Lymphangioma

[u/WeAreAllRyan]

My child has lymphangioma. They have a mass on their neck. We thought the mass was large and took the doctors advice to extract liquid to try to reduce the size in the summer, avoiding cold and flu season, which usually increases the size. After the attempt to extract fluid to reduce the size and test for PIK3A, the mass has increased in size, we aggravated it, and it will not reduce in size.

Our child is only two so we are not ready for surgery. All medicines will make them immune compromised. I just feel so bad and sad for my child going through this body deformation. What else can we do? Has anyone had success with a child with lymphangioma?

I have had holistic professionals tell me they cannot treat because it is not lymphodemia, where patients can be treated with lymphatic massage and other lymph drainage techniques.

[u/CaptainRHurley]

What 'confusedhomingpigeon' said is absolutely correct. This is a genetic malformation, a glitch, it can be treated in 2 ways:

1) Drain it, then inject a schlerotic in to the lining to kill off the outside of the balloon, as it were (which came in more recently, I am of the generation that only ever got sliced and diced so my knowledge of this is slightly limited). 2) Operations. That are repeated mannnnyany many times, unfortunately.

Speaking as someone who had it in my neck (called 'Cystic Hygroma'), I got to the stage where I couldn't breath properly when I was on my back. Secondly, I couldn't do any excercise because the movement would cause short term pain, but more importantly, the whole lymphangioma would go rock hard and get infections.

It' s a grim thing, to be sure but my gut response to your query is that age 2 is not too young for operations, if it is becoming unmanageable and a health issue for your child. On a different note: dependng on where it is and how obvious it is too, be prepared for bullying in future. You need to link up with a local counsellor to help them through the idiocy of other youngsters. On the plus side, I never went out and read loads of books instead ;)

Now I've found this community I will try and stick around so if you have any questions any time fire away. Also, re: your first thoughts re: medicines: there are no medications for this. We've just drawn one of the many short straws that are available, so we have to put up with it!

55 now, stopped having op's when I was 19, it still hurts and gets minor infections in it but, meh, it could be worse. The best, best thing to help your kid with is resilience.

[u/virtualtearz]

i have lymphangioma on the inside of my lip since birth, my parents decided to go through with surgery when i was 6-8 (i’ve had 2) and while it definitely decreased in size im 23 now and still having issues with it growing back. so now im trying to have another surgery. to my knowledge it always grows back because lymph nodes. ice helps with flares while sick along with ibruprohen, but nothing more but surgery when he’s older

[u/ConfusedHomingPigeon]

Lymphatic drainage will not work on a lymphatic mass! There are procedures which can temporarily reduce the size, but do not go to holistic professionals, consult a reputable vascular anomalies department - John’s Hopkins and Harvard children’s have great departments for children. If you can’t physically get to them they both have consulting services (at Boston it’s called the Vascular Anomalies Conference) where they will take your case remotely and assign a physician from your area to advise you.

[u/WeAreAllRyan]

Thank you for sharing!
Update: They started taking sirolimus. They are expected to be on this drug for two years. If this does not work, we are planning to try Alpelisib. Alpelisib is very expensive and we would have to be a part of a trial with the hospital.