Chalys can you please give me some advice regarding my ds.

I'm concerned his high temperatures are lasting too long. It's 3 days since he had his seizures and I thought his temperatures would becoming under better control. I know how sick he was but am wondering what my next step should be. I was thinking I'd try to get into the paediatrician ds has been seeing tomorrow.
I noticed when changing him that his wee was a bit smelly so have got his nappy off and am waiting to catch a sample.
I've noticed that he's different since his seizures. He has developed quite a temper and has never shown to be like that before. He also twitches in his sleep heaps. He's also still pulling funny mouth movements as if he's uncomfortable.

Please if you can help with some advice I'd really appreciate it smile

Hi there!

Temperament changes are actually very common after seizures, (adults sometimes get really aggressive even when not usually like that) and if he is still twiching then he's still at risk of having another one.

Seeing it has been well over 24 hours of temperatures I'd be concerned about infection. His wee might be a bit smelly if he's getting dehydrated (uti's are pretty uncommon in boys, but it's still a possibility so still a good idea to get that sample.) and seeing as he's got temperatures he's possibly losing more fluid through sweating and just in general he will be using a lot more energy being sick. So he definately needs continued increased fluids, and seeing as it's been so long the hydralyte ice blocks are pretty important as they will replace the salts he is losing. Dehydration can lead to an electrolyte imbalance so it's really important as you don't want that on top of what's happening at the moment.

You should probably take him up to the emerg dept today... it's been a pretty long time to be hanging in there and if it were an infection it's better to treat it sooner rather than later.

Even if they can't do all the tests needed to find out what it is being a sunday, they could at least start him on a broad spectrum antibiotic and hope that he starts responding.

The reason I'd suspect infection is that if it were viral the temps should have subsided within 24 to 48 hours.

As I mentioned the other day you should still give the panadol and nurofen, spaced apart by a couple hours so that they cover each other nicely. They are safe to have together as they both work from different pathways so you're not overdosing at all, and is what they'd do in hospital.

Hope that helps, you must be getting exhausted by now!!

And btw.... Once he is better he should get back to his usual self. It is very uncommon for seizures to cause permanent damage or changes unless the seizures are extremely prolonged, as in the doctors can't make it stop, or if they're having them on a regular basis over quite a few years.

Hope I havn't concerned you regarding infection... I didn't ask - has he actually improved at all since it first started? If he is bright and alert and still playing or distractable it would probably be ok to wait until tomorrow (you might save yourself hours of waiting at the emerg dept!). They may not take it seriously if he still is ok within himself - and they might even advise you to wait til tomorrow to get him checked out.

If he is really flat/dehydrated or getting to the point where he's floppy and hardly responding to you then you need to get him checked out asap. The general rule of thumb is that babies go downhill really fast, but they usually recover really quickly too once treatment begins.

Also... have a press of his tummy. If it causes him pain or you feel anything unusual you might need to get him checked today. His tummy should feel soft to touch. If there's any part of his tummy that looks distended, out of shape or feels different to touch in one area then get him checked out. If there is inflammation of an organ (such as the appendix) it will have a feeling of 'rebounding' when you push, and it would cause him pain.

Has he been using his bowels ok? I wouldn't be concerned if he has had less poos as he's not eating much, just as long as it hasn't been 2 weeks!

and, does he have a cold or a cough?

A million questions I know... just trying to get some idea of what he's like. smile

Thanks so much for replying smile
I've got an appointment for my doctors as they are open Sunday in a couple of hours and after chatting on the phone to the doctor he said he will test his wee that I finally got him to do after his nap and said it sounds like antibiotics may be needed. He seems OK at the moment and his temperature has now dropped under 37.5.
It just seems like 1 minute he's fine and the next his temperature is over 38 and climbing. We are scared of him having another seizure but have mentally gone through what we need to do if it does happen again. We were told he has a high chance of having more as his went for so long.
We are worried about him having a seizure in his sleep. Can it happen in his sleep? My dh is getting a bit of sleep now as he's too worried of ds to sleep at night. I'm lucky that dh watches him at night so I can sleep. We were so scared watching his body fit and then go lifeless. He was so grey and his face looked in so much pain. He looked terrified and we felt so helpless. We were told that if it happens again to call an ambulance to meet us 1/2 way as sometimes the second episode of seizures require a needle to stop the fitting is this true?
Anyway I really appreciate your advice. Thankyou smile

Yes sometimes they give midazolam to stop a seizure. Your son would have no memory of having one so you really don't need to worry about it causing him pain - although it is VERY distressing to watch I know. And yes after having one they are at risk of having another which can be for longer and more severe. The thing with seizures... is that it's actually the bodies way of reseting the hypothalamus - which is the temperature regulator within the brain. So as much as it's scary and awful it's not actually harmful unless they are really prolonged or wont stop.

It is possible for him to have one in his sleep - however if you are making sure you don't miss a dose of panadol/nurofen and his temperature is down he shouldn't have one.

When dd was really sick earlier this week she had temps of 40C - I set my alarm through the night when she was due panadol or nurofen. I would give it even if she didn't have a temperature, otherwise it could still go up and I'd be sleeping away unaware. (Or unable to sleep due to worrying about her!!) During the day you can decide whether or not he needs it or not based on his temp, but during the night it's better to be safe!

I'm pretty tired now as I lost a fair bit of sleep, but if I hadnt have done it that way I wouldn't have slept at all due to worrying!

He does seem fairly alert but just quite slow in reacting like if I call his name he'll be really slow to respond or when he's looking at something like a toy he seems to have to look twice before seeing it. His nose has been running a little bit and he occasionally coughs. His tummy doesn't seem sore to touch.
The funny thing was when he had his seizure he was OK he'd had a temperature in the morning but that had come down. I suppose thats why it felt so unexpected(not that you ever expect your bub to have a seizure) but if someone had asked me prior to it happening how ds was I would of said he's pretty good.
I now am trying to think did I miss early warning signs. I don't know all I can do is to make sure I'm better prepared if it hapene again. FX it doesn't. I feel so sad for any parent who sees their child go through it.

Thanks again sweet xx

No problem, and don't blame yourself.

Being slow to react might just be because he's not feeling himself. I'm a bit 'slow' too when I'm under the weather! smile

Even I don't expect that dd would have a seizure when she has a temp. It's not something we expect to happen at all and when it's never happened before it's not something you would foresee, and we're all programed to think it wont happen to us! If he seemed ok on that morning it's perfectly understandable that you didn't think anything was wrong.... none of us would!

I missed dd's uti because she had no symptoms until she got really really sick with it - and it happened really suddenly. I felt awful because I thought I should have been able to pick it up earlier but of course we're busy living and if they seem ok, we think they are!

Hope he gets better soon.
xx

How is your dd now? I really hope she's recovering well. It is so exhausting isn't it when our children fall ill.
We were worried of how long we can keep giving panadol for? Does panadol cause constipation at all if given for an extended time? He isn't at the moment but I was just curious.

Thankyou smile

You just keep giving panadol until it's no longer needed. The benefits outweight the risk at this point - and medical decisions are ALWAYS made on benefit vs risk.

Of course we all prefer that we don't have to medicate our children at all. It's preferable to not give antibiotics too as we like to let the body build up immunity to illness. But when it's needed, it IS needed.

Nurofen is probably the one that is not preferable to give over panadol, it can irritate the stomach and bowel, and if taken in large doses over a very long period of time (like months) can cause ulcers. That's why they recommend giving it with food, or milk.

Panadol hasn't got codeine in it like painstop has so it shouldn't cause constipation. It's more likely that he'll get constipation from dehydration.

My dd is back to herself now, she responded to the antibiotics within 24 hours, but it wasn't a nice 24 hours. Most parents would have put thier kids in hossie with how she was... floppy and unresponsive! However I knew I was doing the same as they would have done - and we managed to avoid all the blood taking and IV fluids by staying home and me forcing her to drink constantly. Much less traumatic for dd though! I knew what the cause was so I just wanted to treat it so she could get better... they tend to do every test under the sun once they're admitted which can be unneccessary if you already know what's wrong!

Just thought of another question Should ds be having follow up checks or scans to check all is good? Do you think he should see a paediatrician or would my gp be ok? If a paediatrician appointment is unnecessary I don't want to take up their time. Thanks xxx

If the seizure did not have a cause they would most definately follow up with scans and tests.

And it depends on the severity of the seizure as to whether or not they'd recommend it for your ds. I think from memory if it's just one seizure and the cause is known they don't bother, but if there's a second one they do. Not 100% on that one, but that's something you should discuss with your dr today.

