Hi Mary.  Kristan did get botox injections in her calves two years ago and was
given the injections before she was fitted with her AFO's.  She got the botox in
Nov 07 and then we waited two weeks and she was fitted for AFO's.  I didn't
notice any change with the botox until closer to a month later, it took that
long for it to work with Kristan.  We were also told it would last about 3
months, but the neuromuscular doc said that as long as we can still get her
AFO's on and with heel cord stretches then she shouldn't need anymore botox. 
So, two years later, she only got the botox the one time and was seen after a
year and we were told she was ok and didn't need any further botox.  Lately, her
left leg is tight and she needs to be seen by neuromuscular again soon to
determine if she needs more botox or they might suggest baclofen according to
her physio.  Kristan also got newer AFO's in the summer, her first ones lasted
18 months before she outgrew them.

Take care,

Satnam

--- In MPEIparentsupportgroup@yahoogroups.com, Mary Roach <maryroach1515@...>
wrote:
>
> Hi Satnam,
>
> Sorry to hear Kristan's seizures have started up again.  As she had one
before the H1N1 vaccine, I suspect they were going to start again.  Hopefully
this period will not last too long.  Rebecca had the first part of her H1N1 a
couple of weeks ago, and the second part at the end of November.  Dawn did not
notice any difference in her seizures after the vaccine.  You have a good
attitude about the training for Sonya.  It will all fall into place.  A little
bit of stubbornness is good!
>
> Rebecca has not been wearing the afo's long enough to tell.  I went with her
and Dawn today to see one of her neurologists who specializes in spasticity. 
Rebecca was given 3 injections of botox in each leg/ankle.  If there is going
to be improvement/results it will start to show in about 2 weeks.  If it does
work, it will be effective for about 3 months.  We are hoping, but will wait
and see.  I recall you mentioning Kristan had botox.  Did she continue
receiving injections?  The dr. has just given Rebecca a prescription for a
standing frame.  As she is unable to support her head, she will be fitted for
one that includes head support.  Lots happening in here little life right
now.  She continues to be a trooper.
>
> Good talking.
>
> Hugs
> Rebecca & Mary
>
>
>
>
> ________________________________
> From: Satnam <skkahalma@...>
> To: MPEIparentsupportgroup@yahoogroups.com
> Sent: Mon, November 16, 2009 10:06:37 PM
> Subject: [MPEIparentsupportgroup] Re: Up-date on Rebecca
>
>  
> Hi Mary, that is good to hear that Rebecca is doing well, it is so good to see
when they react to you and you are right, everyday can be different. Do you find
the AFO's help Rebecca? Is she using a standing frame? Kristan wears AFO's too,
I find they have really helped her, she does use a standing frame at school, but
she also uses a walker now too, but she only goes backwards in it and not
forwards, but we are able to do assisted walking with her, we hold her under the
armpits and we give a little push behind her knees to get her to move her legs
as if she is walking and she is getting better at it slowly, I personally find
this easier to do then lifting her, so I do it a lot with her.
>
> Kristan's seizures have picked up after almost 3 months of not having any and
think it may have something to do with her recent H1N1 vaccine, but who knows,
maybe they were going to start up again too because she did have one seizure a
few days before the vaccine. The seizures are mild, having anywhere from 1-8 a
day, but seem to be getting a little stronger, so she may be going down a bumpy
road and I hope she gets over it soon.
>
> I wish I could say Sonya is potty trained, but this kid is stubborn, she will
go pee consistently first thing in the morning and needs a lot of convincing to
go during the day, but will not do number 2 at all, says it scares her.
Treats/rewards rarely work now. I have backed off for now as she will hopefully
do it when she is ready, at least she goes some of the time and that's something
- a lot of kids in her preschool aren't fully potty trained either.
>
> Thanks for the update, take care.
>
> Satnam
>
> --- In MPEIparentsupportgr oup@yahoogroups. com, Mary Roach <maryroach1515@
...> wrote:
> >
> > Hi Satnam,
> >
> > I have not been very active on the group lately, but read all the
correspondence from the moms (mums).   Always find it very helpful and
continue to be thankful for the sharing.   My dear granddaughter Rebecca is
doing well.  As all you moms know, every day can be different.  She is
growing,  22 lbs now.  Her tummy causes her a lot of discomfort.  She was
recently in hospital with a lot of vomiting, but home now and the vomiting is
less severe.  During one of my sleep overs with her last week, I was trying to
help her swallow saliva and put my pinkie in her mouth and she bit down hard
and left an imprint on the finger.  Duh, do ya think she was trying to tell me
something??? ??  Next time I know better to use the suctioning machine.  She
reacts to individual voices with some expression on her face.  It is good to
see.  She has afo's for both legs and the orthopedic surgeon has told mom and
dad that her bones are very very soft.
> >
> > Hope Kristan is doing well and still enjoying school.  Is she using her
standing frame?  Hopefully you are done with the potty training for Sonya. 
That was years and years ago for me.  Lots of fun!!!!
> >
> > A big welcome to all the new moms.  Hugs to all the beautiful children.
> >
> > Hugs,
> > Rebecca & Mary
> >
> >
> > ____________ _________ _________ _________ _________ _________ _
> > Looking for the perfect gift? Give the gift of Flickr!
> >
> > http://www.flickr. com/gift/
> >
>
>
>
>
>
>       __________________________________________________________________
> The new Internet Explorer® 8 - Faster, safer, easier.  Optimized for Yahoo! 
Get it Now for Free! at http://downloads.yahoo.com/ca/internetexplorer/
>

