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Children's health

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lymphangioma/cystic malformation

6 replies

Catlover1 · 14/08/2018 09:30

Heloo,
Im hoping please that somebody could help that has some experience of the above.
My son was born with a microcyctic lymphangioma on his tongue.
I had a great pregnancy and nothing was ever found on any scans. We noticed it when he was two days old.
He is now 10 weeks old. We have had every blood test under the son done, all came back clear. He had an ultra sound again clear. However, he an MRI which showed up the lympanhioma on his tongue. He is very happy boy and perfectly healthy only for this. It is not causing him any feeding or breathing issues.
Our consultant wants us to have a 'wait and see approach ' he feels our son is doing well 'for now but things could change' However, I'm going out of mind with worry. Worrying about what could potentially be down the road for our son.There isn't much info out there on lymphangioma/cysctic malformation/cystic hydroma ( its called all these 3 names!) Googling it just gives worse case scenarios (no disrespect meant towards anybody what so ever)
so basically is anybody in similar situation/know anything about this??/ Would really love to hear back I'm so worried.

Many many thanks xxx

OP posts:
boble1 · 15/08/2018 11:03

Hi, are you seeing someone who specialises in this field?

I can thoroughly recommend Mary Glover at GOSH.

You can see her privately, I think it costs about £230.

She is known around the world to be the best in the UK regarding this sort of issue.

Maybe Google her?

xx

Catlover1 · 15/08/2018 13:09

Many thanks for your reply
We are booked in to see Ben Hartley next month
Have you experience of lymphangioma ?
Many thanks again x

OP posts:
boble1 · 15/08/2018 16:41

Hi

My daughter had a cavenous hemangioma and we were under the local hospital.

They got a surgeon from East Grinstead to come and take a look and they wanted to inject it with steroids, etc. They went on and on about it.

I took her to Mary Glover for a second opinion and she said not to touch it and it would go. It did.

There is a Facebook group, I'll try to find it for you and there is an American specialist you can contact and show photos to and she ill advise you.

Wishing you well.

xx

boble1 · 15/08/2018 16:45

www.facebook.com/search/top/?q=Hemangioma%20Parents%20Group

The Facebook group is called Hemangioma Parents Group.

The expert is called Linda Rozell-Shannon.

xx

Catlover1 · 16/08/2018 20:44

Many many thanks for taking the time to reply I really appreciate it

OP posts:
boble1 · 17/08/2018 11:41

Hi Catlover1

You're welcome. xx

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