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Posts Tagged ‘percarditis’

My Big Fat Life – Gabriel Update

In Uncategorized on January 14, 2015 at 4:33 am

I didn’t want to talk about this until I had the appointment, but I finally got Gabriel in to see a pulmonologist.

Since we are now one episode away from the doctors wanting to remove the pericardium sac of his heart, I wanted to make sure that they looked at all things before moving forward.

A friend posted something on Facebook, and the in the comments one of the women mentioned something about pleurisy. It reminded me that one time, early on, one of the doctors said his symptoms were like those of pleurisy. I didn’t think much of it, because I didn’t know much about it, plus it was early on in and I didn’t know a lot about a lot.

The woman provided a link, and I clicked. You know all those symptoms the doctors have told me that aren’t textbook, and baffle them? Well they are textbook, but for pleurisy. This motivated me enough to get a referral to the pulmonologist and get their opinion on things. Since I haven’t been able to shake the feeling they are missing something, this sort  of confirmed my concerns there might be other things going on. At least some very suspect symptoms that are worth looking into.

He agrees that while Gabriel does have the symptoms for PPS (posterpericardiotonomy syndrome), he also seems to have some symptoms of pleurisy. He feels that Gabriel definitely needs a cat scan of his lungs when he gets sick again, to look at things more closely before they even consider moving forward with the pericardium removal.

Hopefully Gabriel won’t have another flare, and perhaps this is all just precaution. At the same time, I have been preparing myself for the fact that he may very well have to have it done, though I pray he won’t. At least we are one step closer to hopefully finding some answers to the symptoms that are baffling his doctors, and stressing his body out.

 

 

 

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My Big Fat Life – Gabriel & Day One

In Uncategorized on April 17, 2014 at 11:13 am

Gabriel took his first colchicine pill this morning. It’s a little purple pill. It’s weird to think how much hinges on that little thing producing huge results. It reminds me of something Gabriel shouted out once, while trying to wrestle with his older (and much bigger) brother, Ben. Keep in mind this was before I knew he had a heart defect. I probably would have offered him a coloring book on the history of non aggressive play, with some soft and non threatening crayolas, had I known before they tried to do all of that play wrestling that brothers do. But I remember it so clearly when Gabriel was standing up and trying to get Ben into a mock head lock. Both boys were laughing so hard, and through the laughter Gabriel shouted out ” I may be small, but I am much bigger than my size!”. Those words were so big to say, as Gabriel has always been much smaller than his older brother despite how close in age they are.  I am hoping that is the case with this  little purple pill as well. I am hoping it is much bigger than its size, because it has a heck of job ahead. I am pretty sure Ben let Gabriel win that day, and I hope that little pill helps Gabriel win again.

When the Rheumatologist first told me about the colchicine, he told me that he had used it in only two other children with pericarditis, and without good results. He went on the state that he had just recently read an article in the New England Journal of Medicine, that says colchicine had showed promising results from preventing/reducing recurrence when used with Prednisone. What they are doing, is keeping Gabriel on the prednisone, and starting colchicine at the same time. He will taper off the prednisone over the course of weeks, until he is on colchicine only. Then we wait. Typically Gabriel starts to get sick within 2 1/2 weeks after stopping prednisone. If he can maintain on the colchicine, then that little pill is doing great big things. If not, then.. well, surgery.

When the Rheumatologist told me about the drug, he gave me a choice between that or methotrexate. The pros of colchicine are that it works much quicker, and Gabriel really needs to start getting better sooner than later. I was concerned that he hadn’t seen promising results though, and I needed more answers. Someone forwarded the report to me, and I was able to find some more after I Googled the study. I had questions about the study, so I emailed one of the investigating physicians in Italy, and asked a heap of questions. I was really worried he might not email me back, but within the day, he answered.

We exchanged emails back and forth for a few days, and he was able to answer my concerns. I started asking as many questions to cover all the basis I could. I wanted to know how many were teenagers, how many had underlying health issues, and so on. Things I felt I needed to know to help me make the most educated choice for Gabriel and might give him the best chance at feeling better, and avoiding surgery. The investigating physician stated that colchicine is worthy of adding to his prednisone treatment, so this seemed to be looking like this might be the medication worthy of a try. Even though the Rheumatologist hadn’t had promising results in the past, we all know Gabriel doesn’t seem to respond typically to a lot of things, so maybe he is the one patient that will turn this around. That is my hope, anyways.

So here is to little, but big things, today.

 

(Gabriel and I, 4-2014. I have no clue why he is squinting. When I asked him why he was, he couldn’t remember either)

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