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

--- In MPEIparentsupportgroup@yahoogroups.com, Pickering Family
<isapickering@...> wrote:
>
> These are both signs or her working hard to breath the other one to look out
> for is head bobbing (her head will move or bob every time she breaths) it
> may not be phenomia but it does mean she is working hard to get the o2 � my
> thoughts are they will only work hard for so long before they really crash
> out � have you had her o2 stats checked?? If Isaak was doing this for more
> than � to 1 day we would be taking him to hosp. Or if you have home o2 you
> could give her some and see if it calms down after a couple of hours.  Kayne
> however on the other hand does tugg at the throat (called indrawing) and
> suck in his tummy to breath quite often � this is kind of normal for him
> even though the dr's comment on it all the time and his o2 is fine � we
> think that he has seizures that affect how he breathes cos he is not like
> this all the time it comes for a hour or so then goes again.
>
> Thinking of you heaps and hoping for the best - sarah
> Hi Sarah,
thanks for that,i havent checked her oxygen but will take her to the hosp
tomorrow,i think she had never really got over the whooping cough & may have
some built up gunk on her chest but you can tell she is working pretty hard.Luke
used to aspirate during seizures & had pneumonia many times & i think freyja
just once.
thanks again xxx
> Mr A and Mrs S Pickering
> Auckland
> New Zealand
> Ph: +64 9 2984769
> Mob: +64 21 744469
>
> -----Original Message-----
> From: MPEIparentsupportgroup@yahoogroups.com
> [mailto:MPEIparentsupportgroup@yahoogroups.com]On Behalf Of LeeC
> Sent: Tuesday, 17 November 2009 6:02 p.m.
> To: MPEIparentsupportgroup@yahoogroups.com
> Subject: [MPEIparentsupportgroup] worried
>
>
> hi all,
> just wondering if there is tugging in the throat & tummy going up & down
> quick is it necessarily pneumonia?
> just one more little trick Freyja has been up too!
> Lee xxx
>

hi all,
just wondering if there is tugging in the throat & tummy going up & down quick
is it necessarily pneumonia?
just one more little trick Freyja has been up too!
Lee xxx

Hi Mary, that is good to hear that Rebecca is doing well, it is so good to see
when they react to you and you are right, everyday can be different.  Do you
find the AFO's help Rebecca?  Is she using a standing frame?  Kristan wears
AFO's too, I find they have really helped her, she does use a standing frame at
school, but she also uses a walker now too, but she only goes backwards in it
and not forwards, but we are able to do assisted walking with her, we hold her
under the armpits and we give a little push behind her knees to get her to move
her legs as if she is walking and she is getting better at it slowly, I
personally find this easier to do then lifting her, so I do it a lot with her.

