Subject: A diagnosis at almost 13 y.o.!

Hi, My name is Janis and my daughter Katie will be 13 y.o. in September. She was just diagnosed in June with a deletion on chromosome 15! Wow, am I happy to get a diagnosis after years of pondering why Katie is Katie. It wasn't a possible infection when I was pregnant (I never believed that one.) And I didn't drop her on her head when she was a baby. (People can come up with the craziest ideas.)

My family, husband and 15 y.o. son, and numerous relatives are all relieved to find out the truth. We have never seen another child with Angelman's and I have only talked to two other parents to date. We can't wait to meet many of you in the future.

How was she diagnosed? Also a fluke. An acquaintance works at a developmental preschool. We were having a conversation (I've had this conversation on several ocassions.) I noted that we have always felt somewhat alone in the fact that Katie seemed to be "one of a kind". I always envied my friends with kids with down's syndrome who had a group of like children to support each other. She mentioned that Katie reminded her of a child in her preschool. Well, I went home and looked up Angelman syndrome on the internet. My husband and I felt that Katie fit the picture.

Katie has been followed by a neurologist in Seattle since she was little. He never picked up the diagnosis!?!? What a disappointment. When we visited him in May he said Katie had a 50-50 chance of having Angelman. He felt her personality didn't fit the bill. I guess he doesn't know how much she does indeed fit the personality! What is the personality exactly anyway. He said she didn't have enough of a "cocktail personality".

Description of Katie: 12 y.o., very pleasant and loving person. About 4 foot 9 or 10, weighs 100 lbs. She used to be skinny but now carries an extra 5 or ten pounds. Brown hair, hazel eyes Wears glasses, strabismus. Katie doesn't have a lot of the physical features described (blond hair, large tongue, flat head or small teeth). Could this be part of the reason the diagnosis was missed?

Communication: A few words, mama is her favorite. Uses picture exchange system. This works best when she really wants something.

Self Care: Goes potty on schedule. Diaper at night. Has gone to the bathroom on her own a few times this summer! Doesn't like her head or face touched very much. She lets me put barettes and rubber bands in her hair now though. I am teaching her to brush her own hair.

Katie has become very proficient with a fork and spoon over that last two years. I went to an occupational therapist. She recommended that Katie hold her fork or spoon as an adult would with the proper form. Of course it wasn't easy but Katie now eats most of her meal with utensils and will mostly position the utensil correctly by her self now. What an accomplishment!

Motor: Ataxia, can walk up and down stairs holding on to rail, can't jump. Used to ride a trike well, but outgrew it. Should I get her a three wheeler? They are so expensive!

Does not test very well on tests.

Activities: Loves TV and would like to watch TV all day. She loves other activites when they are offered however. Loves magazines, and books. Likes to string beads and is actually proficient at this. Does well at peg boards. Likes puzzles but can only do basic shape puzzles without help. Likes to attempt to help me around the house, carry groceries, stir pots, etc. Katie loves water and swimming. She uses a plastic swimming ring around her body under arms and is completely independent in the water. She goes to Maui every winter with us.

Seizures: Katie had petit mal seizures when she was small. She went off meds three years ago at the age of 9. This was very scary for me. I was shocked when the neurologist even suggested she could go off meds. She went off meds with out a hint of a seizure. The fine tremors she had when she was on depakote decreased when she went off and I feel that she made great gains when she went off the meds as well. What a happy time. It would have been a lot easier knowing that she had Angelman's and that most of these kids get past having seizures.

Laughing and crying: Katie loves to laugh and tease. She is also very emotional and I can not get to stern with her or she cries and feels terrible. Sometimes she has laughed so hard or cried so hard when she has hurt herself that she can't catch her breath and has briefly passed out. Has anyone ever experienced this?

Drooling: Katie is a drooler. She had surgery three years ago to cut back on the drooling. The surgery was a success. The surgeon did not do any radical procedure so she does still drool some, but life is better without a constantly wet shirt.

Dental: Katie has been a thumb sucker for most of her life (loves to chew on things too)and her teeth protude now because of it. The dentist doesn't think she is a candidate for braces because she screams bloody murder in the dentist chair. ???

