August 3, 2012

Well I just put Lexi back on her timolol. I've been noticing for a few weeks that her "bumpy" looks swollen. I kept telling my husband and he kept dismissing it as though I was nuts. I called the pharmacy yesterday and had them refill the script and I picked it up today. I will check back and update to let those keeping up with us how it goes. Today my husband really looked at Lexi and finally agreed that her bumpy looks swollen. We go back to the derm in a few weeks. It's been awhile since we have been there. I wasn't even going to keep this appointment because I thought we were passed all of this but I guess not. So we are now back on the timolol. :(

Feb. 5th 2012

Feb. 11th would mark TWO years of when we began the treatment of Lexi's hemangioma. That is when we started treating her with propanolol.

She has been successfully off of propanolol and she is now off of timolol as well. She has been off of timolol for about 2 months now. We have seen no changes in her hemangioma. It is still there but it is barely recognizable. Her pediatrician thinks that as she grows the hemangioma will flatten and you will not see much of anything. As of now all you see is some swelling of skin which to me it often looks like "extra skin" but that's about it.

I am very glad that we treated Alexis with the propanolol to begin with, it has truly helped. I believe with all of my heart that if we did not treat her we would have had more problems on our hands.

Alexis is TWO

Well Lexi is now two years old, I can't believe it. What a beautiful two years with her! In June she finished up the propanolol and she is on timolol gel now. I rub it into her "bumpy" twice a day. It seems to keep the swelling down on her "bumpy." She had an appointment a few weeks ago for her derm but we had to cancel it. We go back at the end of September for another appointment. She is now starting to say "bumpy" when I put her med. on her. So she does know what I'm doing but of course she has no clue what her bumpy is. People have asked me about her bumpy and how things are going and then people look @ her and say they don't even see it. Some people literally have forgotten about it because they do not see it. So that's a good thing that they do not see it but it's nice that "some" people still care enough to ask about her. But anyway that's the update for now and I truly thank those of you who keep up on Lexi and her journey. Thanks for all of your continued support and prayers.

Propanolol

Today is day #2 of no propanolol for Alexis. She is still on the timolol twice a day but she has not taken her propanolol for two days now. I think her "bumpy" looks puffy but my husband thinks I am crazy.

Alexis hates having me put on the timolol gel. She fights me every single time I have to do it. She hates anything being done to her though. Clipping her nails are a chore as well.

Anyway that's my short update for today!

Thanks again to all those who have been following her journey and thank you for your continued prayers, questions, and concerns on her.

May appointment

Notes: Alexis is a little over 20 months old.

We went to Lexi's derm appointment in Wexford today. We weren't supposed to go back until August but since the weaning off of propanolol did not work Dr. K wanted to see her in a month so the appointment was made for today. She saw another new doctor who is working with Dr. K. And after much debating both doctors have decided to put her on Timolol gel twice a day. It's a gel that you put on the hemangioma. It's basically a gel form of propanolol is how I understand it. I know people who have used it for their child with a hemangioma. I have not done much research on it -which is something I tend to do. But she will have that put on her AND have the propanolol once a day for about a month. After the month is up her doctor wants me to take her off the propanolol completely and continue to use the timolol gel. Her doctors are baffled as to why her hemangioma keeps swelling up and why the propanolol -in such a lose dose is even helping the hemangioma to stay "stable." So this is where we stand for now. Thanks to all those who are keeping up with Alexis and asking how her doctor appointments are going, etc. It's nice to know people care. Stay tuned.......

Weaning from propanolol not a success

Yesterday March 14th marks one week without any propanolol for Lexi. Over the weekend I noticed her "bumpy" started to look noticeable again comapred to it not being noticed at all. It looks swelled. So yesterday I put a call into her doctors and they called me back telling me to put her back on two doses per day. I told them that she seemed okay on one dose and they told me to go ahead with one dose but if I see it swelling to go back to two doses. Regrowth at this age (18 months) is odd but it does happen. I've heard of it happening clear up until the age of 5. But regrowth at this age is not normally a rapid regrowth so that's why it is "swelling" so slowly. We don't want it to creep up on us like it did before and get really big and push down on her eye, etc.

On a side note: We do not know how the 1.3ml is even doing anything to help Lexi. This is the same dosage as when she first started the medication. When she first started it was 1.3ml 3 x's a day but when we took it down to 1 dose of 1.3ml a day for about a month we couldn't understand how it was even doing anything for her since you go with the child's weight. She is now 24lbs. But obviously that one dosage of 1.3ml was doing something because not long after we took her off of it her bumpy started to show again. So this is a mystery to us and even the doctors. Unless the bumpy was just going to slowly creep up on us, again--not sure.

My notes: "bumpy" slowly starting to swell, no color to it, still flesh colored. Started Monday March 14th propanolol 1.3ml at 8pm. Saw no problems with starting the medication again. Bumpy swollen to a little larger than a penny.

Day one

Today will be day ONE of NO propanolol for Alexis. For the past month or so she has only been doing one dose per day. Now today I am not going to give her any and see how she does. So far we have seen no side effects as far as her "bumpy" goes. But I have seen a few changes in her personality and mood when I started weaning her off the propanolol. Just a bit of fussiness and I've noticed she has been messing with her hands. She rubs at them but I don't know if it's a "weaning" off of propanolol thing or if it's an age thing. Because I have noticed that she doesn't like anything being on her hands. I'll be back to update when I can.

We've come a long way: