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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Is it crazy to spend this?

56 replies

Msqueen33 · 20/10/2017 17:53

My youngest was diagnosed with autism and an autoimmune disease last year. She's changed so much in two years to a child we don't recognise. The autoimmune disease has done her a lot of damage. I took her to the gp as she's tired, barely eats, pale, upset a lot...they ran all the standard tests and they came back normal. But having asked for the results I've seen they run very basic tests most of which there is a more accurate version. It seems these aren't available on the NHS.

The tests I would like done would cost £300 privately. I'm worried about her and although we aren't rolling in money we could afford it and wouldn't be too pinched. But am I being crazy to spend this on blood tests? I'm worried as she ticks a lot of boxes for a certain deficiency that can damage the brain and is normally associated with her autoimmune disease in that because her gut is damaged she can't absorb nutrients.

OP posts:
SandyDenny · 20/10/2017 18:45

It's worth it even if it comes back negative as you can rule that out and look at the next option.

For a child's health if you can afford it £300 really isn't a lot

KitKat1985 · 20/10/2017 18:47

Non totally worth it I'd say.

ICantFindAFreeNickName2 · 20/10/2017 18:50

Totally worth doing as long as its through a reputable company / hospital..

Mummyoflittledragon · 20/10/2017 18:53

I was going to say your dd is probably b12 deficient but didn’t want to lead you up an alley. Totally agree with the test.

Original poster
Msqueen33 · 20/10/2017 18:54

www.viapath.co.uk/about-viapath We are looking to use this company. They work in part for the NHS. I think I've made up my mind to do it as I'll always wonder if not and if she doesn't get better. I do feel some in the NHS especially the GPs are behind the times.

OP posts:
littlehandcuffs · 20/10/2017 18:59

If you are concerned about B12 deficiency then I don't understand why you don't ask your consultant for a test rather than paying £300.00 for it?

KarateKitten · 20/10/2017 19:00

In a heartbeat. I'd do anything to get to the bottom of why my child is suffering.

TheFickleFingerOfFate · 20/10/2017 19:00

If you can afford it, then do it. I would, in a heartbeat. In years to come, if she deteriorated and it turned out she DID have that deficiency and had been damaged by it, you will never forgive yourself for not doing it. If it turns out she's fine, then at least you can rule it out.

Original poster
Msqueen33 · 20/10/2017 19:01

@littlehandcuffs they've said she's within normal range so it's not that. And they won't refer her to a consultant.

OP posts:
ErnesttheBavarian · 20/10/2017 19:01

has she got coeliac disease?

yorkshireyummymummy · 20/10/2017 19:03

Even if they all come back as normal you will never regret spending the money. Ever. But you may regret not spending it.
I'm sure you, like me, view your child as THE most important thing in your life. Spend this money on her. It's nothing in the grand scheme of things.
And don't be fobbed off by your NHS GP. I had to take my DD private to get the answers I needed and all the time it was a simple thing that should have been picked up six months prior as it was a totally treatable complaint. I'm not saying yours is but sometimes the NHS is a but reactive rather than proactive.

ghostyslovesheets · 20/10/2017 19:04

I'm looking into this for myself - b12 deficient but on the standard 12 week protocol

If I had the money I would go for it

hiyasminitsme · 20/10/2017 19:04

How is the result going to change her management?

Original poster
Msqueen33 · 20/10/2017 19:05

Yes she has coeliac. It would at least give us something to go back to our gp with or look for private treatment elsewhere.

OP posts:
MrsMozart · 20/10/2017 19:08

Were the following checked, and if yes what were the actual numbers for each:
Calcium
Vitamin D
Parathyoid (PTH)

I only found out my issue (hyperparathyroidism, which is the parathyoids and not the thyroid) via private blood tests (£600+). Three visits to the NHS GPs had me down as depressed - I wasn't (other than because I was being'brushed off').

SusieOwl4 · 20/10/2017 19:12

I would go for it . I had to do my own tests for the full thyroid panel as the doctors would not do it . Turns out I have hashimotos . And yes I have read a lot about the active b 12 test. Personally I use medichecks and you could do the tests one by one if you can't find the money all at once . B12 active you can do at home . Or blue horizons is another company .

littlehandcuffs · 20/10/2017 19:15

I;m not sure which disease she has but if it is autoimmune she should be being seen by a consultant on a regular basis. Complete bloods check for B12 deficiency and anemia. My daughter is on immunosuppressant drugs which are strong and she has bloods every 6 weeks to check her levels. If I was you I would be pressing for a referall. My daughter has the low weight and black bags and it is because she is fighting an active disease. I would say you need better treatment rather than vitamin cures ( ducking now as expecting to get told I'm wrong!)

Original poster
Msqueen33 · 20/10/2017 19:22

@littlehandcuffs she was discharged from a reputable hospital as the tests they do for coeliac came back low meaning the gluten free diet is working so they discharged. A lot of time with coeliac because the gut is damaged nutrients aren't being absorbed so affect body function. It doesn't help she only eats cereal, apples, bananas and pasta/spaghetti (I make the sauce so at least she gets some veg) but that's all she'll eat so I know she's probably not getting the vitamins she needs. I will ask for a referral back to a consultant but know this might be a battle as the gp ran a lot of test including thyroid, vitamin D, full blood count, liver, b12, red cell folate.

OP posts:
Original poster
Msqueen33 · 20/10/2017 19:23

I also feel awful as we knew she was very ill and kept taking her back to the Gp to be told it was just a virus so if she's lacking in anything I'd like it sorted as quickly as we can.

OP posts:
yikesanotherbooboo · 20/10/2017 19:29

Don’t feel awful . Have you seen a dietician?

littlehandcuffs · 20/10/2017 19:31

I really feel for you, it took a year to get my daughters diagnosis ( a different autoimmune disease but with gastro problems included ) It sounds like diet alone is not helping her so go back and put your foot down. I do get a bit pissed off with people telling me my girl can be cured by all sorts of stuff, this week I've had someone telling me a "paleo diet" is what she needs!! So feel free to ignore : ) x

littlehandcuffs · 20/10/2017 19:32

And it sounds like you're doing an excellent job, it's so bloody hard!

Original poster
Msqueen33 · 20/10/2017 19:34

We had an intitial dietitians appointment, then saw another and due to see a third next month. All sadly have been hugely unhelpful.

@littlehandcuffs doesn't paleo cure most autoimmune diseases 😉

OP posts:
Cantchooseaname · 20/10/2017 19:39

I would do it.
If you are worried about her eating longer term, a good ot with experience of sensory integration can do good things to expand diet. I have worked with kids with extremely restricted diets who have really expanded what they will eat,
Good luck.

littlehandcuffs · 20/10/2017 19:46

Ms... yes it does : ) !! Hahaha! Sounds like you have a bit of a rubbish GP! It is an uphill struggle sometimes but don't be afraid to go back until
they are sick of you.. I felt like a complete idiot sometimes but we got there in the end and a few years down the line we are slowly seeing some improvement, I think at the beginning I expected a quick fix and for her to be completely well again, It takes a while to adjust x

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