Family meeting in Chicago July 2008

AHC family meeting in Chicago 25-27 July 2008

We (Sigurdur, Ragnheidur and Sunna) were invited by the AHC association of the United States to join them in a family meeting in Chicago. This would be a 2 days meeting with speakers from the States, Canada and France. Also a team of specialists that Dr. Swoboda from the University hospital of Utah headed would be examining the patients.

The meeting was held at the Marriot Renaisssance Suites hotel not far from Chicago O´Hare airport. The Hotel was very nice and the room was large.

On our first ride with the elevator we were joined by another family and we noticed right away that the child had AHC. After an introduction we talked a litle bit outside the hotel. This family was from NY and the child, 7 years old had not had an episode for 2 years.

The health service that they had was very good, all the specialist that they need for their daughter go to their house for the sessions.

Next morning after a nice breakfast we met the president of the US AHC association mr. Richard George and Sharon Ciccodicola who is a part of Dr. Swoboda´s team and had been in email contact with us, very nice people. Richard has a 16 year old son with AHC.

After talking to them we had an apointment with Dr. Swoboda´s team. Sunna was in a good shape considering all the traveling so we thought she would be fine meeting the nurses and doctors for a litle examination. The team consisted of Dr, Sweeney, Dr. Swoboda, Dr. Silver, Murevet Elkay, Dr. Reyna, Dr Aka Lewelt and nurse Abby Smart. Dr. Swoboda interviewed me while Dr. Sweeney examined Sunna with the help of her mother. The examiation was fine but when Dr. Sweeney was about to take a blood sample from Sunna she had an episode and we had to rush her to our room that was just down the hall. The episode was not a bad one and she recovered within a few hours.

In the examination there was a young woman 20 years old that looked and walked and talked normally. She has AHC but lives a normal life, she finished highschool and has a job. It was very promissing to see this young woman doing so well and that gave us a lot of hope.

That evening we met up with the other families at the hotel. There were about 20 families and childres from the ages of 2 up to 22. Some children had episodes occasionally but other frequently. The triggers were different, one boy could not handle strong odor, many can not cope with new situations and water triggers episodes with many children.

Most of the children can not walk normally and some have involentary movements.

Most of the children are using Flunarizium but that drug is not legal in the USA so they have to order it from Canada or England.

Saturday morning the meeting started at 0830. Ragnheidur joined the meeting while I and Sunna went to the playroom next to the meeting room. There were many children there but it was noisy so it took some getting used to. There were 11 volunteers to care for the children and Sunna found a friend in another patient’s sister. They walked around and played together. I was not confident to leave her there with the volunteers as Sunna can not understand English.

At the meeting Ragnheidur listened to Dr. Silver´s presentation which was about AHC in general.

Dominique Poncelin, president of the French AHC association did a presentation on the influence of Flunarizine and had an update from the European AHC associations.

After lunch Alice Belgrade from the Chicago Behaviour Consultants did a lecture about behaviour. (Behaviour by Alice Belgrade)

Next was Matt Sweney, he told us about the AHC investigation of Utah hospital that has not been published. There were 103 patients in the work 57 boys and 47 girls. Matt told a short history of AHC including an article by Makati from the year 2000 where he said that the average IQ of HAC patience was 62. Matt talked about new technology to analyze genes and about a trial that was estimated to start that winter (the trial is about to start in October 2009). In this trial the affects of Sodium Oxybate on AHC patients will be investigated.

Sunday morning we woke at 0700 and Sunna was in a good mood.

Ragnheidur went to the meeting, Dr Brian Katchan told us about a drug that he has been using on his daughter who has AHC. The drug Chlorozoxazone and GHB.

GHB has worked very well on AHC patients that are paralyzed after an episode. He showed a video of a boy in an episode, he was paralyzed on his right side. 10 minutes after he got GHB he was using his right side again- unbelievable.

The Gerber family have been very successful in getting donation and presented a check for 81.000$ that they donated to the AHC association of USA. They gave others tips on how to collect donations.

Richard Georg encouraged people to find donations for the AHC fund of America

The meeting came to an end and we promised to keep in touch through

The travel back to Iceland was uneventful but we learned a lot from this meeting and had a lot to think about.

Sigurður H. Jóhannesson

Ragnheiður Erla Hjaltadóttir

Sunna Valdis Sigurdardottir