longtomsilver Posted October 13, 2011 Share Posted October 13, 2011 Latest MRI results have come back for my two year old daughter who suffers from non-convulsant seizures and paroxysmal tonic upgaze. The seizures are infrequent but when they do happen are quite scary. PTU is common but we have become used to it as the medical profession has said it's benign. Anyway, a letter comes through my door today from the hospital re. MRI results and in summary says that they've found a cyst on her brain (doesn't say how big or where) and it's benign - end of! I'm not happy with this as we've had two blue light trips to hospital this year already and a quick google of 'arachnoid cyst' (I'm assuming this is the one) + 'seizures' brings up a list of real cases. O feel this is the closest we have come to getting an answer (to date they have not diagnosed her and classified her condition as 'weird and wonderful', wonderful it ain't - she's on keppra although I've taken her off it as i couldn't see any real improvement (ptu maybe a little bit) but it made her lethargic and moody. What do I say to her neurologist tomorrow, am I right to feel angry? Thanks Link to comment Share on other sites More sharing options...
Gigantic Purple Slug Posted October 13, 2011 Share Posted October 13, 2011 Latest MRI results have come back for my two year old daughter who suffers from non-convulsant seizures and paroxysmal tonic upgaze. The seizures are infrequent but when they do happen are quite scary. PTU is common but we have become used to it as the medical profession has said it's benign. Anyway, a letter comes through my door today from the hospital re. MRI results and in summary says that they've found a cyst on her brain (doesn't say how big or where) and it's benign - end of! I'm not happy with this as we've had two blue light trips to hospital this year already and a quick google of 'arachnoid cyst' (I'm assuming this is the one) + 'seizures' brings up a list of real cases. O feel this is the closest we have come to getting an answer (to date they have not diagnosed her and classified her condition as 'weird and wonderful', wonderful it ain't - she's on keppra although I've taken her off it as i couldn't see any real improvement (ptu maybe a little bit) but it made her lethargic and moody. What do I say to her neurologist tomorrow, am I right to feel angry? Thanks I am no expert in medical matters but my two penneth : i) Is this the first MRI scan or a later one ? How come this shows up on the later one if so and they didn't see it before ? How do they know it's beneign ? MRI scans give "contrast" T1/T2 etc. Sometimes they can tell something about tissue from the contrast of the scan, but I don't know if the diagnosis is that precise. ii) I think it is unwise to stop treatment like that if you expect the medics to work with you. If you diasgree with a course of treatment you should discuss it with them first and explain why. Work with them to solve the problem as a team, not against them. They may have motivations beyond the ones that they have immediately explained to you when prescribing a course of treatment. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 I am no expert in medical matters but my two penneth : i) Is this the first MRI scan or a later one ? How come this shows up on the later one if so and they didn't see it before ? How do they know it's beneign ? MRI scans give "contrast" T1/T2 etc. Sometimes they can tell something about tissue from the contrast of the scan, but I don't know if the diagnosis is that precise. ii) I think it is unwise to stop treatment like that if you expect the medics to work with you. If you diasgree with a course of treatment you should discuss it with them first and explain why. Work with them to solve the problem as a team, not against them. They may have motivations beyond the ones that they have immediately explained to you when prescribing a course of treatment. It's a second MRI and that was my thought too, how do they know it's benign?? I stopped it through frustration, we've hit so many brick walls - Keppra turned her from a bright, cheery and intelligent child who was happy to walk EVERYWHERE with me to a little horror of a madam who wanted to be pushed in her pram. Lesser of two evils in my opinion but you are right. Link to comment Share on other sites More sharing options...
ccc Posted October 13, 2011 Share Posted October 13, 2011 I have no clue about this but good luck. Link to comment Share on other sites More sharing options...
Bossybabe Posted October 13, 2011 Share Posted October 13, 2011 Seems to me, and I have loads of experience of docs, that you do need to work with her neurologist and tell her/ him your fears. Ask if the Keppra has an alternative he could prescribe if she still needs to be on it. Make a list of your questions/observations to use if the consultation becomes too emotional to think. Best of luck tomorrow. X Link to comment Share on other sites More sharing options...
