Gracie said Aaron is holding his own, but it doesn't sound good. They
are trying to avoid a chest tube because he now has an infection of the
large incision they had to make for the second surgery :-( He's also
lost so much blood that they are planning on doing a transfusion either
tonight or tomorrow, but because of his IgA deficiency it may make him
sicker. He's lost so much blood that he's on what they call the blood
conservation program meaning that if they need blood all the tests have
to be run with only one vial a day.

Gracie also said that he's very constipated and has bile coming from
his button drain. He's a very sick little boy so if you're the praying
type please do. His name on caringbridge.org is aaronczup, but she
hasn't been able to do an update in awhile.

Thanks,
Michelle-AKA Zombie Mommy
www.caringbridge.org carissamaya

Eleanor,

((((((HUGS))))))girl!!!!! You sound just like me with Carissa and it does sound like you are in for a long battle :-( I hate to say it, but it sounds like you won't get anywhere until you get to the major hospital route. I fought with all of Carissa's docs and tried to nail them down on a gameplan and they got so frustrated that they actually sent me to the other hospital!!!!!!!! They even put in her records that they couldn't treat her because we weren't satisfied with their care!!!! Long story, but it all turned out for the better.

I think it's horrible that we constantly have to worry over the care of our kids and then that the government will come in and snatch them up at will. It's too much and simply ridiculous, but I think most of us on this board have dealt with the same thing :-( It sounds like you're doing a wonderful job and CYA so try not to worry to much about that part of it.

I definitely agree on the pedi and GP, get them to draw as many bloods as you can think of for whatever sounds like it fits. That's an easy enough request and test that they should be able to at least accomodate that. Our pedi will do this for me if I have the research/reasons behind my request and they make sense :-) She's only turned me down once or twice which is nothing in the grand scheme of things!

Which doctor is considered his main care provider Gp or pedi? That person has a very strong vested interest in his care. That is the person that you need to really nail down with a plan for care. I would tell them EVERYTHING going on and even mix in the other two to an extent (who knows it may be genetic like mito). Make sure your next appointment with that doc will allow the time necessary as it will need to be a long visit. Ask them to be as specific as possible and mention ALL of your concerns and thoughts. Ask about the inpatient feeding clinic as well as second opinions. I understand what your dh is saying about all the doctors. Mine did the same thing!!!!!! I had to override him though in that we went for second opinion (not much choice after the first GI yelled at me (literally) in her hospital room and put that remark about their care in her chart!!!!! again long story, ask me later!) and it turned our world around!!!!

I don't remember if you were on the group yet then, but I was REALLY STRESSED about it then. Everyone here knew that I was pushing for a tube and I got scared when pedi called the second GI and called me to tell me that he knew the first one well. I was terrified that the trip would be in vain, but like she pointed out they would have to know each other and just because he knows him well doesn't mean they practice the same! The second GI really surprised us and did EVERYTHING I had asked first GI to do!!!!! He did see her struggling to eat while we were there though, but he reviewed her records before we ever arrived and already had a gameplan if I was willing. With a second opinion you're not getting another doc involved in that sense that your dh may be thinking. I had to point this out to mine as well. When you get a second opinion it is just that. You get their opinion and then you decide which doctor to continue on with never messing with the other doctor again :-) It was a Godsend for us. We now have a GI we love:-) I don't know how it is there, but here in the states the pedi told me not to worry, because she felt at the time we were fighting, that a g button was probably necessary. She told me not to worry about it because we could always find her a doc that would be willing to do it. Technically she probably could have sent us to a surgeon and had it done herself, but I think she was hoping for confirmation of her thoughts first. Either way we fought this battle for 6 months!!!!! but finally won. Now the other docs can eat crow!!!!

Hang in there! if he needs the button he'll get it. I'm just kind of confused why they would deny the button but not the fundo. Fundo has more inherent risk and they could do away with both problems by making the button a J button. You might want to ask the pedi or GP if that might be a better option.....have him take the meds and eat as much as possible ny mouth (since he's probably regulating himself on comfort) and then the rest of his missing calories/nutrition you could tube.

Just a few thoughts for you. I'm definitely praying for and thinking about you. I know all too well what you are going through. I felt your despair not all that long ago :-(

(((HUGS)))