Kristan's seizures have picked up after almost 3 months of not having any and
think it may have something to do with her recent H1N1 vaccine, but who knows,
maybe they were going to start up again too because she did have one seizure a
few days before the vaccine.  The seizures are mild, having anywhere from 1-8 a
day, but seem to be getting a little stronger, so she may be going down a bumpy
road and I hope she gets over it soon.

I wish I could say Sonya is potty trained, but this kid is stubborn, she will go
pee consistently first thing in the morning and needs a lot of convincing to go
during the day, but will not do number 2 at all, says it scares her. 
Treats/rewards rarely work now.  I have backed off for now as she will hopefully
do it when she is ready, at least she goes some of the time and that's something
- a lot of kids in her preschool aren't fully potty trained either.

Thanks for the update, take care.

Satnam

--- In MPEIparentsupportgroup@yahoogroups.com, Mary Roach <maryroach1515@...>
wrote:
>
> Hi Satnam,
>
> I have not been very active on the group lately, but read all the
correspondence from the moms (mums).�� Always find it very helpful and continue
to be thankful for�the sharing.� �My dear granddaughter Rebecca is doing well.�
As all you moms know, every day can be different.� She is growing, �22 lbs now.�
Her tummy causes her a lot of discomfort.� She was recently in hospital with a
lot of vomiting, but home now and the vomiting is less severe.� During one of my
sleep overs with her last week, I was trying to help her swallow saliva and put
my pinkie in her mouth and she�bit down hard and left an imprint on the finger.�
Duh, do�ya think she was trying to tell me something?????� Next time�I know
better to use the suctioning machine.� She reacts to individual voices with some
expression on her face.� It is good to see.� She has afo's for both legs and the
orthopedic surgeon has told mom and dad that her bones are very very soft.
>
> Hope Kristan is doing well and still enjoying school.� Is she using her
standing frame?� Hopefully you are done with the potty training for Sonya.� That
was years and years ago for me.� Lots of fun!!!!
>
> A big welcome to all the new moms.� Hugs to all the beautiful children.
>
> Hugs,
> Rebecca & Mary
>
>
>       __________________________________________________________________
> Looking for the perfect gift? Give the gift of Flickr!
>
> http://www.flickr.com/gift/
>

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Congratulations Tanya.

Mary, good to hear from you, how is your little Rebecca doing? I was just
wondering the other day that you hadn't posted in a while.

Satnam
--- In MPEIparentsupportgroup@yahoogroups.com, Mary Roach <maryroach1515@...>
wrote:
>
> Hi Tanya,
>
> So happy to hear your good news.  Love the name (especially the spelling of
Maree).   Try and spoil yourself a bit! 
>
> Hugs,
> Rebecca, Mary & family from Canada
>
>
>
>
> ________________________________
> From: Angeline Ryan <angelineryan@...>
> To: MPEIparentsupportgroup@yahoogroups.com
> Sent: Sun, November 15, 2009 5:21:59 PM
> Subject: Re: [MPEIparentsupportgroup] New Arrival- Lily Maree
>
>  
> Tanya,
>
> Congratulations on the birth of Lily Maree!  Beautiful name.  Give her a big
kiss from Ireland! And well done you!
>
> Angeline, Bryan and Calum
> xxx
>
> --- On Sun, 15/11/09, tdeiulio <tdeiulio@yahoo. com> wrote:
>
>
> >From: tdeiulio <tdeiulio@yahoo. com>
> >Subject: [MPEIparentsupportg roup] New Arrival- Lily Maree
> >To: MPEIparentsupportgr oup@yahoogroups. com
> >Date: Sunday, 15 November, 2009, 22:14
> >
> >
> > 
> >Hi Everyone,
> >
> >I just wanted to let you know that our beautiful 2nd child Lily Maree was
born safely @ 6.38pm 13/11/09 weighing 7 pounds 1 oz, 50.5cm.
> >
> >We are both doing very well & are thrilled to bits :)
> >
> >It was such a wonderful feeling to walk out of hospital with our newborn only
24 hrs after birth!
> >
> >I hope you are all well,
> >Best Regards
> >
> >Tanya xo
> >
> >
>
>
>
>
>       __________________________________________________________________
> Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark your
favourite sites. Download it now
> http://ca.toolbar.yahoo.com.
>

