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Heart murmur and night sweats

(49 Posts)
PonderLand Wed 17-Jul-19 15:48:57

Hi my son is 3, he came down with a temperature last Thursday and started with muscle spasms/twitching that he's never done before. He became drowsy and fell asleep whilst I was on the phone to get an OOH appt, the twitching carried on for about an hour then we took him to the OOH who said it was viral. He was sick once when we got him home and since then his temp has been okay but he's been waking in the night which is unfortunately normal for us. He has really bad night sweats which seem to wake him up I have to change his pillow and sheets etc this has been going on for about a year every other night!
I've told his doctors but they've never been concerned.

Last night the same thing happened with sweating so I put him on my chest to try and get him to calm down and again he went drowsy and fell asleep which is unusual for him usually he wants to go downstairs. Because he was laid on my chest I could feel his whole body twitching and tensing, his legs, arms, bum, stomach, everything was just twitching. It went on for about 10 minutes, his heart was really pounding. I took him to the gp today and he said it sounds like rigors? Shivering? It really didn't feel like shivering to me it felt like twitching muscles all over. He checked him over and all his glands are swollen and he found a heart murmur which he's never had before. He sent us away and told us to go back after our holiday for another check up, this Friday we're going to Cornwall for a week. I really can't stop worrying about him, it's all so unusual for my son, he's had plenty of fevers before but I've never felt him twitch so much and the heart murmur has panicked me. I googled (I know I shouldn't of done) and it says the murmur can cause excessive sweats. I told the gp about the sweating that he's always had and he said he doesn't know why he does that. I'm at a complete loss, one part tells me to just treat it like a normal virus but another part of me is really panicking!

PonderLand Wed 07-Aug-19 10:02:03

I know nobody has responded but this is still on going. My son seems fine in himself during the day now no fever or twitches etc.

He's been passing large amounts of clear urine or tiny amounts of dark urine since the 19th July the gp told me to do urine dips which I've been doing as he was having pain during the night. A few times he's woken up in the night in extreme pain, scrunching up, thrashing then straining to do a wee on his potty. I tested the ones he's done on the potty and they came back as +3/+2 for blood and +5 for glucose. I tested his blood sugars as I have a monitor (he gets hypos) and his blood sugars were normal 4.6 and 4.3. During these night time episodes he also has an erection that doesn't go down for over an hour!?

His urine during the day contains trace amounts of protein but he's never in pain with day time wee only night time? The mornings after the blood and glucose are found in the night he still has trace amounts in the urine but that goes until the next time he wakes at night.

He's been having lower left flank pain on and off, as well as knee pain. He will be playing and then cry out saying ow and touch his lower back. When I ask him to show me it's always lower left back. I'm really concerned about this, my son had a failed hypospadias surgery and he is due the re-do operation in 3 weeks time, we've waited 18 months to get it re done but I'm going to have to cancel it if he's still having these problems. We are waiting for the paediatrician to get back to us with a clinic appt as the gp wouldn't prescribe anything, he just told me to keep testing urine. The urine tests are £16 for a pack of 24 I want to test every wee but we can't afford it.

PonderLand Wed 07-Aug-19 10:03:48

This is one of the night time urine tests.

PonderLand Thu 15-Aug-19 19:00:24

Again I know nobody has responded but we still haven't heard back from the paediatrician with an appointment and this is the only place I can think of to keep posting. Blood in urine has been positive 3x since and also getting bilirubin positives on all wee's this week. My son still doesn't have an appetite and is now complaining of stomach pain and has a chesty cough. Urine sample that I got the gp to send off last Friday came back clear for infection , totally lost gp said to keep testing and wait for the specialist. I just want him to see someone and then I can move on and concentrate on his operation.

sproutsandparsnips Thu 15-Aug-19 19:56:02

Do you have a date for specialist? Hypospadia can cause recurrent Utis, but I don't really know what could cause the glucose and blood intermittently in urine unless it's something to do with it being night time and not drinking. I know it's not helpful but I would be worried too thanks

Sunshinegirl82 Thu 15-Aug-19 20:06:37

Are you seeing the same GP every time? Can you get a second opinion? You're not overreacting, I'd be very worried too.

