Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

They said they will ring me. Once I get home I will ring and ask if they've come back x

Poor boy, hope they will let you know results before you leave A & E. Do you think his reflux could be causing oesophageal or gastric bleeding?

DS had this when he was 9 and he was in a lot of pain
Just a thought. Don't forget to look after yourself even if DH doesn't.

Giddypants I hope the lady continues to bloom Note I am kinder than your mum, Bless her!!

Sorry Xposted

Poor isitme and little DS you both sound so frazzled. Not what you want when you are pg. This would worry the life out of me. Flaming PEG was supposed to make life easier, just hope it's something that will heal with time.

We keep shoving calorie rich food down the tube and forget to feed the actual mouth . But it's all so time consuming as we can't get the exercises fitted in as he needs to let the food settle or he might puke. 2 hourly feeds plus water means we need to be very regimented. Still it is early days and we are all getting used to BD. wondering if the night feed may be adding to the disturbed sleep as its not normal to be fed overnight and maybe causing reflux. Going to try raising the head of the cot and if no good gaviscon.

Love to all xxx

How is DS today isitme?

2old definitely much kinder than mum, she's taken to calling me the 'fat controller'!
Had a bit of a fall yesterday, trying to stop DS from tipping his whizzy bug on its side by rallying up the patio doors! Jarred my pelvis a bit but its ok now, and DS is ok, he thought it was funny and kept saying again! Cheeky monkey!

This morning he told me he had a poo in his nappy, I knew he was doing it, but he shouted me and patted his bum when he had finished.
We had a little chat yesterday about how big boys use the toilet, and put Mickey and Donald on his potty, we might get somewhere with the potty training yay!

just would like to say hi my ds has tube and has since he was 9 months , he dont eat much and has not on a milk diet he is on neocate , he is a fussey eater to and could not suck on bottle as a baby he only drunk 2oz of milk every few hrs , he has low mucle tone too

Aww thats brilliant that hes told you!

Ds has been complaining of tummy pain. Hope it settles soon.
We took him sledging yesterday in the park he absolutely loved it!

Ive goy blisters on my feet from where socks and wet uggs have beem rubbing.

I was shattered after all that we did yesterday.

Welcome xxyy. Your ds sounds a lot like mine. But never got round to thinking about that.
After all that we did yesterday I would've thought he'd be hungry but was he hell!
How is everyone x

Hi XXY

ISITME: Hope DS' sore tum goes away very quickly and docs get to the bottom of the problem and stop the bleeding. X

GIDDY: Hope you and bibs are ok after your fall. X

I did post yesterday, or so I thought but it's not here!

DS Bern quite ill this week. 2 trips yo hospital. Doc thought there was a problem with his kidneys but seems not. Temp still going up but not more than 38.5 now and getting longer out of the paracetamol. I think he's had scarlet fever. However he is now complaining his bottom is really sore. Especially if it's moved or he coughs or sneezes! They have swabbed it so hopefully if there is anything they'll find it. His jaw bone (lower) I'd also sore yo the touch! There seems to be a wee lump on the bone so need to get that checked soon if it doesnt go away!

Mum had her results after op to remove cancer lump from breast and it is in one of the lymph modes do she'll have extra radiotherapy. No chemo so thats good. Just radio and hormone therapy.

AND we go to panel this week so hopefully our little man will be coming home very soon.........

Xxxxx

Oh god I didn't read giddys post properly. Hope you and little 1 are ok.
Gali good luck with panel.
Hope ds feels better soon too x

Good luck gali with the adoption. Finger x. Sorry little DS also not well. And also your mum. really hope all goes well for her. very worrying all round. Seems all the children are getting poorly at the moment. DGS seems to have got a bit of immunity from nursery bugs and I am sure his blended diet is helping as he probably has a healthier diet than the average 4 year old as it doesn't need to be eaten!

Isitme hope you DS tummy gets sorted soon. I suppose he is still in nappies? Problem with constipation is you can't toilet train because of all the problems. With BD DGS is very regular so we can make a start with it all.

