When Isaac was five months old, way back in June of 2009 (right before my grandmother died and part of my family decided that they really didn’t approve of me and everything went to fucking hell) Isaac was hospitalised for a suspected intussusception in his bowel.
The ultrasound was inconclusive, but the screaming (good God, the screaming) was not and he was admitted for observation.
In the morning, whatever had caused the pain had eased, and we were sent home, none the wiser as to cause.
Then life went to hell for a while and a few years later, we are finally clawing our way back to some semblance of normality. Since then, both children have been diagnosed with autism, as well as Ehlers Danlos Syndrome – two added things that make everything else very complicated.
Isaac has bowel issues, that include, among other things, constant leaking. He’s in nappies and we’re trying to transition him to underpants, but when he is leaking poo nearly constantly, it is not all that easy.
We’ve been trying, with our Paed, to get Isaac’s issues sorted (bowel issues, autism issues, hypermobility issues) since some weeks after his suspected intussusception. Considering that was two and a half years ago now, I think we can say that we’ve failed. Or that we’ve been failed, because the medical system seems to see us, scratch their heads and send us away to “wait and see” or to “deal with his sensory problems and see what happens”. Basically, here is the too-hard basket, sit in it for a while.
He’s not constipated and nothing works to clear his bowels out. Nothing, nothing, nothing. We don’t have a day in which I don’t change a dirty nappy every hour, or underpants every 20 minutes. It’s wearing. It’s frustrating and honestly, I’m a little sick to death of it all.
This afternoon however, I went back to our GP (who until this point, assumed that the Paed was managing the children, because he didn’t see them except for sore ears and immunisations). I dumped the entire issue in his lap and requested to be referred somewhere better. To someone who specialises in bowel issues, bonus points if they know children as well.
And he did.
I’m not sure whether to laugh or cry, because it was that easy. It’s been over two fucking years of this bullshit – could our Paed not have sent us to a specialist YEARS AGO?
Why, yes. Yes he could. But no, no he didn’t. And life was so chaotic at that point, it was easier to let someone else do the managing for us.
It’s a waiting game now, again – but this time, there might actually be light at the end of the tunnel.
Or at least, someone who knows what they’re doing.
I hate the too hard basket.
I loathe lazy physicians.
I hope you get answers.
Fingers crossed you get someone who can help
and still my lovely your words only just scratch the surface…
Really hoping you and Issac finally get some answers!
I truly hope so.
It scared me when I came to the realisation that despite my lack of medical knowledge and/or training – I was the biggest factor in whether my son got an accurate diagnosis or not.
When he was three months old, I was made out to be a neurotic mess – and I have the clinical notes that say pretty much that.
Until two months later, when I found (with my own bogus referral!) and met our ‘wizard’ and my son received the care and surgeries he needed.
I still send the guy cards!!!
I wish you guys the very best care possible.
Apparently, it’s a luxury not a necessity.
Shar 🙂
Bitter much???!!!
It’s a pretty piss-poor effort.
Are you supposed to know how the whole system works, and who is responsible for what kind of care?? FFS, THEY’RE the experts, would be nice if they’d remember that once in a while.
Anyway, hope you guys get some answers. That must be SO tiring.
Oh love, that’s just crap. I hope this is the start of a brighter path for you. Much love xx
Answers would be good, yes, but treatments and actual fixing of the problem to the point where you won’t have to worry when sending Isaac to school, that would be so much better.
Good luck and I hope things get sorted quickly, or at least begun quickly.
I don’t know you but I so want to give you a hug. I hope someone is there to give it to you…
Really hope this helps, sweety. Loads of love. We need to catch up over Skype soon! xxxx
Good luck. It would be frustrating but I’m hoping and praying that you get somewhere this time. X
Oh that is pure hell. It is so wearing constantly having to be your own & your children’s health advocate, checking & double checking that you’re getting the best medical treat. I sympathise. I spent almost two years telling my GP that my son had hearing issues & allergy problems. Finally after speech & language delay & further pushing we have a child with grommets who has to catch up socially and needs to be dairy-free. Argh. And these people are supposed to be our allies.
Jeez. I’m not sure what to say, except to send you love and hope your new Dr gets things sorted. Looking forward to reading about your boy’s improving health. x
As an ‘oldie’ (47 with grown boys) I hear your frustration and I know this comes too late, but what I learnt with children with health issues is that you never take the ‘experts’ word for it, you question and prod and poke until someone takes you seriously.
If your gut tells you that you are not happy with the answer … then trust your motherly instinct.
Hope you get some well deserved releif and answers soon.
Love your blog BTW!
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