PonderLand Thu 15-Aug-19 20:19:05

Oh thankyou for replying it was feeling like an echo chamber  the specialist is my sons normal paediatrician that he sees for hypos but the gp said they can request any scans if they think it necessary. I thought we'd of got a letter through by now as the gp sent an expedited letter requesting for my son to be seen within two weeks at the end of July, the paediatrician is on holiday but the secretary said another doctor will pick it up. I rang the urology secretary twice explaining the situation and she said someone will ring me back but that was Monday and last Thursday lol. I can imagine us turning up for surgery on the 2nd and they just say huh? Why didn't you tell us!?

@sproutsandparsnips the urine sample the gp sent off has come back negative for an infection but I did think that at first, possibly an infection travelled further up to his kidney? I'm not sure if a kidney infection would show up or not but I'd of thought it would.

@Sunshinegirl82 my gp practice doesn't assign the same one and you can't ask for anyone specific unless it's male/female. We've seen 3 different gps and 1 out of hours so far.

Sunshinegirl82 Thu 15-Aug-19 20:27:07

I'd keep hassling the secretary until you get the appointment, it's the squeaky wheel that gets the grease! There is clearly something going on, can you at least ask the GP to provide you with some urine dipsticks in the meantime?

PonderLand Thu 15-Aug-19 20:35:34

@Sunshinegirl82 they physically can't prescribe them so I've had to buy more. I stopped doing it last week for a few days as I just didn't see the point. There's nobody to even show them to but bloody Mumsnet lol I keep going between really bad anxiety about it and then thinking it can't be anything bad as he'd be really sick. I know he's got a very small but increased risk of a wilms tumour due to the hypospadias so I asked the gp to feel his kidneys he just said he doesn't seem in pain when he touches them so I don't think he felt them for any growths and I didn't want him to think I was a nutter by suspecting a tumour. Now it's been going on so long that my anxiety is making it seem worse if someone could just tell me he's okay and stop testing I will feel so much better.

PonderLand Thu 15-Aug-19 20:45:19

@Sunshinegirl82 they physically can't prescribe them so I've had to buy more. I stopped doing it last week for a few days as I just didn't see the point. There's nobody to even show them to but bloody Mumsnet lol I keep going between really bad anxiety about it and then thinking it can't be anything bad as he'd be really sick. I know he's got a very small but increased risk of a wilms tumour due to the hypospadias so I asked the gp to feel his kidneys he just said he doesn't seem in pain when he touches them so I don't think he felt them for any growths and I didn't want him to think I was a nutter by suspecting a tumour. Now it's been going on so long that my anxiety is making it seem worse if someone could just tell me he's okay and stop testing I will feel so much better.

I've even tested my wee and dp's to check what the negative bilirubin is meant to look like against my sons as I'm still not quite believing the dips confused we just need a doctor.

PonderLand Thu 15-Aug-19 20:55:27

Sorry for multiple posts that last one said it didn't send

PonderLand Fri 16-Aug-19 12:54:00

@Sunshinegirl82 you were right about the squeaky wheel. I rang the secretary again and she was trying to tell me we don't need an appointment and we have to wait until his check up appt on the 10th. I said the gp won't do anything so what should I do allow him to have an operation whilst this is going on? Ohhh let me look again... there's a cancellation angry 20th August at 9am. I'm really surprised that they ignored the letter from the gp asking someone to see him within two weeks.

Sunshinegirl82 Fri 16-Aug-19 13:47:31

It feels like you're being a nuisance but the NHS is super stretched so I think you have to be on it all the time. 20th isn't too long to wait so hopefully you'll get some answers then.

PonderLand Sat 17-Aug-19 18:54:54

Me again blush had a rubbish day at work due to the stress of all this. He's done a wee tonight that stunk and had lots of sediment in it. I dipped and it was what I think is +1 bilirubin? Nothing else showed positive so that's good at least. I've put some in a sample pot in the fridge and I'll have a look later to see if anything has settled to the bottom of the pot. He seems really happy tonight x

PonderLand Thu 10-Oct-19 10:46:36

I can't believe my last post was in August. My ds has had a rough time, had his op at the beginning of September.

He's been having fevers and the night sweats have picked up, he's sleeping 5/6 hours a night and waking up multiple times drenched. I was worried he had a surgical wound infection but thankfully the urologist checked it out and he was very confident the fever wasn't from that. The fevers are coming and going some times weekly or every few days.

He's had two further episodes of random vomiting and has lost weight since July, has no appetite at all and even when he asks me for certain food he puts it to his lips then immediately says 'finished' and refuses it. He's going between constipation and diarrhoea, I am thinking maybe I should give him movicol again incase there's a blockage?

