I have a 13wk baby girl with a large BM from the top of her ribs to her hip on the left hand side of her body,it goes round her back & covers 3/4's of it. Her left thigh,bum cheek, leg & foot are swollen as is her left cheek & ear. I'm so worried, no joy from local hospital & Newcastle are just wanting to moniter her wish makes me uneasy! Really dont know what to do. I've looked for information for weeks now. I think you are an inspiration to all mums! Any help or advise from you would be great!
You are an amazing beautiful young woman!!! I admire all you're doing to raise awareness for lymphatic malformations. My 5 year old daughter was diagnosed at age 2 with a vascular lymphatic malformation in her cheek. We are fortunate that her malformation is manageable with antibiotics and we only have to deal with periodic flareups. Best of luck to you!!
i had cystic hygroma in my kneck when i was an infant i had surgery and now all thats left is a lump on my kneck and a scar that goes from the back of my kneck to my bellybutton im totaly fine now but i dont kno much abour it at all my parents dont like to talk about it so i jst research it on my own
Thats awful-you shouldn't be discriminated against because of your age. I bet your a great mum to kasey!! I don't know of anybody who's been treated at the hospital in Birmingham but you could try contacting James Cook and some travel expenses may be paid for you if you need to.
is your treatment working? awh thank u my girls are my world i have 2 my 1st pregnancy was straight foward kasey was my second! i went back to a different gp today who seemed abit more understanding but agreed not to rush to surgery because of nerve damage etc... thank you for messaging me back its nice to speak to some1 who nos 1st hand what im going through :)
your EXTREMELY welcome! I know about how hard it was when I didn't have anyone but I've met a load of people on the internet and its alot easier :) Thats great news about the new GP and a great thing theyre not going to rush surgery. Add me on facebook if you have it-my name on there is Jessica Hopper
no i didnt think it would i had so many scans when i was pregnant mri and ultrasounds and im so angry that they didnt say she cud get more did you ever get nemore is ur treatment workin and do you no ne1 whose been treated at the birminghams chilrens hospital cuz the specialist there is really nasty to me and because im 22 talks to me like im stupid i feel lied to my daughter was well look after wen i was expecting but now i feel abandoned i just keep cryin.
hey jerbilou i have a daughter whose 13 months old she has a cystichygroma just under neath her jaw on the left side i am reallyworried afyter reading things on the net can u keep gettin more?did they find urs by ultrasound wen ur mum was [pregnant the docs keep sayin my daughters is so small it will resolve itsself i do not believe this! u are a really pretty girl and wot ur doin is incredible
Of what I know it is possible to get more than one LM or CH. I didn't know that I had mine until I was 6/8 years old after I had a nasty fall off my bike. Doctors thought that it was fatty lumps however when they tried to operate they found that it was something more. At the age of 16 I then went back to medical treatment.I'm now at James Cook University recieving bleomycin injections. I don't believe that it will resolve itself.
if you go and look at my other videos I have done without music in the background...it was my first video and I was nervous...hence playing some music.
I am 37 years old living a typical life with Lymphatic Malformation/Cytic Hygroma. I am married, have healthy children and a career. Last year I started a support group on Myspace and Facebook for this condition. We are now 158 and 325 strong! I had never met another or known of another living with this until I started this group. Thanks for being inspirational gerbi. Click my highlighted name and you will find links to both groups.
I have an 8 month old daughter who was diagnosed with a lymphangioma on her butt cheek. She underwent surgery at 3 months and they removed the lump. However, her left side will always be larger than her right and she runds the risk of lyphangiomas recurring. I want to support my daughter as she grows and your insight on what's it's like to be a teenage girl living with lymphatic malformations was helpful. Thank you!
Eu tenho uma filha com tres anos de idade e faço tratamento com o OK-432 (Picibanil), fizemos tres aplicações até hoje e o resultado está sendo ótimo. Procure saber mais em seu país a respeito, pois essa vacina é ótima, apesar de ainda não estar aprovada em nossos países. A redução até agora foi de +- 95% do tumor. Vamos fazer uma corrente para que esse remédio seja aprovado pelos governos. Boa sorte e um abraço.
I just literally googled your comment and hope that I've got this right. I hope that your son is well and he's not finding treatment too stressful. I wish you luck trying to legalise your treatment for him :) xx
Hey thanks for putting the word out on this, I've met a guy via a video on youtube about Cystic Hygromas, he linked me to your video. We both have them in our necks. treatment via injections is hard to come by in Australia at the moment
We are from a small country town called charters towers its out west from townsville. we travel almost weekly 1 and a half hours for her to be monitored at the hospital and every 3 months to a pead and then every 6 months we travel 16 long hours to brisbane for her to see the specialist. we have 2 other daughters and its been EXTREMELY hard for us all. she like you has constant pain and must make sure she dosent get any sharp knocks or bumps to it as it increases her risk of infection.
