get it out! thread 3

[littlemaemae]

I have moved this to child health board as I don't think aibu is appropriate anymore.
What began as a quick question has become 2 now 3
The support on these threads has highlighted the best qualities of mumsnet and I am so grateful to every lovely person who has supported me so far!

Lindor you are a genius

but check with the airline. some are very strickt with the 'one piece of handluggage' and will have you check in a bag (for £££ of course) at the gate.

Little mae, if have a toddler meitai baby carrier you are more the welcome to. If you want to try it out with littlemae I would love to send it to you. You're both having to deal with so much and you've had such a struggle to get the journey started to get her seen by the right people. I'd love to just offer some support and it's the only practical way I can think off. I don't use it anymore so it is just sat here on the house (with your name on it)
Pm me if you're interested, it's really easy to use and if she doesn't like it you can pass it on as a kindness to someone else

Alias that you, that is very kind. I will have a look at it ok Google and pm you I am about 4foot tall so I have to make sure it's nothing too big, I might topple over

Interestingly, we had a visit today from an old friend we see little of as he moved to be nearer his family after a serious heart attack. He is just at the one-year mark and trying to get fitness back. He goes on the treadmill everyday, and can walk for 15 mins without needing his spray. In real life, he can only walk for maybe 5 minutes, until he needs his spray.

So it shows that treadmill=easier walking and it's not just me!

Just checking in to say am thinking of you :)

Thank you giraffe,
Hope you are feeling a lot better now!

We are off to hospital soon.
Think DD had got a dodgy bottle of Senna, I have been struggling myself and it's not doing a thing! will get a new prescription

Is big sister better ?

She's a bit better, but not much. She has ENT problems so has regular throat and ear infections, bless her

What a miserable bunch we sound!! We are a happy household. Honestly!!

You sound lovely, just going through a bad patch. I can relate to that !

How did you get on today?

The doctor wants her to go back to a very very low dose of movicol, says there is no poo inside and that she probably isn't eating enough to generate much poo and the bloating is wind.
I just have to accept as much as I try to know what is going on inside DD I just don't have a clue and all the conflicting advice makes my head hurt.
I don't feel she is right, but she is the expert. And clearly I don't really know anything I am just going from the experiences we have had.
But she doesn't seem to understand nothing comes out unless it is liquidised.
She had some bloods done, is being referred to a dietician and maybe having the biopsy done but this doctor says short segment hursprung's doesn't exist

The main thing is that she is under the right people to test until we get a diagnosis. and once we get one, we have it and can move forward.

But can't help feeling that all this conflicting advice from HCPs means they are all talking a degree of rubbish!

The Girls passports came this morning though, so we are very happy and relieved!

Delighted to hear about the passports. At least that's done. Hope your little one gets a diagnosis.

poor you. and poor dd.
we had a lot of head shaking last year when my dc presented with unusual symptoms.
so much conflicting advice, we didn't know what to do.
still don't really. because it's so rare drs either haven't heard of it or 'don't believe' in it. what an insulting phrase.

What do they mean by "short segment" Hirschsprung's? Have they explained? I'm trying to figure out what that means and have no clue!

I think a holiday sounds wonderful. Have you informed your insurance company of all the ongoing problems in case she is poorly whilst you are away ?

green Im sorry you are having problems with dc's heath, I think sometimes you have to find out what it is yourself and ask them to disprove it. Hope all is ok soon.

Our local hospital said they thought it could be short segmented hursprung's, basically a milder form where only a short segment of the bowel is affected, so it is easier to go un noticed until the child is a little older.
I have looked it up and it seems legit. Lots of studies and statistics on it.

I haven't spoken to insurance yet, I wanted to make sure we were actually able to go!
Was worried about DDs passport, as both our names were spelt wrong on birth certificate!

Well I've just Googled "short segment Hirschsprung's" and there are countless (reputable) websites and scientific papers discussing it. I even found a paper which says short segment Hirschsprung's is more common than long segment Hirschsprung's. So whoever told you it doesn't exist must have got their medical degree out of a Christmas cracker

So frustrating when doctors say stuff like this. I got told once that there was no such thing as Interstitial Cystitis. There most definitely is!
Trust your instincts and keep pushing. I hope they do a biopsy soon. This has gone on long enough! Xx

Yes I know, it's reassuring you agree. For a moment I though we were being stupid.
I think it is something personal between her and our local hospital.
Wanting to prove them wrong at every turn.

Well anyway, we are back there in June and July so hopefully we can get what we need to done.

It's so overcrowded and a lot to take in visually with the ahem decor, and noise. It's a sensory overload. I struggle with hearing and have no idea what she says most the time so maybe that isn't helping my understanding.

Chocolate that is shocking, I thought that was a well known condition and there was no debate on it!

You need to be spoken to in a clearly audible voice, it's essential ; it's on the list of things you need to fight for. Exhausting !

Don't want to add to any confusion or more opinions but I have Ehlers Danlos Classic type, which is a connective tissue disorder), and have always had a very sluggish, inefficient gut and chronic constipation. I also get a lot of joint/muscle pain (walking can be v painful and I had very bad foot pain when I was growing up). My feet both turn in and I roll over on my ankles and sprain them a lot. Basically the connective tissue throughout the body is too stretchy and doesn't support the joints and muscles properly. I didn't get a diagnosis until I was in my 40's! And had been incorrectly diagnosed with fibromyalgia. Other signs of EDS worth checking for are:
incredibly soft, velvety, stretchy, easily bruised/damaged skin
frequent sprains, strains, aches and dislocations from hypermobile joints.
fatigue
high, arched palate and tooth overcrowding
painkillers/local anaesthetic often do't work well. (I need injection after injection at the dentist before numb. Need co-codamol/ibuproften to relieve average headache.

It was rheumatology that diagnosed DD (who has ulcerative colitis possible caused by EDS) and then mine was picked up on the back of her diagnosis. It's not a progressive condition and isn't life limiting or anything (apart from one very rare type which you would know she had by distictive appearance and translucent skin) and a lot can be done to manage it. The main feature of mine growing up was constipation. It is inherited so if your dd has it there will be close family members with features of the condition too.

Any progress for Littlemae ?