I am exhausted. Completely and utterly beat.
Mentally and physically.
We had our Paeds appointment today (previous posts here and here) and really, they don’t like to give straight answers do they?
The short results – both children are positive for the Coeliacs gene, but of course that is no guarantee to them actually getting coeliacs, the Paed was quick to point out, no matter that they both already HAVE symptoms of coeliacs AND a clinical diagnosis of such.
He wouldn’t talk about the fact that Amy already gets horrendously sick on gluten, loses weight and is miserable. Or that Isaac stops sleeping, gets eczema and is miserable.
Oh no, until you’ve got a biopsy in front of you with a positive result, no diagnosis.
Which actually, is the same thing he seemed to think of the Ehlers Danlos. He threw around a lot of words like maybe and possible.
Plus, way to get me annoyed, he said ‘the geneticists seem to think both children will develop Ehlers Danlos’. In hindsight, I am fuming at that statement and should have told him outright that unlike coeliacs, EDS is not something you ‘develop’. You either have it or you don’t and it gets worse.
Arghh.
It frustrates me that I seem to know more about EDS and the management thereof than the doctors we see.
Sigh.
So I am exhausted. Relieved that it’s nothing more than Coeliacs, but frustrated that I’m treated like a silly uneducated mother when I’m in the hospital with the kidlets.
But yay! Upside!
{ 17 comments }
I’m going to do some flopping around in your honour right now. Glad it wasn’t bad news but it certainly sounds like a bad appointment for many other reasons. Doctors! Who’d have ‘em!
Glad it wasn’t news you didn’t really already know the answers too!
The doctor sounds like a twat that should be reading up more on his patients! >_<
Just medical double-speak to cover his arse litigation-wise and (being sarcastic here) why should he trouble himself over a condition he’ll only see on a couple of patients a few times per year? (oh, yes, I knew a couple of docs who thought like that, grrr).
Great that it’s only Coeliacs !
Aaaargh, that just makes it so much more stressful for you that you seem to be the one giving the answers to the Doctors! Could you find a new pediatrician? But then I guess there is no guarantee that another one would know any more about EDS.
Good luck, hope you get some straight answers soon.
Yay upside indeed! Must be a bonus that no new problems have been found even though the Paed’s attitude to those you already have was less than desirable.
Silly doctors and their silly doctor-speak. Gah! But, I am Yay-ing over here for yah.XO
Oh I hate it when their tragic little ego’s won’t allow them to admit a mere patient might have expertise they don’t. Grr
Good news on the celiac gene though. Fingers crossed flopping isn’t too floppy
BG Xx
ARG. And what makes it worse, what if you weren’t an educated mother? What if your kids didn’t have someone capable of reading and understanding the information that is out there? What happens when kids aren’t born to excellent advocates? It’s an international problem and makes me want to scream.
But still, Coeliacs…
sighhhhhhhh
I’m so sorry that your paed treated you like that but I also understand how you are feeling.
Everything you say is so true.
I am in the middle of trying to write my own ranty post about doctors (you know, without sounding too bitchy, selfish or self pitying – heh)
In the end, V, Coeliac markers equals coeliacs in my mind, it’s why I put Ivy on GF and *you* know, you do. You are an amazing, wonderful Mum for your babies – you do know better than the doctors.
Lucky for that paed you *are* and educated, elloquent mother.
That paed sounds like he needs to do some research.
The thing I’ve learnt is most doctors don’t do rare and most doctors are not interested in rare either but if those doctors are the only ones you have, then you need to teach them, you need to show them.
I know that’s ripe, coming form me, the ultimate head in the sand queen when it comes to doctors but I like to joke that I am teaching our paed so that the next kid who comes along, like Ivy, will be treated better and the Mum too.
I hope you can get some emotional rest soon, V. The worrying is so exhausting, the advocating, the vigilance.
Biggest hugs.
While it’s true you don’t develop EDS, it certainly can be diagnosed much later in life. Most of my ex’s family have it without the dislocating, but do have wound healing issues. My daughter wasn’t diagnosed until 16 because we had no idea it was a problem until her shoulder started dislocating. I will, however, give you a tip for when your children are school age: Get a doctor’s note to restrict their activity in gym class. It will only aggravate the dislocation problem.
It’s very sad when we know more than our medical professionals do.
Hmpf! Doctors and their “maybes”. i’m reminded of the Japanese weather forecasters.
“Today it may rain, or it may not.” Ha Ha.
Thank goodness YOU know what is going on and what to do.
I hate when I catch myself speaking that way.
Eczema is really so itchy and i cant help but scratch it. Corticosteroid is a heaven sent because it can relieve the itchiness and redness. “
A brief comment before I go read articles I should really be focussing on. My nephew is autistic. In a nutshell, even with her nursing background, even just comparing with other mums, my sister-in-law knew something was not right, but the child care nurses called her an over protective new mother. Eventually a paediatrician agreed something was wrong, but they don’t diagnose autism at 16 months, despite the fact that he had strong indications. My sister-in-law took things into her own hands, got advice from sources around the world and started him on a learning program with people experienced with children with intellectual disabilities, especially autism. She didn’t wait for the confirmed diagnosis. She figured she had until he was about 7 y/o to make the brain-sponge soak up the majority of what would set him for life. Trust you gut instinct and go after options that impose little if any harm to your child. My sister-in-law was right; I suspect that your down-to-earth attitude will prove you right more oft than not too.
Comments on this entry are closed.