Welcome xxy there is lots of pooled information on this thread

Thanks SNEEZE. Technically it's fostering, but permanent so he will be our 2nd son and wil always remain so. Judt means Highbury and we will have easier access to support along the way, should we need it. :-D

galli as much as it makes me feel sad I have slowly learnt our 5 (well 8 really) have missed out because they are adopted so I think you are making the best decision for your little man. I have had so little support from SS, my youngest 2 despite having very severe complex health needs hve had no SW involvement since 2009, Thank goodness for Continuing Health Care Plans.
Glad your new LO will have the support he needs
On the upside at least we had the choice to withdraw treatment on 2 and the other one decided to do it his way .
BTW I had breast cancer 20 years ago so tell your mum to keep positive (have adopted 3 since then)

Now the rest of my pals,
DGS hope you and your LO's are behaving and my DGGS's gut is feeling more comfy. I must be honest I feel a little envious regarding toilet training DS bless him managed to communicate when he wanted "to go" but unless he had his toilet seat to use (the size of a wheelchair) as he is so stiff we unable to deal with it when we were out

giddy be careful you silly girl

oldsneeze

XXY welcome to all the rubbish on this thread blame oldsneeze

XX

2OLD: Thank you so much for affirming what we believed to be the best decision. And thank you too for your words of encouragement for mum. I will certainly pass them on. Xx

Def think DS has an infection in his peg site :-(

Hope everyone and their DCs and DGCs are well and happy x

2old. Congrats on managing the infusions for DD. What a bugger that SS don't continue to give support. I get what you mean about the toilet training. For DGS it will be a long road and he will have to have a man sized bladder for us to get him to a potty chair (not got one yet!) and organise safe seating. He goes rigid when anxious and arms and legs everywhere! Will be fun I think! Would love him out of nappies before school in september.

Rubbish! Rubbish!!! Not me guv

DGS gone from constipated and going once a week on formula to 3 times today with BD. A bit slushy so I have made low fibre snacks with tons of fat in them!!! DD gave him a mars bar/milk/peanut butter milkshake in the tube and it stayed down

SNEEZE that's fantastic. Watch out for the fats though, they can make for slimy poo too :-D. How amazing is it what a little food can do!

Ds has strep infection in hisvstoma!! I knew it. Obviously was scarlet fever and if they had given him antib's for the SF he wouldn't have this bloomin infection. Poor wee soul is in agony on the inside any time his button moves or is used! Moan over. Wish us luck for panel tomo:-D

How is everyone else? ISITME how is DS?

Tried to post earlier but computer decided to be menopausal
Read previous post-I sound so callous NO I was just so relieved that we had parental rights to make what we felt was the right decision for our precious DC's.

Hi all hope you are all ok.
Re toilet training don't make the same mistake as me DS was nearly trained when we realised due to his hypermobility he needed a special toilet seat when we were out this was not possible and felt he was being given mixed messages, toilet at home/school piss your pants if you are out. Poor little bugger still signs. Sorry, what a miserable post
Hope you are all well.
Oldsneeze despite insults you cheer me up BTW do you know about Selective Dorsal Rhizotomyany advice would be appreciated.
DGD hope you are all ok xxx from DGGM

Lol at 2olds hormonal computer! You sound anything but callous

A friend of mines little boy had the selective dorsal rhizotomy op in October, he went from needing baclofen and regular Botox injections to having virtually no tone in his legs, his walking is so much better, but still a lot of physio is needed.

galli good luck for tomorrow (today) everything crossed it all works out for you. Poor DS and his PEG site, hope he is feeling better soon.

isitme how is your DS And the rest of the family? Hope (D)H has started behaving himself!

All ok here, between DS and wee sprout I'm being kept up all night!
Made DH go into the loft to get DS old baby clothes down, can't believe we have so much! Getting hospital bag sorted now in a hope I won't need it for another 8 weeks!

Aww poor baba. Hope hes better soon gali.

