Hi I was so shocked to see your message...

I have a sister with a diagnosis of hypermobility and fibromyalgia
along with hypothyroidism. After speaking to a few other mums with
hypermobility and Ehlers - Danlos I started to do some research.

I seemed to fit into Ehlers - Danlos type III. My daughter also seems
to fit quite a few of the symptoms... and her daughter (my
grandaughter is why I joined this site)

The swallowing problems I have had all my life. I was labelled a lazy
eater, because I'd eat some foods etc then as an adult gave up and
became a vegetarian as I found it so much easier to chew and swallow.
I can't even remember the last time I could swallow a pill.

Anyway back to my grandaugther. She is 19 months old, been treated
for reflux since she was 3 weeks old. she has spent her whole life
choking and gagging or and vomiting. Luckily the drugs control most
for her, so mainly now its choking when eating (only weighs 9.5kg)
This week she had an endoscopy and a pH/Impedance test and we are
waiting for the results.

In my opinion she has a motitily problem as without Domperidone she
poops marble shaped poop, with it she poops normally.

I have been researching this condition as I have wondered if there
may be a way that if we have got Ehlers - Danlos that she might have
it and that it just shows in a different way for her and because she
is still very young.

What got me most about what you wrote in your message was the fact
that your child can swallow normally for so long then it all goes
wrong again.... I have said since Jade was born, that it seems like
every few weeks (sometimes only days) it is like she's forgotten how
to swallow. She is always choking. Now we are at the, that made me
choke so I dont want to try to eat it again stage. Her weight has
stayed the same for a couple of months now. If we stop meds for tests
etc, it always takes her ages to get back to her 'controlled' normal,
but it is usually a long walk to get there.

Sorry if I waffled

Jan

p.s. I phoned a helpline for Ehlers - danlos once and I spent most of
the conversation helping the person on the phone with their reflux as
they have it really bad... sounded like a failed fundo to me