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/
>
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/ >
Sarah,
Sorry to write so late, we have not had service here since we moved to the appartment next to our old one this last week. This appartment has the extra space we were hoping for and a room and bathroom downs stairs for Micah! He was hanging out in our small living room before.
Yes, Micah is on Dilantin and we have a broviac/hickman catheter in his chest for blood draws. ( We gave up last year after we watched him get pricked all the time and the scaring made it very difficult to keep getting blood out of the same veins.) I hate to say that I like this med... it is so hard to keep controlled yet it has been Micah's best medication and he is on such a high dose of it that it often makes him sleepy. His working med level is between 35-40 and we have it checked weekly.
Antibiotics can make the level fluxuate quite a bit and it has been difficult to keep working on it. But without it Micah has such a hard time. He is also on 75 mg of Topamax 2x daily and Clonazapam 25 mg 3x daily. Micah is also on famotadine for reflux and Carafate for stomache bleeds. We have had a hard time with drool so he is suctioned a lot. We also just invested in this chest compression system called "The Vest" and for the moment it is keeping him alive as we have decided not to treat Micah with antibiotics any longer for chest infections. We also just put him back on continuous feeds because he was doing a lot of heaving and having horrid fits from gas. Micah has also had the fundo done with a mickey button placement and I am still not sure if it was our best bet, yet for now it is working. We deal with so much gas that it makes life here a guessing game and it can be hard to comfort him without giving him Atavan/lorazapam to calm him down.
Phenabarb was the first medication that we worked with and it never really worked for him. Nor did Keppra, the ketogenic diet, Zonisamide... and several others. Vigabatrin/sabril made his seizures worse. We have had quite a time figuring out what medications are good for him. he seems to have such bad reactions to many of them that even testing them twice seemed like it harmed instead of helped. We wanted to make sure we could strike them off the list of possibilities.
Cheers to Sleep... in anyway or form. We have been blessed to have people in our house that come and get paid by the state of Alaska to work with Micah during the day and four nights a week. I am sorry that you have to keep working so hard just to make ends meet and to keep your house hold thriving. Surely you deserve a much needed night of rest... I hope it was wonderful!
Hugs to you, and let me know if I can help with anything.
Rachel
Homer Alaska
To: MPEIparentsupportgroup@yahoogroups.com From: isapickering@... Date: Wed, 11 Nov 2009 18:15:38 +1300 Subject: RE: [MPEIparentsupportgroup] trying drugs - dilantin
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 doesnt 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 wouldnt 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 Avas death was it a big seizure or was it her phenomia/chest infection/respiratory compromise?
Kayne is just reaching 8 months and we are far more worried about his life than we ever were about Isaaks 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 doesnt appear as strong.
We get out first night respite for Kayne this weekend for the first time in I cant 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 grannys for the night) yah a sleep in and an undisturbed nights sleep.
We still havnt 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 Im tired and cant be bothered checking it!!
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 tdeiulio Sent: Wednesday, 11 November 2009 10:25 a.m. To: MPEIparentsupportgroup@yahoogroups.com Subject: [MPEIparentsupportgroup] 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 MPEIparentsupportgroup@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 >
Bing brings you maps, menus, and reviews organized in one place. Try 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
>
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
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 forthe 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 shebit down hard and left an imprint on the finger.
Duh, doya think she was trying to tell me something????? Next timeI 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/
>
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.
By the way - I intended Niamh's site to be for us all, so if anyone wants to post anything they have found along the way I am more than happy to add it. Other good related websites, useful things, articles etc....
Also, for the new group members that joined since I set up the site, I would love to add your kiddies stories if you would like them there - just e-mail me them with pictures (or a link to their own websites if they have them)
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. > >> > >> > >> > >>
> >> > > > > >
> >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. >
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
> >
>
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
The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free!
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.
> >>
> >>
> >>
> >>
> >>
> >
> >
>
We were given it in Hosp when Kayne was seizuring the docs 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 drs are stumped We dont know about having more children but we want to know for when Torie comes to have them. I dont hold my breath that the results will show anything??
--- 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
>
I had contact with your mum Shirley a few weeks ago and she said that she would talk to you about joining the group. I am really glad you decided to - the parents on this site offersuch good support.
You are going through the worst bit of this right now, the initial diagnosis and getting your head around what it all means.
Try not to be overwhelmed by the info that's out there but do ask anything you want - all these mum's do know how it feels to be going through what you are.
My little one Niamh was not diagnosed until 1 year old (which actually is quite late compared to some of the kids on site)
Angeline has given you details of Niamh's website which is intended as a resource but I appreciate may be a bit overwhelming at first as there is a lot of info on there (all gathered from the mum's in this group).
I am really glad to hear that Aaron is trying the ketogenic diet - I really hope that it works for him (it was amazing for Niamh).
I also have quite a lot of experience in tube feeding the diet so if you come across any probs let me know and I can hopefully help.
We have a charity here in the UK (that's international) called Matthews Friends - part of the charity's workis a"ketogenic diet parents forum" that can give youanswers to absolutely anything diet related (I am heavily involved with this charity in the UK)
They are closely involved with the charlie foundation in the USA (and Jim Abrahams came to our last UK conference to talk about Charlie.) Thinking about it, I am guessing it might be more sensible for you to try the Charlie foundationfirst for answers, but if that fails try myself or Matthews Friends.
