Wednesday, November 27, 2013

A Case of Unofficially Diagnosed Weirdness

     Here’s an update for my family and friends that live far away and close by. Plus for all those wonderfully supportive people that live in cyber space.  

     First off, I cannot express in words how impressed I am, again, with the care we receive. Every time we are in need of care, help or answers, we get exactly that. I am aware of all the horror stories that are out there about negligence, lack of care, and how unaffordable it can be. My family has yet to have a negative experience. My kids are fortunate to have such a caring team behind team, rooting for them and trying to figure them out.

     After the scary allergic reaction my son had, we all felt strongly it could have been caused by the medication he recently started. In order to make sure, we would have to try it again. Since his reaction was delayed (5 days after his injection) it was important for him to be monitored closely in a controlled environment.

     And so we did, off to Calgary we went again. The plan was to check in, bring in an IV, in case a severe reaction occurred, and then my son was to administer his shot of humira. It took a couple of tries , but the IV was in at the third attempt. Hart was monitored and his oxygen levels checked. An epi pen was ready to be used and a big bag full with scary meds was ready, just in case it was needed.

IV is in!
     It was explained to me that once a severe allergic reaction has occurred, the next time the reaction may be faster or more intense. Good to know but not too reassuring! On top of that, my kids have a compromised immune system. Their system is already overactive and the course a reaction can take is not predictable and differs from what is the norm.  If you add the meds my son is on to the mix, it makes it nearly impossible to predict what course this will take or what even triggered it. (I'm somewhat convinced his reaction was delayed and was so slow in its' progression because his prednisone use had taken off the edge of the full blown reaction, but that's just my laymen opinion.) 

     Since my girl is responding so wonderful to Humira, the doc wanted to make sure whether or not it was the Humira that caused this, before we decided to stop using it.

     So…there we go, shot is in and the waiting begins. Every 4 hours vitals checked, checked for any sign of a reaction, fever, blood pressure, the works.

bells  and whistles  

     I am happy to say we did not see a reaction. I am also sad to say we did not see a reaction. I’m glad we can give Humira another try (the way it looks now: we have had 48 hours without a reaction, but the last time it was 5 days before something showed up, so we are not totally out of the woods yet). 
We received training for “how to use an epi pen” and were discharched.

     But now what?

     We will have to consult an allergist to see if we can find out more. The doc forewarned me that we may never find out. That doesn’t sit well with me because I would like to know so we can help prevent future reactions.
There is something beautiful to see everywhere, just look for it!
This is the view from our hospital room.

     For now, my son has to go everywhere with his epi pen. That will take some time to get used to, but no more risks like this for him. It seems to be an unofficially diagnosed case of Weirdness yet again.

To be continued

Saturday, November 16, 2013

Never a Dull Moment

     Does it ever stop…?

     Sometimes I wish for a boring week, just an uneventful week where nothing happens. Where you look for things to do because all the chores are done and everything is taken care of.

     Thursday my boy came up from his room and said he had a bump on his forehead. Indeed he did. I send him to take a shower and go to bed, we would keep an eye on it and see how it would go the next day.
The next day he woke up with red spots, hives all over his body , swollen ears and a swollen forehead. Okay, let’s go see the doctor. On our way to my vehicle I found my car doors locked with the keys inside. Spare keys were in the car as well and the other set in my husband’s.  So I phoned my husband and he came to the rescue. When I started my car, a light on my dashboard told me one of my tires was low…We drove to town very slowly. It had started snowing in the mean time as well.
Dropped of my girl at school and went to the ER with my son. He was seen fairly soon. Yes indeed; an allergic reaction. Somewhat relieved (because the rash turned out not to be measles what I was scared of at first) we were send off with some anti histamine. My son wanted to go back to school so I dropped off my car at the tire specialist and picked up my husband’s vehicle. Drove my son to school and off to work I went as well.

some of the hives that covered his entire body
     Coming home I didn’t really see an improvement, but hey, you got to give the medicine some time to kick in. My boy ate a bit, had a shower and went to bed at 7…that is not like him.

     When he woke up today his hands were swollen , his eyes were swollen, his lip was big, his hives were more red and they had spread as well….seemed to me the antihistamine was not working. So back to the doctor we went. Luckily it was Saturday…unfortunately it had snowed about a foot of snow over night. My husband plowed the yard first end then off to the ER it was again.

     Nurses were pretty “impressed” because the reaction was pretty severe. After discussing his medical history and questioning if he had any allergies (well duh…yes he does,  just not sure what!) he was given a room. A lady came to take some blood. She didn't want to use alcohol swabs to clean his arm because she thought the hives looked too painful. So she cleaned it with soap. Also no band aide because it would be painful to take off. Finally the doc came and saw it was not all that good. A shot with something strong (forgot the name!) and a humongous dose of prednisone was given. We were then send home with more prednisone and an epi pen.
crazy swelling in his hands. On the plus side: you can't see his swollen joints!

     Scary stuff….luckily we saw improvement of his hives within a couple of hours. The redness went and he felt a lot better too. Now we wait for the swelling to go down. Phew…another episode of weirdness and more grey hair survived.

     Now we have to find out what caused this reaction…I don’t really want to go through this again and I’m pretty sure my son was not a big fan either. My thought about what may have caused it…? Last week on Friday he had a flu shot and then on Saturday he had his Humira injection…a delayed allergic reaction perhaps? I don’t know but I would sure like to find out. I was told it is going to be tricky to find out what and how because of all the medication he is on. We shall wait patiently.

it's a good thing the snow can be so pretty...

Here’s to hoping we will have a boring week soon!