My little girl is almost 4 & she has a combined venous-lymphatic malformation as well as factor V leiden syndrome. Her mass looks much like yours except that hers has a blusih tinge due to the blood vessels tangled around it. She has been given no hope for the future & must remain in full body compression stockings due to the fact that its in her leg & pelvis & if the swelling becomes to much it seeps through the skin & ulcerates. I worry so much as its very rapid growing
I'm so sorry to hear about your daughter being given no hope. Where abouts in Australia are you from? Does she have regular checkups? It's stories like these that make me want to fight for this to become a better known about condition.
i listened to your video and i don't know why but it touched me! i'd like to know more like: does it hurt?, what do you have to go through everyday if it does? what kind of treatments do you have for this? and also, more info on how to help for the researchs!
i think you're a very strong person to have gone through this in your life and still go on with it! some people have give up for way less.
Wow! Thank you for replying so fast I didn't expect anyone to!! It does hurt, its something I've just learnt to live with since I was little though. Its just like twinging pains really and sometimes like severe pins and needles. There are alot of treatments out there like surgery,sclreotherapy but mine is bleomycin. Add the myspace and support me!
I have a 13wk baby girl with a large BM from the top of her ribs to her hip on the left hand side of her body,it goes round her back & covers 3/4's of it. Her left thigh,bum cheek, leg & foot are swollen as is her left cheek & ear. I'm so worried, no joy from local hospital & Newcastle are just wanting to moniter her wish makes me uneasy! Really dont know what to do. I've looked for information for weeks now. I think you are an inspiration to all mums! Any help or advise from you would be great!
jomol22 7 months ago
Ur amazing:-)
ricosalb 7 months ago
Comment removed
Clopez729 9 months ago
You are an amazing beautiful young woman!!! I admire all you're doing to raise awareness for lymphatic malformations. My 5 year old daughter was diagnosed at age 2 with a vascular lymphatic malformation in her cheek. We are fortunate that her malformation is manageable with antibiotics and we only have to deal with periodic flareups. Best of luck to you!!
Clopez729 9 months ago
Hey your a strong person I hope things are getting better for you :)
DraconianSilenced 1 year ago
watch my video! i have lymphangioma on my face and i post a before and after =) its amazing
alinitaag 2 years ago
i had cystic hygroma in my kneck when i was an infant i had surgery and now all thats left is a lump on my kneck and a scar that goes from the back of my kneck to my bellybutton im totaly fine now but i dont kno much abour it at all my parents dont like to talk about it so i jst research it on my own
LLLLL757 2 years ago
Thats awful-you shouldn't be discriminated against because of your age. I bet your a great mum to kasey!! I don't know of anybody who's been treated at the hospital in Birmingham but you could try contacting James Cook and some travel expenses may be paid for you if you need to.
JerbiLou 2 years ago
is your treatment working? awh thank u my girls are my world i have 2 my 1st pregnancy was straight foward kasey was my second! i went back to a different gp today who seemed abit more understanding but agreed not to rush to surgery because of nerve damage etc... thank you for messaging me back its nice to speak to some1 who nos 1st hand what im going through :)
mumofkasey 2 years ago
your EXTREMELY welcome! I know about how hard it was when I didn't have anyone but I've met a load of people on the internet and its alot easier :) Thats great news about the new GP and a great thing theyre not going to rush surgery. Add me on facebook if you have it-my name on there is Jessica Hopper
JerbiLou 2 years ago
no i didnt think it would i had so many scans when i was pregnant mri and ultrasounds and im so angry that they didnt say she cud get more did you ever get nemore is ur treatment workin and do you no ne1 whose been treated at the birminghams chilrens hospital cuz the specialist there is really nasty to me and because im 22 talks to me like im stupid i feel lied to my daughter was well look after wen i was expecting but now i feel abandoned i just keep cryin.
mumofkasey 2 years ago
hey jerbilou i have a daughter whose 13 months old she has a cystichygroma just under neath her jaw on the left side i am reallyworried afyter reading things on the net can u keep gettin more?did they find urs by ultrasound wen ur mum was [pregnant the docs keep sayin my daughters is so small it will resolve itsself i do not believe this! u are a really pretty girl and wot ur doin is incredible
mumofkasey 2 years ago
Hi :)
Of what I know it is possible to get more than one LM or CH. I didn't know that I had mine until I was 6/8 years old after I had a nasty fall off my bike. Doctors thought that it was fatty lumps however when they tried to operate they found that it was something more. At the age of 16 I then went back to medical treatment.I'm now at James Cook University recieving bleomycin injections. I don't believe that it will resolve itself.