Oh I'm so glad she's feeling better. And I agree that it's so much better to care at home than in hospital if you can handle it. The hospital staff told me what to do and also said ds would recover better if in his own surroundings but if he got worse to bring him straight back.

I hope you can now rest that your dd is feeling better it must of exhausted you so much with also being pregnant.

xxx

Yeah it was the 1 episode but his first 1 was for about 3 minutes then he stopped fitting for about 30 seconds then he started fitting again for about 2 minutes. He looked like he passed out after each one finished and then on the 30 minute trip to the hospital he would fit for a minute then be just moaning and gasping for air and then he would fit again for about a minute. This went for the whole trip in and he was gasping for air when we arrived at the hospital. He didn't know who we were till about 30 minutes after we'd been at the hospital. You may of already read this on my other post but it's helping me process the last few days events just to write it down.
Thankyou for all your advice it's been so helpful and quite comforting

xxxxx

Must have been so so awful! Would still be one of my top fears for dd, even though I know she'd be ok it's a whole other level when it's your own child. I'd be a complete mess!

Not a problem at all, hope all goes well today and he gets what he needs to get better!

eta: just a bit of a heads up - when he gets better you might have to be super vigilant when he gets sick. Some kids are more prone to having seizures from high temps and yours might be one of them.

Chalys smile

Hi just wanted to give you an update on ds. So his wee was tested and it showed glucose which it did after his seizures and I was told thats an indication of a viral infection, Is this true?
He had no temperature and has continued having no temperatures since yesterday morning so Yay it looks like his body is fighting whatever bugs are in it.
The doctor said it's probably a good idea for him to see his paediatrician so they know whats been happening and they will be the best ones to decide if further testing needs to be done.

I am scared to get ds's vaccinations now as he always gets temperatures when he gets them. The doctor said wait 2 weeks and he should be fine, I don't know. He was supposed to get his 12month ones the day after his seizures.

Thankyou so much for your advice and help it has really helped me so I have the information I need if it happens again, I really hope it doesn't.
Thanks sweet xxx

Great news!!

The glucose in his wee doesn't mean anything bad - you can have seizures from diabetes in which case there would possibly be glucose in the urine - but considering this was the first time it has happened and he had a temperature that would be unlikely. The temperature indicates either infection or viral illness - and if he didn't need antibiotics to recover then it had to have been viral.

It's a bit of a guessing game and a process of elimination to work this stuff out!

The body does all kinds of things to recover after illness, so I'd say in a couple weeks his wee will be back to normal again.

I'd be a bit hesitant to get his needles done til you feel he is fully recovered. It wont do him any harm to have them a bit late anyway.

Poor lil mite! And poor you! Cheers to a big sigh of relief that its pretty much over!!!! (You'd better shout yourselves to something nice and relaxing - a massage or something!!)

Yeah I can't wipe the smile from my face as I feel so happy he's improving. He is certainly making the most of all the extra attention even though he's always been doted on by his 3 older sisters and mum and dad.
How long is too long to leave vaccinations? Or does it not matter too much. He doesn't go to childcare or anything like that and no playgroups so he isn't around other bubs.

xxxx

It doesn't matter much - if you want to leave it a few months even that's ok too.

Chalys Hi I'm just updating on ds smile

So I had another check up with ds at the GP yesterday and a big chat with the doctor about how Í'm so worried of it happening again. She had the report from the hospital and went through it thoroughly with me and I now feel alot better. After reading the report she said we don't need to see a paediatrician yet as ds's temperatures haven't returned and he seems to be improving. He is alot happier in himself and last night was almost back to his normal cheeky self.

I'm glad this whole ordeal seams to be just about over and have appreciated all your help. xxxx

Hi I love my babes,
I have been watching and sending possitive vibes and thoughts your way throughout the ordeal that you have been through.
I just wanted to say that I am soooo happy that there has finally been a happy outcome for you smile

Thanks Dansally for your kind thoughts for my ds smile

I feel so relieved that he is recovering well and I really hope it doesn't happen again but if it does I'll be much better prepared. As much as you can. My 3 dd's are so relieved to see ds better they, saw it all happen and were so scared but they held it together so well. We have gone through what we'd do if it happened again and brushed up on how they call OOO etc.

Thanks sweet xxxxx

Glad that it's all been good news.

Onwards and upwards from here!!!

xx