Doctors are useless!!! Go with your instinct!...and compression treatment? - Vascular Birthmarks Foundation Forum
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  #1  
Old 09-04-2013, 07:33 AM
Nasha Nasha is offline
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Default Doctors are useless!!! Go with your instinct!...and compression treatment?

Back story... My 11 month old girl was born with a small hemangioma on the right side of her chest near her shoulder...( people actually said it was a result of them whipping her out of me so quickly via c section, I hope that's not true, it sounds a bit far fetched).

Within a month it had doubled in side, by 3 months it was roughly the side of a tennis ball and had started to swell a little. It then ulcerated.

I took her to numerous doctors who told me to leave it alone, keep it covered and it will sort itself out. The ulceration sat right underneathe her little chubby cheek/chin so she was forever rubbing it and getting it stuck to her skin with the dried blood. We kept it covered for a week but every time I changed the dressing it would bleed quite a bit. She was so irritable and didnt sleep much at all.
I took her to yet another doctor and informed them that her birthmark had ulcerated and I needed someone to help me, to tell me how to help her...my husband and I were at our wits end.

The last doctor we went to took a look at the birthmark and said " oh wow, that Is a big one isn't it!" And then proceded to fob us off with " they usually go by the times the kid is 5, just keep the ulceration covered'...that was it, no more help. I was so angry. No one would help me!

I went home and sobbed. My little girl was in so much pain with it, she cried constantly, never slept and was constantly trying to rip the dressing off to scratch it. I ended up taping socks to her hands in the night as she would just tear the mittens off.
It was the middle of summer and her birthmark had become even bigger, was ulcerated in 2 places and was always red hot to touch.Whenever she lay down it would press on her cheek...which meant even less sleep as no matter how cold we kept her room, she was always hot.

By 4 months old we were done with doctors. After another horrendous night, we took her up to the emergency department at the hospital and told them we weren't leaving until someone helped us.
7 hours later we were finally seen. Professional number 1 told us 'he would have to get a second opinion as to how to go about things'. Number 2 came, had a look, went away and we never saw him again. Number 3 had a look, took some photos, said he was going to call his boss and never came back. Number 4 who was apparently very high up came and had a look, exclaimed that it was the biggest he'd ever seen and said he would have to ring a specialist hospital as he's never seen one quite that large before. As he did this, he called 4 other members of staff in to have a look, and each time I answered the same questions, let them prod and poke her.

Everyone stood around looking, me and my husband looked at each other and realised they didn't have a bloody clue what to do.
Baby had had enough, she was screaming and shouting and I had ran out of baby formula as I had not intended on being up there for 11 hours!
They put a dressing on her birthmark and told us we needed to keep it moist so we had to squirt a liquid onto it every couple of hours through a tube that hung down her back.


At 8pm that night a specialist came to see us and told us that we would have to stay the night as he had spoken on the phone with the royal childrens hospital down in brisbane and they wanted to give her a dose of propanolol.This can cause low blood pressure in some children so they needed to observe her.

14 hours and one very traumatic night later we were free to leave, with our referral to royal children's brisbane.


1 week later we went to the children's hospital to see our specialist.

By this point her birthmark had grown even bigger and her ulcerations had become even worse.
More of the same...small room with lots of people crowded into it cramming their necks to try and get a look at her birthmark and taking photos.

Head honcho guy talked over us, said he'd seen far worse,told us to start her on 3 doses a day of propranolol and gave us some dressings for her ulceration. We were out of the door within 20 minutes. Over to the wound nurse were she told us were should put a silicone dressing over her ulcerations and then cover it with your usual dressings...and to change it every day.


This made no sense to me.


Surely you want a wound to have fresh air, heal and scab over?

I asked them this and they said no, it needed to be kept moist, everyone said the same thing...

I still didnt understand, how was it supposed to heal if I keep putting silicone dressings on it to keep it moist?


2 months later, 70+dressing changes were she screamed every single time I took the dressing off because it had stuck with blood and dried and it hadn't healed in the slightest. In fact it was bigger...as was her birthmark. I would leave the dressings off after I had bathed her, then once it had dried out a little and stopped bleeding I would put betadine on which made her scream as it stung..then the dressing went on....and every time I took the dressing off, no matter how many anti adhesive wipes I used, she'd scream because the dressings stuck like glue ( I suppose they had to as she would rip the off otherwise). Speaking of which, she did once.....I went in to her cot one night to settle her back down and there was blood everywhere, she had somehow managed to rip the whole thing off and had been scratching at her ulceration.

Bear with me, I have a point.


Trying to put the dressings on a now 6 month old is near bloody impossible unless she is asleep...which she never did...she cried, I cried, sooo many times.

I emailed and rang the wound nurse and specialist countless times , each time asking if there was another way, could i try leaving the dressings off if i watch her 24/7 etc...and they always said the same thing....continue with the dressings...it needs to be kept moist.

Another 2 months went by and her ulceration was even bigger, she had had an open wound on her for 5 months now, dressings on and t shirts every day and socks on her hands every night in 38+ degree temperature for 5 months and nothing was helping.


One night I said to hubby, I have had enough, that's it. I broke down. I thought sod Them. I'm trying it my way. The next day I took her dressing off and let it dry out. I watched her like a hawk and still kept the socks on her hands morning noon and night.

