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-   -   very depressed, the complications have arrived. (http://birthmark.org/board/showthread.php?t=5613)

robertgouveia 01-04-2012 04:43 PM

very depressed, the complications have arrived.
 
my son lucas was born with a venous malformation from his hip all the way down his right leg. i noticed the problem at birth, but the seriousness only became apparent to me when he was 6 months old and i noticed the the affected leg and foot was much smaller. fast forward a year and i was feeling quite encouraged by the fact that although my son's right leg is thinner and his right foot much smaller, there doesn't seem to be a length discrepancy and was as mobile as any child of his age, running, climbing, kicking a ball etc.

our doctor told us that at some point treatment would be necessary and i'm afraid that might be now. my little guy has developed a lump on the sole of his foot which is about the size of a quarter inch ball bearing. it is obviously painful as he won't let me touch it and he is walking on the side of his foot. what has really got me down are the sclerotherapy reviews on this forum and others. for most it seems that the treatments were excrutiatingly painful, followed by temporary relief and then recurrance worse than the initial condition.

i am reluctant to go ahead with anything but at the same time am worried about the pain the little guy is in.

-very sad dad

abatie 01-04-2012 06:46 PM

Although AVMs are not my area of primary interest I can relate to what you are going through as my daughter has faced many challenges in her short life. The best advice that I can give is to find a doctor who specializes in the treatment (just because someone has done it doesn't mean they are a specialist or that they should be doing it), meet with them and make sure you trust them and feel comfortable with them, and ask about what to expect and what will take place. They can give you a realistic idea of what outcome you can expect. Sometimes you will be told miracles are going to happen (be skeptical of anyone promising that!). After all of this information you may want to get a second or third opinion before you move ahead with treatment. I have been to several different doctors in several specialty areas trying to find the best fit for my daughter. I have actually learned more from the parents that also have CMTC children than any doctors I have met with. That isn't to say we haven't seen some really good doctors that we have been happy with but treating something as rare as CMTC is difficult for doctors, who in most cases, have never heard of it prior to meeting Becca.

robertgouveia 01-05-2012 10:46 AM

Quote:

Originally Posted by abatie (Post 24587)
Although AVMs are not my area of primary interest I can relate to what you are going through as my daughter has faced many challenges in her short life. The best advice that I can give is to find a doctor who specializes in the treatment (just because someone has done it doesn't mean they are a specialist or that they should be doing it), meet with them and make sure you trust them and feel comfortable with them, and ask about what to expect and what will take place. They can give you a realistic idea of what outcome you can expect. Sometimes you will be told miracles are going to happen (be skeptical of anyone promising that!). After all of this information you may want to get a second or third opinion before you move ahead with treatment. I have been to several different doctors in several specialty areas trying to find the best fit for my daughter. I have actually learned more from the parents that also have CMTC children than any doctors I have met with. That isn't to say we haven't seen some really good doctors that we have been happy with but treating something as rare as CMTC is difficult for doctors, who in most cases, have never heard of it prior to meeting Becca.

thanks for responding Abatie. we have already been on that doctor finding rollercoaster. now he is being seen by the head of vascular anomolies at great ormond street, so i'm comfortable that we're in the right place, just going through another low and trying to come to terms with the fact that my son will have pain issues his entire life. it's the feeling of helplessness when he grabs at his sore foot, which really cuts me up. he looks at me as if to say do something.

nickbar 01-10-2012 03:40 AM

Where are you located? Have you written to any our experts? Please feel free to write to me via email.

kaykay 01-14-2012 10:48 PM

wish i could say something to make you feel better.

there is a child in trinidad. since birth, no one has been able to diagnose him. mother had several tests in England (on credit), still can't find out the problem. terrible ulcers in his mouth, try to treat him normal as they can but they even wash their feet every time they enter close to him. kid suffers alot, doctors just don't know what to do as they can't find root of the problem. worse yet funding has been cut off, still owes hospital. Hospital would like to have him to continue to try, but funding....but i understand he is a happy little boy, bright. I know the mother is torn, but she cherishs the good days, i think, thats what helps her threw the down days.

xrox 01-17-2012 04:27 AM

Robert,

I too am a father to a child with a venous malformation. From your post it sounds like your son has developed a blood clot which can be very painful. My daughter develops these clots often and they are always on the bottom of the foot.

