Jakers and KTW Sydrome
by Erin Castellano on Saturday, March 26, 2011 at 1:01am
I know I should have done this a few weeks ago, but I think I have just processed and accepted the situation. As most of you know, Jake was back at Rady Children's Hospital 2 weeks ago. He was screaming again and not eating and very very upset. Mommy intuition, I knew he was in pain. I took him down to the ER and within 2 hours we had been admitted. (I'm coming to the understanding that every time we end up in the ER, we WILL be admitted.) He had an MRI the next day which found a bleed in his bottom. Now that he is pulling himself up and crawling all over, he may have fallen a little too hard on his bottom, which caused a bleed. They immediately took him off of his daily aspirin, which he was taking to thin his blood to stop clotting. They said his body would absorb the bleeding and he would soon be himself. For the meantime, he is on Tylenol for the pain. Which is getting better. The doctor compared the pain to a really bad bruise but always sore and worse to the touch. He didn't sit on his bottom for a good few weeks and is finally acting like himself again.
I'm sure I've mentioned this syndrome before, but this is his for sure diagnosis, Klippel-Trènaunay-Weber Syndrome. How do you say it??? I'm not sure. So we will stick with KTW syndrome. After a lot of research, Ive found this is pretty much what he has and what the doctors are now calling it. His lymphatic malformation, abdominal cysts, venous malformation, port wine stains, are all associated with this syndrome. Is there a cure? No. Is it treatable? Yes. This syndrome and Jake's condition is manageable. After being discharged from the hospital, we finally had our big appointment that same week. We met with a radiologist, plastic surgeon and his dermatologist from Rady. They sat down with us, looked him over, were amazing and set a plan.
We head to Hawaii in two weeks, YEA!, so when we return, the Dr who is the radiologist will begin Jake's treatments. He will work on shrinking the cysts in Jake's abdomen and Jake will be hospitalized for a week for observation. This will happen twice.
In a year from now, the plastic surgeon wants to work on the extra lymphatic tissue in Jake's leg to bring that under control and help it look not so big. The radiologist will also go back in and cut off the extra blood flow that Jake has.
With KTW syndrome, it is hormonal based. Meaning this will continue to come back and he will continue to have surgery. We may see a larger growth of it when he hits puberty. Luckily he has some awesome doctors watching out for him.
We also have our work cut out for us. There are so many things to watch for. Any slight fever, discoloration of skin, excessive fussiness, etc, will put us in the hospital for MRIs and blood tests just to make sure everything is okay and they can treat any problems. We have such a happy little man and its easy to tell when he is in pain or just not himself.
I am grateful we got the OK to head to Hawaii. ((I am bringing along his medical files tho)).
Thanks for all of the prayers that are sent our way. We are super blessed!
More info....
http://www.medicinenet.com/klippel-trenaunay-weber_syndrome/article.htm
I'm sure I've mentioned this syndrome before, but this is his for sure diagnosis, Klippel-Trènaunay-Weber Syndrome. How do you say it??? I'm not sure. So we will stick with KTW syndrome. After a lot of research, Ive found this is pretty much what he has and what the doctors are now calling it. His lymphatic malformation, abdominal cysts, venous malformation, port wine stains, are all associated with this syndrome. Is there a cure? No. Is it treatable? Yes. This syndrome and Jake's condition is manageable. After being discharged from the hospital, we finally had our big appointment that same week. We met with a radiologist, plastic surgeon and his dermatologist from Rady. They sat down with us, looked him over, were amazing and set a plan.
We head to Hawaii in two weeks, YEA!, so when we return, the Dr who is the radiologist will begin Jake's treatments. He will work on shrinking the cysts in Jake's abdomen and Jake will be hospitalized for a week for observation. This will happen twice.
In a year from now, the plastic surgeon wants to work on the extra lymphatic tissue in Jake's leg to bring that under control and help it look not so big. The radiologist will also go back in and cut off the extra blood flow that Jake has.
With KTW syndrome, it is hormonal based. Meaning this will continue to come back and he will continue to have surgery. We may see a larger growth of it when he hits puberty. Luckily he has some awesome doctors watching out for him.
We also have our work cut out for us. There are so many things to watch for. Any slight fever, discoloration of skin, excessive fussiness, etc, will put us in the hospital for MRIs and blood tests just to make sure everything is okay and they can treat any problems. We have such a happy little man and its easy to tell when he is in pain or just not himself.
I am grateful we got the OK to head to Hawaii. ((I am bringing along his medical files tho)).
Thanks for all of the prayers that are sent our way. We are super blessed!
More info....
http://www.medicinenet.com/klippel-trenaunay-weber_syndrome/article.htm
Erin, Love your blog! What a great way to keep everyone in your lives posted about Jake. He is such a special little man and has the greatest parents in the world to get him through his tough times. You guys are always in my thoughts and prayers.
ReplyDeleteI'm so excited for you guys to vacation in Hawaii (and a little bit jealous). Have a fabulous trip!!! I look forward to seeing all of your family pictures. :o)
Love~ Claire