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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


gallivantsaregood Thu 29-Nov-12 22:55:32

Sneeze: poor DGS. Us he naybe having a wee struggle with dairy? Oats are also common for intolerances..... D S didn't manage anything oat related for a long time.

The LO who will hopefully be coming to join our family will be coming on a permanent fostering basis. With his additional needs it means he is more likely to get access ti services he needs and support will be on hand for us too if we need it. However although he will technically still be fostered he will become our 4th family member and will be cared for and loved just like DS and we'll be there for him ALWAYS x

sneezecakesmum Fri 30-Nov-12 09:46:29

Hope it goes smoothly and the little one comes to you soon. I hope he has had good experiences so far with his caregivers as attachment difficulties can be problematic. DDs friend is trying to adopt too as she can't have children. Single FT worker so may be difficult but also finding it stressful.

Hope today is the turning point with DGS. We'll go easy on the dairy and see what happens. He did initially with the PEG tolerate all the formulas and put on weight. So confusing smile

Isitme1 Sat 01-Dec-12 20:56:37

Hope everyone is doing well.
How are things gali?
Ds was in hosp as daycase yesterday.
Hes had it changed back to peg and endoscopy done plus 24hr ph too
(Sent us home with it)

He was given a paste called orabase to try and sort the leak plus antibiotics just in case. The dr said 'his insides were pristine'.
Leakage due to weight loss and if the paste and reducing his feeds volume but making them more frequent doesnt work then observations in hospital plus the tpn for a few days to give stomach a break to let it heal a bit. Hes had the paste on 3 time today and its still leaked.

sneezecakesmum Sun 02-Dec-12 11:58:03

O dear isitme. Doesn't sound top clever. Weight loss also not too good. Do hope it improves and no TPN needed. It's been a real struggle for little DS.

2old2beamum Sun 02-Dec-12 15:27:19

Grandaughter sorry about DGGS but short term TPN can be a solution DD4 was threatened with it post colostomy but it obviously scared the pants off her!! Love to DGGS hope DH is behaving grin Hope nausea is no worse. BTW how is your DM

Life somehat hectic here appts 4x this week and next week DD4 needs an IGGU infusion and a trip to GOSH Thurs appt @10.30 and if we are late we stand the risk of losing our slot! Have booked train tickets GUESS WHAT only 1st class available with wheelchair space (smoke ears) and we live an hour from station. As we are on highest CTC am wondering if we can get help.

Galli I admire you I am afraid we couldn't foster too much of a control freak but you are right you should get better support and he will always be yours.

love to you all xx

2old2beamum Sun 02-Dec-12 15:32:32

Oldsneeze did not mean to omit you but "old fart" is snoring next to me a bit distracting hoping all is going well with BD it always worked in the past smile

sneezecakesmum Sun 02-Dec-12 16:36:57

Hi 2old and all. Bloody appointments!! Bet you have a awful hectic week. DD has one on tomorrow for a scan and I am having to go as her DH went 2 weeks ago. This is a private one looking at her notches! She is going to ask the sex. I've got to go and not looking forward to it as these scans weird me out. Nooo desire to look at pictures of developing foetuses at all! Sorry its just a peculiarity of mine blush

Hope everyones elses week is fine and the trip to GOSH not too stressful. Hate trains too, all that crisscrossing platforms and panicking about missing the connection (I have issues!) grin

Isitme1 Mon 03-Dec-12 17:55:31

Oooooo sneeze what did they say about dd??
Fx everything is well

Hope everything is well granny and everyone else

Has anyone seen tooloud lately? ??

sneezecakesmum Mon 03-Dec-12 20:46:10

Hi. The scan went really well, baby is perfect size and the blood supply to the placenta is good still on asprin because of the notches (which have now gone). She asked about the sex of the baby and didnt get the answer we all wanted. Sorry for being down about it...horribly shallow I know. It will only last a day or two and then the joy of having a healthy baby (so far) will kick in. I think its just too similar to the first time as well.

No one is to mention this shock please in RL or I will be a gonner grin

Hope young isitme is putting on a bit of weight so his peg fits better and you are well and coping with the pg smile sickness is horrible. xx

Isitme1 Mon 03-Dec-12 20:52:26

I think im having a girl just because with with ds I had loadsa acne and I loved food but now I eat set meals. Hardly any snacks. Atm im hungry but don't fancy food confused

sneezecakesmum Tue 04-Dec-12 12:35:26

DD said this pg is totally different and lots of sickness etc so convinced a girl but def not. He's got all the equipment. Lol. We're all fine with it now as long as he's healthy xx

Isitme1 Tue 04-Dec-12 14:59:08

Awww bless. Hope they are both doing well x
Dont mind either way as long as they are healthy.
I hope I can (and baby) can breastfeed this time. I tried with ds but he kept coming out in a rash after feeds so I went for a bottle. I felt such a failure with him.
But now I've got a bit more experience so hopefully should be fine x

gallivantsaregood Tue 04-Dec-12 19:02:55

Hope everyone is well.......moan alert I'm afraid!

Well DS is pooing blood ...AGAIN! He did this last month after a course of co-amoxiclav. I though C-dif, did mention to the docs ( Luuk's own conultant was off on holiday) and I was assured that his samples were all clear. Well it seems they didn't test for C-dif, just other bugs! Just had Trimethoprim for possible UTI and bleeding again! Also blood in his gastric juices ( combination of old and new and not very much). Consultant has now requested C-Dif test and and a sample to test for inflammation of the gut ( colitis I assume?). No idea what is going on with this boy!. In the past when he was really unwell he had LOADS of really toxic antibiotics without any of this. And now, his gut is, as far as we can tell, much healthier but now doing this......Grrrrr! Thankfully he is not really unwell with it. Just a bit worrying as there should not be blood/mucus coming from his bottom at all!