Michelle-AKA Zombie Mommy

www.caringbridge.org carissamaya

--- In feeding@yahoogroups.com, "Eleanor" <eleanordyne@...> wrote:
>
> Thanks Michelle!
>
>
>
> Since Peter thinks we've got too many docs on Thomas' case and that's why
> they can hand off from one to the other second opinions probably wouldn't be
> worth it until we screw them to the ground on him to start with.
>
>
>
> My parents are overseas at the moment but I talked to my mother this morning
> and she voiced the concern that they might either put Thomas in hospital or
> take him from us. We get copied in with correspondence from the surgeon so
> I'm fairly confident that no trouble is going to come from there. If I have
> the courage I'm going to ask the GP if there are any rumours wandering in
> that direction. The paed rescued us from the hospital paed and has always
> given us the impression she trusts us so hopefully there won't be a problem
> from that end.
>
>
>
> Typically, I've now thought of lots of questions we should have asked the
> surgeon – why, if suppressing the acid and retraining Thomas to eat is going
> to work, then why is surgery – to stop the acid getting into the wrong
> places not going to?
>
> I should have thought and pointed out, as I have now done to Peter, that the
> terrible state Thomas was in at 3 months old and ng tube fed, was ON liquid
> losec and at that stage he didn't have the psychological feeding issues to
> contend with, so why's it going to work now? I might see if it's possible to
> email him with questions to get further information.
>
>
>
> At least Peter doesn't think we should leave it 6 months like the surgeon
> suggested and I've discovered that we should be able to get the liquid losec
> so I'll get the GP to prescribe it tomorrow so we can start that battle and
> have more to tell the paed on the 26th.
>
>
>
> I'm going to insist that we do the FTT bloods and see if his biochemistry is
> in balance or whether his persistent undernutrition is having impacts there
> too. Again that will give us more info for the paed. I'll also get the GP to
> ask the paed to fill in the forms for Thomas to get the Neocate Advance
> (that process will take a while) so at least he'll be getting 100 cal per
> 100ml instead of 67 cal per 100 ml! It also has more carbs, protein and
> calcium.
>
>
>
> I have spent since he was a few months old being told that if he doesn't get
> enough to eat then all sorts of terrible things will happen to him, his
> development and his brain. So I'm going to ask how close to that line he is,
> how urgent is this really? Maybe I'm worrying for nothing, but I doubt it,
> why would the doc have set up 2 weekly weighs? But I'm going to stick with
> the regular weighs – I'm NOT being blamed for anything going wrong this
> time. As soon as he starts to lose weight then it's their problem to respond
> to.
>
>
>
> We'll have to try this medical route at least until we see the paed, not too
> far away now. Then we have to ask the hard questions of HOW THEY think he's
> going to eat, thrive and grow, and what kind of cut off point they have for
> action in terms of alternative feeding and or surgery. No one is giving us
> any kind of steady ground rules here and we just keep struggling on and not
> succeeding. The surgeon said first off no tube, then next appointment said
> if weight doesn't improve he'd seriously consider a tube, then last
> appointment no tube unless not keeping to some kind of curve – which he's
> not! I don't know!
>
>
>
> The paed appointment is going to be a `fun' one I think and hopefully Peter
> will do his bit and actually speak up this time! He only has breakfast and
> dinner with Thomas – and only dinner on nights he doesn't have rehearsals –
> and he's about to launch into some intensive rehearsals shortly. So it's
> easy to forget how bad Thomas actually is when you only have one meal a day
> with him.
>
>
>
> Last night Peter got all excited because Thomas ate about 3 serving
> spoonfuls of rice and a teaspoonful of chilli. I'd only served Thomas 2
> spoonfuls of rice and Thomas asked for more! It's fantastic but it has to be
> seen in the context of 1/3 of a slice of plain bread for breakfast, about a
> 2 x 3x2 cm bit of choc brownie for morning tea. 1/3 of a slice of bread for
> lunch with 2 tiny bits of cold roast pork, afternoon tea refused and only
> 400mls of formula over the day. So yes, he ate, yes he was hungry, yes he
> asked for more – but over a day that's not enough to survive or thrive!
> Often he refuses the brownie too and often he can muck around with breakfast
> even after eating a teaspoonful of rice for dinner – surely he's hungry
> then! Besides, there aren't very many calories in boiled rice!!
>
>
>
> It's depressing really – with Nicholas still mucking round with food as well
> I have food battles 10 times a day at the moment!
>
>
>
> I think we've actually got to chase the real root of the problem – why does
> he not like to eat, is it pain, is it a learnt behaviour, is there some
> underlying condition causing the on going problems – an endocrine problem, a
> metabolic problem, does he have mitochondrial disease? Some of the reading
> I've done suggests that could be a possibility.
>
>
>
> He's been tested for cystic fibrosis, we'll get him tested for celiac
> disease but that's unlikely I'd think. I remember when we were really
