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  #1  
Old 04-29-2009, 10:51 PM
SandyRam SandyRam is offline
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Unhappy advice please for baby with 20+ hemangiomas

hi,
I would be grateful if anyone can help ease my concerns about my baby son who has 20+ hemangiomas all over his body.

He has just had his second session of treatment - laser treatment plus steroid injections on the larger ones. Although I am glad that he is being treated and observed, I do have a lot of concerns.

Background: My son was born prematurely in January at 32 weeks+3 and is now 13 weeks old (5 and a half weeks corrected age). At birth he had 3 or 4 hemangiomas - we have photographs - although they were really very small and faint, hardly noticeable at the time. As the days passed the marks became darker and more noticeable - and his paediatrician arranged an ultrasound scan of his head and torso, also an MRI scan, when he was 3 weeks old. Nothing abnormal was found.

Since then, we have witnessed aggressive growth of the hemangiomas and many new ones have developed. He now has around 20 situated on his head, chest, neck, arms, legs, groin - they range from tiny little red dots (newer ones) to a larger deeper ones - one of which has a sizeable mass under the skin on his chest, below the raised red area.

I have had to be quite pro-active in getting consultations with specialists here in the UK, and have received conflicting advice, which has meant that I have done a lot of internet research on the subject of hemangiomas - some re-assuring, some worrying.

As I mentioned, my son is having laser treatment and steroid injections at the moment, however I am very anxious about his condition and in particular about the eventual outcome.

Could anyone advise? Anyone out there whose child has had this many?
Specific queries I have include:
1. hemangiomatosis - is there any value in repeating the USS/MRI scans, in light of the rapid growth (both existing and new hemangiomas) we have seen since the first scans? Also, I believe scans are not necessarily conclusive.
2. hemangiomatosis - we have been advised that any internal hemangiomas would make themselves apparent via other symptoms such as organ failure/problems - I'm wondering at what point we can safely assume that everything is ok? How long must we wait and see? How and when can we rule out internal hemangiomas?
3. hemangioma care - my son has one in his nappy area and I am obviously concerned about the risk of ulceration here. I currently use petroleum jelly as a barrier - am I doing the right thing? Is there anything better I could use as a preventative measure? And is it ok to keep using it after laser treatments?

If anyone can help ease my anxiety I would be so grateful - there is so much information out there yet not much advice for multiple hemangiomas, so any help or advice would be so much appreciated.

Thanks in advance
Sandy
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  #2  
Old 04-30-2009, 11:33 PM
nickbar nickbar is offline
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Hemangiomatosis is a concern with multiple h., at what stage did your son have the MRI? Has your son had a platelet count?

Find a product with zinc oxide in it or product similar to aquapher should here in the U.S. Petroleum jelly is typically not recommend because it dries out the area too much. And yes, these products I mention are used after laser tx. as well.

VBF has a Eureopean chapter... you might find physicians listed there that you might consider getting an opinion from.

Also, I highly recommend you contact Dr. Waner, Dr. Fishman from ask the expert list on this website. They can give you a better route of steps to take to make sure your baby is receiving the care necessary.
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  #3  
Old 05-01-2009, 12:06 AM
SandyRam SandyRam is offline
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hi, thanks for your reply.
I will certainly seek the advice of the experts you mentioned. Thanks for the pointers.

His USS and MRI were done at age 2 and 3 weeks respectively (he was born prematurely at 32+3 weeks). At that stage several of his H were visible although they were still fairly flat at that stage. They have grown considerably since the scans, and several new Hs have presented in the weeks since then. He is now 13 weeks +4days.

We have not had a platelet count - this has never been mentioned to us. What is the relevance of this?

Interesting to hear your advice on the petroleum jelly - that is what we were advised to use by our laser nurse! Before that I had been using "Sudocrem" which contains zinc oxide amongst other things - (would that be suitable? - ingredients listed below, including fragrance, citric acid and alcohol...!!) - but we were told not to use that (by our laser nurse) because it is thick and difficult to remove so could aggravate the skin on the H... I do find it is quite drying too, although excellent for nappy rash, sunburn etc, I'm not convinced it's the right thing for a H... what do you think?

15.25% Zinc Oxide
0.39% Benzyl alcohol
1.01% Benzyl Benzoate
0.15% Benzyl Cinnamate
4% Lanolin

Also contains

Purified water
Liquid Paraffin
Waxes
Sodium Benzoate
Linalyl
Acetate
Propylene Glycol
Citric Acid
BHA
Sorbitan Sesquioleate
Lavender fragrance

I have tried researching aquafer for a UK equivalent but nothing so far, I'll keep looking.