He's 10th centile for bmi now he was 50th in July. We went to see a dietician who told us she'd see us again in 3 months to keep an eye on his weight and a registrar after surgery said they'd do blood tests if the fevers carry on unexplained. We're going for blood tests this afternoon so hopefully this will all be fixed somehow and I can stop worrying. My dp mum mentioned hormones can cause things like this? I'm pretty sure they are checking them and vitamin deficiencies.

PonderLand Sat 12-Oct-19 19:47:12

Another fever, 38.2 then calpol given and now 38.6. He's hardly eaten anything today so I'm having to syringe maxijul before he gets a hypo on top of this. Silver lining I suppose is there's been no contact about bloods so fingers crossed they're normal. Nobody is replying but I'm writing things down for myself to remember. I've been keeping notes in my phone but they keep deleting.

PonderLand Sat 12-Oct-19 20:05:46

Ketones in urine now. I will have to try and get a blood ketone machine so we can monitor them properly.

IncrediblySadToo Sat 12-Oct-19 20:14:22


I’m sorry that I can’t hp you st all, I just wanted to send a (((HUGE HUG)))

You must be going out if your mind with worry (and sleep deprivation).

Keep posting, you never know who might see your post and it’s a good record if events

I hope to hell you get some answers soon 🌷

PonderLand Sun 13-Oct-19 11:40:19

@IncrediblySadToo thankyou so much for reading this and replying. I really do too,

I work on a medical assessment unit at a hospital and I was just talking to my ward sister about it and she seemed really concerned and said if it was a patient they'd be checking for all sorts of things because the night sweats are not normal, especially not together with the other symptoms.

I'm thinking of self funding a continuous glucose monitor for my son if we can't get it on the nhs which tells you all blood sugar readings and alarms you to any lows. If the bloods come back normal then that's all I can think it can be but it doesn't explain his lack of appetite, sickness, bowel changes, fevers etc!

OctoberLovers Mon 14-Oct-19 00:38:07

You need to demand more tests.

He needs alot more in depth blood tests to start and then go from there

PonderLand Mon 14-Oct-19 12:26:56

He had more high temperatures last night, woke up sweating an hour after we put him to bed. I think he's constipated again he keeps sitting on the toilet to poo then standing up again saying it hurts.

I've got through to the gp and she said they were all normal but the vitamin b12 is raised, she didn't know what that meant or if it's okay and there was no notes on us to have another appt but she's booked us in for Friday at 1pm. Does anyone understand what that means? I remember b12 was one the dietician told us we had to increase as my sons diet is so poor so I'm glad we didn't start giving him anymore vitamins before the test

PonderLand Mon 14-Oct-19 12:49:42

My son doesn't take any vitamin supplements by the way, I've just realised at the bottom of my last post it sounds like he does take them.

OctoberLovers Mon 14-Oct-19 19:39:42

Please insist on him being referred to a specialist

PonderLand Mon 14-Oct-19 20:27:07

Hi @OctoberLovers what do you make of the b12? Surely if he had anything nasty it would also cause other abnormal results?

What kind of specialist should I ask for?

OctoberLovers Mon 14-Oct-19 21:25:19

I think just a pead doctor.

You need to know why he has constant temperatures and blood in his urine

PonderLand Mon 14-Oct-19 21:44:03

@OctoberLovers we saw my sons paediatrician for his hypos in August and he wasn't concerned about any of it, I showed him some videos of my son when he wakes up at night after he kept brushing me off and he gave us a prescription for anti-reflux meds that I'm yet to get because I don't think it's reflux. He told me he thought the blood in urine was to do with my sons past failed hypospadias surgery. I have tried to stop worrying since that appt but it's difficult when my son isn't getting any better.

PonderLand Tue 15-Oct-19 20:07:11

It seems like my son is now starting with chicken pox sad he's got about 8 blisters so far.

Theyvallgone Wed 16-Oct-19 10:02:48

I’m sorry I don’t have much advice, but I’ve read your thread and wanted you to know someone is here and listening.
It’s the most terrifying thing to worry about your child, you’re doing so well to keep going.
My only thoughts are perhaps type 1 diabetes? I’ve been told by paeds that heart murmurs can come and go with temperatures so that could explain that?

PonderLand Wed 16-Oct-19 12:04:39

@Theyvallgone hi thankyou for reading the thread. Yes the heart murmur hasn't been detected since, the doctor said it can sometimes happen when the body is working hard during a virus. The glucose in urine really confused me because his blood sugar reading was fine, he's definitely not diabetic he's never had a blood sugar reading over 6 so all I can think is that the strip was a false reading.