--- In MPEIparentsupportgroup@yahoogroups.com, "tdeiulio" <tdeiulio@...> wrote:
>
> Hi Lee,
>
> I hope with all my heart that beautiful Freyja turns the corner for you really
soon.
> Have you tried Stripentol or Potassium Bromide?
>
> Tan
> Hey hun,
congrats again,24hrs is brilliant for the 2nd child,i did 12hrs with Freyja,i
guess i hate hospitals for good reason,no point being there
if you are confident to take bub home.
no, no one has tried those,i will mention it to her dr,anything is worth a go.
xxxxxx
> --- In MPEIparentsupportgroup@yahoogroups.com, "LeeC" <leechristian52@> wrote:
> >
> > hi everyone,
> > thankyou for all of your responses re phenobarb,Freyja unfortunately is
going down hill fast,i have increased the dose as we are out of options because
she is at the max of all of her other meds.
> > to be honest it is totally heartbreaking to see her regress so fast but i
will do anything to stop the seizures.
> > Luke stopped seizing at about 2yrs so im hoping Freyja can hold on to do the
same,i am so scared.
> > Lee xxx
> >
>

Sent using BlackBerry� from Orange

Hi Everyone,

I just wanted to let you know that our beautiful 2nd child Lily Maree was born
safely @ 6.38pm 13/11/09 weighing 7 pounds 1 oz, 50.5cm.

We are both doing very well & are thrilled to bits :)

It was such a wonderful feeling to walk out of hospital with our newborn only 24
hrs after birth!

I hope you are all well,
Best Regards

Tanya xo

Hi Lee,

I hope with all my heart that beautiful Freyja turns the corner for you really
soon.
Have you tried Stripentol or Potassium Bromide?

Tan

--- In MPEIparentsupportgroup@yahoogroups.com, "LeeC" <leechristian52@...>
wrote:
>
> hi everyone,
> thankyou for all of your responses re phenobarb,Freyja unfortunately is going
down hill fast,i have increased the dose as we are out of options because she is
at the max of all of her other meds.
> to be honest it is totally heartbreaking to see her regress so fast but i will
do anything to stop the seizures.
> Luke stopped seizing at about 2yrs so im hoping Freyja can hold on to do the
same,i am so scared.
> Lee xxx
>

Alison, I just wanted to say thank you for Niamh's site.  It is very helpful.

Satnam

--- In MPEIparentsupportgroup@yahoogroups.com, Alison Maguire
<alisonmaguire@...> wrote:
>
> Hi All,
>
> I think I found the 2009 article Sarah was talking about.. (Sarah - if there
> is another one then pls let me know)
>
> http://niamhsjourney.com/#/mpei-medical-papers/4536391844
>
> I've uploaded it on Niamh's site with the other MPEI papers that I have come
> across over the years.
>
> Love to all kiddies and angels
> Alison x
>
>
> 2009/11/12 Alison Maguire <alisonmaguire@...>
>
> > Hi Sarah - It would be great if you could pdf scan it and I can put it on
> > the Medical papers section of Niamh's site
> >
> > I know what you mean about waiting for results - we are STILL waiting for
> > skin biopsy results Niamh had taken summer 2008!
> > Thanks
> > Alison x
> >
> > 2009/11/12 Pickering Family <isapickering@...>
> >
> >>
> >>
> >>  *We were given it in Hosp when Kayne was seizuring � the doc's found it
> >> and we asked for a copy I will try to scan it and e mail it as an
> >> attatchment maybe over the weekend. � Genetics in MPEI Kayne has tests with
> >> results still outstanding from over 3-4 months ago.  Kayne is our second
> >> child with this condition � The dr's are stumped We don't know about having
> >> more children but we want to know for when Torie comes to have them. I
don't
> >> hold my breath that the results will show anything??*
> >>
> >> *Sarah*
> >>
> >> * *
> >>
> >> Mr A and Mrs S Pickering**
> >>
> >> *Auckland***
> >>
> >> *New Zealand***
> >>
> >> *Ph: +64 9 2984769***
> >>
> >> *Mob: +64 21 744469*
> >>
> >> * *
> >>
> >> -----Original Message-----
> >> *From:* MPEIparentsupportgroup@yahoogroups.com [mailto:
> >> MPEIparentsupportgroup@yahoogroups.com]*On Behalf Of *Angeline Ryan
> >> *Sent:* Thursday, 12 November 2009 12:30 p.m.
> >> *To:* MPEIparentsupportgroup@yahoogroups.com
> >> *Subject:* [MPEIparentsupportgroup] MPEI article
> >>
> >>
> >>
> >>
> >> Hi Sarah,
> >>
> >>
> >>
> >> Could you let me know the name of the article you read on MPEI published
> >> this year?  I'd tried to google it but only got older articles...
> >>
> >>
> >>
> >> Thanks,
> >>
> >>
> >>
> >> Angeline.
> >>
> >>
> >>
> >>
> >>
> >
> >
>

