Get It Out! Update

[littlemaemae]

In April, my DD (3) was very poorly with a bowel obstruction, of sorts.
After suffering chronic constipation for most of her life.
with the support of lots of lovely MNers, we managed to finally get her taken seriously and she spent the best part of 2 weeks in hospital getting the blockage cleared.
I would link the threads but I am not sure how to do that!

Anyway, we have been to see the specialist a few times, not much has been done in the way of testing.
We suspect Hursprung's Disease. But the specialist seems to think the condition doesn't exist.
And wants to watch and wait rather than go straight into testing.

She is 3.5 years but is very small. She hasn't grown much at all since her 2nd birthday.
She is the smallest by far at nursery and very sensitive about it, all her clothes are falling off. Nothing fits.
She has been losing weight at each weigh in.
She also has problems walking any great distance and her feet turn in quite noticeably, one foot more than the other. Constantly tripping over.

The specialist feels the weight/ feet are not linked to the bowel problems and is sending her to see a different consultant. Saying it is 'neurological'

I mentioned hypermotility, but it was dismissed.

'Failure to thrive' has been brought up and I am really upset.
We have come home with something new to worry about and no answers.

I am blaming myself as I had anorexia when I was pregnant with her, maybe this has caused her some kind of problem while she was being formed.

It was a severe mental illness, there was nothing I could have done. I keep trying to remind myself. But still feel responsible.

Has anyone had any similar with their DC with the growth?

And does anyone maybe HCPs have any knowledge of weather this could be a result of my illness while pregnant?
She was a healthy new born, good weight, grew and fed well.

sorry to hear that (have changed name since your last thread) arses the lot of them

it is not your fault. never was. never will be. you are a great mum.

are your lovely pil still offereing a private consultation? or can you ask to be referred to a specialist hospital (gosh)?
poor you and poor dd!

You have the right to a second opinion - I'd ask to see a different consultant

Get them to test for coeliac again, especially if she is anaemic. I think some people don't produce the antibodies that the blood test checks for and get a false negative so it maybe an endoscopy is needed. Failure to thrive was a classic description used for undiagnosed Coeliacs before awareness of the illness was improved!

Fucking hell! (Sorry OP).
If the consultant comes out with that phrase again, point out that it is so antiquated that it used to be used in workhouses for the death certificates of children for whom a cause of death could not be found.
Could you seek a second opinion locally? I did for dc2's neurological condition, got taken seriously and given answers and medication.

Another vote for a second opinion, it doesn't have to be private...

If you have a half decent GP somewhere at your practice, can you discuss all this with them (I'd leave out the anorexia for now) and ask for another referral to someone else?

Thanks for replies,
The offer to go private was when it was an emergency situation, now she is under the care of a consultant, I don't think the offer is there anymore.

I think we will have to look into a second opinion, someone who is prepared to do the tests and let the results speak for themselves. It's. 3hr round trip as it is now, and feels like a wasted journey.
Our next nearest children's hospital is Birmingham. I have heard good things about it.
How do ask for a second opinion without appearing totally unreasonable and getting the consultants back up?

She is slightly anemic, but has been tested for ceoliacs 3 times and it's been negative. I think it is worth a retest though now she is back to eating normally.

I haven't mentioned the ED as I thought I would get a big MH problems sticker put on the notes and it might be a good excuse to shift the focus and not do the tests.
DP thinks it's important we mention it.

She starts school sept 2017 I feel like time is running out. Kids are already saying she smells, In an observant honest way, like kids do. And they aren't wrong. And teasing that she is a baby. The scales even flashed up 'baby' when she was weighed today

Ruby that is grim. I will use that next time!

you don't need to mention your ed.
your dd was born full term and with a good weight (iirc) and has a good diet now but is not growing as expected regardless.

Still going on ! No advice, I know nothing, but the current consultant sounds like a waste of your precious time. I hope someone can advise you about how you get her to GOSH or Birmingham for a proper diagnosis.

Birmingham is a brilliant hospital I would go in and listen if failure to thrive is mentioned point out she has been thriving till recently don't ask for tests say a different doctor suggested it could be X what did they think? Question rather than self diagnose many doctors hate patients who diagnose themselves (in my experience)

www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

I'm so sorry all of this is going on :( but please don't be blaming yourself (easier said than done I know!) None of this is your fault and you're being a great mum by pushing for her to get the best care in really ddifficult circumstances. I absolutely think it would be fine to ask about getting a second opinion. But would it maybe be worth waiting to see the neurologist? Hopefully they will either be able to help with a diagnosis/plan, or refer back to gastro and push them into doing more. They may even be able to refer you for a second opinion without you having to speak to the other consultant?