Anyone know if it could be a reaction to something he's not tolerating? Previously if he didn't tolerate something he would vomit it straight away. Wondering if it could be a sign of intolerance. Have given him both egg and honey fairly recently which he used to vomit but now appears to tolerate......maybe just affecting lower gut now?

Any ideas ladies ??


sneezecakesmum Tue 04-Dec-12 20:15:16

Ulcerative colitis. Auto immune disease. ? None really only sympathy sad
After the experts have ragged him around, maybe back to the simplest foods, baby rice, porridge, easily digestible stuff to rest his bowel. ?

sneezecakesmum Tue 04-Dec-12 20:16:50

Looking forward to little baby boykin....what a difference a day makes smile

Isitme1 Tue 04-Dec-12 21:48:07

Have no advice to offer sorry gali just some virtual hand holding and positive vibes coming your way.

Sneeze im very happy for you.
X x
I think end of the day as long as the child is healthy all is well
maybe a girl next time lol wink


gallivantsaregood Wed 05-Dec-12 07:14:05

Thanks folks. Congratulations Sneeze......once you meet him you'll be so glad he's a he x

Isitme: how are you feeling? How is DS? X

2old2beamum Thu 06-Dec-12 21:23:50

Hope all is well with you and all your Scallywags. Life is hard sometimes but we have no choice.

Oldsneeze hope you are all still OK and if DDGC is another boy so what (I am a boy's mum SHHH I love my girls to bits)

Galli sorry you are having problems with DS's guts we have had problems with DD's bowels for 3 years constant diarrhoea mucus etc, For over 2 yrs I have been banging on about her immune system, Went into hosp October for colostomy oh dearie me she has a primary immune problems, Off to GOSH next week to be taught how to give gammaglobulin infusions weekly. Don't stop nagging 'til you get an answer. Sorry if I am teaching my grandmother to suck eggs HA HA, How is your placement going?

DGD I have not forgotten you how could I smile How is my beautiful DGGS and my DGGC hope you are OK please let us know

Sleep well alll you little scallywags grin XXX

gallivantsaregood Fri 07-Dec-12 11:39:05

Thanks 2old: When DS was on formula tube feed his guts were exactly the same.Even tested +ve for A1 antitrypsin in his poo! Malabsorbtion issues and was clinically malnourished. Chronic diarrhea but still needed sennokot or his gut just didn't work at all. Everything just stayed inside but because it wasn't a solid mass he wasn't clinically 'consitpated'!! He was still in pull ups when he started school because of it. He just couldn't control it. After a couple of weeks on BD his diarrhea and other associated problems vanished!!

How is everyone else doing? xx

sneezecakesmum Fri 07-Dec-12 18:28:03

It's really weird how well tolerated the BD is for DGS compared to fresbini on its own. He doesn't bat an eyelid when we put 100 mls down the tube. The puking has mostly stopped. It's just feeling our way slowly but the aim is to give him more energy than he has at the moment. Stopping the afternoon sleep as it may help with the night waking. He had 3 huge poos in one day so I'm sure he was bunged up and the movicol worked really well! There's no reason the BD couldn't get rid of the need for movicol. Light at the end of the tunnel I hope smile

gallivantsaregood Sat 08-Dec-12 09:16:28

Yip, we can use food for luuk if hr is a bit backed up. I day of no poo results in a pukefest! We use orange juice or flaxseed/linseed and they work fab for Luuk :-D

Glad the puking has all but stopped. That alone makes a huge difference for everyone!

sneezecakesmum Sat 08-Dec-12 12:17:06

Dd has flax seed oil and fresh orange juice and I am going to make a prune purée too just in case!

Poor DD is sick with worry (me too) she was exposed to cytomegalovirus at work and has no immunity to it and it can cause serious disabilities in newborns and lifelong disabilities epilepsy etc. She is 23weeks pg now. We know all the stats and how rare it is but we knew someone who's little boy had a severe infection at birth and is also disabled. When you are pg common sense goes out of the window and she's got a sore throat and headache so will get tested in a week or so. Sure it's jut a cold but sick with worry and fed up with feeling so anxious with this pg sad. .... Just having a moan so ignore me...

gallivantsaregood Sat 08-Dec-12 15:37:21

Oh Sneeze, how worrying for you all. Everything crossed that baby is completely unaffected by it.

Hugs xxx

P.s. Flaxseed oil won't have the same ' keep bowels moving effects' as the actual seed cod all the fibre is removed xx

sneezecakesmum Sat 08-Dec-12 16:45:09

Thanks galli. I know it's a remote risk so just totally neurotic, but I know everyone on the SN site shares similar neuroses grin comes with the territory. Anxiety levels high til the next blood test. Want to put DD in a glass box til babe is csectioned out.

Ta re flax seed. I had a Krupp coffee grinder for years which was brilliant for grinding anything to a powder. Thought I'd clean it by filling it with hot water blush yep..dumb! Anyway will have to buy a new one. Dd is thrilled with the villaware blender, does a cracking job smile

gallivantsaregood Sat 08-Dec-12 17:40:05

Sneeze would prob get away with throwing some seeds in then. ........ I don't grind anything first. We have a VM but others do nuts and seeds in Villaware. Could do a little and push some through an extension set to check? 5g is usually enough to get Luuk going. Xx

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