Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

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

LexVanDerHeijden

Hi Tracie,

In case you want to join the CMTC meeting you need to be a member. If you are a member please send me an email (president@cmtc.nl) with the number of adults and children present. If you are not a member yet: http://www.cmtc.nl/HTML/society_member.php

See you in July!

LexVanDerHeijden

Hi Dash,

This is very hard to predict.
I suggest that you become a member so you have access to tons of information and you can join the CMTC meeting in Washington DC in order to have a free medical diagnosis. I feel that you are still concerned and the best way to solve this as much as possible is to meet Dr. Maurice.
Hope to meet you in person!

dash

Lex,
This is not in regards to the conference, but I've been reading your posts and I was wondering if I could get your opinion. My son is almost 5 and was born with a strange veinous abnormality on one leg that spread up the back of the leg and into his groin. The pediatrician was completely unconcerned by this, and I thought it was just a birthmark. But it still concerned me so I researched his symptoms. When I came across pictures and information about CMTC I knew that had to be it. His case seems to be very mild, his development is normal, but I don't know if I should have him seen by a specialist? What do I need to be concerned about from now on if this is CMTC? I look forward to hearing from you.

LexVanDerHeijden

The conference starts indeed on Saturday 18th at 13 hours. However, thanks to the amount of patients to be seen by Dr. Maurice van Steensel it might be required to start the private sessions already during Saturday morning. This will be communicated later on (the planning of the private sessions).

MCaroline08

The time states the conference will begin at 1pm Saturday...is this correct? We just want to make sure we arrive in time.
Brandy

Questioningmom

Thank you everyone for you advise and knowledge! We appreciate the peace of mind knowing we are not by ourselves. We cannot wait to meet everyone in July!

Julia

MCaroline08

Julia,
We have not had any issues with immunizations. We have experienced some constipation afterwards, but they gave her some different formula to help. She is 1 and has had all of her immunizations. Hope to see you in July!
Brandy-Kansas

ednbec

Sounds like things went great in Cleveland. I will be seeing Dr. Gornik myself in the next few weeks for a cardiac issue and most likely Dr Bartholomew for a pulmonary one. I am pushing for them to attend the CMTC conference and our geneticist as well. From what I've been told with the economy tightening the Clinic has not stoped their Doctors from travel, but have slowed it some. Hopefully since they how have a few cases there they will see the need to expand their knowledge base by talking with Dr. Maurice.

LexVanDerHeijden

Hi CarolJudith,

The doctors are very welcome. I can arrange a meeting with doctors only as well so they can talk medical with Maurice.

CarolJudith

My daughter Jessi (age 25) and I returned from our trip to the Cleveland Clinic last week. My goodness, what an incredible facility! Ed, you are so right. Dr. Gornick is wonderful. We were there for 3 hours as Jess was seen by the resident doctor, Dr. Gornick, and Dr. Bartholomew. They said Jessi's case is unique to them. The markings are on one leg and only one leg, nowhere else. The sonagram revealed that the vascular malformations seem to be in the skin with some "fingerlings" below the skin layer. The size of her legs appear to be only slightly different (1cm) between knee and ankle. Thus far, Jessi's only treatment is to wear a pressure stocking when she gets pregnant. Dr. Gornick had Jessi's leg photographed as well as photos of her baby pictures I brought. She believes that Jessi has a form of CMTC but took the photos and sonagrams to a vascular conference this weekend. We're to call to find out the official diagnosis this coming week. When I call her, I will mention your web site, Lex, and the conference in DC this summer.

Again, I am very impressed and pleased with our experience at the Cleveland Clinic. Everyone was incredibly nice and attentive. Jessi's insurance doesn't cover pre-existing conditions, so we paid out-of-pocket. What is wonderful is if you pay up front, 35% is taken off the bill! And the food in the cafeteria isn't too bad either.

Thank you to this site to give us some direction on where to go to have Jessi's leg looked at.

LexVanDerHeijden

Hi Questioningmom,

Accordign to Dr. Maurice there are no known associations.