With regards to what people were saying about the failure to thrive, it's quite emotive language but is a legitimate medical term. But it's not a diagnosis in itself so if he mentions it again ask him if he can tell you the reasons for it and how they plan to sort it.

I have not been on as had internet problems. Thank for the replies.

I'm thinking clearer now and and not going to mention ED as it is irrelevant. She was healthy and full term when born and cognitive development spot on.

Thank you for the link, I will speak to my GP about it. They are bloody useless though.

She did say that the growth and leg issues sounds neurological and we are being referred back to the consultant we saw first, locally for that. He knows her history and I think he is fab. So I trust he will point us in the right direction with that.

I don't see how the growth isn't liked to the bowel issue though because she stopped growing properly when it became an issue.
I'm going to dig out her red book and have a look at her charts.

I just really thought that we would have some progress with testing or a diagnosis by now.
I will have to re adjust my expectations.

Maybe pushing for the tests is what is making her not want to do the tests. I can understand how self diagnosis is annoying.
So I will ease off a bit that.

She isn't getting impacted anymore so at least she is feeling better. But still only goes when I give her the picosulphate. I can only give it once a week as I can't risk her being in agony and the embarrassment at nursery.
Have stopped the movicol as that was making her leak constantly.
Thinks are much better since.

Just name searched you to see if any update. So sorry this is all going on still with no answer

Has she been tested for CF?

If she isn't growing ask for referral to endocrinology growth clinic . They will measure and monitor growth properly and may have other ideas

Video her walking now
Compare with six months ago is there noticeable change ?

Push for second opinion there could be more going on .

Is the consultant a gastro ?
Have they done endoscopy to look at absorption issues ? And state of her gut ie if coeliac ?
And colonoscopy to look and check properly ?

Keep video records say the date on them so you can track if her walking us getting worse or not .
Undiagnosed coeliac can cause ataxia stumbling etc ... Might be worth asking for endoscopy ?

But growth clinic best starting point that is we began,,,, then got coeliac diagnosis .

Hi giraffe I hope you are feeling better and back to normal now!

Nuclear CF? Cystic fibrosis or do the initials stand for something else, my ears are open to any new avenues to look down.

Cestlavie there is certainly a change in the walking from 6 months ago to now. She used to be able to walk to the local supermarket and back, last summer, about 1mile each way. Never used a buggy.
And now she can't make it to the end of a long road. Even at the park she can't run around a field.
One leg is really turning in from the Hispano tripping her up and lots of leg pain.
We went on a trip with nursery and she was the only one in a buggy. Made me feel shit but it was that or carry her and a heavy bag.

I will ask to be referred to that specific clinic, thank you.

She was on 75th percentile at birth -1 year then it wasn't tracked.
Now she is falling down through 25th and certainly not following any curve.

She has been tested for coeliacs many times and always been negative but she is having a lot of mucus in her stool at the moment and it's smelling like vomit TMI sorry!

Haven't had endo or colonoscopy. The only thing mentions is a transit study.

I really feel like we need to see inside and see what is going on.
Nothing can really be ruled in or out and is purely speculation without seeing for ourselves.

I have no idea why these tests aren't being done.

She's had a horrible time of being impacted then getting a stomach bug for the last 2 weeks.
Such a horrible combination.

We have an appointment on Thursday but I'm going to have to move it because DP is away on business and last time I went alone, I cried and made an idiot out of myself because I was so frustrated and I can't do that again.

Weight height at birth isn't so relevant it us how she has been tracking eg since 12 monhs.
You need to keep records eg keep writing things in a note book and keep saying "she is getting worse" "she is ill she can no longer do xxxx or yyyy :"

Is there a friend or nursery teacher who can go with you and objectively point out the change ?
Has gp or hospital been tracking her height and weight ?

I would definitely push for an endoscopy and colonoscopy - they need to see inside her now as they're clearly not getting anywhere with a diagnosis. Surprised they haven't done an endoscopy yet, seems perfectly logical to me.

Ask nursery to support you in reportig the changes. Someone who can go with you to the appointment ? Or have the nursery write a report with their concerns. They must be noticing the issues too.
Point out the physical issues ask for referral.
But crying with frustration isn't bad.... just have everything written down.. all the things you have said and what has got worse.

I said it before... coeliacs blood tests are not reliable, they can be false negative.
hope you get somewhere with a second opinion.
good point about the video.
does your dd's nursery have photos/videos? progress reports? maybe try to get copies

If she in pain get her back to gp. Have her checked all over .
Ask a friend you trust.or nursery. . I think you can get used to them being ill and you need someone to affirm that she has changed. Undiagnosed coeliac my dd was v weak etc. If it's not coeliac it has to be something. ...