Shaking/twitching/tremors in 13 year old

[ArianaDumbledore]

DS is 13. He was diagnosed with Chronic Fatigue Syndrome about 2 years ago. Would be classified as mild but it's peaks and troughs.

Complained a lot of joint ans muscles pains, developed near constant shakes in hands (something I observed and he hadn't mentioned)
GP Referred back to paediatrician who was pretty dismissive of everything tbh. Pretty much Said he didn't believe in Chronic Fatigue Syndrome and DS is probably just not as fit as other children his age.
But paediatrician noted DS eyes twitching when doing some neuro tests.

Blood tests clear, paediatrician is going to speak to neurology but doesn't anticipate they'll have anything to add.

Had a phone conversation after test results back. Paediatrician said the shaking etc is probably psychological. Might be able to refer to the Chronic Fatigue Syndrome clinic at UCL. But again mentioned the controversial nature of a CFS dx.

I just feel a bit like we're just going around in circles. School aren't happy with his attendance and fluctuating ability. (terrible brain fog at times).
Paediatrician satisfied there's nothing really wrong so it's low priority now (,which I understand). DS looks and feels like crap, we try and chivvy etc but then I wonder if that's the wrong approach too.

Anyone had similar or words of wisdom appreciated

Cfs/me can be debilitating, I know a few people who have successfully claimed pip/dla for it. If the paediatrician doesn't believe in it then they need to work harder on finding out the actual cause of your sons issues, so far it sounds like you have been dismissed without much help. With cfs proper rest and not overdoing it when feeling well is key to managing it, the cfs clinic would be able to advise more on managing. Good luck!

Sorry for asking, but did he have the HPV jab before all this started? I’ve heard of similar happening to girls though I think the jab is given a bit older than 11.

Thanks @Firststariseetonight I think the paediatrician dismissing Chronic Fatigue Syndrome on one hand but then also saying the shaking etc is because of it makes it hard to have much faith.

@FrancesSaid my son was diagnosed with Chronic Fatigue Syndrome before he had the HPV jab.

I'm sorry your son is having a rough time with his health. I'm not a doctor, but wondering (given my own son's condition) has he ever been tested for cortisol deficiency? Has his growth been normal?

Thank you. No cortisol test, He's average height and weight though he's the tallest in our family as DH and I are both shorties.

I would recommend a BANT nutritionist or functional medicine doctor to look at him from a functional perspective.

Just to update a little.
Despite the paediatrician saying neurology most likely wouldn't want to see him or have anything to add, I got a message left to say DS has an appointment booked next week with a visiting Consultant Neurologist.

I know it will be a screening appt and may not lead to further assessment etc, but I'm feeling better that DS will have seen an appropriate specialist.

My DS2 has a condition called Essential Tremor. His hands tremble all the time to varying degrees, from as little as anyone’s might do if they were nervous/ hungover to much worse.
It’s a neurological condition that is harmless if annoying and occasionally embarrassing. It’s worse when he’s tired, been drinking alcohol or caffeinated drinks so he strictly limits his intake of those. He also tries to manage his sleep and exercise and stress to keep in balance.
More recently it has become a problem in his legs after strenuous exercise so he is working on building his muscle strength.
The doc has assured us it isn’t related to Parkinson’s or anything awful, but it is an annoying condition to have. Perhaps your DS has that too? A consultation with a neurologist is a good idea.

I presume his thyroid function has been tested?

Issues with the autonomic nervous system are common with cfs, does your dc suffer with a high heart rate ?

Thank you, it does sound a similar thing. Does your son get eye twitches? This was the only thing the paediatrician didn't put down to anxiety or my son maybe doing himself(!)

He has a few other issues that we've felt have been dismissed by the paediatrician, plus he has the Chronic Fatigue Syndrome diagnosis. He's constantly tired and aching and the twitching and tremors in top is getting him down.

DS2 does have occasional eye twitches but not to the extent of concern or even irritation. The tremor can be tiring and the leg tremors have now and then made it difficult to sleep.

BTW my DS is 28 and has had the tremors since childhood

I'd managed to miss posts somehow

@Cattitudes Yes thyroid has been tested, we have a strong family history so it seemed quite a likely explanation.

@romdowa my son has said something about his rate when they do pulse things(!) at school and his is high I think.

@JosephineDeBeauharnais my dad is quite a shaky person(!) So I so think essential tremors is the likely diagnosis if there is one.
It's just with his Chronic Fatigue diagnosis we have felt everything gets dismissed. The paediatrician he's seen recently more or less said he didn't believe in Chronic Fatigue Syndrome and told my son he's probably just not as fit as other children his age.

DS has been experiencing terrible brain fog which he finds upsetting and then with the tremors It's just a bit miserable.

Hopefully we'll get a better insight after the neurology appointment

Thanks all

Sorry to hear how dismissive consultant is. I think you are going to have to push, hard, insist on every referral. To neurology, to UCL, to nutritionist, thyroid, everything.

Thanks
I'm hoping the neurology appointment will be helpful. Apparently all DS blood tests were fine. I have other DC with SN so I'm very conscious about how sometimes accusations can build, particularly against mothers. DH took him to the paediatrician appt because I felt I'd get nowhere.

Had the neurology appointment and it went well. Neurologist thinks it's a combination of muscle weakness and Essential tremors but wants MRI done.

Hi @ArianaDumbledore - just wondering if your son has been tested for Coeliac disease? I had similar symptoms before I was diagnosed. The chronic fatigue especially but I had some tremors/twitches which were caused by low B12 (related to Coeliac).

Thanks I don't think he has. he's had a lot of blood tests all of which are always fine. , I know the blood test isn't always reliable but he doesn't present eith any Coeliac symptoms that I'm aware of.

It's a good thing he's going for an MRI. When are you scheduled for that?

I'm glad the neurologist has been thorough after the paediatrician was so dismissive. No date due it, the neurologist is based at a children's hospital but does a clinic at our hospital every 3 months. I'm assuming they will try and coordinate so the results are back in time to book a follow up appt but no idea I'd the aim is 3 months or 6 months for that.

The hospital rang today and his MRI is booked for this Sunday.

@ArianaDumbledore I know this is an old thread but how did you get on with mri? Any answers? My son is the same age and very shaky and twitches. He has hypermobilty x

@danielle8p the MRI was clear so they said it's Essential Tremors. He was given prescription for Beta Blockers for exams, but having discussed with my GP, he's not tried them. Her advice was although they would help with the shaking, he'd likely feel very spacey and tired. He struggles so much with fatigue so that would be rather counterproductive. He has laptop use approved for lessons and exams at school and he finds that works best for him.

He's been discharged by paediatrics, DS2 isn't really "right" but whatever is going on just seems outside of any clinical remit. The paediatrician did soften a but but I really think he was lining up for Fii, which is rather disturbing.

@ArianaDumbledore sorry I don’t know what SN and Fii stands for. Is ds2 the one with the shaking and tremors?