Heart murmur and night sweats

[PonderLand]

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!

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

Hi,
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?

@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.

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.

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

@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!

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?

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...

@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.

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 due to absorption or something?

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.

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).

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...

@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.

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.

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?

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.

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.

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.

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.

@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.

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...

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.

Hi I thought I'd update. The gp sent a letter to the paediatrician asking him to see us and also he asked if my son had been checked for gsd during his hospital admissions.

The paediatrician replied saying 'there is seldom any medical cause for excessive sweating' and also 'the query about gsd is important and that we have investigated (at least the initial screening) when we undertook hypo screen in ds during his admission in feb 2017' he ends the letter saying 'if his parents are still worried with this regard there are some investigations like blood triglyceride, cholesterol, urate level and abdominal ultrasound that might assist but the only definitive test is a genetic test' the letter ends there and there was no further info about an appt or anything like that, I'd of had to make another gp appt just to be referred again. I decided to wait until after Christmas to see if anything improved as I couldn't face going back to the gp just to ask for a referral again.

In the beginning of January my dp weighed my ds and he weighed 13.3kg, he's 101cm tall, his birthday is in June 2016. It put him just below the 2nd centile for bmi so I made another gp appt as nothing had improved and he was just getting worse. The gp was fantastic and he talked about blood disorders and asked if that was my worry as my son is having red flag symptoms that need to be thoroughly looked at. He was really good. I showed him the letter the paediatrician sent and he was shocked at it as the paediatrician basically brushed everything under the carpet and didn't address any of the concerns seriously. The gp sent off a referral asking for a new paediatrician who can look at my son with a fresh set of eyes. The next week I received a text saying my son would have an appt in 4-6 weeks. Then a few days later I got a letter saying a consultant has reviewed the referral and denied it. It said the gp would be in touch to explain the reason but nobody has. Last week I got a letter for an appt with the original paediatrician for the end of February.

So yeah that's where we're at right now. I'm not sure if the paediatrician had a hand in declining the referral but I can't imagine the appt will go well as we've specifically asked for somebody else. I was talking to a close friend about it all at the weekend and she was telling me to go back and demand this and demand that but it is so hard to get anywhere.

sorry to hear that op do you have 250£ or so spare to see a private paediatric gp?
if you are near london gosh or the portland.