--- In MPEIparentsupportgroup@yahoogroups.com, Pickering Family
<isapickering@...> wrote:
>
> What meds is she on again??? Stay strong � My theory is the children make
> their own decisions and it is out of our hands and we do as much for them as
> we can to help them out and give them the best chance at pulling through
> anything.  Can you post your number again I'd love to talk to you about what
> tests your kids have had and why they think both of them have MPEI!
> Sarah
> Hey,
Freyja is on keppra,tegratol,ospolot & phenobarb.Very wise words & i bet you are
right as Luke fought death so many times & to look at him being so skinny &
fragile you wouldnt think he could.
my home no. is 65814751,not sure what the prefix is. xxx
> Mr A and Mrs S Pickering
> Auckland
> New Zealand
> Ph: +64 9 2984769
> Mob: +64 21 744469
>
> -----Original Message-----
> From: MPEIparentsupportgroup@yahoogroups.com
> [mailto:MPEIparentsupportgroup@yahoogroups.com]On Behalf Of LeeC
> Sent: Thursday, 12 November 2009 3:50 p.m.
> To: MPEIparentsupportgroup@yahoogroups.com
> Subject: [MPEIparentsupportgroup] thankyou
>
>
> hi everyone,
> thankyou for all of your responses re phenobarb,Freyja unfortunately is
> going down hill fast,i have increased the dose as we are out of options
> because she is at the max of all of her other meds.
> to be honest it is totally heartbreaking to see her regress so fast but i
> will do anything to stop the seizures.
> Luke stopped seizing at about 2yrs so im hoping Freyja can hold on to do the
> same,i am so scared.
> Lee xxx
>

--- In MPEIparentsupportgroup@yahoogroups.com, "Amy" <bess7675@...> wrote:
>
>
> Just wondering if anyone out there has or knows of children with MPEI
> that are ventilator-dependent and/or have a history of craniosynistosis.
>
> My son Aaron has seizures that have been stumping the docs since he was
> born. He is 8 months old and one of our neurologists now thinks it may
> be MPEI. Others disagree with him because he had craniosynistosis (which
> is hereditary) as well as airway issues and they think it all must be
> related to some kind of syndrome. However, they have tested him for most
> everything and it has all come back normal.
>
> His seizures have been very hard to treat. He is currently on phenobarb,
> keppra, trileptal AND clonopin for seizure management. He was doing
> pretty well for a little while, then recently his seizures increased to
> 30, 40, 50+ a day. We took him to the hospital and found out he had the
> flu. While being treated for that we got them to start him on the
> ketogenic diet. He was put on an iv med (versaid) to control the
> seizures until the diet has time to take affect. He is now in ketosis so
> they are going to ween him off the iv very slowly and hope the seizures
> stay under control. We are praying...
>
> So, we are not sure if MPEI is what Aaron has - although after reading
> your posts I feel I could have written some of them myself - I guess it
> really doesn't matter. Its just nice to know that there are people out
> there that know what this is like. I appreciate any information you can
> give me.
>
> Blessings to you and your little ones!
>
> Amy & Aaron
>Hi Amy & Aaron,
welcome to our group,i have 4 children 2 of which have MPEI,Luke is almost 13 &
Freyja is 19mths.
MPEI appears to range in severity & can have other various conditions as well.
both Luke & Freyja had up to 80-100 seizures & it took 2 yrs to either find the
right meds for Luke or his seizures just seemed to settle.Freyja is still
seizing but it is very up & down,especially if she is sick they tend to get
worse,we are going through a very rough patch at the moment.
what kind of info do you need as we have amazing parents & carers that will
gladly help you out.
Take care,Lee