2 long weeks later her ulceration had closed over completely.

Seriously.

In 2 weeks.

Completely healed over, new skin grown. It looks like scar tissue and will probably be with her for life but it healed.

No more dressing changes, no more screaming in pain, no more blood.


I.was.furious.

I rang the specialist back up and told them what ad happened and they said " oh that's fantastic news, if it ulcerates again then you can try leaving the dressings off and just put a little Vaseline on it".

I was floored. I asked her why the hell no one had told me I could leave the dressings off, why had I been told no when I asked, when I had told them its what I thought would work....she fobbed me off and said the dressings are what work for most and that is the advice they are supposed to give.

Another 3 months on and her birthmark is still getting bigger, not spreading, just swelling, it's ulcerated twice more and each time I have not put dressings on, just let it dry out as much as possibly and kept her hands away from it, and each time it has healed in a matter of weeks.



My little girl is angry. She had a really rough first 6 months of her life because of what she went through, and if I had just listened to my instincts when it first ulcerated at 2/12 months she would never have had to go through what she did.

She is a really difficult child now. It had affected her massively.

The propranolol didnt seem to work. She was on 3 doses a day of 1.5 mls of the double strength stuff for 7 months and it made no difference, her birthmark still grew rapidly. It's now the size of a small melon, in depth too, with the swelling, it restricts the movement in one of her arms as she can't reach her mouth with that hand because its so bulky it gets in the way.

We decided to stop with the propranolol as she hasn't slept for more than 20 minute increments in 7 months. I'm a walking zombie. Only just stopped it so will let you know how we go.( one of the side effects is sleep disturbances).


My point of all this is.....sometimes, not often, but sometimes the doctors,specialists and professionals get it wrong. Trust your instincts. It may save you and your loved one a world of pain.


They now want to try compression treatment. Vacuum pack her whole birthmark for a week,, walk around attached to a battery pack I have to wear...so we can't be more than a meter apart...for a week...

Basically squish it for a week and see what happens...

I really don't know what to do...has any else had any success with compression treatment?

Last edited by Nasha : 09-04-2013 at 07:38 AM. Reason: Added about sleep
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  #2  
Old 09-04-2013, 02:51 PM
missy missy is offline
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Hi and welcome!

What an ordeal. I can't even think of words to say ... oh.my.god.

Never heard of a hemangioma being treated with compression. Other vascular malformations, yes. But never heard of treating a hemangioma that way.

Where are you? We really need to get you connected with a specialist somewhere. From your writing, I would think Europe. Is it possible for you to travel? If so, where?

Quote:
They now want to try compression treatment. Vacuum pack her whole birthmark for a week,, walk around attached to a battery pack I have to wear...so we can't be more than a meter apart...for a week...
Really? I think I would have to tell them that she's not a hunk of cheese. Who can be no more than a meter apart for a week?

Mind is swimming over here. Write back quickly.

Also, copy and paste your WHOLE story there and go to http://birthmark.org/experts.php and send it to Dr. Levitin.

Missy
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  #3  
Old 09-04-2013, 10:38 PM
Nasha Nasha is offline
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We are in Australia, queensland...and yeah I will do thanks. I tried googling when they said about compression treatment but could never find anything about it, anywhere!
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  #4  
Old 09-05-2013, 03:25 AM
smurph smurph is offline
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I am speechless. That is so terrible and I'm so sorry that you and your daughter have been through this. My daughter had an ulceration on her lip hemangioma as an infant and was inconsolable for a long time. I cannot imagine how difficult your journey has been and how FRUSTRATING!!! I agree with Missy- I would send your experience to Dr. Levitin and he will give you some sound advice. You may also want to attach a photo if you can. Please keep in touch and let us know how you are doing. My heart goes out to you!
Shannon
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  #5  
Old 09-05-2013, 03:32 AM
missy missy is offline
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Can you go to NZ? My suggestion would be to see a doctor named Swee Tan there. I'll get his contact info if you can go. I think there is a doctor in Australia named David Lord. Which would be better?

Missy
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  #6  
Old 09-05-2013, 01:50 PM
missy missy is offline
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Try one of these:

Dr David Lord
Radiology Department
Vascular Birthmarks Program
Childrens Hospital Westmead
Locked Bag 4001
Westmead NSW 2145
Sydney Australia
http://www.chw.edu.au/site/directory...birthmarks.htm

or


Swee T Tan MB BS FRACS PhD
Wellington Regional Plastic, Maxillofacial & Burns Unit
Centre for the Study & Treatment of Vascular Birthmarks
Hutt Valley DHB
Private Bag 31-907, Lower Hutt
New Zealand
Ph +64 4 570 9067
Fax +64 4 570 9510
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  #7  
Old 09-07-2013, 01:22 AM
kaykay kaykay is offline
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wow. i don't know what to say. please do check out Missy's links. this is a great site for networking. i hope you can get some help for your baby and yourself as well.

with my birthmark, my lip in particular, when it cracks badly i just use lip balm or vaseline when i am home. it takes time to heal but its the best thing. same with the pimples. alittle savlon and sometimes just using my face mositurizer to make sure the scab doesn't dry out too much and bleed

good luck ! just try to hang in there. something will work out
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