> struggling with William they tested for CF, celiac's and talked about
> testing for growth hormone. Since Thomas is having problems with his hair
> maybe it's a thyroid problem – that could be tested for in a simple blood
> test too. His nappies tend to be really smelly – is it maybe a kidney
> problem – or is it just that he doesn't drink enough and he's slightly
> dehydrated all the time? A urine sample – never fun to try and get in a
> child who isn't toilet trained – can give us answers on that one.
>
>
>
> Thomas is a maze which has to be sorted through slowly, calmly and
> logically – but we need to know what time we have to do it in and if
> necessary do something to ensure we have that time for the trek! We need to
> look at the whole picture of Thomas – he has a speech delay which the speech
> therapist is now saying points to a processing disorder (yay, that spells a
> fun future with reading and writing…), his gross motor skills are a bit
> delayed too – is that due to lack of energy and coming back to his nutrition
> or is it a sign of the bigger problem?
>
>
>
> But we need to have a clear and absolute plan that no one is going to muck
> around with – if he does x, loses y amount, or doesn't gain anything by z
> then a happens. We have a time line to try the losec and if he isn't
> improving at all by m time then w happens. That's what we need now and I
> think by asking both the GP and the paed how close Thomas' undernutrition is
> running to the line of doing harm to him then they might have to stop and
> think. Having to state an opinion other than `he'll be fine, don't worry
> about it' will require them to stop blowing everything off so totally.
>
>
>
> Maybe we need to go to Auckland, to Starship, the major paeds hospital in
> the country (there are only 2!). They have all sorts of experts there in all
> sorts of fields, including having the only in patient feeding program in the
> country. But first we have to exhaust the possibilities of what the paed and
> GP are prepared to give us.
>
>
>
> Eleanor, mummy to -
> William, 33 weeker 10 years,
> Nicholas, 36 weeker 7 years,
> Thomas, 36 weeker now 3.
>
>
>
> _____
>
> From: feeding@yahoogroups.com [mailto:feeding@yahoogroups.com] On Behalf Of
> itsnopicnic
> Sent: Wednesday, 30 July 2008 3:34 p.m.
> To: feeding@yahoogroups.com
> Subject: [feeding] Re: Saw Surgeon
>
>
>
> Oh Eleanor, GOOD GRIEF!!!!!! I wish there was something I could do. I know
> how hard it is when they sit there and tell you well you just need to make
> it happen, you need to make them eat XYZ and if they don't they'll just
> wither up on you. We had the same problem with Carissa. She aspirates!!!!!!
> BAD, and all they did for awhile was tell me to figure it out on my
> own!!!!!! What do some of these dumb docs think? That we can just open there
> mouth and pour it in.....even if I could it wouldn't have worked with
> Carissa now would it!?!?!?!?!?!?!?!?
>
> Are second opinions an option where you live? It took much screaming,
> crying, and traveling to get other opinions to find a doc that would give
> her the button and he agreed with me that it should have been done instead
> of the NG when they did the NG. Long story, but I still have a lot of
> regrets about how her first hospital visit played out. I just keep reminding
> myself that it could have ended up worse and that she may have died if they
> did transfer her. You have to keep fighting!!!
>
> See if you can get second opinions as soon as possible and thirds even if
> necessary and yes your DH REALLY needs to step up to the plate now. You can
> tell him I said that. My dh doesn't usually get involved but boy when he
> does!!!!!! We discovered a fraudulent charge on a credit card that I paid
> off months ago and we got a letter in the mail saying we owe money now
> because I was behind 3 months payments. When I proved to my dh that I had
> paid it off and not used it and what was wrong he called to take care of it.
> I thought the person on the other line was going to quit their job before he
> finished!!!!! He's good when he has to be :-)
>
> At the same time he does need some serious testing it sounds like, but if
> it's going to take that long I don't understand why they wouldn't do a
> button to be on the safe side to hold him until the results get back. If
> that happened here in the states and anything happened to him it would be a
> lawsuit. I do think from reading your posts that they are being careless and
> negligent by not having a solid gameplan for you. Their plan seems full of
> holes. I'm soooo sorry you have to fight so hard for your baby :-( I agree
> with your weigh ins too. CYA is best right now for sure. Let it be a
> constant reminder for them too!!!! Maybe if it gets bad enough someone else
> will step in or someone will get their head out of their $%^ long enough to
> take care of him. I'm praying for you that it doesn't get that bad before he
> gets the help he needs and deserves though!
>
> ((((((HUGS))))))
>
> Michelle-AKA Zombie Mommy
>
> www.caringbridge. <http://www.caringbridge.org> org carissamaya
>
>
> --- In feeding@yahoogroups.com, "Eleanor" eleanordyne@ wrote:
> >
> > Thanks Michelle,
> >
> >
> >
> > It's a wet and miserable day here so I need to get the kids off the
> computer
> > long enough to do some research!
> >
> >
> >