hi everyone,
thankyou for all of your responses re phenobarb,Freyja unfortunately is going
down hill fast,i have increased the dose as we are out of options because she is
at the max of all of her other meds.
to be honest it is totally heartbreaking to see her regress so fast but i will
do anything to stop the seizures.
Luke stopped seizing at about 2yrs so im hoping Freyja can hold on to do the
same,i am so scared.
Lee xxx

--- In MPEIparentsupportgroup@yahoogroups.com, Angeline Ryan <angelineryan@...>
wrote:
>
> Hi,
>  
> We are still waiting for Ava's post mortem results so we are not certain about
the actual cause of her death.  It was most likely the pneumonia.  Ava's
neurologist thinks that Ava basically went in to organ failure - specifically
her heart but all her organs were affected.  Her little body was just exhausted
from fighting the pneumonia.  Prof King has told us that Ava had a very severe
form of MPEI, very aggressive.  This certainly appears to be the case because
so many of your children appear to be doing quite well.    Prof King
explained that MPEI affects the autonomic part of the brain.  This pretty much
controls everything - body temperature, breathing, heart, digestive system etc
etc.  My understanding is that these systems fail due to damage to the
automonic nervous system.
>  
> I asked Prof King last week during a phone conversation if she was surprised
that Ava died so suddenly.  She replied no, she knew Ava wasn't going to make
it.  She did prepare me as best she could but you're never ready when the time
comes.  She said Ava was always so pale, something which I was used to - to me
pale was Ava's "normal" colour but it's all part of this condition.  She said
she was so glad that Ava died so peacefully, no struggling and I'll look back
and be glad of this.  Also most children with neurological problems like MPEI
are highly irritable and difficult to settle - Ava wasn't like this, she was a
very contented baby when she wasn't seizing. 
>  
> We struggled so much with our decision to have a post mortem.  In many ways I
felt that Ava had been poked, examined and tested enough while she was alive and
we should now leave her alone.  Prof King urged us (sensitively) to allow it
because she knew I needed answers so badly.  Why did this happen to my
beautiful little girl?  She said that whenever she mentioned a medical term to
me I went home, researched it and I could lecture her on it the next day!  In
the end we decided to allow a PM.  Ava was so brave in life and I couldn't deny
her this one last chance to be brave in the hope that she might shed a light on
this devastating condition.  I know it won't find a cure but whatever is
revealed through Ava has to benefit in some way - what would all Ava's suffering
have been for unless something is learned from this amazing little person?  The
way I see it if one child is spared all the months of testing that Ava endured
then she will have
>  done something very special.  I also wanted to know if this was a genetic
condition that could happen again.  Even if my husband and I never have any
more children there will come a day please God when my son will want a family
and I want him to know if it could reoccur.
>  
> I'll keep in touch.
>  
> Angeline.
>
> --- On Wed, 11/11/09, Pickering Family <isapickering@...> wrote:
>
>
> From: Pickering Family <isapickering@...>
> Subject: RE: [MPEIparentsupportgroup] trying drugs - dilantin
> To: MPEIparentsupportgroup@yahoogroups.com
> Date: Wednesday, 11 November, 2009, 5:15
>
> Hi Angeline,
you are a strong & amazing woman & give me the strength to cope with my oh so
distressing life.
you mentioned Ava being so pale & that brought back one of the worst days of my
life:i was out for my one & only dinner during the 3mth hospital stay & i
revieved a phone call saying "now Lee dont panic but....",i returned to the
hospital to see Freyja surrounded by ICU drs ,intubated & a horrible yellow
colour,all of her organs had shut down.I never once cried in front of drs except
for that night i howled.
thankyou for talking about this also doing the PM,we need some answers for our
children.
Stay strong & take care,Lee xx
>  
>
>
>
>
>
> We have not yet tried phenobarb with Kayne �" Isaak has never been on this as
