Ds, temps up to 40, dr thinks he is having febrile convulsions, any experience...

[hazeyjane]

....just took ds to dr after 2 nights no sleep, not eating temps up to 40, vomiting up phlegm. He has never been great at regulating his temperature, and I thnk his circulation is poor, his feet and hands are freezing when his temp is raging.

Last night was asleep on my lap and had a couple of massive jerks, like when you feel as though you are falling off a step in your sleep, then his leg and arm would twitch for a while afterwards.

The gp said it sounds like febrile convulsions,to make sure we keep his temperature down, and if they go on for longer than 5 minutes to call an ambulance.

Ds has had a few seizure like episodes, and his paed has suggested starting him on epilim. Are febrile convulsions related to other forms of seizure? Would they be controlled by taking epilim? Is there anything else we should be looking out for.

The worry has always been wrt ds's chest, as he has recurrent chest infections, has a tendency to aspirate and has had pneumonia in the past. I took him to gp to listen to his chest, but am a bit thrown by the febrile convulsioin thing.

Sorry all a bit rambly, have had no sleep for last 2 nights

hazey sorry to hear your DS is unwell. It is always very worrying. I don't know the link between febrile convulsions and epilepsy but I do know that DD (who is definitely epileptic) always had seizures when she was unwell and her temperature was raised - it seemed to be the major trigger and still happens regardless of the fact that she is on anti convulsants.
DD also has very poor circulation and her feet and hands go purple when she is ill too. It can be quite normal but can also be a sign of more serious issues, so keeping a close eye of their general overall condition is important.
Hopefully he will start to pick up again soon. Take care

Thankyou, BigblueBus. Ds's feet used to go a kind of grey colour, now they go white, we are seeing a cardiologist on Thursday, because there is a link between heart problems and the genetic condition they think ds may have.

Interesting about illness and seizures, i have been noting down when ds has 'episodes' and it seems to be worse when he is very tired (eg twice after we have been travelling a long way in the car), and when he is ill.

I must admit I have no experience but if you can get through on phone to the paed who suggested epilim via secretary I would mention the possible febrile convulsions to him in case that changes his thinking at all on when to start him on epilim. Hope you get some sleep tonight and Ds is over the worst of this bug.

Oh Hazey you poor thing. It's so scary to see your dc having a febrile convulsion. ((hugs))

Ds2 used to have them and we were told there's no connection between them and epilepsy. I was also told that, because they are different in origin/type, they don't cause any damage.

Febrile convulsions are caused by the sudden rapid rise in temperature, rather than the height of it, iyswim, so your best bet is to alternate calpol and neurofen to try and keep his temp stable, even if it's still on the high side. We were told to keep the room at a sensible temp (not cold as that just cools their extermal temp, but they can still have a high fever internally). Another tip was to offer him lots of ice lollies/ice pops, as they lower the core temperature really effectively.

Ds's worst convulsions happened when he had severe pneumonia as well and his chest was always big worry when he was younger. He didn't/doesn't display normal 'chest' symptoms and doctors find it almost impossible to hear noise from his lungs. He's had silent pneumonia a few times and his symptoms were a high temp, stomach ache and painful legs, each time. (Apparently the stomach pain was from his inflamed lungs pressing on his stomach.) His GP record is still red-flagged and as soon as we suspect a chest problem they have him straight in for checks.

Children tend to outgrow febrile convusions by the age of 5. Ds2 had one at around 6, but is now nearly 9 and hasn't had any since then.

That is interesting about not showing normal chest symptoms, ds doesn't look as though he is labouring to breathe in the 'pulling in under the ribs' wat, partly because he has quite a puffed out chest and abdomen, and also because his low tone disguises the effort he is putting in. We know when he is suffering though because he goes very floppy and can't stand up.

I have a bad feeling about him atm, because he is going so up and down. His gp is great and knows that he can plummet really quickly, so all we can do is keep an eye on him.

I think you're right, TLP, I'll leave a message for his paed, as he is being monitered wrt the seizures, and this may be relevant.

Dh is home with tonsilitis (aaagh, a houseful of poorly men!) which means I can at least catch up on some sleep now, before the girls get home from school.

hazey, I don't know what SN your DS has or how old he is.

Just a couple of remarks:

Febrile convulsions usually occur when temperature rises suddenly; it is not so much about how hot a child is, but how quickly they went from 'normal' to 'fever'.
Also freezing cold hands and feet during a raging fever is normal, most children do it. It's called 'centralising' - the body basically makes sure that the important bits (internal organs/brain) get most of the circulating blood volume and hands/feet/tip of nose are left to get on with it - therefore cold.
Single jerks can be seizures or precursors to 'big' seizures or nothing (most of us will be familiar with the sudden jerk just before falling asleep - I know I am...).

If it looks like he has some kind of respiratory infection and he has low tone, has his oxygen saturation been checked (wee probe on his finger, usually with a red ligth)? That can be quite a good marker how much he might be struggling. That and respiratory rate. Yy re contacting his paeds.

I hope he feels better v v soon. Sending lots of strength your way.

ds is 2.6, he has a possible diagnosis of a genetic condition called Kleefstra syndrome (9q34.3 deletion). He has had nighttime episodes of screaming, with loss of tone down one side, distended throat etc, that his paed thinks occurs as the result of a seizure. He has had an mri (which was normal apart from some high signals in the frontal and temporal lobes) and an eeg (also normal). His paed has seen a bit of film of the screaming and ds asleep afterwards (when he is unable to close his eye, on the side that has lost tone) and thinks that despite the clear eeg, it is likely that ds is having seizures. We are waiting for an appointment with a neurologist.

I worried about the cold hands and feet as ds does seem to have difficulty regulating his temperature, I don't know if this is a circulation thing, but I know it is a common feature amongst children with Kleefstra syndrome.

The jerks as they are going into a deep sleep are either hypnic or myoclonic jerks. They are usually benign and more common in juvenile immature neurological systems or when there is a neurological injury (like my dd).

They are more common when tired, ill or during growth spurts.

Febriles as has already been said are due to the sudden increase in temperature however that said many epileptics do have more seizures with a fever.

Have you had a 24hr eeg rather than a random one? That should really be done before starting drugs IMHO, and do you see a neurologist?

There is a group on FB called epilepsy sucks UK and its good for finding out more. Have to say though that the nocturnal events sound seizure like, particularly the loss of tone, have you heard of Todd's paralysis? That's what dd gets.

Sorry missed the waiting for neuro appt.

ds still ill, temp up all day, and dr now hears crackles in his lung, so he is on antibiotics. He is a hot, tired, floppy boy.

And I am knackered.

Aw poor little ds, Hazey. Hope the abs kick in quickly and he starts to feel better soon.

My DS hit 40 degrees tonight after two days of temps of 39. So fed up with it as he won't take the meds. Bloody autism. I'm going to get the suppositories from the GP or I'll just pay the £45 for them. Have you considered if he has a uti as well? What anti-bs did they put him on Hazey? Broad spectrum? Augmentin? Trimithroprim is also good for chest infections (and UTIs) we have found in the past. Just got DD on a two week course of Augmentin today. Fed up with illness in this house. I think I need to move us to California. Better weather.

Poor littlebear, hope he is ok, did you manage to get some suppositories?

Ds had his sats taken last night and they were 93, heart rate 130. I think that is ok, but asked on the health board and they all said he should be in hospital, the nurse sent us home anyway, and he doesn't look as floppy as he normally does if his sats are low,

going to an appointment with a cardiologist this morning, so will get him checked out then.

Hazey hope it goes ok this morning at the cardiologist. DD SATs were generally above 93 so I think that's ok. When they drop into the 80's is when it's concerning. Small people's hr is generally faster than an adults anyway. The anti-bs might be working now.
Little Bear's temp this morning is 38.1 still warm, but quiet and not crying. Off to get the expensive suppositories after the school run. I think he's got flu tbh so it's just trying to keep him comfortable and keep his fluid levels up.

Hazey - soory to see this thread and wishing your ds well. I hope appt today is useful. Big hug

Hope you managed to get the suppositories, Sallybear.

Cardiology appointment was a nightmare, poor ds screamed all the way through, the room was full of students, and ds was obviously feeling rotten anyway.

It turns out the innocent heart murmur at birth, is actually a duct at the top of the heart which has never closed, so the cardiologist wants to review him regularly, and has ordered a 24 hr ECG to be done in a few weeks.

The lovely nurse on the desk, did Obs for us while we were waiting, and his sats were 97, so at least his O2 levels are better, but she said to keep an eye on him and bring him into the children's ward if he got worse,just have to hope the abs kick in soon, otherwise it is a weekend in hospital.

Sorry to hear ds is ill hazey, I know it is horrible being at home when worried like that. Dd has seizures when ill due to both her genetic condition and reflex anoxic seizures it just adds to the stress and sometimes hospital feels like the better of two evils. Actually the reflex anoxic seizures were diagnosed after she had two whilst in hospital with a bug so it was the best thing as would have been about to start epilepsy meds otherwise which would have been pointless for her as it turned out.

Anyway good luck, this time of year is awful roll on spring xxx

Suppositories prescribed and administered. He is downstairs now, has drunk Ribena and eaten chocolate cake. Hoping that we can turn the corner now with all this.

Blimey a duct that never closed off?! Will they need to operate at sometime, will this have long term conveniences for him? If you have any questions that you didn't ask as you were too overloaded to process it all, email the consultant. That's what I always do. Also it just helps you to clarify your understanding if everything. Glad to hear that the O2 picked up. Poor munchkin, the joys of teaching hospitals. If you don't want them in there, you can ask for all medical students to leave next time. Something that poor DS didn't need. X

hope the suppositories are working their magic!

I think he said that at the moment he would just review the duct, and that it wasn't big enough to require surgery. I have written a list of question that I meant to ask, but didn't and will email him. He is going to be in contact about the ecg, so I could talk to him then.

I usually don't mind students, and know how important it is for them to be present. I do hate it when they start looking all excited at the words 'rare condition', and had to ask one woman to stop, when she was trying to listen to ds's chest to see if she could hear the murmur, completely ignoring the fact that ds was screaming the place down and hitting himself in the face.

It made me laugh that at the mention of Kleefstra syndrome, they all started googling frantically on their phones!

I had that this week. Fifth year med student (they look so young) sat in at Paed appt for DD. he looked very clueless, so I asked him if he had heard of Treacher Collins Syndrome - no came the reply. So I listed the symptoms and he almost died from excitement. Looked at DD in a while new light, not just another teenager. I used to have it written down on a card, when she was small as it used to drive me mad when students would ask you tons of questions in a rush.