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

[isitme1]

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

Louisa, keep chasing up physio and OT and try to get hydrotherapy if it is available in your area. With a low tone baby/child it's important to get going early to build up muscles because low tone in the trunk and neck will affect swallowing.

Elibear saw the words 'thank you' written and made his sign for thank you! There's a lot going on in that battered wee brain!

Hope DS 1 gets some answers for his gastro problems, but the ASD thing sounds so awful for him.

Thats sooo cute!! Awww little el!

I cant believe I missed all the signs for asd for so long. At one point we thought he was then he seemed ok. Now all of a sudden he just seems to have got worse. He was stood in mums house today smacking himself. He was a little frustrated as he wanted something but had to wait (he wants everything someone else has) its also not very nice when we try to talk to him and hes not holding/keeping eye contact. I have tried to tell him please look at mama when your talking to me but doesnt seem to register.

We see the good gastric on Thursday so hopefully he can help there. He may be able to shed some light on the asd link too.

Hows jess and al?

Thanks everyone, SALT are going to go back and speak to his neurologist about their concerns. I'm seeing his paedatrition next week so I will mention it then, we are also seeing the genetics teams and his neurologist in 2 weeks so I will also pass on my concerns to them. We were told before he was even born that he is more than likely to develop cerebral palsy but couldn't tell us which type/ how severe, so I am wondering if this could be the start of that? All very new to this so not sure!!

Sorry not been much help or support here. Today would have been Stefen's birthday and Jonathan's birthday on Sunday.RIP my lovelies

Six months before Stefen died we twigged he was talking, he was 12 how could we have been so stupid!!!! He was saying "in the car" ""Aad" "school"and "muuuum" when he was poorly. Please never underestimate your beautiful children.

DGD does my DGGS have visual problems as Stefen slapped himself as it gave him visual stimulation
.
Sorry for a self indulgent post.

Love to all scallywags and sleepwell XX

Hes never had his vision checked and don't know how he will cope with having it checked. Will mention it to general paed next week.

Mw granny I have a ? What can I do to help these pains upper groin pains joining into my lady parts. Really hurts
Had some pain across bump too.

20ld. Thinking of you and your loss. So awful even to think about
Louisa. Hope you get some answers from the paed appointments but it's all very uncertain in the early days, and not something we would like to repeat. So stressful.

Ilove. Sounds like the dreaded SPD.

Things are ok here. Looking at some standers for el as he's gone a year with none! . Al is a cute little tinker

I did think spd was all about hip pelvic joints this is a lil lower. Ahhh well. Shit happens. Cant do much about it until hes out lol.

Whats a stander?

What is a stander it is a piece of equipment used for non-standing children to help them stand. As well as giving children a different perspective it also
aids digestion and kidneys. Found the best thing was to encourage head control. Both of mine use them at school. Too big to use at home in our totally unfriendly disabled house!!

Agree with Oldsneeze SPD affects the bones joining in front of your "lady bits"

Duuuuhhh. Sorry that question sounded stupid

thank you sneeze and granny. At least I know everything wont just fall out thats what it feels like sometimes

2old so sorry about your loss, thinking of you.

Ilovemonster I used a support band around the hips with ds1 and that really helped, might be worth a try.

Sneezecake thank you, I'm also going to mention to paed about his reflux as I'm sure it's getting worse again. He keeps crying out in pain and coughing a lot but has no cold!

Coughing is because of reflux. Ds has a 'chronic cough' and is 'asthmatic' apparently they are commonly found together.

I dont know about a bump band in this heat my arse is probably too big for it anyway lol

ds is constipated again despite only going 2 days ago. Think hes not fully opening bowels as it is really old poo thats coming out. Hes dosed up on docusate, movicol, liquid paraffin and lactulose today how much bloody more does he need. Im sure once he goes it will cover his sheets so didnt change them today.

granny sorry I forgot to say sorry about your loss
stupid pregnancy brain

Ilovemonster how are you feeling today? A warm bath can help with pain but again might not be greatest idea if it's warm we're you are?

I am wondering if ds2 is developing a chronic cough? He is also on 24hour oxygen so does occasionally cough but this cough is different and I'm sure it's because of the reflux as you can see him trying to swallow afterwards.

Im not too bad just trying to gear up for a very busy 2days! Tomorrow I have 3 appointments! And Thursday is a good 4 hours in the car with 2 dc! Ds1 sees his gastric on Thursday. 4hours is the price we pay but well worth it!

Will try to stop off somewhere nice foe half hour with dc.
Does sound like chronic cough. If you imagine all that crap coming up with reflux and irritating tonsils etc that causes the cough iirc.

How is everyone

Ilovemonster good luck with the gastric appointment today, I hope all goes well.

We saw ds2 paed this week and he believes the cough is because of reflux and has increased his reflux meds. We have also been referred for physio because he is so floppy, so hopefully we will from them soon.

I did think it sounded like that.

Currently waiting to ve seen. Been up 5.30am. Took us 2 hours to get here arrived early lol.keep getting funny looks of the idiots next to me as baby is on ipad (keeping him quite ) and ds is trying to play playstation lmao hes never done so before.

Hope all goes well ilovemonsters! Hope you had some support at this appt. sounds typical hanging about for hours and up at dawn!

Can anyone advise on giving gaviscon? OTC can be given from 6 and elbear is nearly that so we are looking at a slightly smaller dose. Jess thinks it might be reflux that elli has at night which disturbs his sleep (or a possibility iyswim) we're not sure but it might be worth a try as he does wake and arch backwards crying in the early part of the night. Do you give gaviscon before bed or mixed with the food?

His dad and grandad both suffer with reflux and on omeprazole for life as well as weak muscles from CP

What about kiddie gaviscon? If hes nearly six I suppose it should be ok. They dont normally put max doses on these things for age amd weight extra. Like ds2 dose for calpol is more than what is on the box and same for ibuprofen. Theres some leeway iyswim but would either try it at a smaller dose so if its 10mls then maybe 7.5 or if it's 5mls then 3mls or something like that. If in doubt dont give

they are going to do all scopes again so endoscopy, colonoscopy, bloods, wwireless ph and other tests and then see what results show

When ds was on gaviscon it was mixed in his bottle? Should be instructions on the box or bottle on when best time is to give

Hi everyone sorry for just getting back to you all but ds2 was admitted to pau (peadatric assessment unit) over night as he was doing silly things with his breathing again! We are home now and they have said we can turn his oxygen up higher at home if needed.

Ilovemonster good luck with all the tests, hope it all goes well.

Sneezecakemum we use infant gaviscon. We mix the sachet in 10mil of his feed then gentle push down the tube and then flush with water, we then do the rest of the feed straight away. We were advised by the hospital to give it this way. We give gaviscon 6 times a day with each feed but soon to be 5 as we are cutting out a feed.

Thanks for the gaviscon info. I think jess will give a dose in the evening then 4 ml instead of 5 ml as we don't want to go to all the bother of getting the same stuff prescribed, and it's just an experiment to see if that is the cause of the night waking.

Ilove. Hope all the tests go smoothly, but that's a lot of trekking about!

Louisa. So hate going near a hospital these days! Is the warm weather or maybe hayfever causing a bit or breathing difficulty?

Elbears SALT said to leave the ipad a bit with the communication app on it til a lot of bloody time consuming assessments are done by OT. Do they think we don't know him and what he responds to? So fed up with it all (through gritted teeth)

It is a lot of trekking with both dc and dh. Cant leave ds2 with anyone as he doesnt settle without me and dh cant stay with ds1 as he doesnt speak very good English so we all have to go lol.

How is el now? Did rhe gaviscon change anything

Gave el gaviscon sat night when I was staying over as jess was due to work and steve away all day but luckily jess got a day off! I sleep with el when I'm at jess house so I can get to him quickly and prevent the night terrors getting out of hand, and he always sleeps better with someone with him, so it's an anxiety thing I think. The gaviscon didn't seem to make a major difference but we are going to keep trying it for a while as even a minor improvement is worth going for and he did sleep really well after the 11pm screaming.

I hate using the chloral hydrate as it's such an addictive drug and might even make sleeping worse in the long run. Having said that I can't be there every night so it's a difficult situation.

Hi, yes we do think it's the heat that has caused the extra breathing difficulties as apart from the reflux aggravating things he seems fine. Hopefully we will have a better week.

Sneezecake I hope you see some improvement with the gaviscon, is there any other meds apart from chloral hydrate that you could try?

Ilovemonster I hope things get easier soon, must be so hard.

Sneeze could they try melanin (sp?) Thats supposed to help try regulatr sleep naturally. Its quite natural I think.
Louisa thats good you've had a better week.

took dc to Blackpool beach and both enjoyed it. Ds didnt do too well on the wet sand but loved the hard dry sand. Was going to do sea life top but was no parking :( so we went to a buffet in the evening.

Hv came over. Shes really ditzy. I must have told her 5 times that ds says his eys aren't working. She walked out and said I will follow up his hearing referral (needs that doing too) and when I said what about eyes she said whats wrong with his eyes

ds2 is on 91st centile for height and weight