Do you know if these are chicken pox? I will get the doctor to confirm it on Friday. They're on his back and under his arm pit.

minipie Wed 16-Oct-19 12:19:16

I’ve just read your thread, sorry I have no medical knowledge but I can see why you are very worried.

Have you seen the paed since the weight loss? The loss of appetite and weight loss combined with the sweats and fevers surely ought to be grounds for more investigations. It’s been going on for months so can’t be dismissed as just a virus.

If you haven’t gone back to the paed since the weight loss then I would do so (maybe ask to see a different one this time...) I hope you get some answers.

minipie Wed 16-Oct-19 12:19:44

Sorry don’t know if those are chicken pox mine haven’t had it.

PonderLand Wed 16-Oct-19 12:44:03

@minipie thankyou for reading the thread. It's difficult to know what to do. I'm hoping the gp on Friday will know where to go from here. My partners parents think we should go see a private doctor but I'm not so sure. If the bloods are okay then what else is there to do?

I haven't seen the paediatrician since I've been aware of the weight loss. He is my sons consultant for ketotic hypoglycaemia so I'm not sure if he is who I should be speaking to about this. I do need to confirm that they tested my son for glycogen storage diseases when he was first diagnosed with KH, he told me at the last appointment that they have but I'm now aware that the test takes 6 weeks+ to come back and I don't remember that been the case but it was years ago!

minipie Wed 16-Oct-19 13:26:23

I presume the consultant is a paediatric endocrinologist then? If so then yes he probably is the first port of call so I’d ask the GP to refer back to him, tell him all the symptoms since Aug especially the back pain and weight loss as (I believe) the KH doesn’t explain those. Ask him to consider if there could be any other condition or issue going on, including non endocrine related (as sometimes drs are not great at thinking outside their own specialty!)

If he still brushes things off I would go back to the GP and ask for a referral to a more general paediatrician.

Presume you are giving him bedtime snacks etc?

minipie Wed 16-Oct-19 13:28:26

PS you said “if bloods are ok then what else is there to do” but there are 100s of possible blood tests and only a few specific ones will have been done, plus blood tests don’t show everything eg a physical issue like a blockage...

PonderLand Wed 16-Oct-19 13:41:32

@minipie I was going to write this in the last post but the consultant isn't an endo, he's a paediatrician with an interest in KH. My sons urologist questioned why he's under him and tried to get us moved to a different hospital with an endo department but it never happened. This was after the hypospadias surgery failed and the urologist was stumped as to why it failed so badly and thought something might of caused the skin flap to fail, lack of oxygen or something? He got flap necrosis, wound infection and wound dehiscence. Due to that he had to have further surgery in September which thankfully so far seems to be healing perfectly.

He used to always have a bed time snack but due to his lack of appetite he's only having a few spoons of cereal/bite of toast etc. He is drinking about 1/2 cup of soya milk before bed.

PonderLand Wed 16-Oct-19 13:51:55

Also good point about the bloods. There was two bags that I had to give in and they took two vials of blood. Perhaps there is something in these results too which aren't past the threshold for abnormal but maybe not quite right either? I'm not sure how it works and I'm trying to have faith in the doctors but it's difficult after past experiences.

The b12 thing is confusing me and it seems to be something that doctors don't really care about so I don't think that has any significance to what is going on at the moment. As far as I can tell online high b12 doesn't cause any symptoms, and you can still have high b12 blood results but be low in b12 confused due to absorption or something?

minipie Wed 16-Oct-19 14:19:28

Ok I think you should definitely be asking for a referral to someone else. It does seem possible that something else is going on that is being missed and you need someone who is going to keep investigating till they have the answer. If urologist said DS should see someone else tell your GP that and it will lend weight. Endocrine specialist is a good start, if they don’t think it’s endocrine they should be able to refer you on to other specialists. Or a different (better...) general Ideally find someone specific who sounds good (maybe ask on MN for recommendations in your area?) then ask for a referral to them by name.

minipie Wed 16-Oct-19 14:22:21

Blood tests - they only do the specific tests the dr has asked for. So your dr may have asked for glucose and diabetes related tests but he probably wouldn’t asked for all sorts of other possible tests (such as - to give some random examples - iron levels, inflammation markers, thyroid). There’s always more tests that can be done...(Unfortunately- I know bloods on a little one is hard).

moreismore Wed 16-Oct-19 14:28:04

I’m just posting to keep bumping really, I can’t believe you’ve been coping with all this for so long with no answers. If I were you I’d copy and paste a summary of your posts onto a load of forums (assuming you haven’t done this already!) in the hope someone recognised the symptoms. It all sounds awful. Have thyroid hormones been checked? That occurred to me with the night sweats but I’m not a Dr...

