Still seeking help-extreme fatigue-going to A&E-what to insist on having checked?

[Alexandra84]

Hello,
I posted a few weeks ago. Dd (8yo) has extreme fatigue. Blood test show eosinophils are 2.00 10 * 9/L. They were also raised a year ago, but GP declared the rest was 'within range'. Only after digging and asking for blood tests is it evident that's not true.
We have now, after seeing a second GP opinion, finally been referred to paediatrics. This appt is not for another 3 weeks.
She has spent all weekend in bed, and can't manage school tomorrow.
I feel I've got no other choice but to take her to A&E, I can't allow her to lie helplessly in bed with weeks before speaking to anyone.
Can anyone advise what I need to insist on. ECG? What other tests?
Just to be clear, I am so cautious of stretching services, taking time that is needed for emergencies, but I've asked twice now if there is anything sooner/cancellations, and we are no further.

Your poor girl :( I have chronic fatigue and it's hard enough as an adult. With hindsight, I also had it as a child but not as severely as your daughter (it got that severe in my 30s/40s).

One thing that it was worth checking for is POTS as this is a common underlying cause of chronic fatigue that is often missed. Measure her heart rate after she has been laid flat/recumbent for 10 minutes. She should be completely at rest, no talking or doing anything else that will affect heart rate. Then she should stand up and you retake her heart rate after 1, 3, 5 and 10 minutes. Again, no talking and no fidgeting or moving from leg to leg. She may find this uncomfortable. If it becomes unbearable you should obviously stop and just use whatever data you were able to collect. The easiest and most accurate way to measure heart rate is with a pulse oximeter, which you can buy fairly cheaply from Argos. I got a wireless one for about £40 but you can get cheaper ones. Fitness trackers aren't generally responsive enough to get an accurate reading.

Record all five numbers and if there is an increase in heart rate upon standing you should discuss it when you see the paediatrician. In her age group an increase of 40 or more is suggestive of POTS but I'd tell them regardless of the results so they can rule it in/out. An alternative is to see a cardiologist if you think POTS is a real possibility, I would suggest privately if you can afford it. Have a google for more information.

It may not be POTS but if I'd been diagnosed as a child my life would have been very different. It's a very easy thing to rule in/out so always worth checking. It's not curable but it is treatable.

Thanks to those who contributed helpful ideas. I've noted them all and will discuss when we finally see someone.

Called Gp today to ask to discuss deterioration in condition. No reply yet, hopefully tomorrow.
Have also contacted secretary to ask we are notified of any cancellations.

Re some points that were asked, bedtime routines are consistent, she's not allowed on phones and we don't have any computer games, just some TV at the end of the day.

Will try amended diet as suggested.
We haven't had blood pressure, thyroid or anything related to heart checked. Will ask if these can be done before paeds appt.

It's honestly excruciating to watch her feeling so awful.
Thanks for the helpful comments.

Sorry if you’ve already said - is she managing to go to school?

Request a full blood work up rather than just a standard blood test- far more detailed and will capture a lot more.

Hope you get to the bottom of it soon.

My DS had something similar. We did go in via A and E in the end - by ambulance, actually, as he couldn’t even walk. He was ill for months, and it turned out to be severe FND. He’s not through it, but is hugely better.
I would do everything you can to rule out all possible medical issues, and also take up the mental health support too. It was that that ended up changing things for my DS.

Make sure you do "insist" until you get somewhere. YOU are your daughter's advocate and unfortunately too many times women are not taken seriously by doctors. Ignore all posters who say you're stressed etc.

I’m so glad you’re on the cancellation list and have told GP she seems more exhausted than she was. If you can get full blood tests inc thyroid, vit D, B bits including ferritin, repeat diabetes ones before you see consultant that would be helpful, as well as keeping a sleep/mood diary (noting how she is on waking - refreshed/lethargic, irritable, appetite etc. ). Take any videos that show how she is when she’s very tired (awake but wanting to go back to bed) . Also a timeline of health/energy levels up to present point. I honestly think I was born tired, I used to manage school but come home, eat something then beg my DM to let me go to bed. DM tried to persuade me to stay up a bit more, but I couldn’t. This was right from nursery age. DPs were remarkably unconcerned and it was only as an adult I was diagnosed with a genetic condition, one of the main symptoms is severe fatigue! I also had a fair few of the other signs. So for me tiredness was a constant. What was DD like before she started feeling now she is now?

I really hope it’s not long before you get some answers and a treatment plan. There’s nothing harder than seeing our children unwell even with straightforward things. But when you don’t know what the cause is, that’s a whole different level of agony.

