Hiya Satnam, Just wanted to say welcome to the group & glad you could join us - I find it easier to keep up with everyone through this site than with ...
Hi all…. For the constipation issue we used a product called “Kiwi Crush” I don’t know if it is available over there but it is a Kiwi Fruit pulp (fine...
Hi Satnam, Welcome. I've heard that you are also from Canada. I think we're the only two moms from Canada and I would love to hear from you. I live ...
hi everyone hope alls ok,sorry i havent a message for every member but were up to our eyes in work and the dreaded decorating/electrics/carpets and seeing the...
Hi Joanne. The feet turning is very normal in disabled kids. Denis wears AFO's( Ankle Foot orthotics), I put them on him for a couple of hours twice a day. I...
CHEERS MARGARET FOR THE INFO YOU GAVE US ITS REALLY HELPFUL.HARVEY IS DUE TO GO TO THE PHYSIOTHERAPIST SOON SO WE WILL SEE WHAT THEY SAY. XJO &DAVE&HARVEYBOOX...
Hello, Just thought that I would let you all know how the Micah-moo is. We have been giving his rescue meds once a day since Friday. I keep calling the Doctor...
thanks racheal for the feet info,a quick comment about harveys doctors, they always seem to be on holiday? if any problems arise we have to wait for them to...
Hi everyone, my name is Satnam and my soon to be five year old Kristan has MPEI. Thanks to Nikkie for letting me know about this site and thanks for the...
Laura, I'm sorry for your loss, before I had Kristan's baby sister Sonya I had a miscarriage also, I know how hard it is, but your OB is right, there was...
Hi, I was just wondering if anyone else's child has received botox injections? Kristan just got the injections yesterday to help loosen up her calf muscles so...
hi everyone,hope alls ok just a quick question,does anyone know of the oldest child who has mpei? a doctor at arrowpark hospital merseyside told us there have...
Hi Joanne, I think that it is Denis ( 18/7/01). I haven't heard of any older. I don't know if any of the other mums know any one older. I do know that there...
Hi Satnam , Welcome to the group. Denis has AFO's, but he has never had Botox. He has his left hand cast at the moment. I get serial casting done on his hands...
Hi Rachael, Did I congratulate you on the new baby? I f I didn't then I am now. I remember how busy I was when I had Bronwyn. The suction machine is just the...
- Hi, I believe the oldest child that I've heard of is seven years old. But I also remember reading in one case study that this child had normal development...
Hiya, This is one of those questions we've never asked our doctor (mostly because he knows much less about MPEI than us...), but also because I'm not sure how...
cheers everyone for all the replies,I did goe back and read most of the messages from the start of this group and a few times i noticed mentioned that the...
Joanne, I think the problem with any type of epilepsy is 'bad wiring' and in the case of MPEI , it's bad wiring gone very, very wrong. I've never seen any...
Joanne, I would have to agree with Laura on many of the things she mentioned about our children. I know that Micah has too many seizures all over his head for...
thanks for the replies they really help,while watching tv i came across a programme on channel 4 (england) called extraordinary ilness, they are documentarys...
I only know of harveys neurologist dr appleton i think its a really good idea that more research is done and definiately more people should know about this...
Hi Jo, I am interested to hear that Harvey is having spasms. Niamh has these too. They started off with her throwing her head back and arching her back. Some...
Hi everyone, I just read your e-mail about our babies and their life expectancy and just thought I'd share a bit of info that I know about Ockar and Daniel who...
Hi Margaret, no, Kristan has never had serial casting done, she is not to tight with her hands. Sonya is 15 months old today. Do you find the AFO's keep...
I don't know of the oldest child that has MPEI, but just wanted to add to Laura's being told 10 years is the best they could hope for - we asked when Kristan...
Well Isaak has made it to 6 yrs at months old they told us he wouldn’t make another 4 months. Then when we applied for housing modifications when he was 2...
Hi Satnam, Were you told anything at Sick Kids? That's where Rylie was diagnosed and we got the impression there that she, too, wouldn't live to be a year old...
Hi Nikkie, in response to your question about what makes these kids die so young, I believe that it is the hundreds of seizures that some kids keep having. I...
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