PonderLand Wed 16-Oct-19 14:57:37

@moreismore thank you for bumping, I keep posting for the same reason.

I have put Facebook posts on the hypoglycaemia groups and hypospadias groups incase their children have had the same problems and it's all related. From the hypoglycaemia group I've had parents who's children have glycogen storage diseases diagnosed that also had high b12 but that's the only thing in common.

The urinary problems do seem to of stopped since surgery so perhaps it was something to do with that. A blockage in his urethra from scar tissue is one thing. We have the consultation with the surgeon in a few months and we will know more then, he did comment after surgery that it was much more broken down than he had expected so it's not beyond the realms that it started causing him pain and blocking the flow of urine.

PonderLand Wed 16-Oct-19 15:03:19

I'm not sure about thyroid things either. I did mention hormones to the gp when discussing the blood test and he said he'd check them? Am I allowed a copy of the tests do you know? It will be useful to know what was and wasn't checked.

moreismore Wed 16-Oct-19 19:48:17

I know you can request copies of x rays and scans now free of charge under GDPR regulations. I would imagine that would extend to blood tests? Also how would they defend not releasing them to you?

Theyvallgone Wed 16-Oct-19 20:54:52

Hey @PonderLand you’ve had loads of messages today! That’s great.

I think the spots do look like chicken pox, but to be honest, it’s a case of waiting for them all to sprout up or not. You’ll be able to tell in the morning. Hopefully if it is chicken pox it doesn’t affect him too much.

Things like freedom of information requests won’t affect blood tests. You’ll be able to request any and all copies of his notes in writing to the governance team at the hospital. They have an obligation to provide them, although they may redact.

minipie Wed 16-Oct-19 22:17:54

Your GP should be able to give you copies of all blood tests done. They may not be easy to understand though as they tend to use initials/ short forms.

Please do ask for a referral to an endocrinologist or different general paediatrician.

PonderLand Fri 18-Oct-19 13:29:22

We've just had the appt about blood results. He's referring us back to the paediatrician who probably won't be happy about that as we saw him in August. The gp couldn't find any previous tests for glycogen storage disease so I can ask the paediatrician about that.
When I asked for a copy of the blood results the doctor then told me that a few other things were out of normal range. They have '!' Next to the ones that are out of normal range. If I hadn't of asked for results at the end I'd of never known about them.

minipie Fri 18-Oct-19 14:36:08

Glad you have the results. Did the GP give any indication of what the abnormal results could mean? When will you see the paed do you know? Also are you happy to go back to the same paediatrician - if you’re not, don’t be shy about speaking up to the GP, say you felt dismissed by the paed last time and ask to see someone else. Either way please please do keep pushing for investigations and good luck.

PonderLand Fri 18-Oct-19 15:30:39

@minipie he said it's likely all from a virus, he had a cold last week too and obviously he's got chicken pox now so it all seems a bit pointless putting him through the test, if id of known a cold could throw the tests I'd of waited until after it had passed so the results are accurate and reliable. The gp picked up on the cold prior to the test so it would of been good of him if they'd made me aware as I don't feel any further into finding a cause or an explanation if all abnormal blood results are put down to the cold. He also said high b12 could be from a cold too? They never tested hormones, the gp told me they would so again it's a let down. I think once he's recovered from chicken pox I will go to a private endo, they will probably say the same thing but hopefully they will do what they say they will as I'll be paying for it.

I did express concerns to the gp, especially because there is no knowledge of the paediatrician even checking for GSD but he said it might just not be showing up on the system. As usual more questions than answers unfortunately.

minipie Fri 18-Oct-19 17:14:06

Yes very frustrating as maybe the bloods are all be down to a cold but what about the sweats and weight loss/no appetite... basically each thing by itself can be explained away but you want someone to look at everything all together...

PonderLand Mon 21-Oct-19 14:54:58

My son has done really well with the chicken pox, he hasn't itched and actually is eating a bit more than normal, go figure! This morning he did a light cream coloured poo but I'm guessing it's likely caused by the pox virus. He had the same a few years ago after a sickness bug and it returned to normal with in a week so I'll keep an eye on it. He seems to be coping very well but night times are still hard going.

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