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Posted by on Jul. 31, 2007 at 12:52 AM
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Hello, my name is Anna. I'm the mother of a one year old little boy. He has cystic hygroma. He should be going very soon to have a sclerosing done. In so many ways I feel that this is all my fault. I know it's not that it's a matter of genetics, but everytime we have to hold him down for an untra sound, or I have to get him up at 3 am so we can go to Children's for more tests, I guess I blame myself  a little more.

I hope that this treatment will be his only one, but it's most likely he'll have to have several more.

In many ways my son and I are lucky, it's not so huge that he can't use his arm at all, it isn't in his neck so there's not danger of suffocation, and he doesn't have anything else wrong with him.

Doesn't feel lucky though.

by on Jul. 31, 2007 at 12:52 AM
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Replies (1-9):
pjj72
by New Member on Jul. 31, 2007 at 2:56 AM
I'm suprised they didn't give you a RX for chloral hydrate so you don't have to hold him down.  My daughter has had MRI's and CT's every 3-4 months for 12 years.  She had her 6th surgery and is expecting her 7th soon.  The scar tissue cause her to have obstructive sleep apnea and now the doctors are considering a permanent trach to stop the apnea that can kill her.  the tumor ended up in her jaw bone and the only way to remove it is to remove the jaw.  is now showing signs of the back of her scull-again.  She hates it and HATES people staring and making fun of her.  Its hard to watch your baby suffer physically and emotionally.  Hopefully you only have one experience and don't become a frequent case that doctors give up on.

Good luck
LorriGarcia
by on Sep. 27, 2007 at 12:34 PM

Hi my name is Lorri and I have a 20 month old daughter named Juliana. At her first immunization is the day I realized that her left side of her face by her ear was swollen. I naturally assumed it was an side effect of her vacinations and rushed her to the hospital. They all had no idea what it was and just assumed it was because she had been sick and it would go away in week or so. Well a week or so came and gone and still the swollen cheek not only not go away but seem to grow. Finally  he suggest a specialist. He told me that is was Cystic Hygroma. SO we continued the processes of ultrasounds and such to find that it wasn't attached to anything, just floating there but intangled in a mass a viens. SO  was surgery was not an option, almost impossible until she gets older. With no hope in sight, I felt as if they given up on her. Though they did say to me that it could go away by itself by the time she is 7....that was my only hope for her. I don't know why it is going away now...maybe she is just going into it or maybe it is REALLY going away. Before when she was little strangers would just stare at her and stare at me like I did something to her, or just ask stupid questions about it. Some would share their stories about cystic hygroma that helped me deal with it.  But now  rarely  anyone asks any questions.

Here are her before and after pics. 




mom2megbry
by New Member on Jan. 20, 2008 at 4:05 PM
Hi! My name is Lisa. I live in Missouri. My son Bryan is almost five. He was born with a LM in his armpit. He's had 2 major surgeries plus many MRIs, ultrasounds, etc. At the moment, Bryan's LM seems stable so we're leaving it alone. Bryan's LM is 90% microcystic so sclerotherapy isn't a good option. We know that we're dealing with this for life.

My prayers and good wishes go out to all of you dealing with this for the first time with your babies. Please know that I'd be happy to listen to anyone who wants to vent about LM, the docs, or the terrors that you are facing.

Lisa
Mommy to Bryan
Kareenah_1
by on Jan. 21, 2008 at 9:52 AM
My little girl Kristjana (krist-yah-nah) will be 10 weeks old tomorrow and has surgery scheduled for April 24th at Childrens Hospital to have her mass removed.  Hers is macrocystic which means it's one big cyst instead of several little ones.  Apparently hers is the best type to have in that it is easiest to remove.  She has been through every test imaginable and is completely normal otherwise. 
~Kareena~
kell1018
by New Member on Jan. 29, 2008 at 10:27 AM
I am 25 weeks pregnant  and already found out that my daughter has a cyst growing on her neck, its already bigger than her head. She also has fetal hydrops which is fluid around her lungs and stomach and her skin is very thick with the fluid retention. I recently had an amnio done and they told on top of that, that my daughter also has turners syndrome. They don't expect her to make it to delivery but every week I go into the doctors office to just listen to her heart beat and every week they tell me that it sounds good, so Im just being optimistic and just pray every day that she makes it to delivery. The doctors have told me that if I can carry her til at least 28 weeks she may have a better chance of life outside of the womb, but I wana carry her long cause I think the longer I carry her the better chance that she has.