JerbiLou 2 years ago
if you go and look at my other videos I have done without music in the background...it was my first video and I was nervous...hence playing some music.
JerbiLou 2 years ago
I am 37 years old living a typical life with Lymphatic Malformation/Cytic Hygroma. I am married, have healthy children and a career. Last year I started a support group on Myspace and Facebook for this condition. We are now 158 and 325 strong! I had never met another or known of another living with this until I started this group. Thanks for being inspirational gerbi. Click my highlighted name and you will find links to both groups.
CysticHygroma 2 years ago
I have an 8 month old daughter who was diagnosed with a lymphangioma on her butt cheek. She underwent surgery at 3 months and they removed the lump. However, her left side will always be larger than her right and she runds the risk of lyphangiomas recurring. I want to support my daughter as she grows and your insight on what's it's like to be a teenage girl living with lymphatic malformations was helpful. Thank you!
shh120 3 years ago
Eu tenho uma filha com tres anos de idade e faço tratamento com o OK-432 (Picibanil), fizemos tres aplicações até hoje e o resultado está sendo ótimo. Procure saber mais em seu país a respeito, pois essa vacina é ótima, apesar de ainda não estar aprovada em nossos países. A redução até agora foi de +- 95% do tumor. Vamos fazer uma corrente para que esse remédio seja aprovado pelos governos. Boa sorte e um abraço.
malutass 2 years ago
Hi
I just literally googled your comment and hope that I've got this right. I hope that your son is well and he's not finding treatment too stressful. I wish you luck trying to legalise your treatment for him :) xx
JerbiLou 2 years ago
Hey thanks for putting the word out on this, I've met a guy via a video on youtube about Cystic Hygromas, he linked me to your video. We both have them in our necks. treatment via injections is hard to come by in Australia at the moment
greenfoam 3 years ago
hello jerbi,
I hope you have received my message?!
I was also born with a lymphatic malformation and had undergone 25 surgeries...
In the last five years I supported up to 30 patients/kids with lymphatic malformations all around europe.
please feel free to contact me!
You are a amazing and beautiful woman.
All the best for you!
marsmog 3 years ago
you are beautiful
pedrowasabi 3 years ago
We are from a small country town called charters towers its out west from townsville. we travel almost weekly 1 and a half hours for her to be monitored at the hospital and every 3 months to a pead and then every 6 months we travel 16 long hours to brisbane for her to see the specialist. we have 2 other daughters and its been EXTREMELY hard for us all. she like you has constant pain and must make sure she dosent get any sharp knocks or bumps to it as it increases her risk of infection.
mum040507 3 years ago
My little girl is almost 4 & she has a combined venous-lymphatic malformation as well as factor V leiden syndrome. Her mass looks much like yours except that hers has a blusih tinge due to the blood vessels tangled around it. She has been given no hope for the future & must remain in full body compression stockings due to the fact that its in her leg & pelvis & if the swelling becomes to much it seeps through the skin & ulcerates. I worry so much as its very rapid growing
mum040507 3 years ago
I'm so sorry to hear about your daughter being given no hope. Where abouts in Australia are you from? Does she have regular checkups? It's stories like these that make me want to fight for this to become a better known about condition.
JerbiLou 3 years ago
My 2 year old has this, I'm really nervous for her.
sunclov 3 years ago
regardless, I still have the hots for you.
reasons:
bad news bears.
accent.
cute.
good luck.
good luck.
OMGyourPOOPING 3 years ago
haha thank you whoever you are! xx
JerbiLou 3 years ago
hi Jerbi!
thanks for answering my questions! i'll add the myspace to my list! let me know about any change in your condition
take care
Alex
lex4prez 3 years ago
hey hi!
i listened to your video and i don't know why but it touched me! i'd like to know more like: does it hurt?, what do you have to go through everyday if it does? what kind of treatments do you have for this? and also, more info on how to help for the researchs!
i think you're a very strong person to have gone through this in your life and still go on with it! some people have give up for way less.
lex4prez 3 years ago
Wow! Thank you for replying so fast I didn't expect anyone to!! It does hurt, its something I've just learnt to live with since I was little though. Its just like twinging pains really and sometimes like severe pins and needles. There are alot of treatments out there like surgery,sclreotherapy but mine is bleomycin. Add the myspace and support me!
Thank you for being so sweet :)
Jerbi
xx
JerbiLou 3 years ago