Author Topic: overwhelmed  (Read 4536 times)

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Offline Jimbob

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Re: overwhelmed
« Reply #30 on: May 13, 2011, 08:27:08 am »
Good Luck, I hope they give yo the referral .

Kelly x



James has atopic eczema, multiple food allergies, asthma and late talker

Offline firsttimemummy

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Re: overwhelmed
« Reply #31 on: May 15, 2011, 18:03:45 pm »
Good luck with referral - remember that she may be fine with some dairy and not with others (I am fine with all, apart from cold cows milk).  We are now re-trialling dairy with Murray and so far he has been fine with all .... so it's either just cold cows milk, like me, or he has outgrown it ???

Not sure if/where I posted about my referral but basically (sorry for no doubt repeating) that basically a referral will help you ensure meeting nutrients etc but wont help THAT much with diagnosis, basically will prob suggest going dairy free for a while, then introduce 1 item at a time .... I have some leaflets I can photocopy and post (or attempt to email) with dairy free calcium sources etc

Good luck x
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

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Offline ~Emma~

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Re: overwhelmed
« Reply #32 on: May 15, 2011, 18:22:13 pm »
Thanks hon. Rang on fri but HV wasnt around and she didn't call back. Will try again tomorrow.


Offline firsttimemummy

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Re: overwhelmed
« Reply #33 on: May 15, 2011, 18:25:20 pm »
We got referral through our GP (HV just knows what is happening by me updating her)
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

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Offline LisaK1

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Re: overwhelmed
« Reply #34 on: May 15, 2011, 19:54:16 pm »
Emma, I've just read this whole thread and OMG, how very, very frustrating for you, upsetting and plain ridiculous.  It'll be the GP who refers you to a Paed won't it, not the HV (maybe it is different in Scotland).

I remember going through this being fobbed off by well meaning GPs (not that yours is well meaning, he/she sounds like an **se) and so many times I got an appointment in order to get things sorted and it always ended up with being fobbed off.  In the end I got an appointment with the GP and rehearsed over and over in my head what I was going to say.....I essentially said it like it was for me "this is difficult for me to essentially challenge your medical opinion, but I am so, so fed up of knowing there is something amiss with my child and feeling repeatidly ignored and dismissed, I am telling you I want and expect a referral to a Paed" I rehearsed it over and over before I went in.  

It was miraculous, I thought I'd have a battle on my hands and he just rolled over and said 'ok'.  Be strong and insist, it is your right and that is why you and all the rest of us pay our taxes.  We did have to wait quite some time for our referral to come through tho, so that offer from BBear is very tempting.  I was so so scared of cutting out the dairy (I ended up doing it myself because I just knew the reflux was caused by 'something'), we have never looked back and I have a very settled boy now in terms of nappies being normal and no more puke or wierd rough skin..... I felt for so long that I should follow the advice of my HV and GP but what a complete waste that was - they tried and meant well but they were next to useless if I'm honest.  It was my instinct that led to us dropping the dairy from H's diet, not the GP, HV or Paed!  The Paed prescribed drugs for the reflux which 'managed' things to a tolerable level but no mention was ever made of dropping dairy.....Happy to talk more if you want. Good luck tomorrow - can you take hubby or a friend with you to the GP to show united front?  Sometimes that makes them sit up and listen?
« Last Edit: May 15, 2011, 19:56:13 pm by LisaK1 »
My boy is 4!

Offline ~Emma~

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Re: overwhelmed
« Reply #35 on: May 17, 2011, 11:57:35 am »
 Thankyou for your support and input ladies.

 I have just had enough. My head is all over the place with it. So after feeling like a maniac mother by both my GP and HV I just went ahead and intro'd the second bottle of formula and have not restricted her diet or mine in terms of dairy or anything else.

 She has been up every 3 hours at night. Very, very constipated. Her skin has gone down now but 2 days ago flared really bad despite using meds for it. I'll try to post the pics and you can give me your opinion.

 I spoke to my HV again who said I need to try a casein based formula instead of a whey based formula. That is hungry baby milk' basically. I said she is not a hungry baby and already constipated ( I know hungry bub formulas can cause constipation in babies). She then said that it might help her go longer stretches at night though......


 ARGHHHHHHHHHH.....

 Why is she not listening to me? I am not even hardly feeding her at night anymore. Hunger is NOT the issue! 

 I am so frustrated. I am now waiting to hear back from a dietician that I insisted my HV refer me to. That could take well over a week and now I am in the midst of a nightmare not knowing what the hell it is causing her upset. She has eaten so many new food over the past week it could be bloody anything. I am so upset that I had my confidence shaken by these people to the detriment of my baby.
 