Katie had a graft placed on her gum below her lower teeth three years ago when she had her anti-drooling surgery. It worked out well. Is this a common surgery for Angelman kids? The one parent I spoke with told me his son needed to have the same procedure.

I am interested in some of the skills Angelman kids acquire. I am frankly interested in everything about Angelman Syndrome and am excited learning about all of the kids out there!

Should I make the effort to go to Calgary? Should I bring Katie? What luck for me that the national meeting next year will be here in Seattle.

Yes, I am rather long winded, but as you can imagine finding out that Katie's diagnosis after all these years is exciting. Just to think that we are not "one of a kind" and that there are a thousand people in the U.S. just like her has blown me away. How are you all doing out there?

Thinking of you all, Janis

Subject: I'm joining on from California!

Hello everyone! Wow! This is really going great! My name is Alice Evans and my daughter, Whitney, (deletion positive) is fifteen. I'm on the board and have just finished my school year- so I have some time to read the mail and perhaps contribute. Recently, I submitted a note to Kathy Vogelsang for the next national newsletter. (I'm the Education Cahir) I'd like to begin a regular "column" for the newsletter that would include recent "discoveries/insights, etc..." from our families. If there is good "participation", perhaps the ideas could be pooled into a "book" and distributed at the next conference and by mail. Just reading a few of your letters motivates me to "get going". We all have so much to share... and since we are all pioneers... we really do need to pool our information and not leave everything up to the researchers/physicians. (I applaud Sharon and Rick Mason of Illinois who have been doing surveys, etc...They're on the right track!)! The book could be a handy "boost" and quick reference for everyone... especially the families of our younger children. I did a "Parent Panel" at the conference in Colorado and I believe that it was enjoyed by all- and we all learned a little. Support is so important and I want to be encouraging to our families of younger children. Things only get better and better!!

Yes, Ashleigh is my older daughter and she has done "The Halo Club" newsletter in the past. She's leaving for Pepperdine University in August. One friend gave her a beautiful angel ceramic candle for graduation with instructions to light it every time she misses Whitney! I'm afraid she'll probably set the dorm on fire!! She will really miss those hugs and big grins... and we're really going to miss Ashleigh! She is often our "rock".

Ashleigh and I wrote the children's book, Angel Lady. I think many of our families have enjoyed it and we hope that it has helped "spread the word"! I looked in a bookstore at UCSD recently and discovered that many oof the new medical directories have Angelman Syndrome listed in the indexes! Hooray!! We're getting there! Last year a medical student diagnosed Whitney in two minutes! Whitney's doctor put him on the spot! He said he had had a question about A.S. on his last exam!!

Since Whitney is older (15), I would be happy to offer advice to anyone. We have probably "been there and done that"! For example, we have found that a broad spectrum antibiotic (like Amoxicillin) helps Whitney's seizures to end- she has them very rarely and we suspect that a bacterial infection triggers them! Our family doctoris very sympathetic and has bought our "theory". She has been very cooperative. We had to search to find her, though! She has written an emergency prescription for the antibiotic in case the seizures begin on the weekend... and they always do! We avoid the ER at all costs!! What horror stories we have of visits there!

By the way- if anyone is looking for the next step after a high chair...we found the perfect thing at the K-Mart. It's a small Bistro table and chair and it is made of resin so it is easy to clean!! It is attractive, also. We have a "beachy" home with lots of tile... so we have to worry about Whitney leaning backwards and cracking her head on the tile! The small table fits perfectly at the end of the kitchen against the wall. The table can be pushed up close to the chair, so little falls on the floor. It is within arms reach as I work in the kitchen and she has a snack! Perfect! I visualized something like this for months and I couldn't believe it when I found it!!

I want to include Dr.and Mrs. Angelman's address. Perhaps some of you already have it- and I don't think they would mind if I printed it. I know they would love to receive a note and picture. We are their family and lots of letters and pictures would really cheer them up! Just tell them about your family! The address is: Dr. and Mrs. Harry Angelman 5 Medina Ct. Marine Parade West Lee-on-Solent Hants PO13 9NH England. Thank you!! I love them dearly!

Hope to hear from many of you! I want to help... and I don't mind a little support myself! A social worker told me something last week that took me by surprise. She said that the natural progression of life is for children to leave home. I told her that we always imagined that Whitney would be with us forever. She gently mentioned that many older disabled individuals are living in apartments close to home with an adult companion. (one-on-one) Their lives are very busy and happy! It made me think a bit and keep an open mind about the distant future.

My best encouragement and support to all of you!

Alice Evans

Subject: New to the Net

Our Angel child name is Shannon she is 16 years old and deletion negative She was diagnosed eight and a half years ago by Dr Charles Williams of Gainesville. He saw her on an adoption video put out by HRS of Florida. He then called up HRS to bring her to Gainesville for an evaluation and thus the diagnosis of Angelmans. We adopted her about two months after her diagnosis and it is the best thing we did in our lives. We have 3 biological children ages 37, 36, 34 and 3 grandchildren, one of which is a month younger than Shannon.

At eight years old Shannon weighed 49 pounds and looked like a refugee from a Concentration Camp. She had been on 1000 mg Depakote for six months previous to the adoption until about two years ago when with the Neurologists permission we started weaning her very slowly. The beginning of May we finally reduced her to 250 mg per day and with the onset of a cold, then an ear infection and our being away from home for four days due to the death of my mother she began having seizures for the first time in eight years. We increased her Depakote to 750 mg per day but it didnt have any effect on the seizures. She had 14 drop seiz- ures in 45 minutes in the emergency room at All Childrens Hospital. She was admitted and placed one EEg for three days and treated with Adavan, Zorontan and Suprex for her ear infection. She had an allergic reaction to either the Suprex or Zorontan and rashed all over her face and bottom area which we treated with Desitin. She is better now and seizure free on 1000 mg Depakote per day.

She likes the four Ps plastic, pasta, pool, people and is a very happy child which makes us happy.

When we started weaning her from the Depakote she was 151 pounds and a little tough to handle, with the reduction she was 130 when she went into the hospital and now she is probably back up to about 140.

We noticed that with the increased Depakote her feet began to peel again but we would rather have that than the seizures. Her elbows are also a little rough if any of you have any suggestion on what will alleviate this condition we are open to suggestions.

We have rambled enough its time to close.....

Art & Dede Anderson

Subject: New Member

Hello,

My name is Chris Radke. My wife Patricia and I have a son Nathan who is 3.5 years old with Anglemans Syndrome (del+).

The bad stuff: Nathan is on Valproic Acid three times a day to prevent seizures, mainly myo-clonic. He is unable to swallow liquids without aspirating, therefore we give him all his liquids through a g-tube in his stomach. His feet tend to twist inward and had to where cast on both feet for 6 weeks to try to straighten them, the casts are off now and he wares braces in his shoes to keep his feet straight. To date Nathan has had a hydra-cell operation, a broken arm, seven stitches over his eye, a muscle biopsy, a g-tube, tubes in both ears twice, and currently a broken ankle.

The good stuff: Nathan has been seizure free for nearly 6 months. He standing more and even taking a step or two while leaning on something. He's pulled himself up to a stand (to reach in the bath tub) and recently crawled up a stair (to get at a plastic bag left on the landing). Nathan is vocalizing more but no words yet.

About us: We live in Mequon, WI which is on the north side of Milwaukee. We have a house on a river where Nathan loves to swim and go tubing behind the boat. I work at Rockwell Software as Sr. Development Engineer while Patty works at home taking care of our only child. We have two dogs and a cat which are Nathans' best friends although they don't particularly like the hair pulling. Glad to part of the community.

Chris, Patty and Nathan (3.5yrs del+)

Subject: Vacation and Introduction

Hello again,

Back from a 4-week vacation, I was stunned by the 500+ (!?) messages I found in my mailbox. I didn´t even know that it had the capacity to store such a volume ! Believe it or not, I've read it all by now. You must be having a very rainy summer over there (as we do over here, though now that I am back and working, of course, it looks much brighter !) and/or some of the "hidden subculture" (private correspondence) has become public after all...

I was delighted to see so many new subscribers to this list, and I think I should reintroduce my family to you. I am father to Liisa (6, del-), and her mother's name is Hilkka. Liisa also has a sister, Annina (9). We live in Joensuu, Finland, in the eastern part of the country about 100 km (60 miles) from the Russian border. I am actively involved in plans to get AS families - there are about 40-50 of us in a population of just over 5 million - more organized and informed in this country. I am also coming to the Calgary conference next month. As a subscriber to this listserv for 6 months now, I can already describe myself as a relatively well-informed AS parent !

Liisa has what I would call milder AS (e.g., no epilepsy, early ambulation, plenty of signs, milder sleeping disorder), and in general she seems to be higher functioning than most AS children. This is probably due to her having an imprinting mutation, which, however, still remains to be established in more advanced genetic tests. You will notice this when I tell about her various skills in forthcoming letters, and you should not necessarily conclude that we have reached another "success story" by educating her in some ingenious way.

To Sally Shannon and all others who have discussed vacations, I might offer a few observations. First of all, I think it is self-evident that we, as AS parents, need breaks much more than other parents. Whether you go for a vacation with or without your AS child is really a matter of the severity of her/his symptoms. For instance, if you cannot have proper sleep in new places, you wouldn't really enjoy it much. But also, I would advise you to try to get your child accustomed to stay in relatives' homes, hotels, log cabins, tents and so on - she/he may only need some positive experiences before she/he sleeps just like at home, or perhaps even better if allowed to lay just next to you.

Each summer, I take one week off, isolating myself on a small island where my parents have a summer cottage - sleeping, reading, swimming, going to the sauna, fishing etc.. My wife does basically the same thing, but she stays at home while the rest of us travel. Of course, being responsible for Liisa around the clock for 7 days is quite demanding, but at least one of us can enjoy complete freedom in the meantime. It also allows me to get my mind more organized, even if (or just because) I can do many things I don't normally do.

Each summer, we have also taken Liisa for an extended period (3-4 weeks) to see friends and relatives, and to stay in our summer country house in the South (of Finland, that is). We could do many things with her, like going to a beach, amusement park, zoo etc. without any major problems other than the usual constant supervision and the occasional small incident. Maybe it was this wet summer when we couldn't have many of the usual outdoor activities, or also because Liisa has become much more difficult to handle on the backseat, that we felt for the first time that this was no real vacation. Or perhaps we could handle her better when she was younger and not so mobile and active. (We even went to Paris for 2 weeks to spend Cristmas and New Year with friends over there when she was 19 months old and could not yet walk.) Anyway, this summer it was often very hard to find meaningful things to do. A 2-day cruise on the Gulf of Finland was probably the best we had.

So, we are beginning to feel that we should spend a major part of the next vacation without Liisa, if respite care and summer camps are timed appropriately (they were not this time.) This summer, we also had the first relatives to offer to take care of Liisa for some time while we are vacationing, but we are not yet sure whether they really understand what they would have to go through. After six years now, this is what we think.

I just hope all of you can find respite care, summer camp or something so that you could have a proper vacation. Liisa is now at the "Howling Wolf's Inn" (a former border guard station) with 10 other children and 14 minders, and next week she'll be at a riding camp. I'm sure she'll enjoy these activities enormously. After all, she has the right to take part in such summer camps just as any "normal" child.

Take care,

Heikki Taimio Finland

Subject: Hello from Angelcamp

Hello from Colorado Springs, Colorado. We were diagnosed by Dr. Williams anyway our children Audrey 9, Lauren 7 with Angelman Syndrome. It's been difficult and every time we go out it's with the grace of God. Sometimes I have to grab the nearest stranger to have him run and catch the one running in the parking lot while I pull the dead weight ressistor up off the sidewalk (the 7 year old is 85 lbs.). The kids are del. neg. but exhibit most symptoms ataxia, speech apraxia, etc. The two siblings have trouble with each other in communication and aug. difficult. I'm out of time. Diana Campbell and we are also at Angelcamp aol.