Thanks so much for your help, I am so worried and confused about everything.
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  #4  
Old 05-01-2009, 12:45 AM
SandyRam SandyRam is offline
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Cool aquapher

Hi -please could you help by telling me the ingredients of aquapher so I can seek advice from our doctor/pharmacist on a suitable UK equivalent. I assume the fewer ingredients the better (and as high a ZI content as possible?), and to avoid any unnecessary ingredients?
Thanks again.
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  #5  
Old 05-04-2009, 07:16 PM
nickbar nickbar is offline
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I received your email from ask the expert and forwarded it on to the physicians for their opinions. I'll be in touch soon.

Aquaphor: Active Ingredient: Petrolatum

also includes: mineral oil, ceresin, lanolin, panthenol, glycerin, bisabolol.
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  #6  
Old 08-27-2009, 06:43 PM
juliet juliet is offline
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Default my daughter has 14 strewberry birthmarks

hi sandy

i just wanted to post a thread on here to say your not alone sweetie,
my daughter was also born with hemangiomas 14 in total including 2 on her liver,
she was born without them but they appeard shortly after getting redder and bigger as the weeks went on, when she was 3 months old the 2 larger ones ulcerated which was a real hard time for us all esp as she had colic on top of that, but i just wanted to mention a treatment that my daughter has been recieving which is an injection treatment that reduses the size and helps it to go a lot quicker, it all depends on where you live as you dont mention where you are from, this treatment can only be done in one hopital in the uk at james cook university in middlesbrough, but the treatment seemed to work well for my daughter, we only had the one on her face treated as we both felt this was the most important one to treat with her been a little girl, she gets put to sleep at each treatment which happens every 4 weeks,

i hope this had helped i hope to hear from you soon it would be nice to chat to someone who knows what am going through, i am currently pregnant with my second baby and am also worried this baby will have hemangiomas i have my fingers crossed as i would hate to see another baby go through what my daughter went through,

take care love to you all

julie xxxx
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  #7  
Old 08-29-2009, 03:44 AM
Starflower Starflower is offline
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Similar situation over here...my son has 80-100 hemangiomas on his skin (all fairly small 5mm or less) and multiple hemangiomas in his liver. He has not shown any clinical symptoms; he gets checked bi-monthly for tachycardia, heart murmurs and liver enlargement. So far all has been well, and therefore the doctors do not want to treat him at this point.

It is nice not to feel so alone in all of this...

He just turned 3 months and over half of the hemagiomas on his skin are already showing signs of involution, and several have completely disappeared. We have been told that for some involution of hemangiomas occurs faster (usually within the first year) when there are many of them.

Sandy - we were told that it is not hereditary so your second child should be fine. We have a daughter and she does not have any hemangiomas. It seems so random! Have your daughters hemangiomas gone away?
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  #8  
Old 09-08-2009, 08:19 PM
juliet juliet is offline
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hi star flower

i am so sorry to hear your son has hemangiomas also, and so many this seems to becoming a bigger and bigger problam in new babies if only we knew a reason to why?
i am so pleased that your son birthmarks havent ulcerated like my daughters and sandys sons has it is an hurrendus experiance and i keep my fingers crossed that they dont,
its nice to meet so many other people who understand what where all going through, and your reasuring words where great to hear that its not hereditry as this is such a major worry with me been pregnant with my second baby,
my daughter is 2 in october and her birthmrks are starting to change in colour and size the doctors recon they wont go until shes around 7-9 years old and most probably leave some kind of mark behind them but am sure there will be another treatment to help her in the future if she decides too want surgerie
thank you so much for your comments and i am always there to talk if you ever need some one to chat too just e-mail me on shunter@hotmail.co.uk take care love julie xxxx
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  #9  
Old 02-16-2010, 10:34 AM
VickiT VickiT is offline
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Smile I know this is several months old, but had to reply

My daughter was born with hemangiomatosis. We did not know how severe until she was around 6 weeks old. She had over 80 on the outside of her body and her liver was over 50% involved. She was also in congestive heart failure with her heart being enlarged. At that time she was the youngest child in the US to have it. We were sent to a Children's Cancer Clinic in Jackson, MS. The doctors there received permission to start treatment with a drug called Alpha Interferon. We continued to give her injections of this for almost 3 years. This is a very scary thing for parents. I just wanted to send this because it is important that you (parents) do not always fear the worst or do not take it all for granted. My daughter is fully recovered and will be celebrating her 18th birthday in one week. The only scar she has is on her foot. God blessed us and I am hoping that what she went through helped other children and their families.
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