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-   -   Does anyone know much about Tufted Angioma and KHE? (http://birthmark.org/board/showthread.php?t=3654)

Gembea 01-13-2010 09:44 AM

Does anyone know much about Tufted Angioma and KHE?
 
Hi

My daughter was born with a large size lump haemangioma on her left elbow/arm. She is now 4 weeks old and had biopsy done twice, the results shows she has tufted angioma and bits of KHE so can someone tell me more info about it and anyone who has experienced it.

She is currently progressing well, taking blood tests weekly to check her platelets level, the haemangioma is not getting any bigger and the colour is changing also the edges is fading to lighter colour.

We are new to this and wondering about the treatments how it can affect her. Hopefully someone can tell me more info about it....

Thanks

missy 01-13-2010 11:30 AM

Where are you located and what treatments have been offered so far? If they are just checking platelet levels and doing biopsies, that shouldn't affect her at all.

And welcome! Glad you stopped by!

Missy

Gembea 01-13-2010 07:01 PM

I'm in Sydney. We are awaiting till next week to see the Specialist dr to find out more. So far have been told that she will only need treatment if the blood tests shows her platelets level drops or any changes to the angioma on her arm.
Im aware that it is a rare case but was wondering if there is anyone who has experienced it and how they manage it....
Thanks Missy for your welcome greeting... this is a great Foundation to help families to stay in contact around the world... :)

P.S. she has had twice biopsy... the results shows that both of angioma and Kaposiform Haemangioendothermia (KHE)........

hdormer 01-22-2010 01:18 PM

Khe
 
hi,
i saw your post. my son was diagnosed with KHE just a few weeks after he was born. lucked out and live near boston so saw one of the experts on these things. my son's KHE has never had any platelet trapping issues so that has been a blessing. i'm told they usually do. he has been treated however. our doctors felt it was best to treat it now to avoid any pain issues as he grows older. he has been on steroids and now is on chemotherapy called vincristine. the khe has improved over time. he's almost 9 months old now. he seems to have tolerated both treatments fairly well. i think he will be having another MRI soon to see the internal progress. it's kind of a strange diagnosis because so few people have heard of it or treated it. it can be confusing and scary. i know how you feel. best of luck to you. feel free to contact me anytime. my email is dormerfamily@verizon.net.

missy 01-23-2010 12:13 AM

Do you have any resources to link? I'd love to try to read up or educate myself on this and I'm sure other parents would as well. If you have some handy that you know are reliable, I'd love it if you'd share!

Drop by often and give us updates on your son!

Missy

cheryl&brooke 02-01-2010 01:00 PM

Hi

Just saw your post, my daughter Brooke was born with a very large KHE down her throat and accross her face. She had very bad platlet trapping and had to go on a ventilator for a while due to the KHE restricting her breathing. We started steriod treatment at 2 days old and when her KHE continuted to grow rapidly we moved onto to Vincristince treatment with steriod.

We were very lucky Brooke managed to deal with the treatments very well. She received weekly vincristince treatments for over 9 months and she is 2 now we are still on 3 daily doses of steriod. It took well over 12months for us to get her growth under control.

Please let me know if you would like to chat I can send you some pictures if it helps. Happy to give you my email address and we can talk some more.

Hope your daughters treatment is going well

Cheryl & Brooke

Gembea 02-02-2010 09:27 PM

1 Attachment(s)
Hi
Thanks Cheryl and Dormer family for replying to my post. I was thinking "gee no one has replied yet" after I posted it up while ago and I realise that it is pretty rare case. Thank you for your input on how your children have progressed.

Zali's KHE on her arm has not grown or shrunk yet and her platelets level is stable so the tumour is sitting quietly for the moment. She is now 7 weeks old and I dont see her in pain yet as the doctors says there are reports that it can be painful. Its hard to tell bec Zali is only little!!

Tomorrow she will begin her chemotherapy treatment, Vincristine although needs surgery for central line. So its all new to me about the treatment and i wonder what are the side effects for your child? Dr told me its pretty safe chemo and minor side effects like hair loss, constipation, nerve effects to the eye, voice box and throat (cough spasms when drinking). Dr didnt say anything about steriods.

She will be taking it 20ml a week for 12 weeks then afterwards fortnightly till tumour goes away. So we hope that it will be sucessful and for me to hope for your child as well. Zali's doctor was pretty positive about it and says can be treated. The information on the internet can be so scary to read negative sides about KHE. Also her Dr says there are only 10 cases in Australia!

Thank you for getting in touch and here is my email address gemmajw@hotmail.com...... anytime contact me and it will be great to get feedback on our kids progress.

I would like to attach photo of Zali and her arm but I dont know how to do it on this post????

TC and all the best

Gemma and Zali :)

missy 02-02-2010 11:29 PM

Beautiful baby!!

It is hard to wait... we have a pretty dedicated group that comes by and posts, but I know how hard it is to wait that long for a response. Thanks for hanging in there!

Missy

alexisuk 08-19-2010 05:42 AM

hello there, my son is 13 months old and has finally had the vm on his arm diognosed as a tufted angioma, we are on London and I cannot find anyone else with one of these, the doctors say his bloods are ok but he only had them tested once, over 6 months ago and his arm often causes him pain.
can anyone help explain this to me, I cannot get any information... his consultant has not told me much and he only gets an appointment once every 6 months. I hope to find someone here who may be able to tell me more about this tumor
many thanks
alexis

nickbar 08-19-2010 11:54 PM

Hi Alexis,

Was a biopsy done to confirm tufted angioma? Does it feel leathery? The use of compression stockings, wraps and elevating the arm is often used with VM to minimize pain. Are you using any type of anti-inflammation medication? I would check with his doctor on ibuprofen type medications to help reduce the inflammation. Swimming regularly (daily) is also recommended for most patients with venous malformations. It is important to make sure there is not a blood clot. Pain can also occur if the malformation is located adjacent to a nerve.

I would encourage you to contact our expert on the KHE/TA on the main page of the website.


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