My little man turned 2 today and he has had quite a week leading up to his birthday. On Monday night he had his sleep study which has come back as we expected, saying it appears normal but..... Then on Wednesday after lunch he lost his ability to balance/walk and started crawling again. We have seen this before but usually it only last 30min to an hour but is usually after a nap, this time he wasn't able to walk without reverting to crawling after a few steps until mid morning the following day. we put him to bed at his usual nap time but had to wake him as he slept for over 3 1/2 hours, usually he sleeps for around an hour. We decided to wake him as we were worried something else was going on. My husband who never says much about his condition actually was worried. We talked of taking him to the ED or GP but he was booked in for an MRI on Friday so waited. Unfortunately we didn't video the start of his trouble balancing/walking so only have a little footage from that evening and the next morning but he had improved a little by then. I spoke to several nurses/specialists in hospital when he had his MRI and they said you should bring him in to be checked out when he does things like this as they are different to whats normal for him but I explained that if i brought him in everytime he did something different I would live in the ED. We have now decided though that if he does have trouble with his legs again and balance and it lasts more than hour we will take him in to the ED but make sure we have recorded what was happening first so we have something to show them as they explained to us that if they were able to test him while this was happening they may be able to see why it was happening and it may be a small window of opportunity.
Anyway of course he was almost your normal toddler by the time he went to the hospital for his MRI. People commented on how friendly he was and how unusual it was for a child his age. He did get a bit over stressed with all the waiting and had would look like a brief seziure while I was holding him. They decided not to give him a premed this time as last MRI they had to give him 2 and neither worked he became way more active. I was also asked if I would be OK to put the mask over his face to help him go to sleep and he was so much calmer with me doing this.
Afterwards although they would not say if his lesion had altered they said they had had to use dye again which I was told before his MRI they didn't think they would need again. He woke suddenly after his MRI and the nurse was unable to hold him as he was screaming and arching back so violently they were shocked. The nurse asked why I was so calm I explained I have seen this before without an anathestic. He was so loud and moving around so voilently they moved us into another area away from the other patients in recovery. Thankfully he calmed down around 15minutes later and had a sleep and then woke around an hour later in a lot better mood.
Now the waiting game starts. His nureologist is away on holidays so we don't have an appointment to get the results until the 25th Feb. I know people say no news is good news we use to think that as well. With his last MRI 6 months ago we heard nothing for 3 weeks, then a brief email saying a little swelling in his brain, then at his appointment 5 weeks after the MRI nureo explained re the lesion but said there was no need worrying us as there is nothing which needed to be done at that stage other than wait and have another MRI in 6 months (the one he has just had).
He has had trouble with a few sensory issues lately as well as his usual event's and then the issue with walking that it does make me wonder what they will find. We joke that knowing our little man they will say nothing has altered yet we have seen things have so yet again it will be a case of more questions as to what's causing these changes.
Sorry for the long post it helps me to write this down where i know people actually understand. My friends try to be supportive but most struggle to deal with what is going on and I now often avoid talking about it to them as I can see it makes them uncomfortable.
Thank you to everyone for your support. It was my little man's 2nd birthday today and my only wish for him is that he can be happy regardless of what is going on. He has taught me so much over the last 2yrs. I am now more patient, more understanding and have found strength within myself I never new I had.
Donna
Anyway of course he was almost your normal toddler by the time he went to the hospital for his MRI. People commented on how friendly he was and how unusual it was for a child his age. He did get a bit over stressed with all the waiting and had would look like a brief seziure while I was holding him. They decided not to give him a premed this time as last MRI they had to give him 2 and neither worked he became way more active. I was also asked if I would be OK to put the mask over his face to help him go to sleep and he was so much calmer with me doing this.
Afterwards although they would not say if his lesion had altered they said they had had to use dye again which I was told before his MRI they didn't think they would need again. He woke suddenly after his MRI and the nurse was unable to hold him as he was screaming and arching back so violently they were shocked. The nurse asked why I was so calm I explained I have seen this before without an anathestic. He was so loud and moving around so voilently they moved us into another area away from the other patients in recovery. Thankfully he calmed down around 15minutes later and had a sleep and then woke around an hour later in a lot better mood.
Now the waiting game starts. His nureologist is away on holidays so we don't have an appointment to get the results until the 25th Feb. I know people say no news is good news we use to think that as well. With his last MRI 6 months ago we heard nothing for 3 weeks, then a brief email saying a little swelling in his brain, then at his appointment 5 weeks after the MRI nureo explained re the lesion but said there was no need worrying us as there is nothing which needed to be done at that stage other than wait and have another MRI in 6 months (the one he has just had).
He has had trouble with a few sensory issues lately as well as his usual event's and then the issue with walking that it does make me wonder what they will find. We joke that knowing our little man they will say nothing has altered yet we have seen things have so yet again it will be a case of more questions as to what's causing these changes.
Sorry for the long post it helps me to write this down where i know people actually understand. My friends try to be supportive but most struggle to deal with what is going on and I now often avoid talking about it to them as I can see it makes them uncomfortable.
Thank you to everyone for your support. It was my little man's 2nd birthday today and my only wish for him is that he can be happy regardless of what is going on. He has taught me so much over the last 2yrs. I am now more patient, more understanding and have found strength within myself I never new I had.
Donna
