Soooo, as for the results of the MRI:
-First of all, Caden's brain is free of any malformations, which is awesome :)
-It looks as though the type of vascular malformation that Caden has mostly involves the small vessels; more specifically the capillaries and lymphatic vessels, as opposed to involving the larger veins and arteries. A doppler ultrasound is recommended as follow up to ensure that none of the larger vessels are involved.
-There is also some bone involvement which pretty much follows the pattern of his port-wine stain and swelling. That is to say that the bones in his right arm, shoulder blade, some of his ribs and vertebrae are somewhat "expanded". There's also a slight curve to his spine. There may be minor involvement of the bone in his left upper arm. Further x-rays will need to be done to determine the extent to which the bones are affected.
-The skin, soft tissues and muscles of his right arm and right upper torso are thickened-anyone who has seen him could tell you this without an MRI...
-There are a few enlarged lymph nodes in his right armpit (we have been able to feel a lump there since birth)
-There is a "non-specific" lesion seen on Caden's liver. This could possibly be another grouping/malformation of blood vessels, but an ultrasound will need to be done to see what it is. The annoying part is that the doctor who gave us the results didn't mention this, I only noticed it after we left when I read the MRI report...
-The report indicates that the findings may be consistent with Klippel-Trenaunay Syndrome...my guess is that the radiologist doesn't give a diagnosis, only reports the findings, therefore in order to get a diagnosis of KTS we just need the specialist to look at all of the imaging and say "yup, that's what it is"
A couple of days after getting the results, we had an appointment with the pediatrician, who had also received a copy. After fitting in all my questions, and discussing the results in detail (including the liver lesion) we left the office to go to the local hospital for bloodwork. Caden had seemed especially grumpy and pale looking for a couple of weeks prior, and because of his recent refusals to eat solid foods I suspected he may be anemic. His motto seems to be "all breastmilk-all the time" something that needs to change prior to starting daycare! The pediatrician also made a referral to have an ultrasound of the liver, and referrals to both physio and occupational therapy, which will hopefully minimize any movement/postural issues related to the KTS and also assess and address issues with feeding respectively.
Since then we have had the ultrasound, but no results yet...I'm hoping this means that there are no big issues, because it's been over 1.5 weeks and I'm assuming they would have sent the results to the doctor ASAP is there was anything significant. Also the bloodwork was normal so I guess there must be another reason for the grumpiness and pale skin ;)
In the meantime I've been investigating Manual Lymphatic Drainage, a technique performed by individuals with specialized training (usually RMT's or physiotherapists), and which can help to move some of the fluid and lessen swelling to the affected limb/body part. I found a woman locally who is an RMT and who is trained to perform MLD, and we have a consult this friday with her. In my online research, I came across a very interesting illustration about the way lymph drains from the body, here it is:
I was pretty shocked when I saw this image because the right drainage area is almost an exact diagram of the pattern of Caden's swelling/port-wine stain. So it seems that the malformation certainly involves this area of the lymphatic system.
A couple of weeks ago I went up to a friend's cottage near Parry Sound. It was quite the event because I also brought Caden, and Dave had never been away from him overnight before (never mind 2 nights!). The cottage was awesome and it was great to hang out with the girls again!
However, the first morning I woke up (well, I never really slept I guess) and noticed that Caden's right arm looked quite a bit larger than usual, slightly purple and the skin was very tight and shiny. The tightness and colour resolved after half hour or so, but the arm still appeared larger than I'd ever seen it, so I chalked it up to him lying on it for most of the night. Since then, his arm has fluctuated a bit in size and varied in colour, but it has yet to go back to the size it was prior to this "jump" in the swelling. I would estimated that it appears about 20% bigger than it was just a few weeks ago.
About a week ago I contacted the nurse from the derm clinic at Sick Kids to discuss that I was concerned about this overall increase in size. She was probably not the most appropriate person to call, but currently there is no other option because we are still waiting to be seen by the vascular anomalies clinic. The end result was that they booked us an appointment to be reassessed on July 7.
