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Need a handhold - son in hospital

544 replies

HaudYerWheeshtYaWeeBellend · 31/05/2025 00:20

Took him to A&E yesterday as he fell at the gym and we thought he had broken his wrist (thankfully just a sprain) however during their examinations they were worried about his circulation as his hands and lower arms were going blue and were cold to the touch, they advised we needed to make an appointment with his GP for further investigation.

Managed to get a GP appointment for 3pm today as the hospital suspect he could possibly have Raynaud's syndrome/disease

GP took his blood pressure and it was 177/127 , they thought the machine was faulty so got a another one and it was the same.

We had to take him straight to A&E, they’ve been trying to get bloods for the last 6 hrs but his veins keep collapsing and are unable to obtain his bloods, 2 doctors and 3 nurses have all tried with all sorts of needle sizes/cannulas etc… even with a vein scan machine, he’s been poked and prodded more times than we an count,

They’ve done a serious of tests, ECG, blood pressure cuffs on his arms and lower legs every 60 mins.

His only symptoms are some slight dizziness and some blurred vision, because of this they carried out a test where they turned the lights off and shown a torch in his eye… however the drs body language changed, she went and got her senior doctor to look and they redone the test.

We were then told to wait in the room as they needed to speak to a more senior doctor.

We were then put into a room, nurse came in about 45 mins later and advised he was being admitted, we asked why and she said has no one told you anything and we said no.

Doctor has come in and said DS is being transferred to another hospital, either tonight or tomorrow morning, he needs to see an specialist eye doctor , he also needs a urgent CT scan, possibly MRI and a heart scan as his ECG has shown some concerns and did we know he had a heart murmur.

They also need to get his bloods urgently somehow.

I’m not naive, I know what they are suspecting, I just need to be positive and hopefully the scans show nothing.

OP posts:
ButteredRadish · 25/06/2025 18:41

OP, have they mentioned Marfan syndrome? Does your son have very long fingers and/or arms?
I only ask as my late DH had it and my DD has it (although much more prevalent in boys) and a lot of what you describe sounds just like late DH was.

Denimshorts · 25/06/2025 19:22

Good news they are checking everything. Best wishes.

Glad the GCSE issue is sorted.

anyolddinosaur · 25/06/2025 20:53

This is a rare condition that can cause high blood pressure. Doesnt really sound like this but as they are struggling to find a reason you could ask if it's been ruled out

www.nhs.uk/conditions/phaeochromocytoma/

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LushLemonTart · 25/06/2025 21:33

I hope you get some proper answers soon.

He is a big lad isn't he! My ds2 is that height but no where near that weight. He's mid 20s though.

TheVeryAngryCaterpillar · 25/06/2025 22:32

Hi OP, sorry to be an armchair medic, and please know I have zero actual medical training, but I've come across a condition called acromegaly previously, which can cause tall stature, high BP and I think vit D deficiency- worth a look?

Angrymum22 · 25/06/2025 23:30

It is unlikely to be acromegaly due to his age. While still growing it is known as gigantism or pediatric acromegaly. It can cause hypertension but this is due to enlarged heart which would be obvious from the heart scans OPs DS has had. It is caused by a benign tumour in the pituitary gland, again obvious on MRI/CT scan of the head.
We have a family history of acromegaly and pituitary tumours in our family although apparently they are not thought to be genetic.
My DM & DSis have both had acromegaly and I had a related tumour.
Marfans is a possibility, I know a couple of people with it that weren’t diagnosed until mid 20s when they started to have heart problems.
The valve problem OP’s DS has may be a congenital defect that has remained undetected until he has started to grow. My nieces heart murmur was only discovered when she was being checked post meningitis. Otherwise it would probably have remained undetected until she hit puberty. They waited until she was early teens before operating. She too was very sporty. Although her heart murmur did stop growth, post surgery she caught up although genetically was never going to be much over 5’3”. It could be that the valve defect in OPs DS has had no effect on BP until he hit puberty.

LBFseBrom · 26/06/2025 08:55

Thank you for the update, I am sorry you've had so much to deal with on top of your son's illness. x

rainbowstardrops · 26/06/2025 10:43

Thank you for the update as I’ve been wondering how you’re all getting on.
Sorry you have so much on your plate right now Flowers

Azandme · 26/06/2025 13:10

Thank you for the update, and sorry for your loss.

Glad to hear they have ruled out a lot, and that the things they have found don't require immediate treatment. Have they put him on any medication?

I think I mentioned before that one of the suggestions for DD13 was her growth rate - also 95th centile.

We're now at 3 months 1 day since she was admitted, and she's back at school, back doing PE most weeks, and back riding horses, albeit on a three different BP meds that keep her around 129.

She's having a 24 hour BP monitor fitted on the 9th July to try to identify any patterns. Still waiting for some test results including phaeochromocytoma.

It's so frustrating when you don't know the cause, sending empathy from over this way.

HaudYerWheeshtYaWeeBellend · 27/06/2025 09:50

Azandme · 26/06/2025 13:10

Thank you for the update, and sorry for your loss.

Glad to hear they have ruled out a lot, and that the things they have found don't require immediate treatment. Have they put him on any medication?

I think I mentioned before that one of the suggestions for DD13 was her growth rate - also 95th centile.

We're now at 3 months 1 day since she was admitted, and she's back at school, back doing PE most weeks, and back riding horses, albeit on a three different BP meds that keep her around 129.

