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.
Is he back on antibiotics then?
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
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.
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.
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 :)