Then, last Friday, Dave, Caden and I went to the Eaton Center for a birthday shopping trip (my birthday was Saturday). Probably not too smart given the G20 protests, but we didn't encounter any of those problems. What we did encounter was Caden's right arm swelling larger than we'd ever seen, with tight, shiny, hard skin that was somewhat molded to the shape of the stroller wall he was leaning against! Needless to say, we rushed over to Sick Kids in hopes of being fit in to the derm clinic, only to discover it was closed. Our next best option was the Emerg, so over we went. After being checked in pretty quickly we settled into a nice private room with a tv, and proceded to spend the next 7 hours there. Of course after the first hour his arm looked almost back to it's new "normal" size, but by that point we were invested and wanted answers. By the time we left Caden had received an ultrasound of his arm, confirming that there were no clots or bleeds. We got to see that the main blood vessels (veins and arteries) of that arm are normal from his armpit down to his hand-which in itself was worth the 7 hours. The final stretch was waiting 2 hours for bloodwork to come back, and it was normal. The ER doctors did consult with Caden's main dermatologist who wanted to see him in the clinic on monday.
And that brings us to this week. Monday we went in to see the dermatologist, and after painfully explaining Caden's condition to her resident who didn't speak english, we finally got to see her. She totally agreed that the swelling shouldn't just be left to go on and on, and that we should be seen soon by the vascular people, as opposed to the projected couple of month wait. She must have either thought the swelling was really serious or she pulled some strings because we now have an appointment for this friday with the vascular clinic-the people who will likely treat/follow Caden's condition from here on out. I really need to make a list of questions because I know I will come away from it thinking "oh I should have asked that!".
In non-medical news, Caden is as cute as ever, and just turned 9 months old yesterday. He's having some eating and sleeping issues, but he's still awesome so I can't complain :)
Dave also had his first father's day, and it wouldn't be complete without the father son pic from that day:
A couple of weeks ago I went up to a friend's cottage near Parry Sound. It was quite the event because I also brought Caden, and Dave had never been away from him overnight before (never mind 2 nights!). The cottage was awesome and it was great to hang out with the girls again!
However, the first morning I woke up (well, I never really slept I guess) and noticed that Caden's right arm looked quite a bit larger than usual, slightly purple and the skin was very tight and shiny. The tightness and colour resolved after half hour or so, but the arm still appeared larger than I'd ever seen it, so I chalked it up to him lying on it for most of the night. Since then, his arm has fluctuated a bit in size and varied in colour, but it has yet to go back to the size it was prior to this "jump" in the swelling. I would estimated that it appears about 20% bigger than it was just a few weeks ago.
About a week ago I contacted the nurse from the derm clinic at Sick Kids to discuss that I was concerned about this overall increase in size. She was probably not the most appropriate person to call, but currently there is no other option because we are still waiting to be seen by the vascular anomalies clinic. The end result was that they booked us an appointment to be reassessed on July 7.
Then, last Friday, Dave, Caden and I went to the Eaton Center for a birthday shopping trip (my birthday was Saturday). Probably not too smart given the G20 protests, but we didn't encounter any of those problems. What we did encounter was Caden's right arm swelling larger than we'd ever seen, with tight, shiny, hard skin that was somewhat molded to the shape of the stroller wall he was leaning against! Needless to say, we rushed over to Sick Kids in hopes of being fit in to the derm clinic, only to discover it was closed. Our next best option was the Emerg, so over we went. After being checked in pretty quickly we settled into a nice private room with a tv, and proceded to spend the next 7 hours there. Of course after the first hour his arm looked almost back to it's new "normal" size, but by that point we were invested and wanted answers. By the time we left Caden had received an ultrasound of his arm, confirming that there were no clots or bleeds. We got to see that the main blood vessels (veins and arteries) of that arm are normal from his armpit down to his hand-which in itself was worth the 7 hours. The final stretch was waiting 2 hours for bloodwork to come back, and it was normal. The ER doctors did consult with Caden's main dermatologist who wanted to see him in the clinic on monday.
And that brings us to this week. Monday we went in to see the dermatologist, and after painfully explaining Caden's condition to her resident who didn't speak english, we finally got to see her. She totally agreed that the swelling shouldn't just be left to go on and on, and that we should be seen soon by the vascular people, as opposed to the projected couple of month wait. She must have either thought the swelling was really serious or she pulled some strings because we now have an appointment for this friday with the vascular clinic-the people who will likely treat/follow Caden's condition from here on out. I really need to make a list of questions because I know I will come away from it thinking "oh I should have asked that!".
In non-medical news, Caden is as cute as ever, and just turned 9 months old yesterday. He's having some eating and sleeping issues, but he's still awesome so I can't complain :)
Dave also had his first father's day, and it wouldn't be complete without the father son pic from that day:
