Long overdue update

I've really neglected this poor little blog. Around the time I gave up writing Thomas was teething and his sleep went all to hell. I was tired and it was hard to sit down and focus on anything. Anyway, I'm still tired but that's no excuse now.

So, a much needed update on lots of things. These days hemophilia is certainly part of our lives to an extent that it wasn't when he was littler but it's definitely manageable. I think things have been easier than we expected to this point. I'll get to some specifics.

Immunizations
Thomas is up to date on his immunizations. We haven't had any bleeds as a result of them. Each time we've made little pressure dressings and applied ice. It may be overkill but since they've all gone so smoothly, I'm not about to mess with success so we'll continue doing all those things every time.

Bleeds and bruises
We haven't dealt with an actual bleed yet but it seems as he's getting older, he's bruising easier and easier. He's looked pretty shocking at times. He army crawls instead of hands and knees crawling so his knees are being spared but his elbows and forearms really take a beating. The worst bruise we've seen so far was on the back of one of his thighs. It was really big and dark purple. It took weeks for it to heal and even now, probably two months later, you can see a light brown mark where it was. We're pretty sure it was from sitting in a shopping cart so now we line carts with his blanket before we sit him in them. That seems to have fixed the problem. It's really unpredictable what will cause a bruise and what won't. We pick him up under his arms all the time (and he's really heavy) but he's never bruised there. Meanwhile, right now he has a line of three bruises on one of his legs that totally looks like fingerprints. Those are the kinds of things I would prefer that strangers not see. I can only imagine what I would think if I saw a kid with what looked like a handprint shaped bruise on his leg.

When we first started prophylaxis (which I'll talk about in a minute) we saw an immediate improvement in the bruising but now it seems to be increasing again.

Prophylaxis
When I last updated, the plan was to start prophylactic infusions of Factor VIII at 6 months. Well, at about 5.5 months we went for a clinic appointment and had some blood work done. It was traumatic to say the least. He's always been a chubby baby and it took three attempts to get the blood drawn, ending with getting it from his ankle. We all decided then that venous access was just too difficult at that point to start trying to do regular infusions. I've been asked why a port wasn't suggested at this point. Our hematologist made it clear that she wouldn't consider any sort of venous access device at that point and while I didn't specifically ask why, I thought it was because the risks of doing that just weren't warranted based on the evidence for starting prophylaxis at that age. I talked about this before but up until very recently, kids usually started prophylaxis around 18 months to 2 years. There is some new evidence to suggest that earlier may be better but I don't think it's terribly convincing. So our plan at that time was to reassess in a few months.

By the time we went for our next appointment I was more than ready to get started. We had some blood work done in the outpatient lab and it went extremely well. Thomas was also starting to bruise a lot more and I really wanted to get him on some factor. He had his first dose on on February 13th at almost 9 months old. It was difficult but not terrible. Two nurses poked him one time each. The second infusion was worse. And the third time, I did it! I was on a high after that because I got it on my first attempt and he did awesome. I thought this was wonderful. I was awesome at it and he was never going to have to go through the trauma of anyone else doing it again. Unfortunately, the times since then haven't been as great. I'm usually pretty good at IVs and venipuncture at work and I really think that people can get themselves psyched out and start missing just because they think they're going to miss. That's about where I am right now. I've put a lot of pressure on myself to get us to a point where we can do it at home and now after struggling through doing it the last three weeks, I'm feeling a little defeated. We go in to the clinic again tomorrow morning and I'm going to do everything I can to talk myself into believing I can do it.

At this point we're doing a 50% dose once a week. I'm not sure how things are going to progress from here. The last time we talked to the hematologist she talked about increasing it as he has joint bleeds. I don't like the sound of that and I would rather prevent joint bleeds altogether. We should have an appointment with her soon so we'll see what the plan is then.

