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Post by marisa81xx on Feb 19, 2009 19:44:33 GMT
hee hee thanks sam lol and kevin yeah def a heartbreaker in the making lol i will put ma hands up and admit i do sometimes get swept up in the heartache of it all and i cannot bare the future sometimes but then i look at james and he smiles and pulls me in for a hug and i realise what im missing when im like that xx but i think we are more than entitled to feel that way sometimes xx but u need to surround yourself with loving and caring family friends and health prefessionals we have been very VERY fortunate that the people who care for james have been so supportive and a few of them have had special kids themselves and some are carers for respite kids so they kinda know how hard things are and they all help so much xxx
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sam01
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Post by sam01 on Feb 19, 2009 22:29:45 GMT
i couldn't agree more marissa i have a little moment all the time don't think we would be human otherwise would we. and having kids does funny things to you anyway let alone these special little babies, all my dr's and therapist are really good too its just the people who are supposed to be supporting me and helping are rubbish my social worker told me in her words "i see children a lot worse off than lewis you know" and i fully appreciate that probably is the case that is my baby she is talking about and whether he is the worst or not he deserves the same care and support from these people as anyone. we have not bothered to get the help that we could have due to the fact that this woman camein my home and made me feel like i was wasting her time. this was before the pachygyria had been spoken about. its a shame these few peoplecan come and make me feel so down because aside from the few i have mentioned the rest are great. Lewis' nursery is out of this world so much so when we fundraised to go abroad we donated a lot of money to themaswell and also i have no joined the committee. when my children go to school i am going to study hopefully OT i think we could all give OT's or physios a run for their money we carry out these therapies everyday . you know when all the ambitions you had in life just don't seem to matter anymore i was a manager of a photographers and then after lewis was born i still love doing photos but i want to do something that will change the lives of children like ours. i have never been so passionate about anything in my whole life i finally feel like i have found my purpose. Listen to me and next i am running for prime minister lol.
i am jst loving taking to you all feel like i am being understood for the first time since he was born if that makes sense
thanks all
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Post by greystanley on Feb 21, 2009 18:00:26 GMT
Sam, my daughter has pachygyria and microcephaly. She wa diagnosed as having classical lissencephaly type !, 4C after MRI scan and seeing Dr Dobyns. Thought to be chromosomal but fish test didn't show it up, prob on 17th chromosome. She is 16. She can walk, run, hop etc, she has a lot of speech, it is her main mode of communication, and augments it with Makaton signing and using symbols which helps her a lot too. I taught her Makaton from birth. She is really healthy. Had a very few 'episodes', might be fits but not sure. Very few and far between anyway. She has been all the way through mainstream school with 100% support and has some really good school friends who come and stay over. She does have severe learning and speech and language difficulties and some balance and other problems, but I can see she may be able to do some sort of supported part time work in the future. She loves dance, trampolining,swimming, music, drawing and painting (very basic), she is very, very sociable, her friends are the most important thing to her. She goes to this really wild night club that is for people with learning difficulties and their friends - it is the real thing: ground shaking music, lights, bands etc and she just loves it. She has a go-kart and a trike and a scooter I got adapted. She loves life. Children with these problems all present differently and with different difficulties and strengths. She is very teenagerish and her best used phrase is 'I'll do it ON MY OWN' otherwise understood as 'get lost Mum'. I could not have dreamt she would be like she is when she was little. I was terrified of the future for her then, I still am now, but not in the same way.
