quick update from the hospital!

today was the big day.

hes done really well considering!

ive been told that if all goes well we will be going home on monday but i doubt it as im going to do

dr thomsons head in about more tests.

we saw the aneatheatist, a pead and a gastric paed today. the gastric was dr rao and he was

brillian. so kind and gentle but knew what he was doing.

he came last.

before him was the normal paed and i asked about intolerances and he said its highly

unlikely that its that as the fortini milk is slightly hydronlised or something,

he said the swelling could because of the constipation even though he had passed stool

5 mins before the pic.

anyway looking forward to seeing dr rao tomorrow will mention it to him

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Permalink Reply by Mannismummy on April 12, 2012 at 21:58

they have started him on 48 hours of antibiotics and are keeping a close eye on him

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Permalink Reply by Beverley on April 12, 2012 at 22:41

Glad you sound happier. Dr Rao is lovely and I think pretty knowledgeable about allergies so worth asking him. Has he had the surgery today? Or something else? X

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Permalink Reply by Mannismummy on April 13, 2012 at 10:34

yep he had the surgery yesterday.

hes had diarolyte up since 6 pm yersterday and is tolerating it. they will start feeds today

the only problem is that the peg is a bit tight so they will loosen it later on today

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Permalink Reply by Jenny Rawling on April 13, 2012 at 12:35

Glad it has gone well. Fortini has milk proteins listed high up on the ingredients list (i.e. it's a main ingredient) and also has soya lecithin so think paed is talking rubbish! Also you are not excluding any of the MEWS main allergens (milk, egg, wheat, soya) from his solids, are you? Ask Dr Rao again! Hope he continues to make good progress and you are able to come home soon. Jen xx

Ingredients (vanilla flavour*)

Water, maltodextrin, glucose syrup, vegetable oils, milk proteins, sucrose, emulsifier (soy lecithin), tri potassium citrate, tri calcium phosphate, magnesium chloride, flavour (vanilla, contains milk), di potassium hydrogen phosphate, calcium chloride, choline chloride, carotenoids (contains soy) (ß-carotene, lutein, lycopene), sodium L-ascorbate, potassium chloride, potassium hydroxide, taurine, ferrous lactate, zinc sulphate, L-carnitine, nicotinamide, DL-a tocopheryl acetate, copper gluconate, retinyl acetate, sodium selenite, manganese sulphate, cholecalciferol, D-biotin, calcium D-pantothenate, thiamin hydrochloride, chromium chloride, riboflavin, pyridoxine hydrochloride, pterolymonoglutamic acid, potassium iodide, sodium fluoride, sodium molybdate, phytomenadione, cyanocobalamin.

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Permalink Reply by Mannismummy on April 13, 2012 at 13:57

He was a fairly new paed.
Th dietician was lovely, she recommends the nutrini rather than fortini.
He's in a bit of pain. Can't wait til I see dr rao.
Ask him what he thinks
X

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Permalink Reply by Jenny Rawling on April 13, 2012 at 16:04

I don't think that's any different! See nutrini ingredients below - whey protein, sodium caseinate, soy lecithin. They are not for children with CMPI.

Of course we can't say he has CMPI or other food intolerances but a lot of the things you've said about him could point towards that and it should have been ruled out by now. If he is tube fed any of these and he is acutually reacting to milk protein he will continue to get worse. Hope Dr Rao is more helpful.

Nutrini inngredients...

Water, maltodextrin, vegetable oils, whey protein concentrate (from milk), sodium caseinate (from milk), emulsifier (soy lecithin), fish oil, acidity regulator (citric acid), di potassium hydrogen phosphate, sodium chloride, tri calcium phosphate, potassium chloride, calcium hydroxide, tri potassium citrate, sodium L-ascorbate, choline chloride, carotenoids (contains soy) (ß-carotene, lutein, lycopene), magnesium hydroxide, potassium hydroxide, taurine, ferrous lactate, zinc sulphate, L-carnitine, nicotinamide, DL-a-tocopheryl acetate, retinyl acetate, copper gluconate, sodium selenite, cholecalciferol, manganese sulphate, D-biotin, calcium D-pantothenate, thiamin hydrochloride, chromium chloride, riboflavin, pyridoxine hydrochloride, pteroylmonoglutamic acid, potassium iodide, sodium fluoride, sodium molybdate, phytomenadione, cyanocobalamin.

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Permalink Reply by Mannismummy on April 13, 2012 at 20:35

No one seems to be listening about cmpi. He said his job was to put peg in and
Check it today. He's not had a poo since wednesday. No one really bothered
But me and
They have stopped his omeperzole.
He needs it.
I just found that out.
Wait til I see tomorrows dr!
X

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Permalink Reply by Jenny Rawling on April 13, 2012 at 21:45

Isn't that the whole problem; that they are all focussing on their little bit and nobody is looking at the bigger picture?

It's really tough on you, but in the end it comes down to you are the person who cares most about him and you are the one who has to advocate for him. Is there someone who can come to support you and back you up if you feel they are not listening to your concerns? It's very hard to stand up to "the medical experts" and of course their knowledge and experience deserves respect, but in many cases they are proved wrong so don't think they are infallible.

What is plan B? Plan A goes something like they send you home in a few days, tube feeding fortini, off meds.... and then what? At the very least make sure you have a follow up booked in a short period of time in case things are not improving.

Hope you both have a peaceful night. I know how hard it is to get any rest in hospital. Jen xx

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Permalink Reply by Mannismummy on April 13, 2012 at 22:09

well ive spoke to the nurse and told her he's still refluxing and she said the gastric nurse is coming to check his tube in the morning so its worth telling her.

they have been lovely here so far!

the doctor seemed very inexperienced to me that said its a slightly hydrolised formula.

ive said im not leaving until i see dr thomson and he sets up more tests. i will push for more info on cmpi when i see him.

ive been told his tummy swelled that much as his body has been deprieved of nutrients and couldnt handle the protien.

it just made me think of 3rd world children :( stuff to do wtih malnutrtion. i felt like such a horrible mother.

he looks so healthy, hes glowing.

hes still in pain due to reflux.

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Permalink Reply by Beverley on April 13, 2012 at 22:31

That may be right re the protein and nutrients. We know a lot on here about food intolerance but probably not so much about the other causes of reflux and other health problems. Good for you, asking to see Dr Thomson. I said the same. Refused to deal with the others however lovely Dr Rao was. Tell him in detail all the symptoms you've observed and see what he has to say. Good luck.

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Permalink Reply by Mannismummy on April 14, 2012 at 18:38

I was telling his nurse today that I'm not leaving until he's done something properly.
His peg looks slightly infected. He was on 48 hours worth of ivab.
Lo keeps drawing his legs up in pain. He's been swabbed to check for infection.
He's perked up now though
X