I’m so scared but I’m probably being ridiculous

[Lostmum72]

My 14 year old has been so ill for a few months now, stomach ache, migraines, fainting funny turns, panic attacks. I thought it was a virus but it never got any better, the Drs tested her iron levels and they were slightly low so she was given iron tablets, then she got worse started being sick. The dr and I thought maybe it was the iron tablets but when stopping them it made no difference realised it’s not that. Now she’s having loads of tests trying to get to the bottom of it. She’s been off school on and off and now been off 2 weeks solid as she got worse. I’m worried sick as I’ve just lost my dad to cancer, my mum to cancer and lost my sister too. I can’t loose anyone else but I know that sounds totally irrational but I’m scared, what the hell can it be !

Take her to doctor we always think worst but my experience with cancer is it would have been picked up already

Well I have taken her to the dr several times, waiting for blood test results

It’s such a worry especially seeing her collapsing etc, just waiting around for results is making me so anxious

It's no surprise at all that you are worried, OP, if you've recently lost other family members - that would be natural, even if your DD wasn't ill herself. Just try and hang onto the fact that your DD is under the care of doctors now, and they will discover what is making her ill.

Please do update here as you get news, and try not to worry too much.

It may just be stress but anyway the doctors are taking it seriously so you should get some answers soon. The waiting is horrible. Fingers crossed for you.

Let’s hope the dr finds something so it can be treated

Sounds like anxiety and stress to me.

Have you probed whether any problems at school?

No it’s definitely nothing at school, she’s been wanting to go in and she does well at school, I think it’s more than stress tbh, she looks awful

Ask her if her heart ever feels funny - really fast or slow or extra beats or not in rhythm. Some of those symptoms can be connected with heart arrhythmia and it might not occur to her that her heart beating erratically occasionally is 'not normal' - it didnt to me when I was 14.

Yeh her heart does beat faster sometimes, she’s told me that

Mention it to the doctor and ask if it could be an arrhythmia. They may say no, but keep it at the back of your mind and if nothing else shows up in the blood tests then get pushy.

If you can spare 100 pounds and think there might be a good chance of arrhythmia, look on Amazon for a device called Kardia by AliveCor. Its a little device you stick on your phone and then download the app. It can record a surprisingly detailed ECG. You can do one on her if she feels dizzy and faint and then save it and show it to her GP. You can also email it to their experts for a review with a cardiologist. I was recommended it by a eminent cardiologist and it has been exceptionally useful/accurate.

As soon as I read your post it struck me that all your dd’s symptoms could be caused by or attributed to Postural Orthostatic Tachycardia Syndrome (POTS) which is not rare - as the newspapers regularly report it is, but actually quite common, especially in girls of your dd’s age, but just underdiagnosed.

Are the faints positional? As in, does she faint when standing or having moved from lying to standing, lying to sitting or sitting to standing? If it is POTS, the panic comes from the adrenaline surging around the body as a result of the heart working extra hard to try and get blood up to the brain. When the blood doesn’t get there, that’s when you get the faint.

If you are able, check her pulse after lying quietly for 10 minutes, then ask her to stand and check it again at 2, 5 and 10 minutes. If it rises by 40 beats or more and stays up, it could be POTS and I would take the info from the POTS UK website to your GP and ask for a referral for further investigations. That would usually be cardiology initially to rule out any cardiac issues - but most cardiologists know very little about POTS itself. Dependent on your hospital system it could be Neurology, Neurophysiology, Electrophysiology or a Syncope Clinic (often in Geriatrics!) for the actual diagnosis.

It is horrible and affects quality of life, but isn’t dangerous and can be managed by staying well hydrated (3L of water a day minimum) electrolytes (eg Nuuns hydration tabs) compression stockings and in some cases salt loading (although this shouldn’t be done unless medically advised). Exercise to strengthen legs (exercise bike, rower, walking and resistance training) is also important as it increases the muscular-skeletal pump, which helps get blood up to the brain to prevent the faints.

If the above conservative measures don’t help, there are then medications they can try to increase blood volume and/or slow the heart rate to reduce the tachycardia.

Both my son and I have POTS. I have had it since I was 7, but was only diagnosed in my mid-late 40s. The majority of cases start in puberty and have improved enough to no longer meet the diagnostic criteria by early 20s. When the symptoms are being well managed it’s not a massive problem, but it can take a bit of tweaking to get the balance right for each individual.

Thanks for the information, I will seriously look into this x

Does the dizziness and tummy ache coincide with the migraine? They sometimes are all part of a migraine.

If your DD has recently lost her Granny, Granny and Auntie to cancer, it could be anxiety/stress. I had all of the symptoms you mention when I was in my early 20s and my DM was terminally ill. I didn't feel like I was stressed at the time, but in hindsight I'm convinced my symptoms were stress related. After extensive tests I was just diagnosed as 'post viral' - i.e. The doctors didn't know what was wrong with me.
Keep pushing for tests, but also continue to reassure your DD that it is unlikely to be anything serious.
And definitely follow up on the heart tests mentioned above. Heart arrhythmia is pretty common. I had SVTs diagnosed as a teenager - not life threatening, but can cause some of the symptoms you list and can be extremely unnerving.

I know this sounds very odd but honestly we went through this for years - I have never been so stressed in my life - then it all stopped after a coeliac diagnosis. No-one is interested in this. I've been told it's coincidence but it seemed too much of a coincidence to me.

Look up Ehlers Danlos Syndrome. POTS is one of the things associated with EDS. There is 6 different kinds of EDS ranging in severity. I have hyper mobile EDS, and some of your DD's symptoms are similar to how I can be. I also have symptoms of vascular EDS (this cross over can happen). Worth a look anyway xxx

abcnamechange, it looks ike you are right it’s looking like coeliac here too, never would of thought it !!!

Coeliac can accuse all sorts of issues undiagnosed. Have they done a blood test for it ? Anyone close have any auto immune disease ?

My DS was diagnosed coeliac last year, once he'd been gluten free 2/3 months he was a different child.

On top of stomach problems he also had dizziness, sweating, bloodshot eyes, swollen painful glands and fatigue like I can't describe. In the run up to diagnosis he couldn't walk at times. It is a gastro problem but the immune response can cause a whole range of issues when untreated.

There's quite a few support groups on Facebook and coeliac uk have some great resources.

Have a look at the eosinophilic GI disease and dysautonomia thry often go together

That's amazing - has she had blood tests? It's not great living with a coeliac diagnosis but it was a relief for us to find out what it was.

It takes 2/3 months to get out of the system so don't worry if you don't see instant results. Please post back I'd love to know how you get on.