Laughing seizures

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Yes, acidosis means too much acid in the body. Two seizure meds -- Topomax and Zonegran can cause this problem. It can be quite serious -- leaching calcium from the bones, causing extreme fatique, and can even cause seizures.

As far as the Tegretol, I know what you're saying. We don't want the dangerous side effects, yet we don't want the seizures either. I think I'd go ahead with lowering the dose, though. If meds are at toxic level -- that can be pretty serious. We've had that happen two different times with two different meds, and both times, Jon had serious and permanent complications.
Hi Karen

I had Ethan back at the doctors today as he was complaining about pain near his breast area , everything is ok he just has sore muscles and the gp doesnt think that it is a side effect from tegretol , also the hospital doctor is saying that tegretol isnt causing any of these side effects and i have to put him back on his original dose of 800mg , my Husband and i are getting frustrated by this so we are both going together to the hospital on friday to ask more questions as the doctors want's to check Ethan over again .I also have booked Ethan into the optomertrist to get his eyes checked again as they are worried this could be the cause of the headaches .My Gp also said that if tegretol isnt working they would change the medication to something else .How is Jonathan doing now ? Those side effects sound dangerous ,it is a real worry isn't it ? ,. Do you add the baking soda into his food ?
 
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Its hard to day if the Tegretol is causing some of his strange behaviors and even his Neurologist is unsure. All we know is that when he initially started it it was like it opened a door in his brain that was closed before. But this may have been going to happen anyway.
I think the Neurologist might start to wean him off the Tegretol when we see him next in November to "see" what happens. I will admit I will be a bit nervous if he does but also think it might be worthwhile to see what happens over a few months if the seizures get worse again and if he closes up even more.

Such a trial and error to get things right but well worth it if it helps our little guy reach his full potential.
Donna
Hi Donna ,

Tegretol sure is a tricky one isn't it ? My GP keeps telling me that is not causing Ethan to have blurred vision , dizzyness and to lose balance yet all these symptons are on the white leaflet that comes with tegretol listed as side effects . If tegretol is not causing it what is ? Im baffled .I totally agree trial and error is all well worth it ,i just pray we all find that perfect balance so all of our kids will not only be free of seizures , but everything else that is affecting them as well . :e:
 

donnajane

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How's your son going? Is he still on the Tegretol.
Our little man had a usual Friday which means not good but confusing for everyone. He has had one of his best weeks in ages. We are now taking an extra day off work so he has less time at child care hoping this would break things up for him and "avoid" the Friday. But sadly no. Its so strange as what ever is happening seems to be almost cyclic at the moment although I think his child care are doubting this and they are blaming having a "student from Uni" doing placement in their room on Fridays but I think it is more of a coincidence than her. He started going a bit "different" when we dropped his big sister in her room, he suddenly had this strange almost "panic" scratching near his eye then wanted to be carried and closed his eye's. Being 2 1/2 he's usually "I do, I walk" but it was almost like he new something was happening. In the room he was holding onto me so tight and it looked like his eyes rolled up a couple of times, the carers wanted me to wait until the next shift started, only 10minutes, so they would have more staff to help with him. His aide doesn't come in until 11am so he has a couple of hours in the room without her, she is there not just for him but more to cut the children/staff ration down so that when he has times like today he can have lots of attention. They have decided that next week they are going to try having her start a bit earlier to help him settle on a Friday. When I picked him up tonight he was fine but child care said his day was up and down for most of the day. Thankfully he is at my work so I was able to check on him throughout the day. Earlier in the week I was wondering if stopping the Clobazam was actually doing him a lot of good. His sleep is pretty active again but he has in general been better during the day. Before when he went through periods like this I would start thinking maybe he's growing out of it but sadly every time it would only last a few days, just like it did this time.
One things for sure our youngest makes our lives very interesting.
Sorry for the long post. Just had to "unload" on someone who actually understands what this is like as sadly unless you have or are "living" through this it's hard for others to totally comprehend exactly what its like. My friends and work are great but........
Donna
 
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Hi Donna ,

:hugs: 2 u please Donna dont apologize i totally understand where you are coming from it has been a god send for me to post to you guys on here as well and i want to thankyou for posting to me and sharing your insight ,I feel what you are going through and my heart goes out to you with your little man being a toddler as at least with Ethan being 10 he can explain certain things to as to what he is feeling prior and when these seizures come on . I went to the hospital today and they want Ethan to start a new medication called Keppra , Have your heard of it at all ? They say it will make him completly seizure free , but then again they said that about tegretol so here we go round and round again with more uncertainties of what is to come . I have to ween him off tegretol now for the next couple of days by giving him 200ml instead of the 400 and slowly introduce the kepra by giving him half a tablet twice daily for a week. He had a eye test on thursay and his vison is normal as they wanted to rule that out as he was suffering alot with blurry vision. It is great that your little one can be in childcare where you work that must give you some peace of mind knowing he is so close and you can go and check on him . How is he doing now ?
 