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sam01
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Post by sam01 on Feb 21, 2009 20:17:42 GMT
thank you so much for that message it is always so refreshing to hear of a little one with a happy ending. i think me and lewis' dad are now strong to the fact the he will always be different but its great to hear that perhaps he doesn't have to be that different. the hardest thing is the not knowing for me for example if you child is diabetic you know that they cane at certain things they need injections etc but we are just dealing with an absolute unknown.
i heard from an old microcephaly group of mine that dr dobyns os fantastic where in the world do you have to go to get an app with him x
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sam01
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Post by sam01 on Feb 26, 2009 15:39:55 GMT
do any bodies children have real trouble sleeping if so what do dr's put that down to and how do you control it
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Post by marisa81xx on Feb 27, 2009 18:00:25 GMT
james has had a lot of bother sleeping has meds for reflux and since he got tummy tube put in he has been much better and we use chloral hydrate which does help xxxxxxxx
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sam01
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Post by sam01 on Feb 27, 2009 18:15:48 GMT
we have been using melatonin now for about a year and it has no effect at all the dr said we could put the dose up to 10mg so that 5 tablets a night crazy i said to her surely if that dose does not work its just not going to
my son becomes reallt distressed at night he screams and is inconsolable and it is not my boy its somebody else does that make sense to anybody else x
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Post by marisa81xx on Feb 28, 2009 19:56:37 GMT
yes huni it def does xxx james for a while was getting up about midnight and literally screaming the place down till 5.30 am it was horrific it really was and def not my happy smiley little boy xxxxxx we tried melatonin but it didnt work on james at all xxxx
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sam01
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Post by sam01 on Mar 1, 2009 11:43:42 GMT
thanks marisa i wonder whether lewis is having some kind of siezures in the night because he doesn't even seem to be him its really strange x x
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Post by marisa81xx on Mar 1, 2009 11:46:44 GMT
could be hun maybe speak to his consultant about doing an overnight eeg x
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sam01
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Post by sam01 on Mar 1, 2009 16:29:12 GMT
he has had an eeg before it was a day time one though and it came back normal i suppose it is always an option he has now been referred to a nurology yeam at birmingham childrens hos for his sleeping
but i don't have much faith though because the dr prescribed him melatonin slow release well it is a tablet and the thing that makes it slow release is the coating on the tablet and he is three years old and cannot take tablets so we have to crush them which stops them being slow release waste of time x x
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Post by marisa81xx on Mar 1, 2009 18:49:04 GMT
awww hun i know xx u wonder about them sometimes dont u lol xxx def ask them to do an overnight eeg when he sleeping and see if maybe he is having seizures xxx
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kevin
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Post by kevin on Mar 1, 2009 20:55:16 GMT
hi sam/marrissa. you can have your son put on a monitor to see if he is having siezures during the night, you could also install some kind of indoor camera to check your son .like an inside security monitor, . i know that this may seem a lot of trouble but if your child is like my son callum .then a visit to the hospital is a nightmare..callum may have severe learning difficulties but beleive me he knows when he isv isiting the hospital.lol callum does have seizures during the night and he will from time to time wake up crying, but in general after he has a seizure he is very tired and he just dozes off again. good luck kevin
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Post by lorraine&Leon on Mar 1, 2009 22:47:54 GMT
you could also install some kind of indoor camera to check your son .like an inside security monitor This My fella set one up for me to watch Leon at night. We bought an infra red security camera, a tv card and used the recording software that came with the card. You can't watch it back in real time but can skip through it and get an idea if there's anything going on.
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Post by caroline on Mar 2, 2009 6:38:15 GMT
Hi Sam, My little man Declan would have won an award for being one of the worst sleepers ever!!!, he originally started on 3mg Melatoin and then went onto 10mg. Which was great getting him off to sleep but then he woke up a few hours later and often very distressed!! The Melatatonin came in capsule form so you just had to unscrew it in the middle and then dissolve the powder with a little bit of water. When this proved insufficent we then went on to Chloral hydrate and combined the two , leaving the chloral till later when he woke and this worked well for quite some time. Unfortunatley my lil hero gained his wings just before christmas. Hope you get this sorted for your lil angel Love Caz xxxxx www.caringbridge.org/visit/declankellywww.deccydoos.muchloved.comP.S. Its very likely honey that it could be seizures that are disrupting sleep as Declan suffered with seizures 24/7 x
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