Gigantic Purple Slug Posted October 13, 2011 Share Posted October 13, 2011 It's a second MRI and that was my thought too, how do they know it's benign?? I stopped it through frustration, we've hit so many brick walls - Keppra turned her from a bright, cheery and intelligent child who was happy to walk EVERYWHERE with me to a little horror of a madam who wanted to be pushed in her pram. Lesser of two evils in my opinion but you are right. MRI scans can have a wealth of different contrast. So some things that show up really well on some scans can be virtually invisible on others, so it is possible that they did a general scan the first time round and then tried something different the second which helped it show up, so there is no guarantee it "appeared" in the interval. They should have some explanation for this though, and I'd expect to get one. The other issue is that they may want to see how it changes with time, so maybe they will schedule for another scan. Biopsies (which I think are the only real way of telling whether tissue is beneign or not) can be quite invasive, and it could be that they don't want to do it unless absolutely necessary. There is also the possibility that the cyst is in a place where the biopsy is difficult to get to. Of course none of us is perfect, and we are all as imperfect on the inside as on the outside. We gave someone an MRI scan once, only to find that he only had one kidney ! Now granted it was a super kidney twice as big as a normal one, but if he'd never had that scan he would have never known and would probably be going around today oblivious of the fact. Being a doctor is a bit like being a detective, so sometimes all the little bits of information add up to give them a complete picture of what's going on. It maybe that children with certain disorders present certain symptoms when given certain drugs. That's why its always important to convey as much information to them as possible. They may want to go through a range of treatments changing them to the one that suits you best, as there may be several different ones available. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 I have no clue about this but good luck. Thanks. Link to comment Share on other sites More sharing options...
TruraBuoy Posted October 13, 2011 Share Posted October 13, 2011 Best of luck. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 Seems to me, and I have loads of experience of docs, that you do need to work with her neurologist and tell her/ him your fears. Ask if the Keppra has an alternative he could prescribe if she still needs to be on it. Make a list of your questions/observations to use if the consultation becomes too emotional to think. Best of luck tomorrow. X Again thank you. This is going to be a call back, her doc is usually very good a returning calls. My daughters last consultation was a month ago and I cancelled it as buried in the detail they said they were going to test the therapeutic levels of the medication In her blood - I didn't know they could do that you see and I was hoping the problem would just go away. I'll own up Link to comment Share on other sites More sharing options...
Gigantic Purple Slug Posted October 13, 2011 Share Posted October 13, 2011 Yep - sorry forgot to add best of luck to my post too ! Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 MRI scans can have a wealth of different contrast. So some things that show up really well on some scans can be virtually invisible on others, so it is possible that they did a general scan the first time round and then tried something different the second which helped it show up, so there is no guarantee it "appeared" in the interval. They should have some explanation for this though, and I'd expect to get one. The other issue is that they may want to see how it changes with time, so maybe they will schedule for another scan. Biopsies (which I think are the only real way of telling whether tissue is beneign or not) can be quite invasive, and it could be that they don't want to do it unless absolutely necessary. There is also the possibility that the cyst is in a place where the biopsy is difficult to get to. Of course none of us is perfect, and we are all as imperfect on the inside as on the outside. We gave someone an MRI scan once, only to find that he only had one kidney ! Now granted it was a super kidney twice as big as a normal one, but if he'd never had that scan he would have never known and would probably be going around today oblivious of the fact. Being a doctor is a bit like being a detective, so sometimes all the little bits of information add up to give them a complete picture of what's going on. It maybe that children with certain disorders present certain symptoms when given certain drugs. That's why its always important to convey as much information to them as possible. They may want to go through a range of treatments changing them to the one that suits you best, as there may be several different ones available. Lot's of valuable insight there thanks. First scan was more general and the latter one more specific, above my station so I couldn't say what mind. Link to comment Share on other sites More sharing options...
The Masked Tulip Posted October 13, 2011 Share Posted October 13, 2011 I have no knowledge or experience in this but I wish you all the best. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 Yep - sorry forgot to add best of luck to my post too ! I'm feeling more positive now because of this. Re. Dr's having other ideas to what it may be. I found out that the original paediatric dr (before referal) was convinced it was a rare type of non-curable brain cancer. Never mentioned this to us 'parents' and thank [insert expletive]... (I won't say it). Condition has improved massively to what it was over a year ago and that is a relief although I did give up my job to look after her Link to comment Share on other sites More sharing options...
snowflux Posted October 13, 2011 Share Posted October 13, 2011 Just wanted to my good luck wishes - it must be one hell of a worry for you. A big well done, too, for getting your priorities straight and quitting work to care for her. I know from personal experience just how rewarding but also, sometimes, how brain-numbingly boring looking after a little child can be. I don't know if you have experience of raising other children, but I'd just mention in passing that even perfectly healthy children can change their behaviour very abruptly for no apparent reason, so you may want to be a little careful about assigning it to the effects of medication. They just develop so fast. When my lad was about your daughter's age, he also suddenly refused to walk any more after previously walking for miles - in his case, though, it seemed like he'd simply got bored with the novelty of walking. Hope it turns out well for her! Link to comment Share on other sites More sharing options...
