Hi Nikki & all,

Car seat
The axiss car seat cost £179 and is not a special needs one but it is
very new on the market, so you may well not have come across it yet,
but if Maddie is heavy for her age it may not last you very long.
All the other swivel special needs seats I saw cost nearly £1000! and
no they are not funded by the NHS which I think is really unfair as
they are essential.

The dougnout shaped rest we have is from thebabycatelogue.com and is
called "snug head support and body pad" When we got ours I don't
remember it having a body pad but I guess they have modified it?
They also do one called "nap n go" which looks quite good but I
haven't tried it.

We use the neck support with the opening slightly to one side so that
her chin is under the cushion.

The kimba spring has side head supports so it keeps her upright, but
we recline the chair far enough so that her head doesn't flop forward.
The actual chair itself can recline totally flat which is great for
her when she is having full body muscle spasms or is sleeping, and the
chair can be set in the desired position and then tilted in space so
she is in a seat position but laid back.
The only drawback that we have found is that it is really heavy to get
in and out of the car (it weights over 20Kg which is 2 x niamh!)

As for double buggies I did a lot of homework. We decided on Mamas and
Papas twin aria which is a side by side buggy because:

1. Both seats recline almost fully so Conor could lay flat from
newborn and Niamh needs that too.
2. The seat base (where their bums go) was much bigger than on any
other make, and we needed that because of Niamh's long legs.
3. It has a proper division between the 2 sides so Conor cannot pull
at Niamh's tubes etc or harass her when he is bored.
4. It was very light and folded down easily (I can collapse it and
open it with conor in my arm.)
5. It has the bumper bar thing across the front (which can be easily
removed)but which is good for stopping Conor climb out and offers a
bit more protection for Niamh.
6. It is quite narrow (apparently the same width as a wheelchair) so
in theory you should be able to go anywhere that has wheelchair access
- this is not really true but with a side by side buggy you are going
to struggle with any make.
7. It was fairly cheap (about £170)

I did like the front and back ones but they were very expensive, very
heavy and one seat does not recline fully. Also the seat base was
incredibly narrow on these and relies (I assume) on the bigger child
being able to sit upright on their bottom and not slip down like Niamh
did when I tried her in it. She nearly split herself in half with the
harness poor love!