For all those whose children are going in for surgery, good luck and hope all goes well.
leemarie1206
by New Member on Feb. 6, 2008 at 1:09 PM
hi my name is lynda.. my 20 month old daughter has LM on the back of her neck.. we found out she had this when she was 6 months old.. i was so scared for her when we found out what it was.. i just wanted it to be gone.. i wanted to have it removed as soon as possible... so when we went to see a surgeon he mentioned sclerotherapy.. at first i didnt like the sound of it.. i thought having it surgically removed would be the best way to get rid of the mass.. so she has an appointment for march 10 for sclerotherapy and i am just wondering if anybody would please share there stories about scheroterapy with me?? has it seemed to help or work?? i was told that after the sclerotherapy my daughter will be very sore and the bump might actually get even bigger before it gets smaller.. i am real nerves about the whole thing.. thank you
Kareenah_1
by on Feb. 6, 2008 at 6:36 PM

Quoting leemarie1206:

hi my name is lynda.. my 20 month old daughter has LM on the back of her neck.. we found out she had this when she was 6 months old.. i was so scared for her when we found out what it was.. i just wanted it to be gone.. i wanted to have it removed as soon as possible... so when we went to see a surgeon he mentioned sclerotherapy.. at first i didnt like the sound of it.. i thought having it surgically removed would be the best way to get rid of the mass.. so she has an appointment for march 10 for sclerotherapy and i am just wondering if anybody would please share there stories about scheroterapy with me?? has it seemed to help or work?? i was told that after the sclerotherapy my daughter will be very sore and the bump might actually get even bigger before it gets smaller.. i am real nerves about the whole thing.. thank you
My daughter Kristjana would've had the sclerotherapy except she is too little for that.  The sclerotherapy is good too though because what they inject into it actually shrivels up the little lymph vessels so that it can't fill with any more, then I don't know what happens to the lymph that is already in there.  Good luck with it though.  Let us know what happens okay?  Take care!
~Kareena~
Kareenah_1
by on Feb. 6, 2008 at 6:40 PM

Quoting kell1018:

I am 25 weeks pregnant  and already found out that my daughter has a cyst growing on her neck, its already bigger than her head. She also has fetal hydrops which is fluid around her lungs and stomach and her skin is very thick with the fluid retention. I recently had an amnio done and they told on top of that, that my daughter also has turners syndrome. They don't expect her to make it to delivery but every week I go into the doctors office to just listen to her heart beat and every week they tell me that it sounds good, so Im just being optimistic and just pray every day that she makes it to delivery. The doctors have told me that if I can carry her til at least 28 weeks she may have a better chance of life outside of the womb, but I wana carry her long cause I think the longer I carry her the better chance that she has.

For all those whose children are going in for surgery, good luck and hope all goes well.
I feel your pain and I am going to pray for you and your baby.  Hang in there!!  
 
leemarie1206
by New Member on Feb. 9, 2008 at 9:49 AM

Quoting Kareenah_1:

My daughter Kristjana would've had the sclerotherapy except she is too little for that.  The sclerotherapy is good too though because what they inject into it actually shrivels up the little lymph vessels so that it can't fill with any more, then I don't know what happens to the lymph that is already in there.  Good luck with it though.  Let us know what happens okay?  Take care!
~Kareena~
thank you for your help.. i will let you know how the sclerotheray works out for my daughter.. good luck to you too.

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