Daycare
My maternity leave is quickly coming to an end and Thomas is starting daycare orientation on April 20th. My heart skips a beat just thinking about that. Our clinic nurse has offered to do an education session with the daycare and they are very receptive to that. I have a hard time talking to them about it because there are so many unknowns. We know what Thomas is like now but we really can't say what things will be like when he starts walking. Who knows what issues might come up when he's playing with other kids and stuff. We aren't really that careful with him right now. He has a soft helmet and knee pads but we never use them. I'm not sure how we want to use those things at daycare. To be honest, my bigger concerns at this point are whether he'll nap there and drink milk from a cup.


So, that's where we are right now. He's such a great little guy. He's had a cold all week and even though he's obviously been miserable, he's still so nice and usually really easy to get along with. I'm looking forward to getting back to work but it's going to be really hard to leave him.

Immunization Update and Finding Childcare

It's been a week and a half since we went ahead and did Thomas' immunizations. I'm happy to report that it went perfectly. He had one injection in each thigh. It was so sad of course to hear him scream afterwards. I was pretty tense about the whole thing. Steve came with us so he held him afterwards and I held pressure on the sites. Then I made little pressure dressings for his legs which was suggested by a lovely reader of my blog, "sarasarasara". Thanks for the tip, Sara! I folded a 2x2 gauze, put that over the site, and wrapped the whole thing with Coban tape. That's the stretchy tape that sticks to itself, not skin. Here's a pic of the poor little guy after he got all bandaged and breastfed.

I put ice on his legs for ten minutes also. It may have all been overkill but he didn't get so much as a bruise so you can bet I'll be doing the same thing next time.

Several people suggested getting the shots subcutaneously rather than intramuscularly. For those wondering, subcutaneous injections go just into the fat under the skin and are unlikely to cause trouble with bleeding. Intramuscular injections go into the muscle which can cause a bleed. Anyway, our hematologist looked into it and said only the Hepatitis B vaccine could be given sub-q. I asked our family doctor as well and she said she had never heard any evidence that giving them sub-q would be effective. So, that's why we went with IMs.

With that all behind us, we've moved on to arranging childcare for when I go back to work. That isn't until April of next year but I wanted him in a centre and they can be hard to get into. We decided to first try for the centre where Ty had gone. It's familiar and we had a good experience there overall. Still, because Thomas is different, it's pretty stressful. When I was still pregnant, my biggest worry about daycare was whether they would use our cloth diapers. That seems pretty trivial now. Well, kind of. It was still our second biggest concern.

The Canadian Hemophilia Society has really thought of everything. We were given a booklet about choosing childcare and also one that's meant to be given to schools to explain what hemophilia is and what the school needs to look for. There's also a grant available to the daycare centre for any extras they may need to look after Thomas.

We went to meet with the director this week since Steve was on vacation. I was nervous. I guess on some level I worried that they may not even accept him. Well, I didn't have to worry too much. When we explained Thomas' condition, she didn't seem concerned at all. She said they have had all kinds of special needs there. Tell the teachers what they need to know and they'll look after it. She was quite laidback about it. At first I thought that maybe it was because she didn't get it but by the end of our meeting I think she did. She said they are an "inclusion" centre which I think means that since they get government funding, they can't turn away kids with special needs. (Don't be fooled, government funding doesn't equal cheap. We may go broke paying for childcare.) It's a bit hard to tell someone what to expect from Thomas by the time he starts there because we just don't know. Maybe he'll have a port by then or at some point after that. I did tell her that and she said that was fine, too.

So overall, I felt pretty good about the whole thing. We paid the enrollment fee to hold his spot so he'll be starting in mid-April. When I asked about cloth diapers she actually said that we could just write out exactly how they wanted us to handle them to make things easier for us. HA! Easier for us? I had planned on making things as easy as possible for them by saying they could just fold up the diaper and put it in the wetbag. But maybe I should take full advantage of this and have them dump out the poop!

The director was going to look into applying for the grant. I have no idea how much money it might be but any suggestions for what we should ask them to get with it? She said they have first aid kits in each classroom but I didn't look at them. I was thinking maybe a really good one just for Thomas? Ice packs? I don't know what else...

What to do, what to do...

Steve and I have recently been facing our first decision in reagrds to Thomas' health care. To immunize him now according to the usual schedule or delay it until he's on prophylaxis. It's all about preventing inhibitors. Here's how it works, as it was explained to me:

Now that factor concentrates are safe and the risk of blood borne disease is virtually eliminated, one the biggest complications in hemophilia is the develpoment of inhibitors. An inhibitor is basically like an antibody which causes the person's body to attack the Factor VIII like a foreign substance. For these people the Factor VIII doesn't work any more. Factor VIII is essential for blood clotting so if it doesn't work, where do you go from there? I don't entirely know. There are ways to get rid of inhibitors but no one has explained it to me yet and I'm not about to try to explain it based on my limited research. Long story short: inhibitors are bad.

So, the goal at the moment in Thomas' care is to prevent inhibitors. Our hematologist tells me that there is some evidence to show that early prophylaxis may help. If he receives his first dose of factor in response to a bleed, he's more likely to develop an inhibitor. This is because his immune system will already be hyped up due to the inflammatory response caused by the bleed. In this hyped up state, his body is more likely to attack the factor. This is why the current plan is to start prophylaxis so early. At 6 months he'll be started on regular infusions of Factor VIII. This way his body can get used to it, hopefully in the absence of bleeding.

So what does this mean for immunizations? Well, the immunizations are given by intramuscular injection. This has the potential to cause him a muscle bleed which would need to be treated with a factor infusion. So that's exactly what we don't want. The first infusion in the face of an inflammatory response to the bleed, not to mention the hyped up immune system due to the immunzations themselves. Both these things make his body more likely to attack the factor.

There is another piece to the puzzle. Some people are more likely to develop inhibitors due to their genetics. Our particular gene is associated with a lower risk. Based on this, our hematologist has recommended that we go ahead and do the immunizations now with pressure held to the injection sites for 5 to 10 minutes. Our other option would be to wait until around 8 months of age, when his body has already experienced several doses of factor.

I've gone back and forth so many times on this. I have to admit that I'm as afraid of experiencing his first bleed as I am of developing an inhibitor. I'm sure a time in our lives will come that I'll realize that's ridiculous. Bleeds will certainly be part of our lives and I can't avoid the first one forever. But at this point, I can hardly bear to think of my 2 month old going through the pain of a bleed. Not to mention the trauma of requiring an IV infusion in those chubby little arms to treat the bleed. My first instinct was to delay the immunizations.

Then there is the other side of the argument. What if we delay and he gets whooping cough or meningitis in the mean time? He's home with me but he's got a big brother who brings every germ going home from school. People seem to take vaccines lightly, especially on the internet. If you look around the internet a bit, you'll get the impression that vaccines are evil and no one does it any more. Now that I'm in this position, I just don't get the people who choose not to immunize based on some fear mongering website that bases its "facts" on the study of a doctor who has since been proven to be a fraud. I mean, I'm not sitting here worrying about him catching diptheria but pertussis and meningitis are very real concerns. Kids get these things and they can actually die from them. That's why I just can't empathize with people who are anti-vaccines. If they choose not to vaccinate their kid based on their personal beliefs then "herd immunity" is a little bit weaker, leaving kids who have legitimate reasons for not being vaccinated a little less protected.

Where does Steve stand in all of this? His feeling is that we should do what the doctors recommend but he'll ultimately support whatever I choose. He knows that I drive myself crazy worrying about things. And I can't just defer to the doctors. It was presented to me as a decision so I'll blame myself if things go badly because I made the choice.

So this is where we stand right now. Thomas had his 2 month checkup last week (14 lbs 14 ozs, by the way!) and I did not do the immunizations. I've continued to agonize over it since then so yesterday I made an appointment to get them done next week. My plan is to hold pressure on the sites for 10 minutes, apply ice packs on the way home, and cross my fingers. I'll update after the appointment to let you know if I did it or if I got cold feet.