a regular med.  Kayne does well with phenobarb as an emergency med.
> We have just increased Kaynes vigabatrim (to cater for his weight increase) 
he is having lots of epeisodes of obvesious repeatative seizures lately our nuro
wants us to try dilantin �" phentoin (not our first choice of a drug to try) we
have reluctantly agreed and we begin this tomorrow.  We really want to try
KEPRA but there are funding issues with this drug in NZ and it is not readily
available to trial without a special funding approval and our nuro has been
turned down the lst 3 times she has applied for funding to try it with other
paitents (not with MPEI) We will put dilantin in see what it does and then take
it out again to apply for funding to try Kepra (apparently it looks favourable
to have tried it before applying for funding!)
>  
> Any info on your experiences with dilantin will be helpful Miach I think you
are on it??? Blood tests these might become a mission. 
>  
> Kayne has a PH probe next week so he has to come off his reflux meds tomorrow
(oh golly) I hope he does ok without them and doesn’t reflux too much or
aspirate?? After the PH probe we will decide if he just gets a micky button or
if he gets a fundoplication as well (Isaak only has a micky button no fundo.)
>  
> Seizures as they get older  - the latest article on MPEI published this year
says that as the children get older they appear to have more seizure control IE
the condition settles down �" I think it wouldn’t matter what drugs you were
on when this stage was reached �" the article says you have exited the
“stormy” phase where seizure rage out of control with drugs showing little
effect.
>  
> Angeline do you mid me asking how/what caused Ava’s death was it a big
seizure or was it her phenomia/chest infection/respirato ry compromise?
> Kayne is just reaching 8 months and we are far more worried about his life
than we ever were about Isaak’s he is more aware of touch and appears to Look
at things �" much better than Isaak ever was but he is on more drugs and he
makes heaps of saliva and coughs and chokes a lot more �" his respiratory
status doesn’t appear as strong.
>  
> We get out first night respite for Kayne this weekend �" for the first time
in I can’t remember how long we will be child free for the night (well that is
the plan!!! �" Isaak is in respite too and Torie goes to granny’s for the
night) yah a sleep in and an undisturbed nights sleep.
>  
> We still havn’t had our genetic tests back from overseas yet �" Kayne is
officially still undiagnosed but the nurologist has said there is not other nuro
condition that it can be.
>  
> Will keep in touch
> Sarah ps excuse the spelling I’m tired and can’t be bothered checking it!!
> Mr A and Mrs S Pickering
> Auckland
> New Zealand
> Ph: +64 9 2984769
> Mob: +64 21 744469
>  
> -----Original Message-----
> From: MPEIparentsupportgr oup@yahoogroups. com [mailto:MPEIparents
upportgroup@ yahoogroups. com]On Behalf Of tdeiulio
> Sent: Wednesday, 11 November 2009 10:25 a.m.
> To: MPEIparentsupportgr oup@yahoogroups. com
> Subject: [MPEIparentsupportg roup] Re: to fit or be dopey?
>  
>  
> Hi Lee,
>
> Joce Has only had Pheonbarb for periods of status. A big load which bombs her
out for a few days and stops the seizures. Her docs didnt want it to be a
regular drug as she gets very very sedated more than the average child on it.
> It seemed to help with the seizures though.
> It's so hard to know what to do with the drugs isnt it? I often wonder about
taking JOce off some meds to see if she will "wake up" more.
> Hopefully it is just a short term thing where her body is trying to process
the increase of the drug.
>
> Take care,
> Tan xo
>
> --- In MPEIparentsupportgr oup@yahoogroups. com, "LeeC" <leechristian52@ ...>
wrote:
> >
> > hey everyone,
> > Freyja is having heaps of little fits during the day & quite a few of the
bigger ones at night during sleep.
> > the drs want to increase her phenobarb which makes her floppy & dopey,so she
has gone from trying to roll & very alert back to where she was nearly a year
ago.
> > it may well be the seizures that have made her regress but i know the
phenobarb doesnt help.
> > any ideas please?
> > hope all is well xxx
> >
>