Hi Amy where are you from do you have any other children etc etc.
Aaron and I have been married for 13 yrs we have Isaak 8 Torie 5 and Kayne (nearly 8 months)I was 28 yrs when I had Isaak and 35 when I had Kayne.
Torie has normal syndrome
Isaak was diagnosed with MPEI when he was 6 months old and Kayne is a ?MEPI diagnosis they have not yet put a definitive label on him because there is no evidence this condition runs in families and they want to do genetic tests before they make it official and have to publish it in a medical journal.We live in NZ and to our knowledge are the only family in NZ who currently have MPEI children. Both our boys have no other major problems however Isaak does get hypothermia well is partially hypothermic all the time! He is on Clonzapam Topamax and Kayne is on clonazpam, viagbatrim (sabrill this drug was terrible for Isaak but has been Great for Kayne!), Topamax just putting in phentoyin (dilantin) We tried the keto diet just recently but Kayne wouldnt go into keytosis he also didnt show any drop in blood sugar levels so the Drs believe his body was getting energy and producing sugars from somewhere most likely wasting away his muscle mass we stopped the diet after 10 days of trying but may try again when he is a little older.
I have been through this condtition twice can you tell me your brain scan results and eeg results and I will let you know my thoughts on if Aaron has MEPI or not. Kayne is a text book case of the condition and its progression and we have all the eeg reading and results to support the published documentation of the condition he had 12 eegs in less than 1 month you could track the progression of the condition with these you could also track the change in the drs approach as the eegs changed.Both my boys seizures began before they were 12 weeks old and both of them made no developmental progress prior to their seizures.
With this group ask and you shall receive information is given out freely what do you want to know??
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.
Hi Amy where are you from – do you
have any other children etc etc.
Aaron and I have been married for
13 yrs we have Isaak 8 Torie 5 and Kayne (nearly 8 months)I was 28 yrs when I
had Isaak and 35 when I had Kayne.
Torie has “normal syndrome”
Isaak was diagnosed with MPEI when he was 6 months old and
Kayne is a ?MEPI diagnosis – they have not yet put a definitive label on him because
there is no evidence this condition runs in families and they want to do
genetic tests before they make it official and have to publish it in a medical
journal.We live in NZ and to our
knowledge are the only family in NZ who currently have MPEI children. Both our boys have no other major problems
however Isaak does get hypothermia well is partially hypothermic all the time! He
is on Clonzapam – Topamax and Kayne is on clonazpam, viagbatrim (sabrill – this
drug was terrible for Isaak but has been Great for Kayne!), Topamax just putting
in phentoyin (dilantin) We tried the keto diet just recently but Kayne wouldn’t
go into keytosis he also didn’t show any drop in blood sugar levels so the Drs believe
his body was getting energy and producing sugars from somewhere most likely wasting
away his muscle mass we stopped the diet after 10 days of trying – but may try again
when he is a little older.
I have been through this condtition
twice – can you tell me your brain scan results and eeg results and I will let
you know my thoughts on if Aaron has MEPI or not. Kayne is a text book case of
the condition and its progression and we have all the eeg reading and results
to support the published documentation of the condition – he had 12 eegs in
less than 1 month – you could track the progression of the condition with these
– you could also track the change in the dr’s approach as the eegs
changed.Both my boys seizures
began before they were 12 weeks old and both of them made no developmental
progress prior to their seizures.
With this group ask and you shall
receive – information is given out freely – what do you want to know??
Sarah & Aaron
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 Amy Sent: Thursday, 12 November 2009
1:27 p.m. To:
MPEIparentsupportgroup@yahoogroups.com Subject: [MPEIparentsupportgroup]
New to Group
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.
We were given it in Hosp when Kayne was seizuring the docs 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 drs are stumped We dont know about having more children but we want to know for when Torie comes to have them. I dont hold my breath that the results will show anything??
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
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
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...
My daughter Ava had MPEI and microcephaly. Basically Ava's head circumference did not grow at the rate it should have after her birth. She looked perfect and didn't really look like she had a small head. I know microcephaly is different to craniosynthosis...did Aaron have surgery to open his sutures? Ava's fontanelle closed when she was about 3 months old but her other sutures remained open. Ava's actual brain growth was affected by MPEI. She was diagnosed with MPEI in September of this year when her EEG showed that her seizures were migrating from one part of her brain to another. She was 8 months old. She developed pneumonia (a complictaion of this condition) and was oxygen dependent until she passed away on 16th October.
What happens to Aaron when he has a seizure? The severity of MPEI can vary, Ava had a very severe form, but children with it are very similiar in terms of seizures and their development. As you are new to the group Amy I would recommend that you take a look at an excellent website niamhsjourney.com. Niamh's mom Alison is also a member of this group. I think it's important to have some information on MPEI but as Aaron hasn't actually been diagnosed with it try to not overload yourself with info you may not need...
I really hope the ketogenic diet works for Aaron...I'll be thinking about you all...
--- 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
> >
>