> > The thing that gets to me is that Thomas was on the liquid losec when he
> was
> > 3 months old and so thin, he was on the losec granules when he got
> referred
> > to the dietician because he wasn't eating enough – why is this going to be
> > any different this time?
> >
> >
> >
> > I don't want to endanger Thomas' health with a major weight loss by doing
> > the nissen, but as far as I can see he's failed medical therapy! Still we
> > want to have tried everything before jumping to something like that which
> > may well not work any way. So, I'm going to make Peter help to give Thomas
> > his losec because I know it's going to be a screaming battle and going to
> be
> > horrible. I've discovered that they have relaxed the criteria on the
> liquid
> > losec and he should be able to get it – so I'll get the GP to write a
> script
> > on Friday so we can start the battles and have been trying for a good
> while
> > before we see the paed on 27 August.
> >
> >
> >
> > The surgeon reckons that within 6 months of ppi therapy he'll be eating
> just
> > fine, the feeding therapist says it's a really long term project – how
> many
> > kids has the surgeon helped to eat? Both the surgeon and the paed have had
> > the view reflux kids come right quickly once you sort the reflux. They
> > clearly have no real understanding of feeding difficulties!
> >
> >
> >
> > I've had it thumped into me since he was about 3 months old that if you
> > can't get enough calories in then dreadful things are going to happen to
> him
> > and his brain – so how long has he got? How long is a piece of string? If
> we
> > leave it all 6 months am I going to have an almost 4 year old weighing
> less
> > than a 1 year old? Is he still going to be 11.5kg?
> >
> >
> >
> > I've told Peter he has to step up and ask the questions about what Thomas
> > needs to eat and how people actually think it's going to be achieved
> because
> > I'm not getting anywhere. He was supposed to do that last appointment with
> > the paed but she had a student with her and spent ¾ of the time explaining
> > things to the student instead of talking to us.
> >
> >
> >
> > In the meantime – breakfast used to be Thomas' best meal – he's stopped
> > eating a handful of cornflakes and now only eats about a third of a slice
> of
> > plain bread…
> >
> >
> >
> >
> >
> > Eleanor, mummy to -
> > William, 33 weeker 10 years,
> > Nicholas, 36 weeker 7 years,
> > Thomas, 36 weeker now 3.
> >
> >
> >
> > _____
> >
> > From: feeding@yahoogroups.com [mailto:feeding@yahoogroups.com] On Behalf
> Of
> > itsnopicnic
> > Sent: Wednesday, 30 July 2008 1:57 a.m.
> > To: feeding@yahoogroups.com
> > Subject: [feeding] Re: Saw Surgeon
> >
> >
> >
> > Eleanor,
> >
> > ((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
> > button. I really don't understand it. I do however understand not
> > doing the fundo. With everything Gracie is going through with Aaron
> > I'm glad it was never done on Carissa. It really should only be done
> > after all meds are proven ineffective and reflux is severe. It just
> > stinks that you can't readily get the same drugs we can and that you
> > have to wait so long and fight so hard to try all the drugs!
> >
> > I'm so sorry, but it seems like you may have been thrown into my
> > world of the undiagnosed. Let me know if you want any links on that.
> > Your statement of him losing his hair jumped out at me like a flaming
> > arrow because I knew I had read it somewhere before when I was
> > researching things. Your surgeon is partially right. I just can't
> > believe the GP or pedi didn't pick up on these things and test for
> > them before sending you to surgeon since it's so hard to get in to
> > see him :-( Here's a link that will take you to a site that has
> > several links on possibilities of what may be wrong with him based on
> > stomach pain, poor growth, and hair falling out. There are several
> > types of celiac listed and maybe you telling him the hair bit was
> > like a flaming arrow for him too. I don't know. Check out this info
> > and let me know what you think he fits into if any. Depending what
> > they find he has you may have an answer for Nathan too.
> >
> > http://symptoms.
> > <http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair->
> > wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
> > loss/poor-growth.htm
> >
> > I don't know how things are in your country, but maybe the surgeon
> > was afraid to do the surgery without a proper diagnosis or maybe a
> > proper diagnosis would lead to a better non-surgical treatment. I
> > don't know. All I know is that all surgery has risks and the button
> > is less risk than the fundo. Hope I've helped you some. I know I had
> > to really fight long and hard for Carissa's button. Remember it took
> > me about 6 months from the time I actually started fighting, but
> > technically she should have gotten hers when she was only 5 weeks old
> > meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))
> >
> > Michelle-AKA Zombie Mommy
> > www.caringbridge.org carissamaya
> >
> >
> >
> > __________ NOD32 3304 (20080728) Information __________
> >
> > This message was checked by NOD32 antivirus system.
> > http://www.eset.com
> >
>
>
>
> __________ NOD32 3311 (20080730) Information __________
>
> This message was checked by NOD32 antivirus system.
> http://www.eset.com
>

