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CMTC USA meeting 18th July 2009

LexVanDerHeijden
5 Recommendations

On Saturday afternoon the 18th of July 2009 the CMTC USA meeting will be organized again in Washington DC.
The meeting will be organized by Lex van der Heijden, president CMTC, and one of the medical advisors Dr. Maurice van Steensel, will also be present!
Please let me know if you are interested to join this meeting and with how many persons.
If you have any questions please send them to me so we can prepare the answers as much as we can.
Hope to meet you (again)!

Lex van der Heijden

Explore topics in this discussion:

Varicose veins Surgery Failure to thrive Hemangioma Bruises Hemihypertrophy Pregnancy Glaucoma Constipation Pain Stress

74 replies

Charity1

My husband and I are very interested in the meeting. What is the benefit of us going and having the Dr. there will her be able to do a medical examination? This trip is much easier for us than the Netherlands! My daughter will be 3 by then. She is doing well! Oh, I have a question I have been meaning to ask..We were told she had M-CMTC but had a MRI on her brain and the Dr. said that she had a beautiful brain and that she just has a large head. So does that mean she does not have CMTC?

LexVanDerHeijden

Not sure. Does she have any markings, esp. in the face around the eyes and/or forehead, on her body?

I suggest that you join the meeting while you can ask any medical question and meet other patients and parents of patients in order to share knowledge and experience.

Coming to the NL will be a very special experience and could be combined with a vacation. But I understand that such as trip with a small child is not easy. Please ask for instance Ed Gallis on this CMTC group while he has been here as well with a small child.

ednbec

Lex is it right can be a very special experience and he is a great tour guide and host as well. Ellayna was 2 when we made the trip and she loved it as well. We do spend a lot of time going to doctors here in Ohio so to her it was just another "road trip" as we call them. The exchange rate on dollars to euro's is much in their favor and it can get rather pricy right now.

At the least I would do as Lex suggested and join the CMTC group at DC and get to see and meet other patients. We are a fun crowd and Lex brings candy, lol.

Ed

LexVanDerHeijden

Yep. I'll bring special Dutch candy with me ... 'stroopwafels', 'speculaas' etc. so try to be there!

CarolJudith

I would love to attend the CMTC USA meeting this summer in DC, and I hope to be able to bring my daughter as well.

My lovely daughter was born 25 years ago with what looked like large purple bruises on her left leg from above the knee to her ankle. No one at that time knew what it was. Her leg worked normally so the doctors dismissed it. It wasn't until this month when she went to see an opthalmalogist for a bloodshot eye that wouldn't heal that her leg came into the forefront of her health. Although the doctor didn't think the eye condition was related to her leg, he suggested she have her leg checked.

After some searching on vascular malformations, I noticed that CMTC seems to be what she has. In fact, when I showed my daughter the information I had found online, she said it was interesting to see pictures (online) of infant legs that looked just like hers.

Anyway, back to my interest of your meeting in July. I would love to attend, and if my daughter and her husband are able to get free, I know they would as well. Some questions I have offhand are:

If my daugher is able to attend, I'd love to have her leg looked at to see if she does have CMTC.

With marks on a leg and no other visible signs, what complications can arise?

Which medical tests should be performed for a thorough evaluation of this conditios?

Do certain medications aggravate this condition?

What is the probability of passing this condition on to children?

These are just a few questions that I can think of, although I'm sure I'll think of more. Will you be posting the time and place of the meeting? Thank you so much for bringing the meeting to the States.

JBCA

My daughter was diagnosed with CMTC. The markings are on her upper thigh trailing down below her knee. She just turned 1. I am having trouble finding Doctors that have any information for me. Currently she is experiencing constant constipation, poor weight gain (diagnosed with failure to thrive), and an unexplained toddler fracture of her right leg. I also feel that she is slightly behind developmentally for her age. She has just started to pull herself to a standing position.

Do you have any US doctors that you work with?

Once diagnosed what else should be done?

Thank you so much for all of the information you provide!

ednbec

It does take a while to find doctors anywhere that seem to understand CMTC. The CMTC Organization that Lex runs has a web site that doctors can access for free. We do have other U.S. members that have seemed to finally find their doctors. As for our case we have a team of them at The Cleveland Clinic that know CMTC, Proteus and Hemihypertrophy very well, and I would recommend them anytime. What part of the country are you located? Maybe another member close to you could offer their information as to a doctor.

JBCA

Thank you so much for your reply. We live just outside of Cincinnati OH. I have family in Cleveland so that could be an option. Just like anything I am struggling with my self on this... at what point do I just stop looking into this and stop wondering if any issue is related to my daughter having CMTC. I asked my Pediatrician to see a geneticist and she only wanted to send me if they had experience with this. She is willing to do anything for us. I know that you only know from your personal experience and from what you have learned and people you encounter... Should everyone see more specialists than just the dermatologist? Like I said... I don't know if there is a correlation between anything.

