Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

2old2beamum Thu 17-Oct-13 21:03:20

Thought I had better write something else this thread will disappear down a big black hole.

How are you all?
oldsneeze and Giddy sorry about Elibean's op being postponed do not know what else to say sad Sorry about chewed nipple brings tears to my eyes!!

Grandaughter hope all is well with my DGGS's

Gingeroots hope you are OK

Life hectic at present Ben had his VNS today he was a star nursing staff were all over him like a rash grin All the others are keeping us on our arthritic toes

Sleep well all you scallywags that includes you gingeroots

sneezecakesmum Thu 17-Oct-13 21:20:13

Well done dearest Ben. I don't doubt he was the most popular lad on the ward smile. Big wishes for the success of the operation.

Think I'm coming down with the lurgy that jess and the boys have. Baby aaaalllll has got away with it fairly lightly considering. If I've got it I'm staying in bed (smug) till it's gone. grin

Night all xxxxxx

isitme1 Sat 19-Oct-13 06:39:37

(What's vns blush)

ds1 isvery touchy and ds2 has lost his voice!
We've got appointment to see gastro in 2weeks for results. And they said they couldn't see him until February before!

Was ill with lurgy and getting it again!
How is everyone
X

Giddypants Sat 19-Oct-13 11:47:52

Lurgyfied here, only one not to catch it is dh. Poor al all snotty and grumbley. He. Had a paddy last night, he was over tired and things were just not happening quick enough!

Major lip from el yesterday when grandad came to pick him up from school instead of nanny, but he managed to walk to the car, after stopping frequently for kisses from al

Only one week left until half term, where has that time gone?

VNS vagal nerve stimulation, that's all. I know lol. Glad it's all done and ben was ok. Xx

2old2beamum Sat 19-Oct-13 13:26:04

Oh Giddy you undersell yourselfgrin
A VNS is a device placed in the neck and it sends electrical pulses to the vagus nerve and hopefully reduces seizures!!

My big concern is we now have 3 DC's with electrical devices in their bodies Cochlear Implant, Pacemaker and now a VNS hope they don't all activate one another shock

Grandaughter pleased things are on a more even keel and good luck with appointment xx

Giddy hope the snots soon depart. Hope your poor old Ma doesn't get it.
The snots are just arriving here YUK

Yes half term, then Christmas will be rammed down our necks (I am such a grumpy old fart nowadays)

XX

Giddypants Sun 20-Oct-13 04:15:34

2old I hate Christmas <runs> I am beyond grumpy that time of year. I'd feel better about it if it wasn't so tacky

isitme1 Mon 21-Oct-13 17:25:03

I don't mind Christmas all that much but then we only have Christmas dinner and the kids get presents so its not the full shabang.

Ds2 has really bad eczema on his face. Hes on steriods for it the gp said only use it sparingly for a week or less if you can. Used iy 6 days and didnt on the 7th and oh my his skin has really flared up. Its horrible.
Ds1 has the nasal flu drops tomorrow and will get ds2 in to see the gp again. The pharmacist isn't happy with steriods as ds2 can rub them into his eye which os not good for some reason which he didn't explain. .
Hes also lost his voicr lol
How is everyone?
X

isitme1 Thu 24-Oct-13 08:42:01

Anyone know about eczema?

Ds face has got really bad x

Giddypants Thu 24-Oct-13 17:19:49

Could it be an allergy? My brother had really bad eczema on his face as a baby I'm not sure what mum did about it.
She's poorly sick at the mo, has got what we've all had, but she has the luxury of staying in bed with lovely drugs until she gets better!

Elli had his schools harvest festival this morning, so lovely to see all the little kiddies singing, el was really good and did all the actions to dingle dangle scarecrow smile
Alex is getting cuter he has found his voice now and spent a good hour and a half giving his sock a good talking to when he was supposed to be sleeping! grin

How is everyone?

isitme1 Fri 25-Oct-13 04:55:22

Awww. Bless him. Sounds like they are both coming on well!

This was3rd time id taken him to gp for it.
It was locum and she gave more creams(hes already on steriod) and said buy nutrimigen hmm thought they gave it on prescription.
She didn't say which 1 he needs!

isitme1 Sun 27-Oct-13 19:38:41

Had an awful moment on the bus!
Ds1 was crying which he does which when he does means he is in pain flare up. We were on the bus and some old woman said
Oh look a screamer
It really pissed me off. He can't help being ill.
I said
Well that's what kids do. They cry sometimes.do you have a problem with that.
So some other bitch started.
Its hard enough dealing with him during a flare up. It was literally the beginning of 1 but I needed ds2 milk so had to go out.
I shouldn't have to explain why my son is crying. Even though when he got out of the buggy you could see his gastrostomy tube hanging out.
I think he may have either
Been in pain
Or thought we were going to hospital (only reason we really go out lol)
X
Rant over.
How is everyone x

sneezecakesmum Sun 27-Oct-13 21:16:50

What a bitch isitme! Why the hell do ignorant people need to DEMONSTRATE how ignorant the are! Of course little kids cry if they are upset. Hope he is ok now. Buses are horrible with kids at the best of times.

