anyone else baby seen an endocrinologist for failure to thrive ???

[dantaz]

hi all
my 6month old has now been refered on to an endocrinologist as it has now also been determined that her length has stopped growing as well as not putting on weight
i was just wondering if anyone else has been through the same thing as this and what should i expect......
also they said that nevada may need an MRI of the brain but there is a 1 in 1000 chance that she could die :confused:(as they have to put her under)
what do u all think:no:

[kiwibird27]

WOW... my daughter has multiple medical issues and see's an endocrine doctor, among many of her specialists.. They are basically in charge of a babies hormones and growth, thyroid that kind of thing, and will probably give her a blood test to check all her levels and see if they can do anything to help... Is this the first specialist doctor u have seen... I assume u also have a neurologist if the brain is small??? For failure to thrive a dietician is also a must as well as a genetic's team to try and work out what is going on. In the early stages doctors say lots of things.. try and worry about only what is proven as fact rather than speculation.. They had my daughterDEAD AND BURIED on many occasion but they were all wrong!! Hang in there

My daughter has had several MRI's, CT scans and multiple surgeries all under GA.... They always tell us the same thing... there is a slight chance she will die.. I can say though she has had no complications everytime.. they just have to tell u lots of statistics so they can say your informed.

What other symptoms does she have???

[reAllytee]

WOW yeah I agree with kiwibird ....

Its a horrible label huh :hugs:

Sounds like they have said lots of stuff they shouldnt have quite said atm & have you all freaked out ...

I know the doctors we saw were bad enough !!!!

We were lucky in that G had shown he could put on weight so they werent willing to be to full on unless necessary but we still had bloods done etc but alot was also easier being that we were in hospital with him.

We have been very very lucky though so with G having a few issues worked out that has helped so hopefully in due time your little girl will have her issues sorted so that she can throw that label out !

[dantaz]

hey guys
we have been seeing a dietician for 4 months now as they thought they could put the weight on her through food but it still hasnt happened (she is 6 months and 5.7kg) and she wasnt premmie and 3.5kg born
she has been in hospital twice and they still did nothing
then she LOST weight 110g and finally i snapped and went to the childrens hospital and they assesed her and diagnosed the failure to thrive
as i had an appointment with the paed at GCH they were reluctant to do anything but gave me some suggestions including seeing an endo
so @ my appointment on monday i said this to the paed (up until this point i had only seen registras) and she said WHY would they say that
then she had a look at the chart and said that yes we have to see an endo and also have more bloods taken etc etc
so i am worried it plays on my mind that they should have picked this up earlier and im glad i persisted
i would just love some more info from anyone who has gone through this
Thank you

[Lunar]

Wow!:hugs:
I cannot say that I have been through exactly what you are.
My DD1 was only classed as borderline failure to thrive (in addition to her other 'problems') She didn't put on any weight for ages. She was born at 3.2kgs and was still wearing newborn nappies when she was 5 months old! lol
She was started on solids very early to help with the weight. She gained very minimal until she got used to eating. I had to try and squeeze extra milk feed into the day too.

Just couldn't read your post without replying.
:hugs:

I hope you find some answers. And if you don't push for more testing. Trust your instincts.

I totally agree with Kiwi and Ally, they are under legal obligations to tell you the risks and the worst case scenarios so that you understand there are small risks. Having said that, we each take risks every single day just stepping out of our front doors!
:hugs: again.

[Nowhere]

HUGS Sory to here your bubs isnt going well i hope that they endo and pead figure things out soon, Can be a night mare not knowing what is going on

I have no advice about the Endo drs as DD hasnt seen one yet although is being admited under them and neuro shortly to figure out some metobolic issues

how ever we are certainly no stranger to FTT DD is almost 3 and not yet 9 kilos she has always been very very small and not on the charts since she was about 4 weeks old

[kiwibird27]

Hi Again.. My daughter was an obvious failure to thrive so I didn't have to demand people to treat me correctly.. We had a specialist paed from 1 week old.... That is what I would recommend for u... get a good paed to manage everything... could be something simple.... could be more complex but u will need a GOOD case manager to guide u through... stay with the kids hospital and demand what u need, follow your instincts!!!

[kiwibird27]

PLEASE.... NO MORE REGISTAR, unless they are reporting back directly to your specialists!!!

[MeagsnEva]

Hi Danielle,
My little girl Molly was diagnosed with FTT at around the same age, we were already investigating other problems with her development so we had already had an MRI. It was scary but all the doctors & nurses were great about it & she has actually been under a general 3 more times!
Molly has a peg in her tummy which sounds aweful but she gets supplimented with a high calorie formula at night and is now 20mths and 9 kilos. She is still underweight but is much brighter and stronger!

[Kassiasmum]

Can I ask whether you and your husband are tall people. We went through this with our first dd who is now 5. She was never classified as FTT though her pead kept an eye on her from about 6 months, she would put on about 100grms a month and was always under the 3rd percentile for her weight. He tested her for heaps of things including celiacs disease and low iron levels, both of which stop them from gaining weight. We were referred to an edno, who advised us that they can't get accurate results from growth hormone testing util they are 3 years old.
Do you think there is something wrong with her or have the dr's just scared you with their talk? Trust your instincts. We never thought there was anything wrong with our DD and she has proven us right, after all the testing they finally agreed with us that it is in her genes to be small. She is now 5 and only weighs about 12kgs, is about 93 cms tall, so is quite small for her size. I have another DD who is 5.5mths, who was 3.94kgs at birth and has only just hit 5.5kg, with an average weight gain of 20grms a week. My GP is not worried because of her sister and she looks healthy, is doing what she is supposed to etc.
Hope everything works out for you and you get the answers you need.