#1
Posts: 704 | Threads: 79
Joined: Oct 2009
Reputation: 1

  • VIP
hi i am a mum to 4 and the smallest 2 has different problems jack 7 years as aspergers, chloe aged 2 1/2 no idea what causers her problems, she as sezuire type episodes,GGD,aponea attacks,hyptonia, hypermobile, BPT, feeding isuses, fundo, gastrostomy and drop attacks


hope to chat to you all soon!
#2
Posts: 43 | Threads: 1
Joined: Oct 2009
Reputation: 0

  • Registered
Hello and welcome to the forum.
#3
Posts: 7,752 | Threads: 3,202
Joined: Oct 2009
Reputation: 11

  • Administrators
(10-12-2009, 08:51 AM)jacknchloesmum Wrote: hi i am a mum to 4 and the smallest 2 has different problems jack 7 years as aspergers, chloe aged 2 1/2 no idea what causers her problems, she as sezuire type episodes,GGD,aponea attacks,hyptonia, hypermobile, BPT, feeding isuses, fundo, gastrostomy and drop attacks


hope to chat to you all soon!
Hi,
Thank you for joining the forum and its nice to see another face on the forums and nice of you to introduce yourself.
Sounds like your having abit of a hard time.
How are you getting on with the Gastrostomy button?
My son has one of these and its always flaring up,infact we just waiting for the district nurse to come out now and take a look at it as its not looking niceSad
What sort of feeding issues are you currently having?
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE
#4
Posts: 704 | Threads: 79
Joined: Oct 2009
Reputation: 1

  • VIP
hi daniel, sorry it took so long to get back , chloes been ill again

chloe as a mickey button since oct last year, to start with was horrible always getting infected and over granulated and they always dropping out! but now touch wood it looks good shes on neocate active and neocate advance plus serivat vitamins as she is milk intolerance.

and as for feeding issuse chloe is only on 60ml every 4 hours she can not tolerate more, and every few weeks she back down to 30ml so its a night mare trying to keep up .

i hope by time you read this your sons site is better?
#5
Posts: 7,752 | Threads: 3,202
Joined: Oct 2009
Reputation: 11

  • Administrators
Euans button is up and down.
One week looks good next week its red and angry.
We are always having to use biotane discs and creams to reduce the swelling.
More often than not he has the discs on just to keep it ok.
Its funny because we take great care of it with hygeine etc.

Luckily he has only pulled it out once,oh the sight of it and never had any other issues with it dropping out.
Feeding on pumps can be be a delicate task making sure you can get the balance to avoid the late night or morning vomiting fits
Or the chance they are going to pull it out etc...
There hard work but the best thing we ever did.
I remember the nasal tube like it was yesterday the constant ripping it out and putting it back down,when we were out shopping or at families it was just such a task.
I would personally always say that gastronomy buttons in such young children are the best thing to allow them to lead as normal a life as possible.
Our son is the same age as your daughter so i share your issues
Did you have the nasal tube previously and then switched and how would you rate the change in your daughters standard of life since the switch?
IP Address: Logged
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE


Users browsing this thread: 1 Guest(s)