question re illness affecting seizures and mood swings

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donnajane

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My little man has been unwell with a bad cough for almost a week. We took him to Dr two days ago and of course he was fine in Dr's office but then really bad as he had been a little while later. We took him back to Dr today, we had to see a different one but he is also trained in Paedeatrics, he said our little man now has crackle in his right lung so he is on antibiotics now.
I know seziures can increase when ill as we have seen this many a times but what we are finding strange this time around is the strange behaviours he has been having more often lately are now becomming way more pronounced as well. He is generally not to bad until around noon then after that he suddenly looks shocking lots of coughing, very agitated, suddenly tired, etc but then will bounce back to an almost normal toddler for 5 to 10 min then back to the NQR state for long periods. He has his nap then wakes into the same NQR behaviour with these strange short "normal toddler periods". With our other kids if they are sick they are sick they only pick up if you give them panadol and often stay OK again until it starts to wear off. I have never seen huge sudden continuious mood/behavious swings like this.
It will be interesting to see how he is now with the antibiotics as if he goes along his usual pattern when he has them his issues will all but dissapear after around 3 or 4 days on the antibiotics then he will often stay with longer "good periods" for around 1 or 2 weeks after stopping them. I have mentioned this to his paed, GP and Nureo but so far no one seems to have really taken any notice of this or if they have can see no reason why it would occur. I am sure it is linked in with his issues and his brain lesion. It is going to be interesting to see if this happens again this time.
Has any one else seen huge/sudden mood swings like this in their child and if you have have these mood swings become more pronounced when they are unwell.
Although I often feel like I am on a never ending search for answers to my sons condition I do feel we are slowly moving in the right direction to finding an answer although I think we are still a way off.
He is also eating very little at the moment, not even a meal a day, so Dr has asked us to give him lolly pops to keep his energy up, he's not really interested in them either but thankfully we have been able to get him to have milk. They are not sure if it is him having trouble coordinating eating, as this sometimes happens and he can only have mash or if it is he is to unwell to eat. My husband and i are starting to wonder if we might end up back at the ED with him in the next day or so if he doesn't start eating more and if he doesn't respond to the antibiotics. Fingers crossed he has a bit better night tonight and we start to see an improvement in the next 48hrs.
Sorry for the long post. Thanks for reading. It helps me so much writing it all down.
Donna
 
I hope the antibiotics kick in soon and your guy's health improves in every way. The mood swings and strange behaviors could be a form of seizure, so it would make sense that they might increase when his seizure threshold is lower (due to illness or fatigue). Have they been able to do an EEG or sleep study, or is he too young for that?
 
Thanks for the info re mood swings and strange behaviors. His carers have said it is like he becomes a totally different child and like us they feel they are not toddler mood swings. He has had 5 EEG's first 4 clear but on two they got another person in to watch his eye's with the lights as they appear to roll up but no movement on his EEG. On his 5th EEG he showed slight slowing on the back right of his brain and again the eye response to the light but no altered brain waves with the eyes. A few months after last EEG he had his first MRI so it's now been well over a year since he has had an EEG. His neurologist explained that his brain lesion did not sure on his EEG as it is deep in his brain and the EEG looks at the outer of the brain. He see his neurologist in just on 4 weeks and I think I will ask for another EEG. He has had a sleep study but it was not a true study for him as he usually goes to bed around 6.30/6.45. He can't last any longer and often says bed and takes us by the hand to his room. With the sleep study they didn't finish hooking him up until after 10 and then he had his Tegretol which helps him sleep anyway. He finally got to sleep close to 11pm then slept off and on until around 4.30/5am. We were told if anything he had mature sleep brain waves but we were then told it was probably the Tegretol and late sleep time which caused this though and another one done at his usual time might show something totally different as at home the first 4 or 5 5hrs he is usually not to bad.
At the moment he seems to be following his usual pattern with antibiotics in that he is getting better and becoming more and more like your average toddler for most of the day. We are all waiting for Friday as at the moment that seems to be the day when he really struggles with his strange behaviors and what we are pretty sure are seizures, although they can happen other days as well, Friday just seems to come up more often. Child Care are also waiting for Friday its almost like they worry about how he is going to be on Friday's. They now call his NQR Friday's a "Usual Friday" for him.
We love our youngest so much and although he often worries us I also find it fascinating with what is going on, i.e. waiting and watching to see if this lot of antibiotics have the same affect as in the past. If they do I just hope one of his Dr's will look into why as we have mentioned it to them each time it has happened.
 
Maybe he would benefit from a one or two-month-long course of low-level antibiotics (if it's safe to do so)? There have been studies that show certain antibiotics can help with neurological movement disorders in children.
 
We saw the GP for a follow up this afternoon and he said his lungs were clear now but as he had had pneumonia and he still had a low grade fever he wanted him to stay on the antibiotics for another 5 days. I was a bit shocked re him saying he had pneumonia so annoyed the Dr we took him to the day before had missed it. I mentioned to the GP re him being better on antibiotics and he said what can happen is the antibiotics make the Tegretol act as though its stronger, this makes total sense so will definetly mention it when we see the Nureologist in a few weeks as our little man has grown a quite a bit and been on the same dose for almost a year.
On a positive note I had an email from the speech pathologist and he is having his initial assessment next Wed. So excited. I wonder what type of day he will have as sometimes his language is amazing other days he appears to be quite delayed.
 
So maybe that means the Tegretol dose should be increased a little to give better seizure/symptom control. I hope the speech pathologist is helpful. Have you seen him before or is this the first time?
 
Yes we are hoping his nureologist might increase his seizure meds a little to see if it has any affects.
This will be his first appointment with a speech pathologist. His paed referred him to this one in particular as she specialises in children with autism. His paed doesn't think he has autism but he can be very different so though this speech pathologist was use to dealing with kids who were a bit different so might be able to offer us some assistance. If he is still in this "pretty good place" his speech is sometimes recogniseable.
Child care were so excited today they got through their first Friday in months without struggling with him. He still had his strange behaviours but I think they are now starting to work him out more and how best to work with him not against him if you know what I mean, and thankfully it was not as bad as some of his friday's have been.
I can't wait until we get into early intervention so they can also give us some tips to working with him when he gets into his "different periods"
Thank you so much for taking time to read my posts and respond it means a lot. I do keep a diary for our little man and myself but you always give so much support and offer tips and ideas which I really appreciate.
Donna
 
You are right to follow your instincts as a mom, but it must be nice to have other folks who are keeping an eye on your guy confirm what you feel in your gut. You aren't alone in all this, which can make a big difference with each step. I hope you are taking care of yourself too. :)
 
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