SAFE HARBOR, The official newsletter of the Floating Harbor Support Group
July 2008, Issue 18
Content appears as written by individual authors.
CONNOR, UK, age 3 (pictures coming soon!)
by his parents: Steve & Lesley
Connor is 3 years old and 86.6 cm tall (2 feet, 10 inches); weighing 11.9 kg (26 pounds). He has a broad forehead, slightly low hairline with a hairy back and shoulders. Prior to birth, Connor failed to grow in the last 6 months and when born spent time in a special care unit. In the first 9 months of life he failed to gain weight and was very hard to feed--milk was syringed to him.
Connor has lovely long eyelashes and deep set eyes, a cute botton nose and cheeky smile. He has hypermobile joints, in particular his hands and wrists. He has a dimple at the base of his spine.
Connor has delaye dmotor and language ability. He understands a lot but is unable to speak and gets frustrated. The family can understand his needs, but to most others they think he is younger than his age.
Odd and hyperkinetic behaviour is a real adventure for the rest of hte family. He seems to have endless energy.
We as a family are learning Makaton sign langauge to help, and pictures to aid in recognition. A pictorial time line shows Conner his routine for each day so that he can know what is happening. We are waiting for speeck therapy for him which is hoped will help.
In addition to FHS, Connor suffers with sensory integration, has has poor sense of body position, touch and movement. We have to feed him food that is very textured, and let him play with soft and hard things just to awaken his senses.
We are getting help, however at the same time we want to be involved with everyone and everything.
Robin, Germany, age 8 (photo coming soon)
Robin was born on October 26, 2001, and how he is 1.58 meters high and weighs 16.8 kg. (37 pounds) In the summer he goes to a special primary school because he has langage problems (he speaks very few words). He is delayed physically and mentally.
Robin is a very lively child and has a very good memory. He lobes to play video games. We as parents must make sure that he doesn't do this too much.
We would like his langage to improve and have tried a speech therapist.
We are using sign language and many pictures to communicate.
We look forward to more contact through this support group.
Yours sincerely, the family
Aisling in Ireland
Many thanks for the information you sent regarding FHS. It was most useful. I will certainly be getting some copies to give to Aisling's teachers. (See posts on Info for Therapists & Educators AND Schooling Notes.)
We attend Prof. Andrew Greene, head of Genetics for all of Ireland, and he said there were only about 3 cases of FHS in all of Ireland that he was aware of. He diagnosed Aisling with FHS, but gave no follow up, and because so little is known about FHS I find it very hard to find information, so finding this support group was a Godsend!
Aisling has no medical problems. She has tested negative for coeliac (celiac disease) twice, though she does exhibilt simliar symptoms. Her heart is fine, no murmurs or underlying conditions. We do notice that if she gets cold, her lips and fingernails go blue. That initailly got me worried about her heart, but we have since realised that it is because she has practically no body fat. We are taking a family holiday to Florida in May and have requested heat in the pool because of Aisling.
She is an extremely active, affectionate, intelligent little girl. She warms to everyone she meets and shows no fear around strangers, which can be worrying. She is now 6 years, 7 months old, 119 cm (3 feet 7 inches) and weights 35 lbs. (15.8 kg.) Regards and happy summer to you all.
Aisling's family
Jasmine, Italy
I have seen that in this journal there are many tips. I have noted that there has not been reported any information about teeth care. I would like to inform you about teeth care in these children affected with FH syndrome.
They need to bruch their teeth at least 5 minutes after every meal with a tooth brush as soon as they are old enough.
A doctor has told me to use four in dependence of the age.
My daughter has so many hooles in her teeth albeit she follows a healthy diet (without sweets, cakes and junk food in general). Thank you, Katia in Italy
Isabel, 9, UK
Isabel, now 9 years old, is a delighfully happy girl and a real job to everyone that knows her. The FHS diagnosis was only confirmed a yaer ago and came as a relief to us rather than a shock. Until this time every medical professional she saw was mystified about her little use of speech and small stature. She had undergone many tests and all had found no explanation.
As parents, we were getting very frustrated in regard to her education. Isabel's comprehension was considered by others as very low because she did not communicate very much. Now with an FHS diagnosis everyone at ehr school can appreciate that she CAN understand well beyond what seh can put into words. She is capable of far more than they had previously thought.
Within the las tyear her speech has impoved appreciably and she is growing at a steady rate, keeping up the height of the tallest FHS children of a similar age. We go from week to week seeing her make small but appreciable advances and enjoy every minute with her.
Update on Rhett -- USA
Hello, this is from Rhett's mom, Michele. I hope everyone is doing GREAT. Rhett is loving the beach here in Maine. Only 4 more days fo school. Then of course, off to summer school. He is doing great, except for his behavior is getting worse. Not sure if it is the other kids in the public schools rubbing off onto him with their behavioral issues, or if this is just part of the FHS course. (See post on "Rages".) I am writing for a couple of reasons:
1. I would certainly love to hear from other families that just want to share some info or have questions.
2. Is there any way of knowing how growth hormone shots have worked on other FHS children? The doctors here asked me to see if any kids were benefitting from the shots. And are there any side effects? (See post on "Growth Hormone".)
3. Are there any special vitamins that would benefit him? He doesn't eat all that well, but I do give him a multivitamin-- but anything to benefit him would be great. (See posts on "Diet and Foods for FHS Children".)
Johns Hopkins Study Update
Please contact Deana at littleflock7@gmail.com if you would like to participate in the study.
Trail-a-Bike
There is a special bike called the "trail-a-bike" which attaches to a regular bicycle as a sort of "third wheel". After using this for over a year, our son was finally able to learn to balance well enough to ride a regular 2-wheel bike on his own-- with no training wheels when he was around 12 years of age. It is made by the Adams Bicycle Company.
New Members
I was making some copies of old newsletters for a family and noted that the very first Safe Harbor newsletter went out to just 10 families. We are now up to 60 members in 17 different countries! We've done some growing in the last 9 years haven't we?
Current Number and Location of FHS Member Families
America 24
England/UK 16
Canada 3
Ireland 2
Netherlands 2
Puerto Rico 1
Greece 1
Germany 1
Mexico 1
Israel 1
Austrailia 1
Italy 1
France 1
South Africa 1
New Zealand 1
Brazil 1
Scotland 1
Total: 60 Families
Donations are always appreciated via paypal to: deana@floatingharborsyndromesupport.com
Please visit our webpage at: www.floatingharborsyndomesupport.com
