taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Oh yeah forgot that El has been referred for I T baclofen therapy, not sure how I feel about it really, if it stops or even halves the extention patten then that's good but just a worry about the 5 day hospital stay and all the feeding situation etc. don't like staying in that hospital at the best of times but with El being such a poor sleeper anyway and then being disturbed over night, and not really seeing Al for a few days and how will he cope on a night etc it's all just a worry.

Whats that? What is it for etc. Sounds promising but 5days does seem a looooong time in hospital

ds3 has been diagnosed with croup his oxygen level was 90% and he sent him home. I would have thought thry would send on to observations unit to see how he went.
Ds1 appt with chid development centre for autism on Monday. Its horrible it really is. When we are shopping he starts as hes 'scared of all those people and lights and noises' and hates me as I took him there. He gets violent too. He cant stand routine changes at all. He hates noises. He loves to sit and rock and pretend to be a baby. He doesnt have the mental age of a child his age. I would say hes more like an 18-24month okd child.

Ds2 is concerning me tio.still not speaking despite all my efforts to get him ti speak like explaining things and naming thingd etc. He won't say mama or anything but if Iask him what he wants he will point at It

Re DS1 i really think they should have kept an eye on his with sats of 90, kids can deteriorate so quickly

DS 2 doesn't say much, mainly bang and boom [ but he seems quite switched on will sign along to Mr tumble etc, and he doesn't seem delayed in any other area, I think just some kids develop in other areas then the speech catches up.

I T = intrathecal baclofen.
The 5 day stay is just a tester to see if it will work, on day 1 he goes to theatre to have a catheter inserted in his back. Day 2,3,4&5 are injecting the baclofen in increasing doses to see if El will benefit from it. If he does then he will be fitted with a small pump under his skin that will pump continuously.

It was ds3 that had stats at 90. Hes still coughing poor little thing. Hes been checked again today and was given atrovent inhaler. Seemed to work this morning but has been coughing a lot more this evening and cant another dose before 6hours is up and he had some at5pm.
Hes got another drs appt tomorrow morning just to make sure hes not got worse.

Have you made a decision about it yet? What will it do to help him

Long time no speak!! hope is all well with you all and all your little Scallywags. Life here a bit manic and sometimes am losing the will to live not really but people who should use common sense are driving me nuts. Do any of you LO's get Continuing Healthcare?

Take care all and have a good W/E XX

Where is everyone :(

Same as you DGD ran away you little tinker!!
How are you all?
Life chaotic.

Life is definitely chaotic.

How are you? And kids?

Wonder how everyone else is

its been soooo hard here. Ds is in sooo much pain.

(It's giddy) just can't be bothered to change my name back
Chaotic here too :( no kitchen or water.
It's my birthdays ody, going to Harry Potter world tomorrow :)
Boys fine :)
How is everyone?

Hello. I'm still here too. My bookmark was on last may, sorry I have been neglecting this hread!

Glad to see you all!!

good to know boys are well

happy birthday!

Starfish are yiu and ds ok?

Ds1 is poorly was rolling around in pain today. And then was sick. Hes got a bit of s temp bow too.

Granny he has low iga and has had neutrophil deficiency too in the past 2/3 x. His gastro ? Blood disorders now too??
He questioned thalasemia?

Happy Birthday Giddy for yesterday & . Sorry to hear you have no cooking and cleaning equipment. Love to boys.

starfishmummy glad you are still around hope you are all well!

DGD nice to see you again. Sorry DGGS is still unwell.

Re low IgA Annabel has 2 infusions a week of gammaglobulin a bit of a pain as she hates me for sticking needles in her I can't say I blame her,
but it seems to do the trick except for the copious shit from her colostomy!!
However "they" have grown something weird from her poo, am waiting with bated breath for written results. Plan is for multiple scopes in all gut orifices
5 in all. Hopefully not until end of April.

The rest of the mob are muddling along but as a "good" friend said I can't grumble as I asked for them

Speak soon and take care!!

How rude of your friend 2old!
you do an amazing job and go above and beyond looking after your children, I think we are all entitled to a moan every now and then.

Poor DS1 lost, it's just one thing after another.
Do they do the heel prick test for thalasaemia? shouldnt it have been picked up earlier than now?