Subject: new member

Hello,

I'm Dawne. My family and I recently discovered that our 2-3/4 year old daughter Jacqueline has AS (+). Up till now she has fallen in the "developmentally delayed" category. She must be a milder case as Heikki mentioned his daughter is. Jacqueline has not yet suffered from seizures (we are keeping our fingers crossed) and she doesnot have a light pigmentation. Jacqueline is a beautiful hazel eyed, tan skin, brown hair, angel. She lights up any room with her smile. She has begun potty training herself. She will go to the bathroom and put her potty seat on top of the potty then grab her diaper and wait for help- or she will sit out side the bathroom yelling for someone to come help her. Accidents do happen since she has just begun this adventure. Jacqueline will be transitioning into a Preschool pragram for children with disabilities in September. How has the school systems responded to the needs of your children? Jacqueline cruises the walls and furniture unassissted but she hates using her walker- since crawling is much easier and faster for her. Jacqueline has begun blowing kisses sometimes and she now cries when I leave for work. As you know she loves water. We cannot walk past a bird bath without her reaching to touch the water. We have had to put a safety latch on the potty seat, since she will sit in the dark bathroom and play in the potty water. My family and I take comfort in find families like ours who share a common gift and who are willing to share their learning experiences to better our angels, not to mention proving some answers and relief to their parents. I have to mention the look in Jacqueline's eyes as she watches her big sister, Marissa 5-1/2, her eyes say I wish I could do what my sister does, but for now I'm happy anyway. P.S. Our neurologist suggested we try Tea d' Tilia (from the tilia flower). This tea has made her sleep disorder much better. She now sleeps 7-10 hours a night. We began giving her this tea in November 95 and by Feb. 96 we stopped and she can now sleep on her own with out anything. Have any of you had difficulty with your child's teeth? Jacqueline will need dental surgery next month because her teeth are decaying due to her sleeping with a bottle for so long. Any comments questions or suggestions are always welcome. If anyone is on-line from San Antonio, Texas please write. I am looking for members to begin our own support group down here. Thank you -- God bless!

Subject: Kyra

Hello. I'm new to this mailing list. I'm writing as a parent, but my letter is a little different than the other letters I've read, so please bear with me. My daughter, Kyra, had Angelman syndrome. She died 3 years ago, 7-7-93, at age 16. Kyra was diagnosed at 15 months clinically and then confirmed to have the chromosome deletion in her early teens. She was very typical of angelman kids, she had beautiful curly blond hair and blue eyes, she loved the water, she loved men, she was very affectionate and sweet. Kyra lived in a very special group home with 9 other children (one other deletion positive angelman child who was initially diagnosed by the staff at the group home after spending time with Kyra). The focus here was activities of daily living and Kyra really blossomed. She could bathe herself (with help for her hair), brush her teeth and dress herself (with verbal prompts). She was toilet trained and had a small vocabulary of signs for toilet, milk, cookie, thank you, want, etc. (she was big on the food signs). Her teacher at school was working with her to adapt picture books for communication. She learned really useful things like waiting in line, asking for food to be passed, things that would prepare her for an adult group home. Her teacher at school was also wonderful, did many field trips with the class (Kyra's favorite was bowling). Kyra was participating in a vocational training program through her school - sorting and stacking cafeteria trays and doing well as long as there was someone verbally prompting her. Otherwise she lost interest. She was mainstreamed for lunch (always her favorite subject), and thrived on being social with the other teenagers in her high school. Kyra's seizures were well controlled since she was a toddler on depakene and phenobarb. She was so well controlled that we weaned her off phenobarb to see if that was contributing to her erratic sleep patterns, which got worse when she became a teenager. Two months later she was in status epilepticus and started on dilantin with her depakene. She normalized again for about 3 months. She went to Kiwanas camp for a week, and while there was somewhat lethargic and vomited once or twice. Two days after she came home she seized again and was admitted for a probable viral syndrome. She was rehydrated overnight and seemed to be better, started on amoxicillin for an ear infection. She went home, but started vomiting later in the day and was readmitted. She was fairly lethargic then and couldn't keep anything down, but managed to sit up and gawk at the handsome male resident in the peds ward. Her meds were given IV, except for the depakene which had to be given rectally. After two days of IV hydration, she was tried on oral meds again which precipitated a half hour vomiting and retching episode. She was given ativan to calm the vomiting and went to sleep. Two hours later she was unarousable with fixed and dilated pupils. A CT scan revealed she had multiple ischemic cerebral infarcts and brain swelling which worsened over the next few days. She was worked up for toxic substances and infection and treated with a wide variety of antivirals and antibiotics but all cultures and tests came back negative. She never regained any consciousness and died three days later. The Angelman medical group in Gainesville assisted with her autopsy, but ultimately they were unsure of what triggered her condition. They ruled out seizures as the cause since she had been seizure free for over 36 hours. I stayed with Kyra the whole time and was with her when she died. At her memorial service we had lots of balloons and mashed potatoes (her favorite food) and over a hundred people came, many of them teens from her school, teachers from her elementary years, and just people whose lives she had touched. The first year after she died was awful, the second was even worse, but the third year has started to be better. I go regularly to a support group called Compassionate Friends and that has helped. I can celebrate her memory now without having the last week of her life dominate my thoughts. Well that's Kyra's story. Thanks for listening.