I was sent another excellent link by my friend. This is a link to a NEW
FREEBIE PAGE for this week so I thought I would,  share it with the
group...enjoy!

The link goes to a web page where you can collect TONS of items for
FREE! There is so much on offer that its definately worth the visit.
Keep your eyes open for new freebie pages, they post them each week!

http://www.freebietelegraph.com/?page=8

When you have had your freebies, be nice to your family and friends and
pass on the link above, like I did!

Take care and have a great week!

-------------- Original message --------------
From: "Wolf-Zeolla, Donna" <dwolf@...>

Today Natalie had her surgery to close her leaking g-tube hole. I was up most of the night and she fought very hard to not go under. I finally had to wrap her strong arm behind me and restrain her weaker arm and legs so they can put the mask on her face. She has a very strong will and fight in her. She carried on for a good hour before falling asleep and then have night terrors while napping at the hospital.

Part of me is happy for her strong will because that is what made her survive her prematurity, but another part of me is so upset to have to see a child go through so much at such a young age. It really makes me wonder why. It is so unfair that she has to go through all this stuff and others don't. Not that I wish they did. I just wish my daughter didn't have to.  Thankfully she is now home and sleeping and I am just an emotional mess from it all. I hope this is the end to all these procedures. She will be staying home for a week to recover, so the stitches don't open and she heals. I am tired of going through all of this.

Thanks for listening and your support. I am glad I have this place to go to talk about it, because others around me just don't understand.

Donna
Mom to Michael and Natalie

-------------- Original message --------------
From: "itsnopicnic" <itsnopicnic@...>

I talked to Gracie today :-) Aaron was in surgery yesterday getting his
PIC line. They came in to explain things yesterday to Gracie and it
turns out that his fundo didn't truly rupture, but that it was leaking
through the holes of the stitches because it stretched a little since
his tissues are so thin with the mito.

They are now talking about the possibility of needing a chest tube
because he has plural effusion, pneumonia, and his left lung is
partially collapsed. It sounds like his pain is under better control
this time. For those of you wondering he did finally pee!!!! He's also
been peeing and pooping since his surgery yesterday which is great
news, because his bowels were still asleep from the very first surgery.
This is the first time since then!!! She said she was trying to get her
friend Erin to update his site today.

Michelle-AKA Zombie Mommy
www.caringbridge.org carissamaya

Today Natalie had her surgery to close her leaking g-tube hole. I was up most of the night and she fought very hard to not go under. I finally had to wrap her strong arm behind me and restrain her weaker arm and legs so they can put the mask on her face. She has a very strong will and fight in her. She carried on for a good hour before falling asleep and then have night terrors while napping at the hospital.

Part of me is happy for her strong will because that is what made her survive her prematurity, but another part of me is so upset to have to see a child go through so much at such a young age. It really makes me wonder why. It is so unfair that she has to go through all this stuff and others don't. Not that I wish they did. I just wish my daughter didn't have to.  Thankfully she is now home and sleeping and I am just an emotional mess from it all. I hope this is the end to all these procedures. She will be staying home for a week to recover, so the stitches don't open and she heals. I am tired of going through all of this.

Thanks for listening and your support. I am glad I have this place to go to talk about it, because others around me just don't understand.

Donna
Mom to Michael and Natalie

I talked to Gracie today :-) Aaron was in surgery yesterday getting his
PIC line. They came in to explain things yesterday to Gracie and it
turns out that his fundo didn't truly rupture, but that it was leaking
through the holes of the stitches because it stretched a little since
his tissues are so thin with the mito.

They are now talking about the possibility of needing a chest tube
because he has plural effusion, pneumonia, and his left lung is
partially collapsed. It sounds like his pain is under better control
this time. For those of you wondering he did finally pee!!!! He's also
been peeing and pooping since his surgery yesterday which is great
news, because his bowels were still asleep from the very first surgery.
This is the first time since then!!! She said she was trying to get her
friend Erin to update his site today.

Michelle-AKA Zombie Mommy
www.caringbridge.org carissamaya

Oh Eleanor, GOOD GRIEF!!!!!! I wish there was something I could do. I know how hard it is when they sit there and tell you well you just need to make it happen, you need to make them eat XYZ and if they don't they'll just wither up on you. We had the same problem with Carissa. She aspirates!!!!!! BAD, and all they did for awhile was tell me to figure it out on my own!!!!!! What do some of these dumb docs think? That we can just open there mouth and pour it in.....even if I could it wouldn't have worked with Carissa now would it!?!?!?!?!?!?!?!?

Are second opinions an option where you live? It took much screaming, crying, and traveling to get other opinions to find a doc that would give her the button and he agreed with me that it should have been done instead of the NG when they did the NG. Long story, but I still have a lot of regrets about how her first hospital visit played out. I just keep reminding myself that it could have ended up worse and that she may have died if they did transfer her. You have to keep fighting!!!