Offline firsttimemummy

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Re: overwhelmed
« Reply #36 on: May 17, 2011, 12:10:17 pm »
I spoke to my HV again who said I need to try a casein based formula instead of a whey based formula.
That would work if it is the whey part of the cows milk that is the problem (I think that is my issue as I think whey proteins are mainly destroyed when heating milk over 72c).  If it is any other issue then it wont work.

To be honest, I would do what you think is best, regardless of what the "professionals" say, I am assuming you are sensible enough to know what I mean!  The dietician will help you ensure you are meeting her dietary needs if you are going dairy free, but probably wont help with diagnosing what part of dairy upsets her, apart from showing you how to do a dairy free trial and how to reintroduce food.

I overheard someone today saying her grandaughter constantly has a cold and can't sleep for it and the doctor keeps saying there is nothing he can do ... if was quieter I would have suggested to her about dairy! Just shows how widespread intolerence issues are ignored!

From what you have written it does seem that dairy could be the issue.  Remember some countries hardly eat any dairy and are fine!  Maybe if you are going dairy free more or less one bottle of formula would be okay?  But, just remembered, it was actually dietician who gave us Neocate samples then got doctor to prescribe it, then just phoned for repeat prescription, so if you dietician agrees you don't need to speak to the doctor at all!!

Hugs xxx

ps. mother's instinct is a great thing - doctors will eventually listen but sadly not always first time
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

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Offline rach321

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Re: overwhelmed
« Reply #37 on: May 17, 2011, 13:09:40 pm »
Are you doing soy free as well?
I've got a tin of SMA soy milk if you want it and I can also send over a tin of neocate if you want - I've got it on repeat prescription so I can always get more!

Offline deckchariot

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Re: overwhelmed
« Reply #38 on: May 17, 2011, 15:45:03 pm »
casein is the actual milk protein, so if that's her intolerance issue, switching to a casein based formula could actually make things worse :(

{{{{{hugs}}}}}} Emma - I wish I had more to offer!!
Michelle




Offline RachelC

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Re: overwhelmed
« Reply #39 on: May 17, 2011, 17:17:51 pm »
{{{hugs}}} Emma.  How frustrating no one (but us ;) ) is listening.  Yeah, CIO will clear up those gassy babies  ::)

While I am no expert on the matter, I would really stop as much dairy as you can (all but in formula) and keep a strict diary on what she is eating and what the day looks like.  With the hard evidence, you may be able to convince your medical people (HV, GP, whoever),that there is a correlation.  If you keep trying the dairy, you are getting nowhere and poor little one is suffering through all the changes.

Many more {{hugs}}


Proud to have breastfed for a combined total of 35 months


Offline firsttimemummy

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Re: overwhelmed
« Reply #40 on: May 17, 2011, 18:45:43 pm »
Thinking back - I just told doctor I knew he has problems with dairy (Murray, not the dr!!) but wasn't sure about other foods so wanted help.  Paed did stool sample test but it came back negative (dr google says though that sample needs to reach lab in an hour or so, which obviously didn't happen) but I know it is the cows milk that is the issue.  We stopped cows milk when Murray had ear infections and when we re-started his nose got really snotty again.  Doctor seemed to accept this as "evidence" - so just sound confident and say you are "sure" she has issues and want advice on how to do it.  Don't let them fob you off (Agree with pp about taking someone to support/advocate for you - or do phone appt so if gets too much you can hang up!!).

L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

still happily married, just not counting!

Offline Jimbob

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Re: overwhelmed
« Reply #41 on: May 18, 2011, 08:37:36 am »
I really hope somebody listens to you soon. We did not have much help from dieticians to be honest but some people do. We did see a good one at the Manchester Children's Hospital actually when James' Immunologist was trying him on a wheat free diet so obviously there are good ones out there.

Kelly x



James has atopic eczema, multiple food allergies, asthma and late talker

Offline Roseii

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Re: overwhelmed
« Reply #42 on: May 18, 2011, 10:22:42 am »
Emma ((hugs))) I am SO frustrated for you. I cannot believe how much I lucked out with my HV, it was her who suggested I go dairy free and my GP referred us straight away to paed who prescribed HAF. I wish I could refer you to all the people I've seen :'( (But you're hundreds of miles from me otherwise I would lol!)

I really, really would go df if you can. Try it for a week, see how she goes, then you will more than likely have some concrete evidence. If you have to, tell GP you are going back to work, can't bf and baby needs some HAF...

xxx
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hey you with the pretty face, welcome to the human race


Offline firsttimemummy

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Re: overwhelmed
« Reply #43 on: May 22, 2011, 19:36:07 pm »
just wondering how things are going for you now (re this post and your other general post) ???
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

still happily married, just not counting!