thank you! another update

I just want to say a big thanks to jenny and beverly! For helping put my point
Across to the drs!
The dr who said that fortini is slightly hydronilised has took my concerns seriously.
Today he had one of them mucus string like nappies. I told him exactly how it was
And how I thought that meant he reacted badly to the milk.
He said yup that's what it seems like but the dietican has to change his milk
Tomorrow.
He has put it down in his notes too.
X

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Permalink Reply by Jenny Rawling on April 15, 2012 at 13:04

Well done! I'd really push for either Neocate or Nutramigen AA when you see the dietician.

How's he getting on with the PEG tube now? You were concerned the site might be infected the last post I saw.

Jen x

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Permalink Reply by Mannismummy on April 15, 2012 at 13:54

Yep it does look like its getting worse.
They think the regular pain relief meds are masking
His temp so they have stopped pain relief.
He is uncomfortable but doing well
X

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Permalink Reply by Jenny Rawling on April 15, 2012 at 14:00

Is he back on antibiotics then?

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Permalink Reply by Mannismummy on April 15, 2012 at 14:28

Nope not yet. As he's had a lot of ab in his life they want to confirm
Its an infection so they have taken swabs around the peg
They waiting for temp to start too
X

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Permalink Reply by Beverley on April 15, 2012 at 15:26

Ah. That's great. If you can get Neocate or Nut AA, along with the peg it should make a big difference to his symptoms I'd think. Really hope so. X

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Permalink Reply by Mannismummy on April 15, 2012 at 21:58

hes in so much pain as the regular pain meds have stopped.

i feel helpless :(

ive emailed the dr thomsons sect and shes is away until tuesday :|

i will see dr thomson tomorrow i will make sure i do!

i need the rest of him sorted too.

i did a list for him:

at the a hosp in manchester his blood sugars were abnormal- one min too high next too low,

ears nose throat specialists were supposed to check for abnormality but no one been

gp thinks hes got asthma

he has controlled eczema

hes stopped breathing 4 times when he was younger

hes still in pain

intolerence?- mucus nappies that bridge the gap after closing and then opening

swelling in tummy

bad sleeping

constipation

immune system- keeps catching nearly everything. on antbiotics atleast once a month, in 6 weeks he had 3 lots of antibitocs and was starting his fourth!

i will just hand him his phone and say you read my list and tell me what you think.

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Permalink Reply by Jenny Rawling on April 15, 2012 at 22:09

Why have they stopped his reflux meds? The PEG isn't going to stop his stomach contents refluxing (is it?) presumably it's just so you can get enough nutrition into him without worrying about the feeding issues.

I feel really frustrated on your behalf that nobody seems to be listening or concentrating on anything other than their tiny bit of the jigsaw.

I'd want to know what the plan is re 1) meds 2) milk - campaign for a CMP free one 3) diet other than milk 4) follow up - when will he be seen next and what is the next step if he's not improved.

The other thing I'd consider once things are a bit more settled is a probiotic supplement if he's had repeated antibiotics. A lot of the ladies have found it has helped.

Hope you have a good night - best of luck for tomorrow with Dr T.

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Permalink Reply by Beverley on April 15, 2012 at 22:40

I'm not Mike Thomson but that list includes most of the classic elements of allergic gut issues. Hope he agrees with me and gets you some better treatment. Enjoy your retail therapy. X

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Permalink Reply by Mannismummy on April 15, 2012 at 22:13

i told the weekend dcs that i want him to have his reflux meds so they re-prescribed them.

they said the same thing

i just hope i get somewhere.

ive gt a banging headache- stress related i suppose

a good nights sleep is on the menu lol

during the say hes allowed out so im hoping i can find my way to the town centre and do some retail therapy.

i might actually book a taxi lol :)

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Permalink Reply by Beverley on April 15, 2012 at 22:41

If you join The Reflux Room on Facebook there are lots of mums of children with EGID and allergy problems and also mums of children who are peg fed. You might find it helpful. X

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Permalink Reply by Mannismummy on April 16, 2012 at 11:13

Dietician has been she said when that happens its malabsorption of the protien or something. The next milk that they will
Try is pepti or something.
Still waitng for dr t to come.
The otherr gastrics have been and they have told dr t
That I'm waiting
X

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Permalink Reply by Mannismummy on April 16, 2012 at 13:02

Right I've seen dr t and you guys are right!
He's got an allergic gut.
Now its figuring out what he's allergic to.

Just waiting for dietician to come to sort his feeds out
I feel like jumping for joy- as we know there was something else wrong
Thank you very much
X