Small changes hoping for a big difference

Caeleb has had a zero inhibitor titer for 15 months, but his half-life is just over 4 hours.  It needs to be at least 6 hours to consider  him "tolerized."  He's doing great and we have to stay the course with big doses of Factor VIII.  As for his Xolair, the drug that changed our lives by allowing his body to tolerate Factor VIII, it's time to decrease his dose.  I'm actually not too nervous about the change, but a seemingly small change can turn into something big.

It's possible that the Xolair has done everything it needs to do for Caeleb's immune system and the only way to find out is to decrease the dose.  It would be fantastic if he did not have to have these injections any longer.  The drug mixes with 1.4 mls. of sterile water which is hardly anything, but the clear, reconstituted liquid is deceiving because it is so thick.  He gets an injection into each thigh and it used to be a horrible experience because it is so painful.  Now he takes a deep breath and plays his Nintendo DS.  He's such a warrior.

Time will tell.  Our first dose of 150 mgs instead of 300 mgs will be in two weeks.  I am praying that the right decisions are being made and that all goes well.

More to come :)

What's a Mom to do?

When you have a young "adult," there are certain things you have to let go.  Prophy is one thing.  My 19 year old, Julian, believes prophy is not necessary since he always infuses when he feels something coming on.  I finally had to let that go and accept it.

He asked me to specifically buy him a leather Medic Alert cuff.  I did.  And where does it live, next to his computer.  This is one that I'm not letting go of.  I keep telling him (without too much judgment) that I worry about the other drivers on the road.  One wreck when he has no factor in his system....I don't even want to imagine.

Last Thursday he came home with both knees bothering him.  He said he was going upstairs to treat.  I went to check on him and he looked at me and said, "I don't have any factor."  I can't believe I didn't go ballistic.  Never mind that since December I was dropping hints to remind him that he needed to order before insurance changed.  And here he was without a drop.

We called his pharmacist and she stayed until 8 pm trying to get his factor through.  He got his bleed doses the next day.  I explained to him all of the steps that were involved to get his factor (with new insurance changes) and he actually teared up and said, "Tina is freaking awesome."

I don't think running out of factor will happen again because he saw that the worst case scenario was having to go to the emergency room.

Sometimes you have to let your kids made their own decisions and suffer the consequences.  Some may think I was pretty harsh because he could have had a major bleed.  It would have meant a trip to the emergency room, but this was one that he had to learn on his own.

What can we do for our teens and young adults?

1. They need to order their own factor.  Some pharmacists use email and texts if you child is busy at school.  Encourage them to take responsibility.

2.  They need to keep an insurance card with them.  Explain copays and deductibles.  You'll have to do it over and over, but our kids need to know about insurance now.  It's not like when we learned about insurance as adults or even when our clotting challenged kids came into the world.

3.  When they are at the doctor's office, they need to fill out their own forms.  Have them be responsible for filling out documentation.

4.  Make sure they know what product they take and their dosage (Amicar included).

5.  Do they know the difference between their homecare and pharmaceutical companies?

6.  Make sure they have the names and numbers for their HTC, homecare and nurses in their phones.

I am sure there are many other things, but these are some of the basics.

Transitioning is tough, but we need to help our kids be ready to take control of the health.

What other ideas do you have for transitioning?

The Plan

Infusing is not going very well for my "Christian" right now.  He is fighting so hard because of his fear of needles and his father and I just cannot access him without help.  We have a plan in place.

We will be going to the HTC on Wednesday afternoons after school to have the nurse access him, while the Childlife Specialist works with him before the actual infusion.  Unfortunately it takes several people to hold him for the infusion, but there is no other way right now.  At least it takes his father and I out of the picture for a bit and our stress levels can go down as someone else is infusing Christian.

We also have an appointment scheduled for him Tuesday evening to see a therpist who specializes in play therapy.  I have no idea what to expect, but right now I will try anything.

Have you had any experience with play therapy?

He Doesn't Understand

My 15 year old, "Lance", has been very fortunate in his journey with Severe Hemophilia.  He has never had a joint bleed, and has really only had one severe muscle bleed….ever.  He had a low titer inhibitor, one port placed and was immune tolerized within 2 1/2 years.  The port never had an infection.  He had an appendectomy and came through without any problems.

A walk in the park compared to most.

That is why it is so hard to get him to understand the importance of infusing three times a week.  Last night he showed me an area on his upper thigh...a horrible bruise near his groin and it scared me.  That's when I went off on him about the importance of infusing.

 The problem (a good problem) for kids like Lance is that their treatment has been so good and so many bleeds have been avoided, that they do not know what it is truly like to have pain from a bleed (or maybe even know when a bleed is occurring).  Even though Lance has seen his little brother go through hours upon hours of severe pain from a bleed, it just does not register that it could happen to him.

 All I can continue to do, before he leaves the nest, is try to instill in him the importance of his treatment.  Once he is on his own, there is not much I will be able to do, but until then, I'll keep on hounding him about ordering his product and treating.

Beads

My "Christian" brought me a surprise from school...a pipe cleaner bracelet with five beads. I wear it proudly. Not just because my sweet boy made it for me, but because a year ago he could have beaded this pipecleaner. The nerve damage done by the first PICC line attempt was severe. It took many, many months before he could touch his index finger to his thumb. I am stepping back and taking joy in the little things...assisting with kindergarten homework, cleaning the kitchen after a satisfying meal, and little beaded bracelets.

Trusting through Transition

My "Lance" is fourteen. He will be fifteen on the 23rd! I don't know where the time has gone, but before I know it, he will be on his way to college.

Over the past few years my husband and I have been working on him taking responsibility for his bleeding disorder. He keeps track of his supplies and orders his factor every month. Here lately he's been slipping on infusing regularly. It often takes more than a "gentle" reminder.

Lance is part of a group of boys that have not experienced joint bleeds. I am so incredibly grateful for that, but it also leads to complacency on his part. You would think that since he has seen the extremely painful bleeds his little brother has gone through that it would encourage him to keep to his infusion schedule….well, it's a nice thought.

He has been in California this week on choir tour and I have to trust that he infused according to schedule.

Letting go is not easy. We just have to make sure we give our children the tools they need when they leave us.