Hello starfish hope you are well xx

We're looking into intrathecal baclofen for DS1 in a hope that it will help with his extention pattern, it just getting to a point now where he is so awkward to carry, and I've strained my shoulder and neck from all the lifting of him and DS2.
DS2 is 2 at the end of the month, where has the time gone?
He is just hilariously funny (when he's not being clingy) it's strange as he doesn't say much but does makaton for certain things. He makes his wishes known anyway lol.
Anyway back to bed for me all is quiet here now
Love to all x

Granny stick two fingers up from me please! You do an amazing job and if it wasnt for you they wouldn't be so well looked after!

I just domt know what to think anymore.hes had nothing orally since monday morning anf that was sip of juice!

Hes in almost constant pain everyday. I am going to ask for referral to immunology I think and goimg to ask about the rast blood tests if they are worth getting done.
They are £250 but if it helps ds1 then I dont care.

giddy hows your mum doing?

Hes at cdc for autism today.
better get a move on need all kids dressed by 8!

Hello. Nice to see you all.
Ds is doing well. Hes just started going to a teen group - aimed at increasing independence for kids with learning disabities. They went to pizza hut last night (he does eat, just not enough!!). He's the one standing in the grey t shirt-

His peg site. ..

Currently ? Egid or crohns/colitis

hes poorly atm

aww star what a lovely pic x x

Aww what a lovely pic

ds is quite ill atm :(

what do you all think of his peg site

Hi All

DGD Jay & Annabel get very sore and spotty stomas quite often and I apply eye ointment (you can buy it OTC) If looking ok I smarm Vaseline round the site and use a Buddy Button. BUT please don't take my word for it!! Hope he feels better soon.

Starfish are you sure your son is a teenager.....how time flies!!

Looks a bit red, is there a small head on it? El used to get that with the PEG for about 6 months before he got it removed in favor of a mic-key, touch wood never had an issue since.

That's a lovely photo starfish x

Mum's ok on another mission to get Elliot's wheelchair sorted, she's looking at getting one that's not even on the market yet!

Yep its got a head on it. Well did have.

Hes now passing bloody diarrhoea :(

just soooo pissed off that hes still having to suffer

ooo giddy sounds fancy!

Ds is in hospital.

Bloods are fine but hes losing blood and hes in pain

well we were discharged.
It was the old gastro who did f.a for ds infact he saw him and smirked. Arsehole.

Ds sat and smacked his stomach. Imo he isnt expressing the pain verbally which could be due to thr autism. He was then quite for a while and was rolling trying to get comfy. He had paracetamol around 1and half before this. I asked nurse to come and watch she only saw him trying to get comfy and being off.
We came to the conclusion that asd was making it difficult to express how much pain he was in etx as he wont say unless asked and if he isnt in pain hr will say no.

I asked the gastro for more pain relief he said no paracetamol is sufficient. I said if it was he wouldn't be smacking his tummy because of pain and explained asd side.
He looked at him felt his stomach and saidits not tender and what else do you want me to give (being sarcastic)
I said im not thr dr you are. You need to tell me.

The other2 drs stood and watched me argue but they were 'under' him he was regon call all wweekend

the dr who saw him before that said she would try and give him something else but reg wont agree.
Even she knew dr was being difficult
His nurse said pals need to be informed asit was horribe how ds is suffering and has suffered at his hands

Oh DGD I am so upset the way you are being treated! I really don't know what to suggest except contact PALS, but make sure your facts are tight.

Makes me thankful for the hospitals we deal with.

Was going to contact you over poo results, 'phone call from GI to say Annabel's Calprotectin was sky high which is indicative of crohns but she no blood in her poo just copious diarrhoea with lumps in it. Have you DGGS'S poo results...Just a thought.

Hope he is more comfortable soon XXX

Granny they've never taken a poo sample of him
did they say if they will start her on treatment? That might help the diarrhoea?

Hes a lil better this morning. Hes had a few bites to eat but his aspirates are quite dark? With a few small streaks of blood and a black spec??
So bloody confusing!

DGD am staggered they have not tested his poo what are they playing at?

To me it is the least invasive test for the child and so easy to collect. (from Queen Poo Collector in the East!)

No treatment yet but lined up for multiple scopes.

1. Down mouth 2)through gastrostomy 3)Up colostomy 4)Down distal colostomy 5)Up bum

We shall see!!!!!

Hope DGGS is OK and your other LO's

Love to all the little Scallywags XXX