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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:
Sirzy · 20/10/2017 17:54

I wouldn’t think twice about paying. Even if just for reassurance!

overmydeadbody · 20/10/2017 17:55

If you can afford it then it would not be crazy to psi for private blood tests.

Even just for peace of mind, do it.

Monoblock67 · 20/10/2017 17:55

If you have the money to spend it, and it will put your mind at ease that you’ve done everything possible to help her, then definitely get them done. I hate to sound brutal but what if you don’t do it now, then a few years down the line things haven’t improved, that’s time wasted when you could have had a clearer diagnosis and help support around that.
I’m sorry you’re going through a tough time too Flowers your DD is lucky to have you

letsdolunch321 · 20/10/2017 17:56

Definitely don't delay, go ahead and get the test done.

At least you will have peace of mind as to what to do next.

Good luck

Chestervase1 · 20/10/2017 17:58

Can you get a referral to Gt Ormond Street or another reputable hospital. My concern would be what your GP would do with the results.

GlitterGlue · 20/10/2017 18:07

What are the tests you'd like done?

haveagobletofblood · 20/10/2017 18:11

£300 is not crazy. Either way is a win situation. You either get more information that can be used to treat your DD, or peace of mind. Go for it.

Misspilly88 · 20/10/2017 18:12

Not crazy at all.

BoomBoomBoomBoooom · 20/10/2017 18:15

£300? I wouldn't even think twice. Do it.

Floralnomad · 20/10/2017 18:17

I would ring round , blood test prices vary very widely in the private sector .

shadesofwinter · 20/10/2017 18:20

Not crazy at all. I'd do it in a heartbeat

yikesanotherbooboo · 20/10/2017 18:23

The test might be available on nhs if requested by a consultant who would also then interpret it.
Why not ask for review by consultant and see what their opinion is?
What is the test by the way?

HebeJeeby · 20/10/2017 18:24

God no, spend the money.

Familyof3or4 · 20/10/2017 18:25

Do you mean a test via a hospital and paediatrician or via a company? If a company you have no idea if they are accurate or not.
Have you spoken to your GP about your specific concern?

littlehandcuffs · 20/10/2017 18:31

As a parent of a child with an autoimmune disease I would say be careful, there are lots of people offering diagnosis / cures / diets and making lots of money from it.
All the blood tests you need are available on the NHS and if something shows up then that is when they will do further tests and more detailed investigations.

lookingbeyond40 · 20/10/2017 18:33

Go for it lovely. Your child having one condition is bad enough without battling for answers with another.

Mummyoflittledragon · 20/10/2017 18:34

I would pay for the tests. I have chronic fatigue (ME) and have paid for tests myself. Some were in the low range but not outside of range and the nhs wasn’t interested though. I imagine neither of you have private care through work.

DrRisotto · 20/10/2017 18:35

How do you know they only ran the most basic tests? Did your (NHS) doctor tell you that the more advanced tests weren't available?

Obviously I have no idea of your situation, but I worked in a service where they used the cheaper test first, that usually was adequate for diagnosis. If it wasn't, then the next step was the more expensive test. That tends to be the way the NHS works.

IWouldLikeToKnow · 20/10/2017 18:35

Once the tests were through a reputable private hospital/healthcare facility I wouldn’t think twice.

wobblywonderwoman · 20/10/2017 18:36

I would pay. Really hope everything is OK Flowers

Original poster
Msqueen33 · 20/10/2017 18:37

Thank you all. We had a hard enough time with our gp trying to them to test for her autoimmune disease (I took her 4 times and my dh the 5th).

We'd like a complete b12 profile done (including b12 active the NHS doesn't tend to offer) plus all b vitamins and a red blood cell folate test done. St Thomas guy in London do it privately.

OP posts:
HelpTheTigers · 20/10/2017 18:40

Would you regret it if you do, or regret it if you don't? You are definitely not crazy to do this. Flowers

Original poster
Msqueen33 · 20/10/2017 18:40

I asked for a copy of the tests and results. As they all came back within the normal range the gp says we don't need to do anything further but my daughter still looks incredibly ill, dark circles under her eyes, pale, tired and has lost weight. Yes we were told by the gp that the b12 active isn't available on the NHS.

OP posts:
theftbyfinding · 20/10/2017 18:42

I urge you to do it op. My son was very ill, couldn't eat, weight dropping off him, heart palpitations and the NHS did nothing but an x ray. Private blood tests showed Active B12 very below range, iron deficiency and further tests showed Pernicious Anemia. The NHS is way behind the times with nutritional testing, probably due to cost. They see a normal Full Blood count and rule out most things from that alone.

theftbyfinding · 20/10/2017 18:44

Further tests which are useful to establish if it's pernicious anemia are homocysteine and methylmalonic acid. I got great information from this woman's campaign site. www.b12deficiency.info/signs-and-symptoms/

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