Trying different treatments
He’s had sclerotherapy and the debulking surgery, and that’s really it, other than the G-Tube put in…We’ve had two [sclerotherapies]. This last time he had the embolization of his veins as well, but the first one he had, he was in a lot of pain. He was on morphine for days and had to be weaned off of it. He had a lump growing here and it actually disappeared after that, so that was pretty good. Most of his leg couldn’t be done because the cyst-like structures were like a beehive, so they have to really do it a million times on him before it would actually work, so they didn’t do much on his leg.
Mother of JT, toddler, CLOVES syndrome
Various treatments
We ended up doing the compression garments at nine months old, and we haven’t stopped since. She wears it from the time she wakes up in the morning to the time she goes to bed consistently every day. We started that right away. She did have two debulking surgeries done, one on the back of her ankle because she really didn’t have a heel shape to hold her shoe on, so a surgeon did some work on the back to help her fit shoes. Then he did a second surgery on the calf area and debulked quite a bit of tissue off, which helped her with fitting in clothes. She does have a length discrepancy in her bad leg, also. It’s about two centimeters right now, and we do address that with lifts in her right leg, her good leg, to off-set her length discrepancy so she don’t have any issues with hip or spinal cord issues… She doesn’t have any other issues. I mean it’s sensitive to her. If you bumped into her bad leg versus her good leg, it’s more painful, but other parts of her body, she has nothing. It basically stops right before the buttock, right underneath her buttocks.
Father of Erin, child, Klippel-Trenaunay syndrome
There’s a medication called sirolimus
There’s a med called sirolimus that has been proven effective in some kinds of vascular malformations. It’s an oral med, it’s in kind of the clinical trial stage, and so she’s actually going to start that hopefully next month or so. That’s a year-long study, but we don’t have many other options, and it’s got low risk. That’s where we’re at.
Mother of Riley, child, CLOVES syndrome
A balancing act
One of the things that he’s had the most difficulty with is the treatment is really severe that he has to go through to stop the bleeding. There are a lot of complications from the treatment that he’s on. Broken bones, high blood pressures, seizures, we’ve kind of run the gamut with issues because of that… He’s been on thalidomide, he’s been on vincristine and heavy doses of steroid treatment, IV and oral steroids. His condition responds very well to high levels of steroids, but the steroids also cause high blood pressure and he became osteopenic and had several broken bones. He had one year of 13 broken bones. So like I said, it’s sort of a balancing act, you treat it and then you have to treat the side effects to the drugs that were the treatment in the first place.
Mother of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
She hasn’t had any treatment for it
She hasn’t had any treatment for it. The initial treatment for the first year and a half was to keep her skin moisturized. The external part of the hemangioma, that was the black and blue part of it, you don’t want that to become dry or scab over, so she was kept constantly lubricated. Every time she was changed or cleaned or bathed, she had Aquaphor (which was almost like a Vaseline) on there to keep her skin from drying out, which worked out great and she’s had no issues. But beyond the tests of the MRIs and the ultrasounds, she’s had zero treatments, and needed zero treatments.
Mother of Melissa, child, Reticular hemangioma
Different types of treatments
Her first year she had two MRIs, a CT scan, when she was 10 months old she had a cerebral angiogram when she was, I believe, 17 ½ months old she had cranial facial surgery to try to cut off all of the veins that were connected into her brain. Unfortunately it didn’t really do what it was supposed to because when the plastic surgeon got in there he said that he didn’t find any main vessels to cut. Then when she was about 2, they started the sclerotherapy treatments and we had to go to Boston every 2 months for those. Since they didn’t cut all the veins during the cranial facial surgery, they had to inject something that would block the veins, because one of the veins was actually connected to her ophthalmic vein. So they had to inject that into the veins instead of injecting the sclerotherapy medicine a couple of times because if they didn’t do that and the medicine had gone into her eyes, then she could have gone blind. So they did the blockage stuff and they had to wait a little while to make sure that that it hardened and blocked the veins and then she went back, again maybe 2 more times for sclerotherapy. Then it was about a year and a half ago we went for the last time and he went in there and he said there was nothing more that he could do for it. So we were done with that.
Mother of Grace, child, Sinus pericranii