See if you can get second opinions as soon as possible and thirds even if necessary and yes your DH REALLY needs to step up to the plate now. You can tell him I said that. My dh doesn't usually get involved but boy when he does!!!!!! We discovered a fraudulent charge on a credit card that I paid off months ago and we got a letter in the mail saying we owe money now because I was behind 3 months payments. When I proved to my dh that I had paid it off and not used it and what was wrong he called to take care of it. I thought the person on the other line was going to quit their job before he finished!!!!! He's good when he has to be :-)

At the same time he does need some serious testing it sounds like, but if it's going to take that long I don't understand why they wouldn't do a button to be on the safe side to hold him until the results get back. If that happened here in the states and anything happened to him it would be a lawsuit. I do think from reading your posts that they are being careless and negligent by not having a solid gameplan for you. Their plan seems full of holes. I'm soooo sorry you have to fight so hard for your baby :-( I agree with your weigh ins too. CYA is best right now for sure. Let it be a constant reminder for them too!!!! Maybe if it gets bad enough someone else will step in or someone will get their head out of their $%^ long enough to take care of him. I'm praying for you that it doesn't get that bad before he gets the help he needs and deserves though!

((((((HUGS))))))

Michelle-AKA Zombie Mommy

www.caringbridge.org carissamaya

--- In feeding@yahoogroups.com, "Eleanor" <eleanordyne@...> wrote:
>
> Thanks Michelle,
>
>
>
> It's a wet and miserable day here so I need to get the kids off the computer
> long enough to do some research!
>
>
>
> The thing that gets to me is that Thomas was on the liquid losec when he was
> 3 months old and so thin, he was on the losec granules when he got referred
> to the dietician because he wasn't eating enough – why is this going to be
> any different this time?
>
>
>
> I don't want to endanger Thomas' health with a major weight loss by doing
> the nissen, but as far as I can see he's failed medical therapy! Still we
> want to have tried everything before jumping to something like that which
> may well not work any way. So, I'm going to make Peter help to give Thomas
> his losec because I know it's going to be a screaming battle and going to be
> horrible. I've discovered that they have relaxed the criteria on the liquid
> losec and he should be able to get it – so I'll get the GP to write a script
> on Friday so we can start the battles and have been trying for a good while
> before we see the paed on 27 August.
>
>
>
> The surgeon reckons that within 6 months of ppi therapy he'll be eating just
> fine, the feeding therapist says it's a really long term project – how many
> kids has the surgeon helped to eat? Both the surgeon and the paed have had
> the view reflux kids come right quickly once you sort the reflux. They
> clearly have no real understanding of feeding difficulties!
>
>
>
> I've had it thumped into me since he was about 3 months old that if you
> can't get enough calories in then dreadful things are going to happen to him
> and his brain – so how long has he got? How long is a piece of string? If we
> leave it all 6 months am I going to have an almost 4 year old weighing less
> than a 1 year old? Is he still going to be 11.5kg?
>
>
>
> I've told Peter he has to step up and ask the questions about what Thomas
> needs to eat and how people actually think it's going to be achieved because
> I'm not getting anywhere. He was supposed to do that last appointment with
> the paed but she had a student with her and spent ¾ of the time explaining
> things to the student instead of talking to us.
>
>
>
> In the meantime – breakfast used to be Thomas' best meal – he's stopped
> eating a handful of cornflakes and now only eats about a third of a slice of
> plain bread…
>
>
>
>
>
> Eleanor, mummy to -
> William, 33 weeker 10 years,
> Nicholas, 36 weeker 7 years,
> Thomas, 36 weeker now 3.
>
>
>
> _____
>
> From: feeding@yahoogroups.com [mailto:feeding@yahoogroups.com] On Behalf Of
> itsnopicnic
> Sent: Wednesday, 30 July 2008 1:57 a.m.
> To: feeding@yahoogroups.com
> Subject: [feeding] Re: Saw Surgeon
>
>
>
> Eleanor,
>
> ((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
> button. I really don't understand it. I do however understand not
> doing the fundo. With everything Gracie is going through with Aaron
> I'm glad it was never done on Carissa. It really should only be done
> after all meds are proven ineffective and reflux is severe. It just
> stinks that you can't readily get the same drugs we can and that you
> have to wait so long and fight so hard to try all the drugs!
>
> I'm so sorry, but it seems like you may have been thrown into my
> world of the undiagnosed. Let me know if you want any links on that.
> Your statement of him losing his hair jumped out at me like a flaming
> arrow because I knew I had read it somewhere before when I was
> researching things. Your surgeon is partially right. I just can't
> believe the GP or pedi didn't pick up on these things and test for
> them before sending you to surgeon since it's so hard to get in to
> see him :-( Here's a link that will take you to a site that has
> several links on possibilities of what may be wrong with him based on
> stomach pain, poor growth, and hair falling out. There are several
> types of celiac listed and maybe you telling him the hair bit was
> like a flaming arrow for him too. I don't know. Check out this info
> and let me know what you think he fits into if any. Depending what
> they find he has you may have an answer for Nathan too.
>
> http://symptoms.
> <http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair->
> wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
> loss/poor-growth.htm
>
> I don't know how things are in your country, but maybe the surgeon
> was afraid to do the surgery without a proper diagnosis or maybe a
> proper diagnosis would lead to a better non-surgical treatment. I
> don't know. All I know is that all surgery has risks and the button
> is less risk than the fundo. Hope I've helped you some. I know I had
> to really fight long and hard for Carissa's button. Remember it took
> me about 6 months from the time I actually started fighting, but
> technically she should have gotten hers when she was only 5 weeks old
> meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))
>
> Michelle-AKA Zombie Mommy
> www.caringbridge.org carissamaya
>
>
>
> __________ NOD32 3304 (20080728) Information __________
>
> This message was checked by NOD32 antivirus system.
> http://www.eset.com
>

