Back at ED injured fingers caused small siezures but not "pain"?

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donnajane

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Yet another trip to the children's hospital ED yesterdaday. My little man had his ring finger and little finger in the hinge section of a door while it was being slammed shut by my 5yr old. One time I am glad he can't feel pain like we do. He has cut/split the webbing between the fingers (quite a bit of blood) and also two very fat fingers. ED said they think his little finger is OK but not as sure about his ring finger and said to come back in a few days for an Xray if it hasn't improved. Two Dr's checked his fingers and both agreed his ring finger didn't feel right but they were able to push on it and he didn't jump but with his sensory issues it's not a true indication. DH went into a panic when he saw his fingers as it was not a nice sight and we knew that although he wasn't crying things where not quite right as he had clusters of mini seziures. You know you have been to the ED a lot when the triage nurse says I know you don't I before even looking at our little man. She spent a lot of time with him when he was first in the ED at 7 1/2 months and he loves her, he even offered her one of his Wholemeal salada's which are his favourite food.
Does anyone know of any conditions which can cause the sensory issues which seem to be becomming more evident as our little man gets older. He still has his other strange quirks different types of what look like event's, absence event's, some uncontrolled movements, strange low temps, periods of "almost" regression where he is unable to or won't walk last time it was for over 24hrs stretched over 2 days. We noticed from when he was young he would often get stuck under furniture and continually hit his head then look confused but then repeat the same thing over and over until we got him out, holding torches onto his eye, hurting his feet on hot concrete as it took him a awhile to "register" concrete was hot then still not moving off it so burning his feet, last year he ran his finger along a brick wall playing cars and scraped the whole top of his knuckle I found the injury when I was changing his nappy and noticed blood on his hand as he couldn't feel it kept reinjuring it and ended up with it badly infected, this time around he only cired when daddy got angry at his older brother barely cried so we had to search over him till we saw the blood and the extent of this injury. It does not appear to be all the time. Its just like his other issues sometimes he seems to be the most normal toddler then other times its as though he has regressed. I have been searching online and nothing seems to fit his issues.
I am worried that one day he is going to hurt himself even more badly than he did yesterday and we won't know. Today his fingers look horrible, bruised, swollen and look very sore yet if you ask him where the boo boo is he holds up his other hand. We are taking him to the GP tomorrow for an Xray just to make sure as his ring finger look's a bit "strange". Not sure if it hurt him today only thing we noticed was he went very "strange" in behaviour, agitated and a few small event's so gave him pain relief just in case and it seemed to help him. He also woke up after his afternoon nap dripping in sweat again just as he did yesterday before he hurt his finger. He was so wet we had to change his sheets and put his pillow out in the sun to dry.
Just wish I could get some answers but I know the dr's don't have answers for everything.

Donna
 
I'm so sorry -- it's never pleasant to take a trip to the ED. :(

Definitely let the docs know about his reduced sensitivity or reactivity to pain -- it may help them with the diagnosis process. The symptoms are similar to those of Riley-Day syndrome (which can feature an inability to feel pain, as well as seizures, and excessive sweating of the head and torso). There's more info here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002363/
 
Thankyou for the info will definetly look into it. He had a follow up with the GP, normal GP away so just another at the clinic, who said no need to Xray as he is moving his fingers!! So frustrating as made me feel like an over reactive mum again. Child care rang me today to see he hit his knee really hard on a ladder and the noise made quite a few staff stop and see what happened but he kept playing. When his carer's checked him a few minutes after they found quite big red mark and a bruise starting to appear and he only got upset when they said did you hurt your knee. When they first asked him he showed them the other leg!!!
Sorry to vent but I get so annoyed at Dr's some time. I forgot to take a photo of his injury and with his condition things can "go down" so much quicker than what you would expect. On Sunday he had a really fat black finger and the one next to it was also bruised, today virtually no bruise. When I have had photo's Dr's believe me when we don't I am sure they look at you and think I am making it up.
Sorry so frustrated for my little guy.
Donna
 
Just looked up the syndrome yes a lot sounds like my little man but a lot also doesn't. Last time he saw his paed she said would make a bet that he has a new yet to be diagnosed metabolic disorder as she has another patient with pretty much the same issues but hers is so much worse than our little man's. She's 5 and can barely sit up. But she says it is almost unbelievable how much they have in common. The little girl has been diagnosed as having CP by metabolic disorder. She siad the chance of having 2 patients with the same issues and same types of strange seizures is 1 in several million but she had 2.
We will keep looking until he either outgrows his condition or until the pieces of his jigsaw start to fit together and his specialists start to get a glimpse of what might be going on.
It is a blessing that he looks so normal and acts like a normal toddler a lot of the time but then it also acts against in with Dr's who think things are "fine" if they are not up to date on his condition.
Donna
 
yes, your guy may be one in a million -- he's a rare gem (of course!), but could also have a unique syndrome all his own. I do think the pain insensitivity is an important factor, so I hope the docs take it seriously. I'm sure your instincts are spot-on.
 
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