I mean, this could be absolutely anything :(

Not at all usual for an 8yo to be suddenly bedbound.

I’d consider paying for a private consult if you can. Shouldn’t have to but it can make things move along .

Do not pay for a private consult unless you have the money to have pay for follow ups. All a private Dr can do is recommend various tests.

when you talk to GP tomorrow, ask for an urgent referral to a community diagnostic centre. There are 165 in operation. I think we can’t assume chronic fatigue. She needs to be tested for everything under the sun. Fatigue is a symptom of so many illnesses, from vitamin D deficiency to cancer. Chronic fatigue is only diagnosed after eliminating all other possibilities. It doesn’t sound like they’ve done much tests and no scans.

If the GP is fobbing you off, then I would go to A&E. Inability to get out of bed is very serious. Not all illnesses come with a fever. I know A&E isn’t meant for what your DD has, but that’s under normal circumstances when the GP and referral system is working properly. They aren’t. We are having thousands of excess deaths every month due to the NHS having been defunded and gutted for over a decade. If A&E is the only way to get your DD seen when she is bed bound but not in a coma….do it. People go for sprained ankles ffs, you’re not abusing resources.

Please don’t listen to all the armchair diagnoses of ME/CFS, it’s a possibility but this is a diagnosis of exclusion and everything else should be considered first.

Paediatric A&E is a different kettle of fish from adult A&E IMO, they would generally rather you bring them in, and this is serious it’s not a graze or a cold. I would seriously consider it in your shoes if you cannot get a response from the consultant.

I have never heard of a community diagnostic centre but that sounds like a brilliant option.

I agree that ME/CFS and mental health issues, are diagnoses to be considered only after everything else has been explored and ruled out. And also agree it could be caused by a whole host of things from the simple to the complex .

Yet OP mentions her attending parties. It's not an accident or emergency, she's booked in to see a paediatrician who hopefully will find out what's wrong.

Could I ask, you say she had it? Is she ok now?

I have to pop in on this as I live on the east coast of the USA where Lyme is endemic.

the regular test for Lyme is imperfect, however there is an entire dodgy Lyme disease industry here and and they use some really suspect testing that gives a lot of false positives. I know that there is an (infamous) clinic in Belgium that does this as well. So before anyone goes to a private Lyme clinic they have got to investigate it properly. You don't want to wind up with useless long term antibiotics or worse.

Don't make your poor daughter suffer a&e for something that will have limited help. Theres too much demand and time wasting as it is.

Only after digging and asking for blood tests is it evident that's not true.
What were the blood tests apart from the eosinophils that were not in range?

Everything else was within range.
I received a text to say 'blood tests show everything is within range'.
Someone suggested asking for a copy.
When I received it, the Eosinophil level stayed 'above range-moderate'.
No one was going to tell me this despite numerous visits to explain she was tired. Sitting with the Gp, at 5 pm, she curled up in the chair and said 'I'm so tired' but it was all dismissed.

Prepare for paeds appointment it may be your one shot. Research the blood test results are they well within range? (doctors can say normal but you're close to one end of scale and still having symptoms) I'm assuming iron, Vit d etc were checked? Hormones? Thyroid?
Research potential conditions that fit her symptoms. Make a list.
Have a list of questions-
Could it be xyz? If not why not?
This test is low is this a concern?
Have a brief history prepared don't assume the doctor is caught up.

Another option if you can afford it is a private peads appointment. I have a health condition, I was getting little support from hospital/gp. I paid £225 for a private appointment, it lasted an hour they went through my scans explained everything to me. Supported me in creating a tapering off painkillers plan. And offered to put me on their NHS list for a course of treatment my gp had refused to refer me for. Worth every penny.

Cold.

Did they check adrenal gland function? If not they might do it as part of the paediatrician appointment as the blood tests are normally done in hospital.

No,
Not checked. Will make sure this is addressed when speaking with consultant.
Thank you.

Have spoken to GP receptionist. My request has been sent to the GP, who had emailed a reply back to the receptionist stating she can't speed up referrals, it's down to the hospital to determine. No one passed this message on, hence me telephone this morning to ask if I could be called today.
GP stated A&E should be used if I am worried.

They say they no longer expedite as the system was being abused.

Spoken to Consultants secretary. Consultant only has clinic once a week.

Feels like I'm desperately asking for helping and everyone is saying no.

Could you go private, its surely either that or wait on paeds?

Go private & get everything checked out. You could be waiting years before the NHS diagnoses.