She's having a 24 hour BP monitor fitted on the 9th July to try to identify any patterns. Still waiting for some test results including phaeochromocytoma.

It's so frustrating when you don't know the cause, sending empathy from over this way.

Edited

When he was in hospital they gave him meds to try and bring his BP down as he went into crisis 2 more times for no reason at all and it took them over 24 hrs to bring it down.

I do think like your dd and it’s down to his size and the rate he’s growing at, he’s 6ft 4 now at only 15 and he has muscles on top of muscles.

He was fitted with a BP and a EGC monitor for 72 hrs, his BP remained consistently high and his heart was within normal range, well I say that, his heart rate is lower than normal, but that’s simply because he’s an athlete.

I don’t believe he has any genetic conditions, he has none of the characteristics or symptoms, he just a unit of a kid 😁

They want DS to go on BP medication however he’s resisting that currently as he wants to know why his BP is spiking , he doesn’t want to take meds just for the sake of taking them because they haven’t found a cause.

OP posts:
stayathomegardener · 27/06/2025 14:59

Thanks for the update.

Hopefully someone on here can suggest a new direction to investigate to get to the bottom of this.

LBFseBrom · 27/06/2025 15:52

It is quite common for young athletes to have high blood pressure spikes.

dcadmamagain · 27/06/2025 16:29

I’m so glad your son is being looked after well. I’m sorry to hear about the death in your family.
note tgst the school saying he will get his mock exam results is simply 100% not true. Exams are run by exam boards not the school . Unless he sat a certain percentage of each subject which he may not have done as I don’t think he sat any after half term , then he will not get a grade from the exam board. Please please talk to the exams officer at school and get correct info on what exams he met the minimum attendance level. You need to manage your son’s expectations and speak to schools/colleges he is planning g to go to in Sept. I wish you all the best

jamimmi · 28/06/2025 09:50

@dcadmamagain I belive in Scotland they do use.prelim or mock grades in thsi instance, but would agree op needs to check with rhe exams officer.

Aseveritisme · 30/06/2025 16:07

Whilst not a total relief, this is pointing in the positive direction OP and hopefully your boy will get to enjoy his summer hols.

one point is 19.5 stone at 6’4. I understand he’s a rugby player but even taking that in to account, 19 stone seems very high?

HaudYerWheeshtYaWeeBellend · 30/06/2025 16:33

Aseveritisme · 30/06/2025 16:07

Whilst not a total relief, this is pointing in the positive direction OP and hopefully your boy will get to enjoy his summer hols.

one point is 19.5 stone at 6’4. I understand he’s a rugby player but even taking that in to account, 19 stone seems very high?

Edited

He only has 11% body fat, he gets a fitness examination twice a year.

He is an absolute beast of a kid mind you 😀

OP posts:
Aseveritisme · 30/06/2025 16:37

That’s incredible!! he must live in the gym?!

HaudYerWheeshtYaWeeBellend · 30/06/2025 16:45

Aseveritisme · 30/06/2025 16:37

That’s incredible!! he must live in the gym?!

He trains/plays 6 days a week, most of his team mates do.

Take today for example.

5.30am to 7am - Endurance training.

1pm - 3pm - weightlifting

6.30-9 - Metabolic training.

He has a Wednesday off for recovery, as he plays over a weekend.

OP posts:
HeySugarSugar · 30/06/2025 16:47

Aseveritisme · 30/06/2025 16:37

That’s incredible!! he must live in the gym?!

Not unusual for rugby players - fellow rugby mum here! 😄

Tiswa · 30/06/2025 16:48

Yep the weight height and body fat is fairly consistent with a rugby player!

the issue is often when stopping training how weight goes in

Aseveritisme · 30/06/2025 16:48

HaudYerWheeshtYaWeeBellend · 30/06/2025 16:45

He trains/plays 6 days a week, most of his team mates do.

Take today for example.

5.30am to 7am - Endurance training.

1pm - 3pm - weightlifting

6.30-9 - Metabolic training.

He has a Wednesday off for recovery, as he plays over a weekend.

How is he doing mentally suddenly not doing any of this?

Aseveritisme · 30/06/2025 16:48

Oh wait that was today… I thought he was meant to be taking it very easy?!

HeySugarSugar · 30/06/2025 16:48

@HaudYerWheeshtYaWeeBellend so pleased to hear he’s back on his feet - it must have been a frustrating and frightening time, and continuing frustration at not knowing exactly what’s causing it 😬

itsgettingweird · 30/06/2025 17:52

Sorry to hear about DH grandad.

That interesting about the height, muscle mass and growth rate. Would make sense that may out pressure on the body.

Just for info. I know someone who has cysts in her kidneys. It’s called polycystic kidney disease and is hereditary. Not suggesting for one moment your ds had this. However ….: I do know that there is a link between kidney problems and high BP so I wonder if you can ask for a referral to nephrology (kidney specialists) if he still has cysts at next scan. I also know if there’s kidney problems then taking BP meds for life is unavoidable.

HaudYerWheeshtYaWeeBellend · 30/06/2025 18:17

He’s back at training , he was cleared by the cardiologist, they also want a 72hr ECG done, so nurse came last night, they’ve said routine as normal but any signs of illness he’s to stop.

His coaches and trainers are not pushing him also, he’s had 3 and a bit weeks off.

He was absolutely itching to get back to training, normality really.

They've mentioned polycystic kidneys, could be a reason for his BP, however they’ve said it doesn’t normally cause crisis episodes.

OP posts:
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