mystery infections quite a bit. Peter also went to doc yesterday with a high fever, 104. They think he has a small pneumonia, and sent us home with antibiotics and breathing treatments. Fingers crossed.

Previously, we have had a bone infection, GI infection, to name a few.
Anne Park Hopkins
Korn Ferry International
404.222.4055 office
404.388.2442 mobile

----- Original Message -----
From: Peroxisomal_Disorders@yahoogroups.com <Peroxisomal_Disorders@yahoogroups.com>
To: peroxisomal_disorders@yahoogroups.com <peroxisomal_disorders@yahoogroups.com>
Sent: Fri Dec 11 22:14:10 2009
Subject: [Peroxisomal_Disorders] Mystery infections

 

We brought Joel in today to get him checked out because of a fever once again.  The results of the bloodwork again showed a "mild infection" somewhere they were unable to pinpoint cause the counts were so low and general.

Man, am I sick of that.  Has anyone else had this happen to their child?  I don't understand how a "mild" infection gives him a fever of 39.5 or higher (without the motrin) for 2 days.  Is that normal??  I would have thought a low grade fever that wouldn't go away would be more typical for a "mild" infection where white blood cell counts were not that high??  Or maybe I don't know something?

The doctor was all unconcerned and saying how kids typically got a lot of bugs at this age and it was normal for them to get quite a few flus and etc.  Maybe Caeden was just abnormally healthy, but he never got fevers all the time like this, it was usually a runny nose and sniffles.  Plus, several times now it had been an infection of some kind.  I think this is the fourth time we have been on antibiotics since June, the last fever did not come with elevated white blood cells, so we got Tamiflu sent home with us instead.

Why oh why does my child have to be so WEEEIIRD.   I don't really mean that, as I adore my little guy, but I wish if God were going to give me the responsibility of caring for him, He would have sent along an instruction booklet.

Right now I am constantly either feeling like I am not being proactive enough, taking him in to the doctor soon enough, etc. or else feeling like I am overreacting.  In fact, the doctor this time did not even worry about ferbile seizures as she said they were usually brief and did no damage, unless they became prolonged. 

That also gets me.  They have no idea how unclear they are sometimes.  Prolonged in what way??  In that one episode lasts longer than 5 mins?  In that there are many little "ticks" and movements within an hour?  In that strange movements are repeat many times in 10 mins??

Well, if anyone can help, that would be great.

And, Sarah, I hope you know that you and your  family are in my prayers tonight.  I have been thinking of you all day long and I hope it all goes well for you to get in to see a neurologist right away.  I wish so much you were closer, and I'd come over and we could cry together and just sit and hang out quietly.  I am very much hoping that Dr. Raymond can also give you some hope that Jordan may regain some of what he has lost...

We love you!
Karen
       

________________________________

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