Yesterday we went back to Duke for another dermatologist appointment. Every other time we go the nurse weighs Grace and every time we go they check her blood pressure. Yesterday her weight was 10 lbs. 15 oz. (my baby is growing fast!) It's amazing the tiny little cuff they have hooked to the machine to check her blood pressure. The nurse says its hard to get an accurate blood pressure reading on infants so they check it 2-3 times. Grace does fairly well throughout the process, MUCH
unlike her Daddy when he's getting his blood pressure taken. :)
Our days that we go to Duke is very tiring. I'm often given lots of information to digest at each appointment about what to expect, what other treatments may be needed in the future, etc. However I still tend to be encouraged that we have professionals there for support.
Out of the 3 ulcers that Grace has one has healed very nicely. Yay! We're still going to put the topical ointment on it for another few days and then we can stop using it on that particular spot. The other 2 ulcers don't seem to be healing as nicely. We went ahead and had her 3rd laser treatment on those ulcers yesterday. There are 2 new places that are beginning to ulcerate as well. I can deal with the hemangioma itself, but its so hard knowing that she's in pain from the ulcers. Whenever it bleeds I feel her pain. It's so heartbreaking to dress her wounds with her crying.
Due to the new ulcers, and the other 2 that don't seem to be healing, the doctor has now recommended that we give her oral medication in addition to the topical cream she's using. This medication is called propranolol. If we choose to use this medication she would start on a very small dosage 3 times a day and every 2 days the dosage increases until it reaches a target amount. Once they feel that she doesn't have to be on the medication any more she will gradually come off of the medicine.
Propranolol is an alternative to prednisone. Prednisone use carries the side effects of elevated blood sugars, and reduced resistance to infection. Propranolol has side effects that include hypotension and hypoglycemia, but these are short-lived and we wouldn't have to be worried about her catching something out in public since she wouldn't have a reduced resistance to infection. Propranolol is a medication that is a non-selective beta blocker mainly used in the treatment of high blood pressure. It is also the only drug proven effective for the cure of migranes in children. Propranolol has been on the market for around 50 years, but is just recently been used as treatment for hemangiomas.
Here's an article that I found intersting, that you can take a look at if your interested:
http://content.nejm.org/cgi/content/full/358/24/2649 The images of change are amazing. It also gives you some background to how this drug began to be used to treat hemangiomas.
Although I really like the doctors & nurses at Duke, we're still skeptical about putting any sort of medication in Grace's system. We have the prescription but I haven't had it filled yet. I'm doing as much research as I can to educate myself as well as saying lots of prayers that we will make the right decision for Grace's treatment. In my research I have stumbled across other parent's blogs who have children with hemangiomas that are being treated with propranolol and their comments about the drug are positive. There are many forums I have read as well. It's wonderful to be able to communicate with other parents who are going through a similar process. I guess that's why I'm trying to add as much as I can about this part of Grace's life to her blog. Not only for our information and for us to remember, but maybe other parents that are debating the use of propranolol or just dealing with a hemangioma in general will stuble across this blog and know that there are others out there that have had to make some of the same decisions.
Please pray for the doctors, as Scott and I as we are faced with these decisions about what is best for Grace & the treatment of her hemangioma. We certainly want to do whatever is necessary to protect her development (physical, emotional, psycho-social). Scott and I struggle with the fact that she even has to be faced with this, but we are thankful that she is healthy and happy. We know that we could be dealing with much worse situations and we're so thankful that is not the case. She has such a precious and sweet little personality that shines through more and more everyday. We are indeed thankful and so very blessed.
Grace doesn't like tummy time too much. We're beginning to wonder if its because of her ulcers or if she just doesn't like it. So in addition to tummy time I'm giving her some time in her Bumbo chair to strengthen some of her neck muscles. She did fairly good in those two pictures but slowly begins to drop her head to a more comfortable position. Maybe by next month she'll be more comfortable. She doesn't get upset in the chair though, so that's a good thing!
Remember my friend Stephanie…
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