Hopefully I have helped - and not just waffled on.
Good luck
Alison


--- In MPEIparentsupportgroup@yahoogroups.com, nikkie tatton
<nikkietat@...> wrote:
>
> Hi Alison - nice to see you here! And hi to everyone else too.
>
> We have been looking for a car seat for Maddie for a while now - she
weighs 11kg & is on the 98th percentile for height (75th for weight)
so we think she's going to be tall like Daddy!! None of the 'normal'
ones we looked at seemed any good - we sat her in about 20 & none of
them supported her head from flopping, bless her. Even a couple like
the britax travller plus that are recommended for special needs babies
seemed any good. We have an appointment with OT on Tues next week, so
fingers crossed he will have some ideas. Other than that, one we
really liked the look of was called (bizarrely) The Carrot. It
reclines with the front seat of the car, so we thought we could get a
really good angle for Maddie so her head wouldn't flop. We , but are
also looked at the swivel ones, but are not sure if they will support
her head enough.
>
> Alison - where did you get the doughnut shaped head support? We
tried a couple but they didn't go round far enough so were rubbish for
Maddie!
>
> I have looked at the Kimba spring - again, I was concerned about
head floppage - does it support Niamh's head well? None of them seem
ton recline enough, & she will soon be too big for her current
pushchair (which is a quinny buzz & reclines beautifully).
>
> The problem we have with car seats & pushchairs is also financial -
we don't seem to be able to get any monetary support, & as these
things costs hundreds or thousands, we simply cannot afford them - did
you get financial aid anyone? If so, how?
>
> We'd love a double buggy for when little one comes (in Feb) - we
didn't think we'd find one that reclined enough or that would
accomodate Maddie's height - what make do you have Alison? We didn't
look into it that much, just made assumptions really based on single
buggies.
>
> I am going to speak to OT about Maddie's back & see if we need to
take any preventative measures at all. She has a pretty good posture
when sitting (except for her head, bless her!!).
>
> Rachel - I know what you mean about the facial characteristics -
there is a pic of Rylie on Harry's site that looks just like maddie -
a couple of my friends thought it was her!! We were asked to send
photos to Alder Hey too, as they believe that MPEI may cause some
coarsening of the facial features , so they asked for early & recent
photos. I know microcephaly is a common characteristic (MAddie's head
circumference is only on the 9th Percentile & dropping), & it looks
like she has the same face shape as her MPEI friends. I've not seen a
photo of Micah yet - I bet he's gorgeous! I bet you're fed up of
being pregnant by now - I know I am & I've got 18 weeks to go still!!!
>
> We're going to start weaning Maddie off the keto diet - her seizure
numbers have remained the same, & although we believe it has helped
her mood, we cannot be sure. So, we will start a wean, &b then see if
her mood gets worse - if so then we'll just get her straight back on
the diet!
>
> Last thing - doctors are so funny. When we first came up with the
diagnosis of MPEI for Maddie, nobody in Plymouth or the South West had
ever heard of it. On Monday we had an appt with our consultant & he
had a student there. He told her that we 'just pipped him to the post
in a diagnosis' but 'he was close to getting there'. Ha - took us 5
mths to convince him to order the 24hr video EEG to confirm it!!
>
> Anyways, hope everyone's good,
>
> Take care,
>
> Nikkie xx
>
>
>
> ----- Original Message ----
> From: niamhmaguirempei <alisonmaguire@...>
> To: MPEIparentsupportgroup@yahoogroups.com
> Sent: Tuesday, 16 October, 2007 10:39:19 PM
> Subject: [MPEIparentsupportgroup] Re: More questions, for all you
mom's who know better....
>
> Hi All,
>
> Niamh has also got a back brace but it is very new - last Friday
> actually, but she is only wearing it at nights at the moment.
> It covers her torso as she has developed quite severe scoliosis now.
>
> Her orthopaedic surgeon said that her curve is not just postural
> (because she cannot hold her back up) but also has a rotational
> element to it which he suspects is part of her condition. All this
> means to look at her, is that she has developed a bit of a hump on her
> right back where her back rib cage sticks out.
>
> Unfortunately we left it a bit late to intervene and it has now
> affected her hips which are windswept to the left and her head which
> always tries to turn left so I definitely think you should get in early.
>
> Because of these problems we have also been given a special chair
> which looks like a buggy but has a seat with lateral supports, head
> supports and a pommel between her legs. It is called a kimba spring by
> Otto bock and it is brilliant.
> I actually think she is much more comfy in it when she is straightened
> out and it looks like a trendy pushchair rather than a wheelchair
> which is nice.
>
> I do have a double buggy when I go out with both of them but I am
> lucky in that Niamh is still very light (she has just hit 10Kg -
> horay)although she is very tall. If she weighed much more I don't know
> how easy it would be to push them. I managed with a sling for the
> first 3 months but Conor just got too wriggly.
>
> As for floppy head, we have a neck cushion that is like an open
> doughnut shape which works quite well as it goes quite far round the
> front too. We have also found a car seat that swivels to our car door
> so we can put her in easily without twisting but is only goes up to
> 18Kg so may not be good for some of you. It is made by bebe confort
> and is called axiss and it wasn't that much more than a normal car seat.
>
> As for our babies - I do agree that they look similar. A student from
> Alder hey asked for a picture of Niamh last year as they were doing a
> project on MPEI and looking at physical characteristics so they may
> well be something in it!
>
> Take care all
> Alison
>
> --- In MPEIparentsupportgr oup@yahoogroups. com, "kiterain"
> <kiterain@ .> wrote:
> >
> > Hi, This is Rachel, I am Micah's Mom. He is now about 16 months old.
> > I was glad to hear about Denis getting a new chair and the brace.
> > Micah is getting what they call a flexible TLSO, I guess it is a
> > torso support to help him not get scoliosis. I was wondering how many
> > of our children have these and if you have seen them actually help. I
> > have also been wondering about wheel chairs and what is the best
> > support for your children. My Physical therapist was also wondering
> > how you all deal with the floppy head syndrom and what helps to keep
> > them upright. We also just bought a new carseat for Micah thinking
> > that it would work good for him but because his head is so floppy it
> > does not seem to be working out that well. The chair does recline
> > some, but it has this weird head peice that makes it actually harder
> > for Micah to sit right then well. frusterating! We also just
> > purchased a double stroller because we were wondering how we would
> > take our children (I am due to have our next anytime) out and about
> > and making Micah as comfortable as possible. Do you all have special
> > vehicles to help get your children in and out, with extra room?
> > Welcome to the group Alison! I have seen Niamah's pictures on Harry's
> > site for so long I wondered if you would be able to join the group
> > sometime!
> > I had one more wonder comment, and that was I was thinking about our
> > children and have any of the rest of you noticed how their eye
> > lashes, cheeks, noses and lips seem to be the same, or kind of the
> > same? I keep looking at these babies and I think they all look like
> > our Micah, and because we know soooo very much about this disorder I
> > wondered if there was any kind of "look" that was similar, or if I
> > was just dreaming it up.
> > Anyway, Micah has been super sleep these days and we have had quite a
> > time getting his medication regulated so that he has waking times....
> > eating and gaining weight have been hard, yet he gained 5 oz!
> > Hurrah
> > Thanks blessings to all,
> > Rachel
> > Sturgis Michigan USA
> >
>
>
>
>
>
> ___________________________________________________________
> Yahoo! Answers - Got a question? Someone out there knows the answer.
Try it
> now.
> http://uk.answers.yahoo.com/
>