OK so you want to go about 1/4-1/3 of the way down on the page to where
it says Results: 39 causes
--- In feeding@yahoogroups.com, "itsnopicnic" <itsnopicnic@...> wrote:
>
>
> UUuuugggggghhhh let me try this again. I see the link didn't work.
>
>
>
>
http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-lo\
\
> ss/poor-growth.htm
>
<http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-l\
\
> oss/poor-growth.htm>
>
>
>
>
> --- In feeding@yahoogroups.com, "itsnopicnic" itsnopicnic@ wrote:
> >
> > Eleanor,
> >
> > ((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
> > button. I really don't understand it. I do however understand not
> > doing the fundo. With everything Gracie is going through with Aaron
> > I'm glad it was never done on Carissa. It really should only be done
> > after all meds are proven ineffective and reflux is severe. It just
> > stinks that you can't readily get the same drugs we can and that you
> > have to wait so long and fight so hard to try all the drugs!
> >
> > I'm so sorry, but it seems like you may have been thrown into my
> > world of the undiagnosed. Let me know if you want any links on that.
> > Your statement of him losing his hair jumped out at me like a
flaming
> > arrow because I knew I had read it somewhere before when I was
> > researching things. Your surgeon is partially right. I just can't
> > believe the GP or pedi didn't pick up on these things and test for
> > them before sending you to surgeon since it's so hard to get in to
> > see him :-( Here's a link that will take you to a site that has
> > several links on possibilities of what may be wrong with him based
on
> > stomach pain, poor growth, and hair falling out. There are several
> > types of celiac listed and maybe you telling him the hair bit was
> > like a flaming arrow for him too. I don't know. Check out this info
> > and let me know what you think he fits into if any. Depending what
> > they find he has you may have an answer for Nathan too.
> >
> >
http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
> > loss/poor-growth.htm
> >
> > I don't know how things are in your country, but maybe the surgeon
> > was afraid to do the surgery without a proper diagnosis or maybe a
> > proper diagnosis would lead to a better non-surgical treatment. I
> > don't know. All I know is that all surgery has risks and the button
> > is less risk than the fundo. Hope I've helped you some. I know I had
> > to really fight long and hard for Carissa's button. Remember it took
> > me about 6 months from the time I actually started fighting, but
> > technically she should have gotten hers when she was only 5 weeks
old
> > meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))
> >
> > Michelle-AKA Zombie Mommy
> > www.caringbridge.org carissamaya
> >
>

OK so you want to go about 1/4-1/3 of the way down on the page to where
it says Results: 39 causes
--- In feeding@yahoogroups.com, "itsnopicnic" <itsnopicnic@...> wrote:
>
>
> UUuuugggggghhhh let me try this again. I see the link didn't work.
>
>
>
>
http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-lo\
\
> ss/poor-growth.htm
>
<http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-l\
\
> oss/poor-growth.htm>
>
>
>
>
> --- In feeding@yahoogroups.com, "itsnopicnic" itsnopicnic@ wrote:
> >
> > Eleanor,
> >
> > ((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
> > button. I really don't understand it. I do however understand not
> > doing the fundo. With everything Gracie is going through with Aaron
> > I'm glad it was never done on Carissa. It really should only be done
> > after all meds are proven ineffective and reflux is severe. It just
> > stinks that you can't readily get the same drugs we can and that you
> > have to wait so long and fight so hard to try all the drugs!
> >
> > I'm so sorry, but it seems like you may have been thrown into my
> > world of the undiagnosed. Let me know if you want any links on that.
> > Your statement of him losing his hair jumped out at me like a
flaming
> > arrow because I knew I had read it somewhere before when I was
> > researching things. Your surgeon is partially right. I just can't
> > believe the GP or pedi didn't pick up on these things and test for
> > them before sending you to surgeon since it's so hard to get in to
> > see him :-( Here's a link that will take you to a site that has
> > several links on possibilities of what may be wrong with him based
on
> > stomach pain, poor growth, and hair falling out. There are several
> > types of celiac listed and maybe you telling him the hair bit was
> > like a flaming arrow for him too. I don't know. Check out this info
> > and let me know what you think he fits into if any. Depending what
> > they find he has you may have an answer for Nathan too.
> >
> >
http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
> > loss/poor-growth.htm
> >
> > I don't know how things are in your country, but maybe the surgeon
> > was afraid to do the surgery without a proper diagnosis or maybe a
> > proper diagnosis would lead to a better non-surgical treatment. I
> > don't know. All I know is that all surgery has risks and the button
> > is less risk than the fundo. Hope I've helped you some. I know I had
> > to really fight long and hard for Carissa's button. Remember it took
> > me about 6 months from the time I actually started fighting, but
> > technically she should have gotten hers when she was only 5 weeks
old
> > meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))
> >
> > Michelle-AKA Zombie Mommy
> > www.caringbridge.org carissamaya
> >
>