Sorry for my rambling... I am just trying to decide where to go from here!

Allison

LexVanDerHeijden

Dear Carol Judith,

Dr. Maurice van Steensel will take a look at your daugther's leg. No problem.

Legs, or limbs in general, maybe longer/shorter/thinner/thicker. Furthermore it might be possible that your daughter can't stand very long and can't walk/cycle for a long time.

The tests performed in the NL depend on the complications with are normally not demanding.

Regarding the impact of medication also depends on the complications. Please don't stick a needle (injection or drip) in limbs affected by CMTC (thrombosis risk).

In case of varicose veins and usage of the birth control pill please be very careful (thrombosis risk).

Sofar it seems that a parent doesn't pass on CMTC to a child.

I'm not a doctor, the above text is based on my experience with many patients and is collected during approx. 15 years (for instance during annual meetings and questions/answers sessions with our medical advisors).
I'm currently working on a questions/answers list which will be reviewed by our medical advisors and published on our website.

LexVanDerHeijden

Dear JBCA,

I'm working on a list of doctors in several countries who are (somewhat) familair with CMTC. However, I would like to get their permission first before I publish their names on our website.
Secondly, I really advise you to come to Washington DC on the 18th of July while Dr. Maurice van Steensel and I will be there. This is a unique opportunity to get a quick diagnosis and to ask any questions you would like to ask.
Beware: this meeting is only for members and doctors.

CarolJudith

I visited my daughter over the weekend and we are in the process of coordinating our schedules so we can see a specialist at The Cleveland Clinic, hopefully sometime in May. Other than an official diagnosis, I don't think we can afford much more than that. Insurance companies aren't too generous when it comes to pre-existing conditions. And then I hope my daughter will be able to attend, along with me, the CMTC meeting in July. What a wonderful opportunity to learn and share experiences. Thank you, Lex, for organizing this meeting. : )

LexVanDerHeijden

You're very welcome and I hope you'll be able to join the CMTC USA meeting in July!

ednbec

Carol,

Since we both live in Ohio and Ellayna's doctors are at the Cleveland Clinic, if you'd like to meet somewhere between now and your appointment we could share some notes and experiences with you to help in your trip. Just an offer, no pressure. I just remember our first trip things were a little overwhelming and if we could help someone else avoid this I thought we'd offer.

Since we are dealing with a lot of doctors in the ped's department I would also want to give them permission to share any of our information with who ever your daughters doctor might be. Again just an offer.

kittycat71263

I would so love to be there. This has been one of the scarest things me and my husband have ever been through. We had one DR say oh dont worry he will grow out of it. But I am worried. He is my special little man.

CarolJudith

My daughter and I are looking forward to our May 11th appointment at The Cleveland Clinic with Dr. Heather Gornik. This will be a great opportunity to have her leg evaluated and to ask questions. She and her husband hope to start a family in the next year or so and want to take precautionary measures to ensure a healthy pregnancy. We're still interested in attending the meeting in July, though. Knowledge is power. : )

ednbec

Small world, Dr Heather Gornik is my vascular cardiologist at The Cleveland Clinic. You'll like her, she's nice. I had a proceedure there last September.

Other Doctors in that department have seen Ellayna for her blood clots too. Since she was having problems usualy associated with older adults they sent us there for ultra sounds of her legs and clots.

Have a good trip. On a side note, there are several area hotels that give you a special rate and offer shuttle service to the Clinic. All you need as proof is your appointment card. When we can not get into the Ronald McDonald House we stay at the University Inn and Suites. It cost around $69 with tax and is 5 to 10 minutes from the Clinic.

KimberlyD0

Do you ever come to Canada?? I can't aford to go to far.

LexVanDerHeijden

Hi Kim,

I've in Canada in 2006 for almost 24 hours ... Where do you live in Canada? Maybe I can connect you to doctors in certain areas who know (something) about CMTC.

CarolJudith

Ed,

Thank you, Ed, for all the hotel information! I will be calling the University Inn to get reservations. And I love the idea of taking a shuttle to the clinic. That sure takes some of the stress out of an already stressful situation.

I am still rather numb about all this. My daughter Jessica goes to an opthalmalogist and within a few weeks we have an appointment at The Cleveland Clinic for a condition we didn't even know was a condition. We just thought the purple marks on her leg were strange vein formations and nothing more. Who knew this actually has a name? Maybe we're overreacting by making an appointment at the clinic; she's had no other symptoms and she's 25 years old. But we'll dot our i's and cross our t's to make sure everything is ok.

Thank you again, Ed, for all your help.

ednbec

It's never to late to get ahead of this condition. Now that you know it's CMTC you can take precautions to avoid certain things or watch for symptoms that may or may not pop up later. Since clotting is always an issue and she does have CMTC on her leg it's best to monitor for possible clots if nothing else.

The fact that she has gone this long without problems is a God send and good sign there is nothing else there. Chances are she will never have anything more severe than what she already has.

Enjoy your trip and keep in touch.

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