Saturday, March 9, 2013

So Incredibly Disappointing

Even since "Christian" was diagnosed with an inhibitor back in December of 2006, we have waited for the Bethesda units to drop low enough to start Immune Tolerance Therapy to eradicate the inhibitor. On March 8, 2013, we were going to finally start!


Our entire family was thrilled beyond belief that this day had come. Christian and I changed our travel (as we are in Denver for his HTC appointment) and were admitted to the Children's Hospital in Denver. Friday was the day. We knew that the possibility of a reaction was a concern so the doctor had Christian admitted mainly for observation.


The infusion of Advate caused a reaction. Christian began itching uncontrollably and broke out into hives on his upper body. So Advate was out of the question. Saturday would bring an infusion of Alphanate. This was going to work, I just knew it! I'd heard nothing but positive, did some homework and was ready for this to be the answer.


His reaction to the Alphanate was worse than the Advate. He broke out head to toe. It was a really severe reaction. He is feeling much better and we are being sent home Sunday (unfortunately we could only get a really late flight due to the weather in Denver) and will regroup with the HTC next week.


Nothing has been "easy" with Christian and his hemophilia. I guess I shouldn't be surprised that the road to getting rid of his inhibitor is going to be any different.


It's just more emotional and upsetting than I had ever imagined it would be. It's something I can't fix and want nothing more in the world than for my son to simply need Factor 8 to treat a bleed. The day will's just going to be a while longer.

Sunday, March 3, 2013

Another adventure

"Christian" returns to school tomorrow after yet another knee bleed.  He fell at school right after returning from a previous knee bleed and it started again.  He just never quite healed so we were cautious in sending him to school too early.  While we were in the hospital last week, I called the HTC in Denver and told them that we could just not wait until April for his next appointment.  Denver is our "second opinion treat our inhibitor" treatment center.

How many more bleeds would he have to endure if we waited?  This has been a very difficult time as it seems he is bleeding once a week to a week and a half.  We are treating each bleed aggressively with NovoSeven, but we need a plan.  An aggressive plan.  His inhibitor is down to 17 (hopefully its not crept up any higher) so maybe at this point Immune Tolerance is an option...I will consider just about anything because doing nothing is not working.

On Thursday we have an MRI followed by his appointment at the HTC and finally an appointment to be fit for a new brace….he has just grown out of his other one.

Flights are made, hotel and car are reserved and we will be off on another adventure.  An adventure that will hopefully help to make my son's life better. 

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