A lot of veins
Within her malformation she has a lot of veins. Her veins are larger than a normal vein and she has more veins than we would. The sclerotherapy is done in her case to collapse the abnormal veins and scar them up so they’re not open anymore and the problems they can cause are minimized.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
It’s a very slow progress
They’ve done a lot of treatments. They’ve done sclerotherapy, which they did 6 times before he was 2. Right now we’re kind of in this waiting phase, in between will they do more sclerotherapy or will they do a debulking surgery? We’ve noticed a drastic difference with the sclerotherapy in terms of the size of the malformation, but it can be a very slow progress. Once they do the sclerotherapy it can take 6 to 8 weeks to see the results, so you’re gradually seeing it, and then one day you might see a picture and say, “wow, look how far we’ve come.” So that’s pretty amazing.
Mother of Matt, child, Lymphatic malformation
This sclerotherapy stuff, she does not like it
She had her first sclerotherapy, when she was 20 days old. The sclerotherapy is very irritating. Whenever she has the sclerotherapy she’s more cranky… My understanding of it is, they go in with a needle and they pull the fluid out with the needle and then they put medication in with that needle and it’s kind of itchy and burning. It kind of scars the tissue up and shrinks it. Well it’s very irritating to her, she does not feel good after that. I know surgery hurts and everything, but she seems to bounce back really from it. She has a high pain tolerance, like nobody I’ve ever seen, she’s tough as nails, but this sclerotherapy stuff, she does not like it.
Mother of Annabelle, child, Lymphatic malformation
It’s almost balloon like
They would sedate him, then they would assess the malformation using an ultrasound machine and look for pockets that could be treated with sclerotherapy. The pockets that can be treated are usually the larger cysts (they call them macrocysts), and what they do is they actually inject the medicine (the one they used for Matt was an antibiotic, doxycycline), into the cyst. From what I understand it causes an inflammatory reaction that scars down the cyst so that it can’t fill back up with fluid… There are definitely concerns, because it does inflame it at first and it gets larger. So each time that Matt had it, he was in the ICU for 4 to 7 days each time, and the majority of that time, other than maybe the last 12 hours, he was sedated for comfort… So that’s really difficult, it’s looking at your child, almost like a shell of himself, that’s really tough. I think that’s the biggest concern is that the actually swelling could impact his airway, that was the biggest concern.
Mother of Matt, child, Lymphatic malformation