donnajane

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Hi, Hope Ethan is coping with the transition so far. It always makes me nervous the thought of stopping or changing meds. Yes I have heard of Kepra a lot, a lot on this site. I will be interested to hear how Ethan goes on it. Its not fair our kids have to go through this to find the right mid but sadly its the only way. Glad his eye's are OK. Our little man has problems with his hearing where he can be pretty much deaf at times, but normally his hearing is fine. He has been tested by audiology in one of these periods and they were so worried as the result showed he had significant hearing loss that they retested him 2 days later which he passes really well. We have been told it is most likely linked into his numerological issues and his hearing issue lasts way longer than any event. Maybe that's whats happening with Ethan's eye's?
Today he's doing OK some periods of very NQR but a others OK. He wants to be with me at all times (in contact ie his hand on mine or his cheek on mine) which has been OK as I have been unwell today and so he snuggled up on the couch with me for a lot of the morning and even got me a blanket, quite cute. But then he has had times where he is all over the place, not really convinced they are seizures but we have been told it is more likely a neurological change than an actual seizure. Do you go to the Children's Hospital for Ethan's appointments? We have some at children's but his paed is at the Royal Womens Hopsital and his Nureo out at Monash.
Let us know how Ethan goes on Kepra, I wish him a smooth transition for the both of you.
 
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Hi Donna ,

I take it you are from Melbourne or Victoria as well ? Ethan goes to the childrens hospital the pead there has put him on Keppra , i am so nervouse Donna he has school tommorrrow and now the tegretol doses are 200 once a day instead of 800 and he comes off them tomorrow , the pead told me he will be very drowsy on kepra i am worried that he wont be able to function at school and he has missed so much already but dont get me wrong i know that this health is more important than school i am just worried about all the uncertainites, i feel on edge , i know i should take it each day as it comes and i cannot wrap him up in cotton wool and he has been clinging to me as well following me around everywhere and yesterday he was crying over my best friend that took her own life again saying that he cannot ever play with his xbox again as it reminds him of her . and that was out of the ordinary . I am always on edge now watching and waiting .I have told the neuro about Ethans eyes he said it could be linked to the siezures , he said we will know more once we do the brain scan in August . I am sorry to hear that you have been unwell , i hope you are feeling better soon . enjoy Mummy and toddler cuddle time is sounds wonderful my yougest is six and i miss those snuggle cuddles . I still get cuddles just not as long now lol

Cheers Maggie :)
 

donnajane

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Hi Maggie,
I hope Ethan's day at school goes smoothly. I don't blame you for feeling on edge. My little man is at child care at my work and I still feel on edge some days. I hear the phone ring in our department and I jump, thinking it might be the child care saying he is struggling again or I see the school nurse come into our building and I always thinks she's coming to see me. As you have probably read I can relate to the following you around part, my little one does that when he is in a NQR place and I am sure it's because he is NQR and feels safer/comforted with me. It can be such a juggling act when he is like this and spending time with our older two kids.
Is Ethan having an MRI or at CT in August? We are waiting on a date for the next MRI but it probably won't be until Jan next year. They did his 2nd one 6 months after the first then they said his 3rd would be 12months after that so that means Jan. They are just keeping an eye on the lesion on his putamen and seeing if it changes and if it does how it changes. Remember even if they do find something on the brain scan it doesn't always mean something really bad. For our little man it just added another lot of questions and something else to keep an eye on.
Yes I live in Melbourne as well. We were looking at moving to the country, I grew up on a farm, but with the medical appointments etc until they can work out more what is happening or until he can outgrow whatever it is which is going on we will be staying in Melbourne where the best specialists are.
Please let us know how Ethan goes at school this week and know I will be thinking Ethan and you.
Take Care.
Donna
 
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Hi Donna,

Ethan didnt make it to school today he had bad diahrea last night and i read that this is a side effect of Keppra , but i cant be sure if that has caused it so i kept him home just incase but he seems well now only one little seizure during the night he is now totally off tegretol his lasr dose was this morning . so now it will be nerve racking yet interesting to see how he gooes soley on keppra . I understand about your not moving to the country , with all the appointements it would be so hard.Donna on the referal form for the brainscan it has a C+ is does that mean CT ? How was your little man today ?
 

donnajane

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Don't blame you for keeping him home. Hope he feels better tomorrow. I assume the + is a T and it actually means CT. Our little man has only had MRI's so far and they said his next one will hopefully be the last one he will need a General Anesthetic for after that he should be old enough to lie still. We have been told if nothing changes on the next one, when he's 3, he will need another one 2yrs later when he is 5 and then another one around 9 and only then will they say he won't need them again unless his condition alters.
He had an OK day today. Refused to sleep at child care then became NQR in the afternoon so when I went to pick him up they said he had to spend the afternoon having one on one play with staff as he was not able to play with the other children due to his behaviour towards them? But all things considering an OK day for him.

Fingers crossed for tomorrow.
Donna
 
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Ethan had to be rushed back to hospital on Friday morning due to a tonic clonic seizure, he is having 5 partial seizures a day since tuesday , it seems like it is taking ages for the keppra to kick in .He is also on 2 drops twice a day of the clonazepan . I really diidnt want him back on clonazepan as it made him very drowsy but then i figure what is worse drowsy or seizures i think i would rather Drowsy thank god the clonanzepan is only temporary!
 
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