#16
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Hi Polly and All

It sounds like some of you have had a similar time to me, I also felt to blame for my sons condition.

My son will be a year old this week and is still awaiting a diagnosis if we will ever get one.

I had no fetal movements and my son was very small in the womb, I kept asking it for it to be checked and was told he was lazy.

When my son was born he did not feed for the first 22 hours and due to a busy maternity ward ended up going in to shock and spending the first 4 days of life in SCBU, due to this they blamed all my concerns over the first 3 months down to this.

Finally when he stopped breathing at 4 months they took me seriously and found my son had a bleed on the brain.

Since then I have been fighting hard, he is being admitted to Evelina Hospital again this week for a LP, Bloods and chromosone testing.

I believe I am quite lucky because my son is in an Under 5 developmental programme, so he has physio/OT/SALT/Portage and has a good paed. But not having a diagnosis is the hardest part.

He is diagnosed with GDD amongst other things, he can still not sit unassisted, crawl, dabble babble or even roll but he is so intelligent in other ways, this is now causing a problem as he has gone from a baby who NEVER cried to now being upset a lot of the time, I think he is becoming frustrated.

Polly - you need to get help URGENTLY, it is the only way, I receive DLA for my son Midrange at the moment and this does help a little cause my son has made it hard for my husband and I to hold down our jobs, m son does not sleep and is waiting for a Gastrostnamy peg so I will then reapply for DLA, I did the forms myself and then our keyworker and doctor filled in a section, it was longwinded but quite simple.

I also live in Kent, I don't know where you are based but you need to get help and I am happy to try with that.

It has become very lonely for me since my son was born, we cant go out very easily and people feel awkward around us as my son is different and they dont know how to react.

Please do contact me and I would be interested in any advice from others in ways I can help my son.

Kara
x
#17
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my son has a mic-key and i think it was the best thing we ever did. are they planning to feed your son via the button? it really boosts their weight fast once they learn to tollerate it, euan took a while and still vomited in the mornings after an overnight feed. How long do you have to wait for the op?

xx
#18
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(01-01-2010, 02:37 PM)Lucy Wrote: my son has a mic-key and i think it was the best thing we ever did. are they planning to feed your son via the button? it really boosts their weight fast once they learn to tollerate it, euan took a while and still vomited in the mornings after an overnight feed. How long do you have to wait for the op?

xx

Hi Lucy

They have just called it a peg to us, to be honest we have not been advised much, he had a NG tube in temp to see whether overnight feeds would help and it was torture my son stopped orally feeding altogether but they have assured me this will not happen with the full peg, I think it maybe a button aswell, basically a clip on the outside with an inflatable ball to keep it in place, it has to be changed every three months.

He is very underweight and his brain is not growing, my son does not understand he has to eat and is constanly force fed, so the peg is to make sure he takes all day time feeds and a overnight top up feed too.

I am not sure how long we have to wait, we are on the list, supposedly we have to go to a hospital in Lewisham, couple hours from us cause thats the closest place.

Can I ask did it stop your son from orally feeding or was this never an issue for him ?
#19
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Our son had an NG tube at first for 6months, it was awfull. It was right in view of everyone, he pulled it out almost daily and had to be held down to have it put back in. The mic-key (sounds the same as a peg i'll add a pic at the bottom) has been fantastic, his weight boosted right back up and he has grown a little (although his condition stops growth anyway), he was just so much happier and had loads of energy on the feeds but unfortunatly it did kill his appetite, he barely ate anything in the day but i knew that was ok because he still had tones of energy from the feed. I still offered him food and he'd eat little bits but not properly.

The buttons are not without their own problems, the do sometimes leak a little from the site which burns euans skin as its stomach acid. Euans nurse is great though, she comes out same day i have a problem and dresses it and send the docs a fax with what to prescribe for it (creams or anti biotics if its infected). He did pull his out once, it was not a pretty site but i popped t back in as the nurse showed me previously and it was ok......i just wasn't prepared for all the stomach contents to follow it out as he'd just ate a yoghurt, no one told me that bit haha so be warned but to be honest hes only done it once and hes had it over a year.

xx


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#20
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Wow thanks so much for the message, its funny I asked questions like leaked to our CNN team and they said it hardly ever happens, equally I asked about him pulling it out and they said no not likely. So thanks for your input, its nice to hear form someone first hand, that is pretty much what they showed us so I would say yes.
We have a flocare pump already, not as fancy and new as that one and our son is only having top of feeds of between 200/400ml of infantrini at night, does your son have more ?

My concern is our son barely feeds at the moment so I am sure he wont be to hot once the button goes in but I know its hopefully the best option and equally not a long term option.

The NG tube was awful like your son Grayson kept pulling his out and in the end I refused to have it back in, in the process he got an ear/voice box//throat and chest infection as well as scaring to the throat, obviously the best option - lol.

Your son looks like a happy little boy, can I ask does a medical diagnosis make you feel better as a parent - I am sure that sounds selfish.

Thanks again and thanks for showing me the pictures


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