longtomsilver Posted October 13, 2011 Author Share Posted October 13, 2011 Just wanted to my good luck wishes - it must be one hell of a worry for you. A big well done, too, for getting your priorities straight and quitting work to care for her. I know from personal experience just how rewarding but also, sometimes, how brain-numbingly boring looking after a little child can be. I don't know if you have experience of raising other children, but I'd just mention in passing that even perfectly healthy children can change their behaviour very abruptly for no apparent reason, so you may want to be a little careful about assigning it to the effects of medication. They just develop so fast. When my lad was about your daughter's age, he also suddenly refused to walk any more after previously walking for miles - in his case, though, it seemed like he'd simply got bored with the novelty of walking. Hope it turns out well for her! +1 Cheers snowflux TBH the illness was more a trigger than anything, the intent was always there as the wife travels alot with work (In Geneva as I type, Paris next week and Brussels the week after - it's hard work (for me )) and paid for childcare around that kind of schedule is nigh on impossible. We have a new(ish) addition to the family and I agree entirely with what you're saying re. mind numbingness, conversation with a two year old and Madagascar DVD on repeat ALL day at her insistence. I'm losing my marbles. Link to comment Share on other sites More sharing options...
SarahBell Posted October 14, 2011 Share Posted October 14, 2011 If her behaviour worse than normal terrible twos? If you have an unusual possible unstable (as in not 100% routine cos your wife works away) and you have a new addition then it'd put it all down to that. BUT: Why take her back if you're already deciding whether she should take her medication? I'm concerned you reckon you're medically more qualified than her doctors. Does your wife know and agree with this? If you don't trust the doctors ask for a second opinion. Tell them of the side effects though and when you stopped it. If you whole body scan a person you will find something there that shouldn't be. In 99% of cases things are benign. I have polyps up my nose that I know about since their attempts to diagnose my numb face. They don't know if they're a cause of the numbness but they've scanned my head enough to know there's nothing to worry about in it. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 14, 2011 Author Share Posted October 14, 2011 If her behaviour worse than normal terrible twos? If you have an unusual possible unstable (as in not 100% routine cos your wife works away) and you have a new addition then it'd put it all down to that. BUT: Why take her back if you're already deciding whether she should take her medication? I'm concerned you reckon you're medically more qualified than her doctors. Does your wife know and agree with this? If you don't trust the doctors ask for a second opinion. Tell them of the side effects though and when you stopped it. If you whole body scan a person you will find something there that shouldn't be. In 99% of cases things are benign. I have polyps up my nose that I know about since their attempts to diagnose my numb face. They don't know if they're a cause of the numbness but they've scanned my head enough to know there's nothing to worry about in it. There's terrible twos and then there's kepprage (keppra-rage) yes she's two and naughty but it is a world apart from her being on meds that act like a dimmer switch, lowering brain activity (that's how they work) and affecting her learning/development which is frustrating enough for any child, especially a bright one - she got thoroughly tested as part of her assessment and was found to be way ahead of where she should be (some tests designed for 8year+ coordination, shapes and sizes etc) I don't wish to stifle that in anyway. I respect the medical opinion of her doctors and while we are still at the 'working diagnosis' stage i'm hoping that she will outgrow this condition and she doesn't get labelled as having epilepsy. Ultimately, I want her to be able to get her JAR Class II medical certificate so she can fly her daddy around - she loves seeing me flying (i'm not selfish enough to take her up) and gets so excited when i'm on the ground again shouting 'daddy flying in a plane, in sky' running around, with her arms outstretched. Seizures are of a duration unlikely to cause any brain damage (professional opinion) and they are now infrequent/improving so leaving the condition to run it's course seems acceptable to me. Wife's fine about this as she noticed changes in her too - as parents it was obvious. Link to comment Share on other sites More sharing options...
Ungeared Posted October 14, 2011 Share Posted October 14, 2011 Don't have much useful info to add, however my ex girlfriends 9 year old daughter has double cortex syndrome, which is a very rare condition that causes fits and can lead to retardation, so having experianced first hand the stress and worry for a little one I wish you all the luck in the world. Link to comment Share on other sites More sharing options...
Kurt Barlow Posted October 14, 2011 Share Posted October 14, 2011 I have lesions on the brain consistent with MS white matter lesions discovered last November following an MRI. To date havent had any repeat attacks but life will never be the same again. I guess the trick is to adapt to the new reality and get on with life I hope everything works out with your daughter. Link to comment Share on other sites More sharing options...
SHERWICK Posted October 14, 2011 Share Posted October 14, 2011 All the best tomposh. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 15, 2011 Author Share Posted October 15, 2011 I have lesions on the brain consistent with MS white matter lesions discovered last November following an MRI. To date havent had any repeat attacks but life will never be the same again. I guess the trick is to adapt to the new reality and get on with life I hope everything works out with your daughter. +1 Ditto and I hope everything works out for you as well. Link to comment Share on other sites More sharing options...
longtomsilver Posted October 15, 2011 Author Share Posted October 15, 2011 Thanks Ungeared, Sherwick et al Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.