Ds was sent home from nursery yesterday as he wasnt settling. When I was on the phone to the nursery I started tearing up.

Giddy I took ds old clothes out for mum. She wanted a few cardis for little one.
ds still has pain in his tummy. Drew a bit of blood and hes still got blood crystals in his poo. We're seeing the gastric tomorrow so not too bad.

How are you granny? ?

Good luck gali.
That soundw nice all them calories down the tube sneeze
X

Oo and yes dh is better now lol
X

Galli. Best of best luck tomorrow. Fingers and toes crossed xxx Drs are supposed to give abx for SF as the strep can (rarely) cause other problems. Saying that there are millions of children who dont get abx and are fine. Annoying though for DS to be suffering. DGS is lucky so far with the peg site as its pretty robust, as is he despite nursery bugs lurking.

SDR previously done in the states now done in a few hospitals here!!! Brill. Leeds, Bristol (?) and others (?). One or more of the vertebrae are opened up to expose the spinal nerves and, using nerve conductors, they identify the nerve supply to muscles that are affected by spasticity in the legs. These are then cut and following months of intensive physio the child should have a much improved gait and permanent improvement to the spasticity. Only really good for spastic diplegia. Not sure about quad spasticity. No good for athetoid (DGS) - thank God! Its a scary op but very successful outcomes. Long selection process, best on children on the younger end of the scale. Friend had her DS 'done' and saw his feet flex for the first time ever Makes children far more comfortable if nothing else. Bet u wished u not asked

Thanks for info re toilet training and toilet selection. Its certainly not going to be easy. When DGS goes to school, main stream, he will have 1 to 1 and they will have (currently under construction) disabled facilities for DGS! He is currently pooing for england and it stinks...it is lingering up my nose 8 hours later!! I have def overdone the fruit and vedge tube feeds. I chuck all sorts in if its got some nutritional value but we will ease off for a few days as nursery will be sending him home too when they see his nappies

Giddy showed me one of DGSs baby vests (for prem babies) it was about 5 inches long..tiny tiny, could not believe it, and still too big for the 4-1/2 lbs he weighed.

Isitme. Maybe little DS had a tummy pain at nursery, as he did enjoy it before. When they are poorly they only want mummy Do hope all goes smoothly and you get some answers from the gastro tomorrow. (more fingers x)

Old fart away for a few days. Heaven

Right starting backwards with oldsneeze's post

bloody technology will try again tomorrow
goodnight girlsXX
But Galli good luck for tomorrow

Thanks everyone. It worked. Natch was ag
reed. Still a few weeks before he's with us but at least we know he's coming. Justvwsiting on decision makers rubber stamp before intros can begin. We are SO excited :-D DS is also really excited.X

The reg we saw at hosp wouldn't accept it was scarlet fever. His throat wasn't bad enough! Actually she couldn't see his throat properly fuel-wise to a) his oral aversion/phobia and b) hr can open wide enough and say Aaahh because he gags!
Palmed us off trying to day it was viral but that she thought he had glomusomething arthritis which is a possible complication of? You guessed it.... Scarlet fever!!! But if course mere plenty that I am I am not supposed to know that. When talking yo his consultant re the strep in his peg and he was askingv ow on eart he got strep, when I answered,' probably from the scarlet feveI was told he didn't have' he didn't say I was wrong! Rant over :-D

Site: how did it go with gastro? Any further forward? Xx

Hi everyone else. Hope you and dcs are all well, including bumps xx

Well done galli SO excited to have a new baby (hopefully with normal plumbing and not a puzzle to the medical community) It all sounds like there is no stopping it, but still fingers x!

Acute glomerular nephritis is, I think, a complication of untreated scarlet fever. ?? I know there are complications (which I kindly didnt name ) so they should always give penicillin. Yours truly had it as an adult and it was the sorest throat and fever you can ever imagine!! Rant away!

DGS keeps farting and smells awful! DD delivered him to nursery with a apparent fart smell (but was not) and they took him straight off for a nappy change! BD is a work in progress!

xx to all