Saturday, August 14, 2010

Hemangioma day 10 update

Madison has been on the Propranolol for 10 days now. The Cardiologist said that any side effects should hopefully be cleared up by day 10 as her body slowly adjusts to the medication. He also said we would see the most drastic change in the hemangioma in the first 48 hours of treatment. I decided to take pictures everyday for the first 10 days so I could more easily see the difference it has made.

This was just before her first dose. The hemangioma is at it's biggest here and she can barely open her left eye enough to see out of it
48 hours later, and after only 6 half doses (the first 3 days she took a half dose then on day 3 we doubled the dose to get her up to a full dose for the remainder of the treatment). She can open her eye!
Day 10. The diameter is still about the same but the puffiness is down so much that it fits into the crease of her eye when she opens it, which actually allows her to open it.

It has also changed from a bright red color to a more pale pinkish blue color. Supposedly it will just continue to fade into a grey blue and then flesh color and flatten out until it's no longer visible.

As for the side effects... let's just say I uttered the words "I hate this medicine" about 10,000 times over the last 10 days. To be honest, it could have been worse, but every unfavorable side effect listed...she has had. Nothing terribly serious or was all listed under "normal side effects" but still not what you want for your 3 month old. I understand now why the Cardiologist said he won't treat hemangiomas except for in the extreme circumstances (such as Madison's). I mean we really didn't have a choice if we wanted her vision to develop so I am thankful for this option but it hasn't been easy!

For starters no one mentioned to us that the number one side effect of Propranolol is INSOMNIA. I found that one out on my own....and after seeing how she was acting so strange after the first dose, I quickly read the entire pamphlet front to back to find out why on earth my baby girl was acting so crazy. At first, my good sleeper (note she had been falling asleep on her own since birth and sleeping 13 hours at night for at least a week before we started the meds) turned into a wired baby that COULD NOT fall asleep no matter how tired she was. Up to this point I think the longest she had ever stayed awake at any given time was maybe 2 hours (and that's generous). After her first dose of meds at 3:30pm she was awake from 4pm-11:30pm and she COULD NOT fall asleep no matter what I tried. She was EXHAUSTED, I was pretty worried at this point because she had only had ONE dose and it was only a half dose. Fortunately she finally crashed and slept till morning but seemed restless, tossing and turning and grunting all night long. The second day she couldn't fall asleep on her own for naps or nighttime and within 2 hours of each dose her blood sugars would tank and she would be sweaty and clammy and fussy and ravenous despite my giving her a full feed with each dose (she had been easily going 3.5-4 hours between feeds before this). So the first 5 days or so it was like she was a newborn again eating every 2-2.5 hours all day and night and had to either be rocked forever so she could get into a deep sleep or have her paci replaced 4,547 times so she could fall asleep and stay asleep. Finally about day 6 she started acting a little more normal with eating and sleeping and started falling asleep more easily, taking longer naps (2-3 hours) and sleeping all night long (7pm-8am with me waking her at 11:30pm and 8am for a dose and full feed).

The hardest part of this has been visibly seeing the signs of her blood sugar dropping. Sometimes I could see her squirming in the middle of the night a few hours after her 11:30pm dose and I would go check on her and she would be drenched in sweat and I would wake her to feed her because I knew her blood sugar was low and she would CHOW DOWN and go back to sleep. I guess she was so tired she didn't wake up despite her bottomed out blood sugar levels. Another, less serious side effect, is that it makes her hands and feet turn blue and they are constantly FREEZING. That hasn't changed over the last 10 days so that may not go away.

She has to take the meds at the same time everyday give or take 30 min in each direction, so we have to wake her up and feed her even if she is DEAD asleep and it breaks my heart to do that since she is having a hard time falling asleep. Sometimes JUST as she is able to finally fall asleep I have to go wake her up and force meds and food down her throat even though she is EXHAUSTED but you gotta do what you gotta do! I keep repeating to myself "it's only temporary" every time, and I could be much worse.

Now that she has adjusted a bit more a typical day for her is:
8am I wake her up and she gets her first full dose and full feed (30min)
9:30-11:00am first nap
11:00am full feed (30 min)
12:30-3:30pm 2nd nap
3:30pm second dose and full feed (30 min)
4:30-5:15pm 3rd nap
6:30pm full feed (30 min)
7:00pm bedtime
11:30pm I wake her for last dose and full feed (30 min)

So she can stretch to 3 hours between feeds after a dose but can go 3.5-4 hours between feeds the further away she gets from her dose. So I can tell she is doing much better with blood sugar levels. Not to mention that she is back to sleeping all night except for when I wake her. It's been 3 days since her blood sugar has visibly dropped to where she shows symptoms so hopefully that is behind us. I just hope it stays that way. Hopefully by my next update I will have long forgotten these first 10 days and she will be just taking it in stride as she has been the past 3 or 4 days. Despite the rough start, I am truly thankful that we have this option, as it is really is the best option available.


Chad and Lindsey Eason said...

Wow Ashley! I had no idea you were dealing with this. Thank God for medicine (even if it DOES have horrible side effects). I hope your beautiful baby girl is all healed and back to normal sleepy self soon! :-)

Michelle said...

I am sooooo very happy to see the meds are working! Those side effects must be hard to go through. Btw, I love her hair! It looks so soft and fluffy!

sarah w. said...

So sorry its been a long 10 days :(. Thats wonderful the meds are working, and she is just so precious!! But I hate its been such a hard process. Even though there is so much to be thankful for, its still really really hard to go through it.

Anonymous said...

Wow...what a difference in just 10 days, that is amazing! I will be praying that the side effects are temporary and she will be sleeping soundly again very soon! It's easy to second guess yourself esp when you are familiar with the medical side too, but you balance it out great. You are a AWESOME mom Ash!!
Miss you girl,
Jaimi B

The Farmers Wife said...

As hard as the meds have been I am so thankful that you guys were able to get this treated for her. Such a little doll!

Holly said...

I'm so glad you posted this...I was JUST thinking about her and wondering how it was going when I read this post! Praise God that it is working so well and that the side effects seem to be lessening. I am so sorry that it was rather rough for the first several days! Will pray that it continues to help & improve!!

Andrew said...

I hope this isnt strange. My daughter is 6 weeks and just got diagnosed with a hamangioma of the left eyelid. I did a google search for photos and yours came up. We are very scared. My husband is in the Air Force and I am scared that the Military doctors dont know what to do but reading your story has given me a list of things to ask them about at her next appt. I was wondering how she is now and if you have noticed anything wrong with her eyelid since. Thank you so so much. my email is or im on facebook at heather musser zehm. I hope we can chat about this since you have been through it.