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Member meeting 2009 (Netherlands)
On October 31st it was time again for our yearly CMTC member meeting in the Netherlands at a conference center (and hotel) in Leusden.
After many hours of preparation we started equipping the two large rooms at 08:00 am. In the big lounge we held the meeting and in the smaller room we prepared everything to entertain our children big time.
On October 31st it was time again for our yearly CMTC member meeting in the Netherlands at a conference center (and hotel) in Leusden.
After many hours of preparation we started equipping the two large rooms at 08:00 am. In the big lounge we held the meeting and in the smaller room we prepared everything to entertain our children big time.
In total 40 adult members participated and about 18 children in the age group of 0 through 16. Several new members were present and some of them joined our organization just a few days before the meeting.
The children and their parents were welcomed in a very special way by our Clini Clown!
In our lounge we offered 10 different types of Southern Dutch pastries (called “vlaaien”) to our guests, which were consumed very fast and much appreciated.
This time two German families joined in as well.
The children and their parents were welcomed in a very special way by our Clini Clown!
In our lounge we offered 10 different types of Southern Dutch pastries (called “vlaaien”) to our guests, which were consumed very fast and much appreciated.
This time two German families joined in as well.
Both families were able to benefit from our free private diagnostic possibility by Prof. dr. Oranje, as well as one of our Belgian members.
After the formal part of the meeting, which was handled by Lex van der Heijden, it was Prof. dr. Oranje’s turn to give a presentation about the latest developments concerning CMTC.
After the formal part of the meeting, which was handled by Lex van der Heijden, it was Prof. dr. Oranje’s turn to give a presentation about the latest developments concerning CMTC.
According to Prof. dr. Oranje CMTC is not a tumor and neither a vascular malformation but lies somewhere in between these two.
In the course of time CMTC will disappear partly but not 100%. The most common abnormality with CMTC is the asymmetry of the body.
The main conclusion is: CMTC is a mixed vascular malformation.
The presentation can be found on our website in the protected member section.
In the course of time CMTC will disappear partly but not 100%. The most common abnormality with CMTC is the asymmetry of the body.
The main conclusion is: CMTC is a mixed vascular malformation.
The presentation can be found on our website in the protected member section.
Propranolol, an old fashioned Bèta-blocker, was accidentally discovered as an option for a treatment of hemangiomas. But about the safety and monitoring of this therapy is a lot of uncertainty. The most serious adverse reactions are bradycardia and hypotension. Infants with large hemangiomas or miliary hemangiomatosis are at risk for cardiac output problems. But propranolol may, especially with these patients, mask hypoglycemia; this last factor can lead towards serious neurological side affects. Everywhere in the Netherlands and elsewhere worldwide there are different kinds of therapy and protocols. In Rotterdam they remained more conservative and established an as safe as possible program. Our maximum dose is 2 mg/kg per day, as proposed by Siegfried and others.
We did broadcast the presentation ‘live’ with image and sound on internet. Subsequently members from all over the World were able to react with image and sounds as well which also was visible and audible for our members in the room in the Netherlands. One of our American members actually utilized this possibility to ask a question.
We also videotaped Prof. dr. Oranje’s presentation as well as the forum. This video is accessible via our website (protected area).
Important to mention is, that the presentation from Prof. dr. Oranje, as well as the forum are available in the English language since every question was “live” repeated in English.
We also videotaped Prof. dr. Oranje’s presentation as well as the forum. This video is accessible via our website (protected area).
Important to mention is, that the presentation from Prof. dr. Oranje, as well as the forum are available in the English language since every question was “live” repeated in English.
The lunch buffet was voluminous and very much appreciated by adults as well as the children. Especially the new members were very enthusiastic.
Hospital in Rotterdam became the Project Manager of the Research Project “Aardbeesie”. (similar expression in Holland like strawberry).
We want to discover the main reason for the formation of the haemangioma and through this find a more rational therapy, resulting in better and more effective treatments. Right now research takes place in finding out factors that rectify why one haemangioma responds while the other one does not react to the treatment whatsoever. This way we hope to be able to assess the therapeutic impact of a treatment. Also the intensity of the treatment will be rated. By establishing a tissue bank, tissues can be studied and being compared. Since haemangiomas consist of tangled blood vessels and CMTC is also a vascular disorder, we hope to be able to “piggyback” onto this study. That is
why we donated the € 5000 to help this project. This came as a big surprise for Prof. dr. Oranje.
For the children we had arranged an extra room with the entertainment of a Clini Clown in the morning and a “felt” workshop in the afternoon.
For the small children we had the availability of a large quantity of toys and for the bigger children we provided a Wii and a large screen.
After lunch the children were able to be creative (under guidance) with felt. For the smaller children toys were collected and arranged.
The children again had a great time and we hope next year to even welcome more children.
For the small children we had the availability of a large quantity of toys and for the bigger children we provided a Wii and a large screen.
After lunch the children were able to be creative (under guidance) with felt. For the smaller children toys were collected and arranged.
The children again had a great time and we hope next year to even welcome more children.
A few reactions from members participating in this meeting:
| • | "It was a learning and useful meeting with good tips. The question hour was well spent. This is understandable since when you visit a doctor and one can feel the stress because there is only a certain amount of time given. Probably we had questions afterwards and never asked them. After the meeting I spoke to a few mothers who experienced the same." |
| • | "In our opinion it was a great day! The children’s care was fantastic! The part with the doctor’s was very pleasant, especially Maurice’s explanations are very clear. " |
| • | "For me personally the participation (partly) of the CMTC meeting was very useful: I was able to ask questions and I received very clear answers. I did meet with parents and I was able to share information with them. I received ideas how we can maintain supporting our 14 year old daughter in a healthy way. I also really enjoyed exchanging information and speaking with Elvira." |
| • | "During the forum section I realized that for some people it takes a real effort to pass that threshold and ask questions through that microphone. A number of people therefore did not take that opportunity." |
| • | "This question time is certainly very useful. Here we get to the core of the information-exchanging function between the medical doctors and the members of our association." |
After lunch a forum was formed by Prof. dr. Oranje and Dr. van Steensel. Unfortunately Dr. van der Schaar was absent, due to a sudden trip abroad. This forum was also broadcast by internet so members were able to ask questions worldwide.
We had a very special guest amongst us namely Prof. drs. Wali van Lohuizen! He is one of the cousins of Cato van Lohuizen, who in 1922 has scientifically subscribed the ‘Van Lohuizen syndrome’ for the first time ever.
Prof. dr. Oranje from the Children’s Dermatology unit of the Sophia Children
We had a very special guest amongst us namely Prof. drs. Wali van Lohuizen! He is one of the cousins of Cato van Lohuizen, who in 1922 has scientifically subscribed the ‘Van Lohuizen syndrome’ for the first time ever.
Prof. dr. Oranje from the Children’s Dermatology unit of the Sophia Children
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