7 week old with extensive haemangiomas on head - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-25-2013, 10:18 PM
Chyde Chyde is offline
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Default 7 week old with extensive haemangiomas on head

Hi, I hope I'm posting this in the correct forum...
I have a 7 week old daughter who has haemangiomas across the left temple, ear, across the back of her head, neck and lymph nodes and today we discovered them in her mouth / throat. (It basically looks like an enormous rash across the left side of her head.) They began growing at about week 2 and have gotten progressively darker red, more extensive and slightly raised. My GP became aware of these at about week 4 when I saw him urgently about reflux / colic as she suffers terribly with gas and vomiting. This week we also discovered that she has jaundice. I wonder if all three are related. We are seeing a paediatric dermatologist tomorrow and I am guessing she will carry out ultrasounds ASAP. However I stumbled across this website and forum when looking for information on haemangiomas. I am hoping that someone may have had a similar experience and can offer some wise words as I am very concerned and thinking the worst. Can these cause brain damage? I blame myself as I am an older mum who suffered with infertility for years.
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Old 07-25-2013, 11:25 PM
missy missy is online now
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Hi and welcome!

I can't really say if your GP will order ultrasounds right away or not. I'm guessing you're in the UK?

But I can say: do NOT blame yourself. There is no evidence that maternal age has anything to do with vascular birthmarks. This is absolutely NOT your fault. No way, no how.

Let us know how the appointment goes! I'm hoping you come away with a treatment plan.

Missy
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Old 07-26-2013, 06:11 PM
Chyde Chyde is offline
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Hi Missy, thanks for the reply. yes, we are in the UK.
Update on the appointment. After spending the whole of last night worrying myself senseless googling about it, as expected baby chloe has segmental haemangiomas. She will need MRI and ECG scans to ascertain whether she has any H internally. Consultant not overly concerned about liver/intestines but will order ultrasound too. The consultant thinks that Chloe has a heart murmur, and surprised it wasn't picked up at birth (same hospital). We have been referred to a cardiologist ASAP. I imagine all appointments will be turned around quickly as the NHS kicks into gear very quickly for this kind of thing. The consultant was concerned about the haemangiomas in Chloe's mouth/palate and asked me to keep a close eye. Usually they would be treated with propanolol but since Chloe nurses and breaths fine we will monitor for now. I am also seeing a leading professor in the field next week in parallel as I have private health insurance. I don't expect the diagnosis or treatment to be different but since I have it, I will use it.
Of course none of this stops me worrying senseless. I've shed so many tears. I guess you sign up to a life time heart break s well as joy when you have children. Luckily Chloe has no idea and is her smiley alert self. I guess it's that that keeps me going.
I would love to hear from other parents or patients who have been through this and come out the other side.

Last edited by Chyde : 07-27-2013 at 08:35 PM.
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Old 07-27-2013, 02:24 PM
missy missy is online now
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Thank you for the update....all that is wonderful news.

Stop that googling! I know you must do your research, but many photos out there are the worst cases.

Other parents will be in soon with advice and hugs.

Missy
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Old 07-31-2013, 02:37 AM
smurph smurph is offline
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Hi there! Glad to hear that you have gone in for an appt and they seem to be checking everything out thoroughly. I understand your worry. I was a worrying maniac for a while! Missy is right-sometimes googling on the internet just makes the worry worse. Every hemangioma is different so what you see on the internet may not apply to your daughter. Try to just focus on your daughter. She is so little and these days go by fast! Try to take it one day at a time and let us know how everything goes!

Shannon
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  #6  
Old 08-14-2013, 05:38 AM
Chyde Chyde is offline
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Update on progress:
I used our private health insurance to get the diagnostic tests done privately. Echocardiogram, ultrasound and MRI sowed that there are no structural issues with Chloe's heart, liver and brain thank goodness. However we now know that there is extensive haemangioma in her neck. I had noticed the swelling in the past couple of weeks. It appears like swollen glands at the moment.
We are due to begin propranolol treatment today.
Yesterday the health insurer said they would not cover any treatment. I think that they will pay for the diagnostic costs thus far but none of the treatment, hospital fees or consultation costs from today forwards. So today will be expensive.
I guess we will try to go back to the NHS but to put it in perspective I have only just received a cardiology apt for next month under the NHS, this is despite the NHS paediatrician thinking that she heard a heart murmur. Are the NHS really going to be able to accommodate weekly BP checks etc.
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Old 08-19-2013, 04:32 PM
Arpschi Arpschi is offline
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Hi there,

sorry because of my bad english, but I want you to take part of my experience. My doughter is 2 years old and she suffers from a hemangioma since her date of birth. The hemangioma was growing very fast for a timeperiode of approximately 2 month until it stagnated. It started growing on the right cheek and spread out across the lower face, the mouth, lips and left cheek. It is plane and not swollen. We started the propranolol treatment after she was 2 Month during a range of 1 Year and 3 month (administered orally every 8 hours). From then on we continuing the treatment with propranolol ointment directly on the affected areas. Since 3 month we paused the treatment. The regression of the hemangioma isn't yet satisfactory. We are now analysing the opportunities of laser treatments in germany. There are some very experienced clinics. I would love to provide you with my experiances.
Kind regards from germany
Sascha
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  #8  
Old 09-25-2013, 05:26 PM
momof3inpa2009 momof3inpa2009 is offline
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I am also an older Mom, and I have also suffered with infertility for years and in fact I still am. I had my daughter when I was 38 and I am now 41, anyway don't ever blame yourself. Trust me I understand where you are coming from. I'm sure we all have said "Did I eat the wrong things?" Or "Did I do something wrong" in our pregnancies but I learned through the years we can't think like that. However I would LOVE for researchers to come up with more information on what does truly cause hemangiomas. I truly am anxious to know. Maybe some day. Anyway feel free to check out my blog and if you need someone to talk to I am here.
__________________
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #9  
Old 10-02-2013, 07:19 AM
blackrose blackrose is offline
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She will need MRI and ECG scans to ascertain whether she has any H internally. Consultant not overly concerned about liver/intestines but will order ultrasound too. The consultant thinks that Chloe has a heart murmur, and surprised it wasn't picked up at birth (same hospital). We have been referred to a cardiologist ASAP. I imagine all appointments will be turned around quickly as the NHS kicks into gear very quickly for this kind of thing. The consultant was concerned about the haemangiomas in Chloe's mouth/palate and asked me to keep a close eye. Usually they would be treated with propanolol but since Chloe nurses and breaths fine we will monitor for now. I am also seeing a leading professor in the field next week in parallel as I have private health insurance. I don't expect the diagnosis or treatment to be different but since I have it, I will use it.
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