Reflux, FTT and further testing

[7rugrats]

My DS has reflux and FTT. He is 10mths old and 4.7kg.
We have been seeing a pead and dietitian to try and get him to gain.
He is on Infatrini (presciption high calorie milk) and we add duocal to his food.
He drinks his bottles and eats three good solid meals a day.
It is still not making any difference.
He throws up a lot...but there seems to be more to it than that...because he is getting a huge amount of calories and still not gaining.
We saw his pead yeasterday...she was shocked at how 'scrawny' (her word) he was and very worried.
She wanted to hospitalise him but considering our circumstances (7 kids and DH can't get time off) she is bringing him in as a daystay patient.
I am taking him in on Monday for a heap of test...inducing sweat test, chest xray, blood tests and stool sample.
We will also see a gastro pead, respiratory pead and the dietitian again.
She mentioned cystic fibrosis which has left me extremely worried.
She also would like to put a NGT back in for extra night feeds...which I am a little sad about.
I am stressed and scared for my little man.
Has anyone been through similar things.

[faith72]

sorry I don't have any advice for you but just wanted to send you big hugs - I can imagine how stressful and worrying it is.

I hope you find answers and he is able to gain weight.

[TripleTime]

Ask for them to check for pyloric stenosis. If his gut isn't closing off, it will cause him to vomit. Just a u/s while his drinking.

[7rugrats]

Thank you Faith72


Ask for them to check for pyloric stenosis. If his gut isn't closing off, it will cause him to vomit. Just a u/s while his drinking.
That was one of the first things they checked for months ago when they first labeled him 'Failure to thrive' and they ruled it out.
They have also done a barium swallow and bowel xrays.
He has not even gained 2kg in the 6.5 months he has been home.
Even with the vomiting with the amount of calories he is on he should be gaining a lot more.
It is hard not knowing why....it gets you down.

[TripleTime]

Has to be something else that isn't easy to see. Maybe check again on a full stomach.
Does he get worked up before he vomits? Like upset enough to make himself sick?

I know how stressful it is. While J doesn't vomit (often), no matter what we feed him, he still doesn't gain.

[7rugrats]

Has to be something else that isn't easy to see. Maybe check again on a full stomach.
Does he get worked up before he vomits? Like upset enough to make himself sick?

Yep it has to be something else...which is why we have to go in for all the tests and x-rays tomorrow.
He doesn't get worked up at all...he just spews and continues on...sometimes smiling while doing it.
The infatrini is about 4 x the calories of normal formula and we add 2 teaspoons of the duocal and calorie load with butter and cream...the dietitian says we have pretty much exhausted their options.
I absolutely hate the term Failure to thrive!!!
She said will put a NGT in on Monday for night feeds.

[Nowhere]

HUGS, which pead do you guys see at PMH, Just curious ?

The CF testing is a pretty standard test they do at PMH for bubs that are FTT it was one of the first diagnosis that they looked at for my little monkey. I know its scary as hell isnt it, But it is a good place to start with ruleing things in and out. There is also alot of treatment available for CF these days.

Im glad they are doing testing on your little ones stools, if he is malabsorbing part of his feeds they will be able to try him on a more specialised formula that is more broken down, Infintrini is GREAT for calories but if they cant tolerate the feed its pretty much useless as its a hard one to break down in comparison to neocate and elecare and alfare etc

The term FTT is HORRID, I hate it, DD failed to thrive her whole life so far, she is 12 kilos now at 4.5 and that is only because she ahs been given IV top ups for 5 months this year, she was 8.9 kilos earlier in the year when she was having her surgery, So we had to go back to the iv food.

Good luck with all the testing, I hope it all goes well and you get some asnwers

With the NG feeding, I know it sucks big time to go back to feeds, But it sometimes is the only way, Do you know if he toelrates cont NG feeds ?

HUGS

[7rugrats]

HUGS, which pead do you guys see at PMH, Just curious ?
Dr Kretza. She is great :D



The CF testing is a pretty standard test they do at PMH for bubs that are FTT it was one of the first diagnosis that they looked at for my little monkey. I know its scary as hell isnt it, But it is a good place to start with ruleing things in and out. There is also alot of treatment available for CF these days.
It is frightening...hopefully it just rules it out.



With the NG feeding, I know it sucks big time to go back to feeds, But it sometimes is the only way, Do you know if he toelrates cont NG feeds ?
I am don't know. He has not had continuous...only normal NG feeds and IV tpn.

Thnks for your help.

[Nowhere]

Dr Kretza. She is great :D


It is frightening...hopefully it just rules it out.


I am don't know. He has not had continuous...only normal NG feeds and IV tpn.

Thnks for your help.

Oh im so glad she is your pead, we see her as well and we LOVE her, she is awesome nothing is to much trouble, She is the expert on FTT bubs, She took Mik on as a 3 year old under 8 kilos. She works well with the other drs as well which is a big help.

The good thing about the continuos feeds is they can go at a slow rate so some have a better chance of tolerating them than they do the bolus feeds or oral feeds. Is the dietician that you guys see Kelly Josh, she was the green team dietician for a long time but is covering someone else at the moment I find her to be great also, she managed to find a feed that Mik can actualy not react to.

We are at PMH all the time so if you ever want to catch up for a coffee let me know.

I think you know one of my friends from PMH Kelly ( ceals mum) she was saying the other day about chatting to another premmi mum in resp clinic that also had seven other kids, She was saying how cute your bub is

[7rugrats]

Oh im so glad she is your pead, we see her as well and we LOVE her, she is awesome nothing is to much trouble, She is the expert on FTT bubs, She took Mik on as a 3 year old under 8 kilos. She works well with the other drs as well which is a big help.
Good to hear such positive feedback about her. I am very happy with her.



Is the dietician that you guys see Kelly Josh, she was the green team dietician for a long time but is covering someone else at the moment
We have been passed on from one dietian to another through phone appt. It was so frustrating because I had to go throough everything all the time. Finally we have been sllocated to one dietian (which I think is Kelly) and she rang on Friday after we saw Dr K and said that she personally will be handling Maxx's case and I will not be passed around...hooray!!



We are at PMH all the time so if you ever want to catch up for a coffee let me know.
That would be great. :D



I think you know one of my friends from PMH Kelly ( ceals mum) she was saying the other day about chatting to another premmi mum in resp clinic that also had seven other kids, She was saying how cute your bub is
Yep I 'know' Kelly from a prem forum and I am friends on facebook. I haven't meet her in person.
Cael is such a gorgeous little man...such a trooper. Are you on facebook?

[TripleTime]

You two can hunt each other down through my FB page.

[Nowhere]

Oh awesome yes that would be Kelly who sees Kenz she took Kenz on and doesn't pas her to the others which is great as everyone else had given up on her

Yerp I'm on facebook I will
Pm u my name on here

[7rugrats]

Quick update
Awesome news news...every thing cam back clear and normal :smiliedance::smiliedance:
Sweat test was negative for CF
Metabolic disorders negative
Iron, ammonia, CRP, Iron, liver, kidney, FBC all normal!!!!
I am so stoked :yelclap:
We can now rule out these things.
she is going to talk to our dietitian about the night NGT and see about training me up on it.
We go back next Friday for weigh in and to speak to her again.
Still haven't cracked the big 5kg yet...but hopefully next week...fingers crossed.