I'm no doctor and your experience may differ but we have found that a warm bath, day after day, really helps dissolve the clot somewhat. Also, we have found that cold surfaces, or cold temperatures in general, increase the frequency of these clots. My daughter wears a soft slipper indoors that helps with pain when walking.

Also, like you, I was hit very hard emotionally realizing my child had a serious condition with a lot of unknowns and anxiety. My advice to you is to do what it takes to lift your state of mind. Find a way to be a proverbial "rock" LOL. Also, try not to let him see your sadness. That little guy is counting on you more than anyone.

As for treatment, it seems you have already done your homework. A lot of options are available but they are only treatment and temporary. Dr. Yakes does claim the word "cure" but at great cost financially and physically as he does as many serial ethanol sclerotherapy sessions as it takes to get a clear MRI.

I plan on trying foam STS sclerotherapy before I entertain any notion of Yakes. Partially because of the risk and partially because Yakes will cost me 500 grand (OUCH!!)

Take Care

robertgouveia 01-24-2012 04:34 PM

Quote:

Originally Posted by xrox (Post 24641)
Robert,

I too am a father to a child with a venous malformation. From your post it sounds like your son has developed a blood clot which can be very painful. My daughter develops these clots often and they are always on the bottom of the foot.

I'm no doctor and your experience may differ but we have found that a warm bath, day after day, really helps dissolve the clot somewhat. Also, we have found that cold surfaces, or cold temperatures in general, increase the frequency of these clots. My daughter wears a soft slipper indoors that helps with pain when walking.

Also, like you, I was hit very hard emotionally realizing my child had a serious condition with a lot of unknowns and anxiety. My advice to you is to do what it takes to lift your state of mind. Find a way to be a proverbial "rock" LOL. Also, try not to let him see your sadness. That little guy is counting on you more than anyone.

As for treatment, it seems you have already done your homework. A lot of options are available but they are only treatment and temporary. Dr. Yakes does claim the word "cure" but at great cost financially and physically as he does as many serial ethanol sclerotherapy sessions as it takes to get a clear MRI.

I plan on trying foam STS sclerotherapy before I entertain any notion of Yakes. Partially because of the risk and partially because Yakes will cost me 500 grand (OUCH!!)

Take Care


thanks for responding. i was just going through a bit of a low moment the other day. it happens from time to time when you just wish it didn't have to be this way. most of my days are good. my little one runs around and plays like kids who don't have his condition.

has your daughter had any treatment? compression stocking? My little one will be going for his mri soon and will get his first compression garment in the next few months. has your daughter had the mri yet? how old is she?

i haven't looked into dr yakes yet, but i'm a little sceptical of anyone who uses the word cure, especially if it's using existing procedures. i know their is some genetic research being done and they have suggested that gene therapy might offer a potential cure, but even if that were true, it would be many decades away.

once again, thanks for responding, keep in touch

robertgouveia 01-24-2012 04:39 PM

Quote:

Originally Posted by kaykay (Post 24638)
wish i could say something to make you feel better.

there is a child in trinidad. since birth, no one has been able to diagnose him. mother had several tests in England (on credit), still can't find out the problem. terrible ulcers in his mouth, try to treat him normal as they can but they even wash their feet every time they enter close to him. kid suffers alot, doctors just don't know what to do as they can't find root of the problem. worse yet funding has been cut off, still owes hospital. Hospital would like to have him to continue to try, but funding....but i understand he is a happy little boy, bright. I know the mother is torn, but she cherishs the good days, i think, thats what helps her threw the down days.

agreed, there are days when i count my blessings. i went in for a consultation last week and saw a little boy my sons age, with a lymphatic malformation down the entire right side of his body. i can't even begin to imagine what this child's parents must be going through. for me, 90% of the days are good. thank you for responding

robertgouveia 01-24-2012 04:44 PM

Quote:

Originally Posted by nickbar (Post 24617)
Where are you located? Have you written to any our experts? Please feel free to write to me via email.

thanks corinne, i moved back to the uk from tampa, florida. yes, i have written to drs levitan, nelson and i spoke at length with linda. linda was a real lifesaver. she talked me through and was a wealth of information and comfort. i am deeply indebted to her

kaykay 01-25-2012 11:17 PM

Dr. Linda is a sweetheart


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