UUuuugggggghhhh let me try this again. I see the link didn't work.

http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-loss/poor-growth.htm

--- In feeding@yahoogroups.com, "itsnopicnic" <itsnopicnic@...> wrote:
>
> Eleanor,
>
> ((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
> button. I really don't understand it. I do however understand not
> doing the fundo. With everything Gracie is going through with Aaron
> I'm glad it was never done on Carissa. It really should only be done
> after all meds are proven ineffective and reflux is severe. It just
> stinks that you can't readily get the same drugs we can and that you
> have to wait so long and fight so hard to try all the drugs!
>
> I'm so sorry, but it seems like you may have been thrown into my
> world of the undiagnosed. Let me know if you want any links on that.
> Your statement of him losing his hair jumped out at me like a flaming
> arrow because I knew I had read it somewhere before when I was
> researching things. Your surgeon is partially right. I just can't
> believe the GP or pedi didn't pick up on these things and test for
> them before sending you to surgeon since it's so hard to get in to
> see him :-( Here's a link that will take you to a site that has
> several links on possibilities of what may be wrong with him based on
> stomach pain, poor growth, and hair falling out. There are several
> types of celiac listed and maybe you telling him the hair bit was
> like a flaming arrow for him too. I don't know. Check out this info
> and let me know what you think he fits into if any. Depending what
> they find he has you may have an answer for Nathan too.
>
> http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
> loss/poor-growth.htm
>
> I don't know how things are in your country, but maybe the surgeon
> was afraid to do the surgery without a proper diagnosis or maybe a
> proper diagnosis would lead to a better non-surgical treatment. I
> don't know. All I know is that all surgery has risks and the button
> is less risk than the fundo. Hope I've helped you some. I know I had
> to really fight long and hard for Carissa's button. Remember it took
> me about 6 months from the time I actually started fighting, but
> technically she should have gotten hers when she was only 5 weeks old
> meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))
>
> Michelle-AKA Zombie Mommy
> www.caringbridge.org carissamaya
>

Eleanor,

((((((((((HUGS)))))))))) dear. I'm sooooooo sorry he wouldn't do the
button. I really don't understand it. I do however understand not
doing the fundo. With everything Gracie is going through with Aaron
I'm glad it was never done on Carissa. It really should only be done
after all meds are proven ineffective and reflux is severe. It just
stinks that you can't readily get the same drugs we can and that you
have to wait so long and fight so hard to try all the drugs!

I'm so sorry, but it seems like you may have been thrown into my
world of the undiagnosed. Let me know if you want any links on that.
Your statement of him losing his hair jumped out at me like a flaming
arrow because I knew I had read it somewhere before when I was
researching things. Your surgeon is partially right. I just can't
believe the GP or pedi didn't pick up on these things and test for
them before sending you to surgeon since it's so hard to get in to
see him :-( Here's a link that will take you to a site that has
several links on possibilities of what may be wrong with him based on
stomach pain, poor growth, and hair falling out. There are several
types of celiac listed and maybe you telling him the hair bit was
like a flaming arrow for him too. I don't know. Check out this info
and let me know what you think he fits into if any. Depending what
they find he has you may have an answer for Nathan too.

http://symptoms.wrongdiagnosis.com/cosymptoms/digestive-symptoms/hair-
loss/poor-growth.htm

I don't know how things are in your country, but maybe the surgeon
was afraid to do the surgery without a proper diagnosis or maybe a
proper diagnosis would lead to a better non-surgical treatment. I
don't know. All I know is that all surgery has risks and the button
is less risk than the fundo. Hope I've helped you some. I know I had
to really fight long and hard for Carissa's button. Remember it took
me about 6 months from the time I actually started fighting, but
technically she should have gotten hers when she was only 5 weeks old
meaning she had to wait 8 months!!!!! Good luck and (((((HUGS)))))

Michelle-AKA Zombie Mommy
www.caringbridge.org carissamaya

-------------- Original message --------------
From: "Amanda Marshall" <amandamarshall@...>

…urgh, I really hate dinner time!!! Silas just plain out refuses even if I offer him something I know he will generally go for. I’m at a point of do I even fight it, or do I just do a tube feed??

Amanda