tag:blogger.com,1999:blog-1489173439865061632.post3760331474296630842..comments2024-03-21T07:04:24.033-04:00Comments on THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: SEIZURES THEN AND NOW - THE PENNY DROPPED!Anonymoushttp://www.blogger.com/profile/11368028391616959419noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-1489173439865061632.post-395134951932334992012-04-06T17:35:26.699-04:002012-04-06T17:35:26.699-04:00He does! We are lucky you and I. As hard as we a...He does! We are lucky you and I. As hard as we are on ourselves sometimes, always wishing we knew more, could do more, I think our guys do understand that we are trying and that we love them. And he is my hero! He has been through so much, been treated so badly by a number of people over the years and yet he remains the eternal optimist. <br /><br />He always seems to be smiling these days!<br /><br />His seizures are controlled by the medication (thankfully!) and I am really hoping that Nick's will be too. <br /><br />LaurieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1489173439865061632.post-88184127981668897922012-04-06T17:07:59.801-04:002012-04-06T17:07:59.801-04:00HI Laurie, Thank you for your comments and for sha...HI Laurie, Thank you for your comments and for sharing your own family experience. Your poor Ben and poor you, struggling to do the right thing for your precious boy! It reminds me of when I was told to use a behaviour modification programme for feeding Nick when he would not eat as an infant. Turned out to be really serious gastro problems. Boy, when I remember those things....it's a wonder that my Nick loves his Mum! And he does. And I bet Ben loves you best too. xoThe Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-1489173439865061632.post-50752421432797223962012-04-06T15:12:25.618-04:002012-04-06T15:12:25.618-04:00Oh Donna, the 'what ifs' can drive you cra...Oh Donna, the 'what ifs' can drive you crazy if you let them!! 'What if" is the story of my life!! I have 2 sons who are non-verbal so know how much time/effort goes into trying to figure things out. Watching every little sign, keeping track, watching for a pattern to emerge, researching, on and on. Being too busy and sleep deprived can make us miss some but I have never known anyone with better developed observational skills than moms of a child who is non-verbal. Often though what we do figure out is ignored by professionals. Doctors and teachers are the worst!<br /><br />Don't get me wrong, we have had some very helpful doctors over the years but there are likely more that have been anything but.<br /><br />When Ben did not develop speech by 18 months the SLP referred him to an ENT. The first one we saw (who was subbing) determined he had fluid build up due to an undiagnosed/untreated ear infection. How did I miss that?? What kind of mom was I that my baby had an ear infection and I didn't know?? Only after years went by and much experience did we learn that Ben was completely capable of having an infection without a fever to give it away. And he was always so happy and content and a non-complainer. I know that now but oh the guilt of missing those infections!! He was to get tubes in and the regular ENT was back by then and he sat me down and told me that I was neurotic and putting too much pressure on Ben, he would talk when he was ready. There are days I still want to track him down and say, he's 24 yo old now, should I be concerned yet?<br /><br />Eventually he was dxd as being hearing impaired and was to wear hearing aids. That was awful!! The audiologist had never seen a child react to them that way. But I was to continue to force him to wear them, he would adjust in time. The torture I put him through before saying no more. I knew it was not right and just couldn't do it to him any more. Turns out he had tactile sensitivity that is particularly bad around his head as well as hypersensitive hearing (not hearing loss!) so you can well imagine the pain I was inflicting (something that wasn't determined until much later). I was also seeing things that would indicate that the hearing tests were wrong, he was indeed hearing quite well some of the times. That bit of wisdom was shrugged off, that isn't what they could determine, I was imagining things. It eventually became clear to me, after much research on my part, that he had autism. I knew when he was 3, they finally accessed him at 4 and said no and why are you crazy enough to 'want' him to be autistic instead of hearing impaired?? They said no to autism but did dx a whole bunch of the individual symptoms including the tactile sensitivity. He was 7yo before I was finally able to get a correct dx.<br />So much for early intervention!<br /><br />Then I was pretty sure he was having seizures (common to kids with autism and also ran in my family, my brother had them as a child so recognized what was going on). Nope, not seizures, just autism. Amazing just how many health concerns would not be investigated over the years - just autism.<br /><br />It wasn't until a few years ago when he had 2 grand mal seizures (can't deny those ones!) in one day and was hospitalized that they finally dxd epilepsy and put him on medication.<br /><br />The 'what ifs' are so many. So many times things could have been figured out sooner. So many times things could have been done differently. And that is just Ben (and only a few of the examples). Don't get me started on Kevin too!<br /><br />We live, we learn, we do the best we can. In the end we also have to learn to let go of the 'what ifs' or risk loosing our sanity!<br /><br />LaurieAnonymousnoreply@blogger.com