LexVanDerHeijden

Hi Questioningmom,

As you know I'm not a doctor but a MRI scan is according to me, esp. with young kids, performed under anaesthesia which is not something you do for fun (both physically as well as mentally). So only in case there is a real need you should perform a MRI.
Please discuss this with Dr. Maurice in July and please invite the doctor as well.
I'll ask Dr. Maurice about the vaccination and keep you posted.

Questioningmom

We told our pediatrician about the conference in July and he was very excited because he doesn’t know a lot about CMTC. He told us that he would order an MRI before hand if it were something we wanted to do to get more information. We wanted to see if you thought it was something we truly needed to do because sedation was going to be used.

Also another quick question, after Raegan recently got her first round of immunizations (Rotavirus vaccination and DTaP vaccination) she has appeared to have a lot of stomach pain. They are treating her right now as if she is constipated. Are there any known complications associated with CMTC and the intestines?

Thank you again for all of your help. We don’t know what we would do if we hadn’t found this blog.

ednbec

As one of the moderators on the yahoo CMTC support site I thank you for the endorcement. But I would also like to let people know that most of us on that site are also members of Lex's CMTC group and members here on Inspire. We strongly urge you to join the CMTC Organization as well. We started the yahoo group basicly to catch those "new" parents just getting the diagnosis and seeking the answers. But we do often chat and vent there as well.

We are a small unique group and no matter where we meet we share life with CMTC. I track all the groups including the new one on Facebook.

Ed Gallis
aka Grandpa Ed

AlbertaMom

Hi Julia,
If I may, I would like to point you in the direction of the Yahoo CMTC Support Group for not only information on CMTC but support as well. I feel that the group is a very close knit bunch of people and a ton of topics have been covered which may help answer some of your questions. Leg length discrepency, glaucoma, lesions, questions to ask the dr's, and MUCH more

http://health.groups.yahoo.com/group/VanLohuizenSyndromeCMTC/

You may have to create a Yahoo account but that is no big deal compared to thesupport you wil find!

All the best!

Laura, (AlbertaMom) Mom to Clark, CMTC and PMG

LexVanDerHeijden

Hi Julia,

I'll put you on the list of patients to be seen by Dr. Maurice. The list is rapidly growing!
To attend the conference, and to have access to tons of information and other members, please join us by:
http://www.cmtc.nl/HTML/society_member.php
Further details of the conference location: http://www.cmtc.nl/HTML/news.php
I've no idea of hotels in that environment but as soon as you are a member I can share names, email addresses, etc. with you so you can contact other members in that area who might know a hotel.
Depending on the length differences and the age different actions or no actions are possible. This is not easy the answer. Please take this question with you to the conference.

Questioningmom

Thank you for all the work you are doing for this conference! My husband and I would love to be able to bring our daughter in July. To attend the conference all we must do is join this web site? I just want to make sure we do not miss out on this opportunity. We will gather what information we have from our doctors and email this to you. I am not sure how much this will help because they have not been able to give us a definite diagnosis. I will send a list of questions along with the email. We would really appreciate the chance to visit with the doctor to receive a true diagnosis. Also I was wondering where the conference is being held so we could reserve a hotel room close by. In addition I had a quick question about limb size discrepency. Is there anything we could do now to prevent it from getting worse? Thank you so much for everything. It means so much to new scared parents.

Julia

kittycat71263

Hi please add us to the list. I already sent you the pics awhile back. Thankyou for all you are doing. You are greatly appreciated.

LexVanDerHeijden

Hi Laura,

You're very welcome! I've received no all email yet as mentioned in my email. My mailbox is empty again so please send the other email messages.
See you in Washington DC! I'll bring some specials with me ...

AlbertaMom

Hi Lex,

Thank you for the detailed information regarding the convention and necessary information you require!

I have just e-mailed you with everything I hope you should need in regards to Clark. There are a total of 5 e-mails with a number of attachments, which I am hoping transmit with no problem :)

Talk to you soon and thank you for organzing such a great event and for your never ending patience!

Laura

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You