Elbear has his peg changed to a mini button tomorrow so I am staying over to look after the babe so he doesn't need to go into a germ infested, viral soup a children's hospital ward.

Hate poor el having a GA. Hate poor lamb being stuck with needles. Hate him having to be scared. It's all shit sad. Just want him home safe and sound tomorrow.

Giddypants Mon 28-Oct-13 10:17:37

good for you for saying something isitme but you shouldn't have tosad
we're stuck in hospital at the mo waiting for el to go to theatre. hate this bit. but the good bit is they are going to do his testicle at the same time. have a bit of mixed feelings about at least it's getting done and not 2 anaesthetic s and 2 sdays of upset. but im not prepared for it shock but at least its during half term and he can recover at home without missing school. hope they still let him home today . I need wine wine wine wine brew

isitme1 Mon 28-Oct-13 10:49:38

Thats why both me and dh are taking lessons
Even though dh can only take us out in the evening ad he works full time still better than nothing for now. Will take me a few months to pass I think.
Cant get head around the whole turning plus mirror signal position and then letting go of accelerator then clutch down plus little breaking finding breaking point on clutch while trying to asses oncoming traffic then turning and checking mirrors.
Shit thats a lot lol.
Ds1 is still very 'off' but he has to go nursery now as hes been off for a bit x

Let us know how he gets on. Hope all goes well.
And I hope hes not in theatre too long as thats the worst bit waiting with worry for baba to come out!

X

Giddypants Tue 29-Oct-13 06:57:08

Everything went well, and better than expected actually!
The peg got changed to a button really easily, and the testicle was not undecended, but more retracted. It turns out that whenever el was examined he would tense up and his teste would be pulled into his groin, once they had him under anaesthetic it relaxed the muscle and came down, but not quite enough into the scrotum, so they just lengthened the muscle that was holding it up. So a much quicker recovery and only one incision instead of two.
But two and a half hours of waiting in a freezing room was just awful.
Elliot was a star, and so good all day. Not a murmur when he had the cannula put in, he had a good shot of morphine at my request to the anaesthetist, so when we went to him in recovery he was all dopey and sleepy still, but no crying or anything.
Also the gastrostomy nurse saw us before we went and has ordered us loads of stuff to help with the blended diet grin
Baby boo was good too

isitme1 Tue 29-Oct-13 08:46:13

Aww brilliant.
Glad everything went well. I hope the button helps morethan it did us.
Ds has got cold.
I think i have a uti. I have qn appointment with nurse tomorrow so will mention it. X

2old2beamum Tue 29-Oct-13 10:28:06

Well done Elliot smile Giddy hope it wasn't too bad for you. Glad about Gastrostomy nurses attitude to blended diet good luck with dieticianhmm

DG sorry about your wee it is so debilitating. Glad to hear you are learning to drive.

RE screaming child a friend of mine in super market her DS was screaming and an old bitch said "if he was mine I would give him a bloody good hiding" Friend opened her bag and said "take him but you might need this" and handed her the DLA book (DLA was paid weekly then from the post office) Old bitch slunk off with the gathering crowd sniggering.

Peaceful here LO's in respite. Off to Norwich with Ben for switch on of VNS confused

XX to all

isitme1 Tue 29-Oct-13 11:04:31

Ds1 is normally good unless something is bothering him Nd it takes a lot to bother him.

Was advised to apply for mobility part of dla so we did
Its been nearly 8weeks?

I think its disgusting when people stare and comment when kids are playing up, even more when they have SN. If only they knew what that family was going through.

Hope all goes well for Ben.

Any clue ok why ds has pain at gastrostomy site? Hes always complaining of pain there? See gastros next week regarding results
X

need2move Thu 31-Oct-13 10:00:57

Message withdrawn at poster's request.

sneezecakesmum Thu 31-Oct-13 12:17:57

Hello need2move. Do you need any advice from anyone here? We're not experts by any means but have some coal face experience grin

Elli mostly gets uncomfortable at his peg site when it's inflamed and a bit infected. He's so resilient when it comes to pain. I suppose he has a lot of discomfort on a daily basis he's just got used to it sad. He's just not bothered about the wound from the testicle OP at all!

isitme1 Thu 31-Oct-13 21:22:15

Its not inflamed or infected. But hes always got pain and that's fairly new over the past few months.

Ds2 however is confusing me. His head is a Lil 'odd'.
His bones stick out on his left side at the front and kindo of dip on the right. On the back its quite long shape and it almost dents in in the middle but is different on both sides. It looks more than a bit of flat head as theres a dip in his skull. Doesnt look right at all
X

isitme1 Thu 31-Oct-13 21:23:00

These dc have a high pain threshold. Which is sad as they live with pain. Such a brave lil boy x

isitme1 Sat 02-Nov-13 08:29:00

Have you seen the thread about
Carol 73yr old missing in the french alps? If not please see it and share.
I don't know her but she sounds like a nice person and the least we mners can do is spread the word
X

isitme1 Sun 03-Nov-13 14:43:19

Anybody home??

isitme1 Tue 05-Nov-13 09:26:24

Buuuump

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now