Haemangioma - anyone else?

[lotsofcheese]

DD has a cavernous facial haemangioma, plus one on her chest & another affecting her mouth. She is only 12.5 weeks old (well, 8 really as she was 4 weeks early).

Today we were told she will be treated with Propranolol & will need admitted to hospital for 2-3 days for this.

Has anyone else been through this? Was the treatment successful? Did your child have side-effects? Or have other treatments eg laser, surgery?

My experience isn't the same but one of my twins had one of these on his arm. It appeared at about 2 weeks old and it was quite raised and about 3 cms across in a sort of oval shape. It was very dark red and got more red to start with. Bt the time he was two it had almost completely disappeared and now that he's six you can hardly even see where it once was. I read that can be more common in twins but I have no idea what caused it. He was only one week early. I was amazed that such a big lump could disappear though. I really hope your dd's fades in time too.
Not sure I have helped it is just my experience.

Hi.

The 9m old I care for has bilateral occipital ones.

Hers started to grow at 2m and within a month she had no head movement as they had swollen/grown internally.

She was started on Propranolol at 2.5m and even the half dosage for a week at the beginning showed a reduction.

We were monitored with 30min bp readings for 4 hrs post half dose in week 1 and full dose in week 2 and she was on weekly bp but that stopped at 6m and now she is weighed and has bp done at the monthly clinic meeting and gets her new updated prescription.

She continues to take it and last month due to a growth spurt one side grew a bit as the dose was too low and now it is reducing again.

She has had no side effects, I have made it an exciting thing to have her syringes and she lies down and takes it tho sometimes it is a case of restrain and administer.

I have kept a little notebook and we sign it as she has different people around her ie grandparents, Dad, temp nanny and me, the book ensures she gets the medicine as missing or getting an additional dose can have issues.

Her consultant believes she will be on it until 18m given hers grew again at 8m when most have stopped growing.

She is at C&W in London.

Thanks very much for your reply, it's good to hear from someone who has experience of this.

Can I ask how many times a day the propranolol is given? And does it need to be kept in a fridge? I'm just trying to think of practicalities.

We're just waiting to hear from the hospital with a date for her to go in. I'm not looking forward to her being in hospital again - she was a month early & had time in scbu so I had to leave her in hospital. I have a 4 year old DS so will have to juggle that too.

Ok.

No it doesn't need to be in the fridge and I have bottles in her loft bedroom, the kitchen, her overnite and nappy bag.

She has it 3 times a day, initially close to a feed but now thru the day no closer than 3 hours between doses.

We made it fun but at 9m I sometimes have to be firm and just give it whilst holding her still.

Make sure the doctor gives you a week more than you need ie 35 days not 28 if on a 4weekly review because sometimes they need to change appts.

We stayed in the clinic for the 3 hours of 30minute bp monitoring for the I tail half dose which we did for a week and again for a ful dose the week after, it was then weekly bp checks then fortnightly and now is just at clinic each month.

Hers didn't grow for 10weeks and at 8m it grew as she had grown quickly and her dose was too low but she is a toughie ;) we are now in theory at clinic alternate months but I will be calling with her weight on the alternate month as a precaution.

They usually stop growing around 8m and baby is on meds for 12m and then weaned off.

She had chilly hands and feet anyway but no noticeable side effects except the reduction in hue and size :)

Thanks so much for sharing that helpful information - especially about the medication. Had read about low blood sugars & was worried that I'd be back to night feeds again to give the propranolol & make sure her sugar stayed up - so that's good to know all the medication can be given in waking hours.

And it's good to know the treament worked fast for you. My DD's is growing so fast & is now disfiguring as it's right on her face.

Thank you again.

The first month we were told to give it every 6-8hrs so had to reintroduce a 11:30pm dream feed, but she didn't want to eat and it gave her a very unsettled night as she really slept thru from day 20. I said we had to rejig it and the cardio consultant said every 4 hrs was fine.

For her after 2hrs of having the propranolol her bp is back at it's normal reading so we can give it after 3 hrs which works well.

She has 1st around 9-10am, 2nd at 4pm ish and 3rd at 8:30-9pm.

Forgot to say she will need to be as still as poss for a ECG trace (i feed DC and they do traces until they get a couple of good consistent ones and a blood test and she will be referred to a cardiac clinic where they will do an echo and another trace, we started the meds before the cardio but after the ECG as that is the policy as long as the ECG and bloods come back ok. She has a follow up cardio appt after 6-8months.