Towards the beginning of his explanations and history taking, this doctor did say something that hit me quite hard, he said "first of all, I don't want to give you any false hope-Caden's arm and chest will never look normal". Even though I felt I had long ago come to terms with this reality, hearing it out loud made my eyes sting with tears, and I had to fight hard to blink them away and concentrate on the rest of the conversation. Although I know we can never get to the point that Caden will look as though there was never any birthmark or swelling, I continue to believe that things can most definitely be done to help minimize future disfigurement, and I will forever be seeking out alternative treatments-more on this later.
So in summary, during this first appointment Dr. J discussed that after an initial work-up, most of the KTS patients are seen at the clinic about once a year-barring any complications. There is not much done in the way of medical or surgical treatments unless problems arise. He did say that at any point should we have concerns or wish to be referred to specific specialties for assessment he would have no problem with that. I asked his thoughts on alternative therapies such as the Manual Lymphatic Drainage massage, and he said that he's all for trying things that may work, as long as they aren't harmful, so to go ahead and try. I asked about lasering the port-wine stain, and he said that the dermatologist would be best to discuss that with, but there will be a lot to laser.
I think people get the wrong idea when I ask about lasering, like I only care about the aesthetic aspect. My real concern is what the port-wine stain can possibly turn into if not treated. Sometimes in adulthood, the mark can change from a basically flat reddish-purple, to much deeper purple raised and thickened skin that is almost puffy or "cobbled" in appearance. As you can imagine this would likely lead to further disfigurement and complications, so if lasering in childhood can help to lessen some of these effects, why not go for it? From all the literature I've read the consensus seems to be the earlier the laser treatments begin, the better the results.
Anyway, back to the appointment...I also asked about the possible use of a compression garment, because Caden's malformation involves the lymphatic vessels I figured the swelling is likely due to an accumulation of lymphatic fluid, therefore compression could help to move the fluid. Dr. J said that they don't usually offer or recommend these garments, unless it is in an older child whose lower limb is affected and is becoming heavy/causing problems with mobility etc. I was a bit disappointed because I feel like maybe a compression sleeve could help a little bit, and also protect Caden's arm at the same time, so what's the harm? This is something I'm not giving up on, and I think it requires further investigation...
So at the end of the appointment we were told that we would be called to come back in for another ultrasound of Caden's liver and other abdominal organs (even though we had an ultrasound of the liver done the doctor wants to do a more extensive one at Sick Kids). We were also given requisitions to go for more bloodwork, x-rays and medical photography before we left for the day. The photos were relatively painless and tear-free, but then came the bloodwork and finally the x-rays, by which time Caden had a meltdown-it didn't help that I had to hold him like he was hog-tied around some block on the table so they could get the necessary images.
Then it was back home just in time to make it to the appointment for the Lymphatic Drainage massage. The session went fairly well, the therapist (Kim) took some history and explained what MLD was about, then she proceeded to work on Caden a bit (by this time he had no naps and was getting cranky) and discussed the possibility that a compression sleeve may help, but that we could first try wrapping/bandaging the arm after the massage to see the effect it may have. I agreed to this and she bandaged him up, telling me to take it off before he went to bed and see if there was any improvement to the size of the arm-if there was it would be a good indication that compression may help.
That evening when I unwrapped the bandage, I was quite surprised to see not only that Caden's arm looked overall smaller, but that the skin and soft tissue felt very pliable-not tight or hard at all, to the point where I could feel the bone in his forearm (which is unusual). This only lasted a couple of hours though, before it was almost back to normal. It probably didn't help that he was rolling around in his sleep and laying on that side. However, this did give me some hope that perhaps regular massage and consistent compression can be of some help. Kim taught me some basics of the massage and how to wrap the arm so that I could continue doing it hopefully daily between visits. The first two times I did it Caden's arm looked a bit smaller, but his hand seemed extra puffy, and yesterday it didn't seem to help at all, so I think I'm doing something wrong-good thing we have another appointment on monday!
In other news Caden had his 9 month check-up at his GP, and everything is going well except for his weight. Since the end of April he has lost weight-that's right, he weighs less now than he did over 2 months ago :(
I suspect that this has to do with him not wanting to eat solids, so now I really have to force the issue. Thankfully he has started to eat most of the foods I've offered him in the past few days so hopefully he keeps it up-we have an appointment to re-check his weight in a month so we'll see...
Oh, and finally the GP had the results of the liver ultrasound, and essentially further follow-up is needed, the ultrasound report just acknowledged that there is some sort of lesion, but that a dedicated MRI should be done to assess it-great, not another MRI :( So I guess I'll be contacting Sick Kids again to figure that all out...
Must go to bed now...but not before posting a pic or three of the little man :)