Subject: New member

Hello, my name is Pekka Pietila. My wife Riitta and I have a healthy son , Jussi , 21 y.o. and an Angelman daughter Liisi, 17 y. o. Liisi was already 11, when the diagnosis was made. Nothing could be seen in genetic tests and so the diagnosis was based on other clinical features. Liisi is on the level of about 1 1/2 year old child. She walks slowly, if somebody gives her a hand. We have been worried, because she walked some years ago much better, also without help . There was an about 3 years pause in her physiotherapy, and we believe, that it has been one reason to this recession (Most researchers seem to claim, that there should not be any skill recessions for Angelman childrens, what kind of experiences do You have?) . She has no words, but her passive word storage is surprisingly large (what is probably normal with all Angelmans). She eats (often too) well and also sleeps well (which is maybe not so common feature). She gots 900 mg Deprakine/day (it might be the same as Depakote in USA?). Well, in fact she has not slept so deeply during last months. The Deprakine dose was increased from 600 mg to 900 mg last spring and an another Angelman parent told, that the increased dose of the medicin had same effect to his child. We live in the neighborough of the city of Tampere , the third biggest city of Finland. P.S. We had last weekend a meeting of finnish Angelman families. There were 11 families (The diagnosis has been made only to about 30 persons in whole Finland). We decided to found a finnish Angelman Society. That happens probably in next spring. Heikki Taimio, who is an active mailer was one of the participants.

Pekka, Riitta &Liisi

Subject: Introduction

Hi everyone. My name is Barbara Perry and I have a 14-year-old son, David, who has been one of those mystery kids all along. Yesterday, I ran across information on Angelman Syndrome, and now I'm positive that is what my son has! We live in central Florida and he has been followed over the years by various geneticists from the University of Florida, including Dr. Williams in the earlier years. All of his chromosome studies until age 11 (about 3 of them) came back as normal. When he was 12, we found out that the one done when he was 11 had shown a "missing chunk" on the 15th chromosome, but the doctor said that it wasn't Angelman's. Both my husband and I tested out normal, (at least as far as chromosomes are concerned!) :) Yesterday when I read over the list of Angelman characteristics, David had almost all of them, including seizures and scoliosis! If Dr. Williams has his own e-mail address, I would like to have it if possible. I'm hoping he can go back and look at David's records there at UF and see what he thinks. Barbara Perry P.S. - David is out in the lake swimming with his Dad as I write. He LOVES the water!

Subject: Introduction

Hi, my name is Sam Henderson. My wife's name is Patricia. We have two children at home, Thomas age 13 and our Angel Christopher, who is age 9. Christopher was diognosed by his parents at age 4. He was later diognosed as deletion positive at age 4-1/2 at the University of Florida. Christopher does not walk independantly yet, however he does quite well with little hand support. Christopher most recently acquired a Rifton Ranger bicycle and does great riding it independantly in fact it has replaced his power wheelchair as his store transportation. Christopher is on Depakote 3/250 mg per day and is seizure free and also Carnator for the side effects. Christopher has a few good words, however he has many that are slured to where you have to listen very carfully to be able to understand him. I am a firm believer that our chidren can and do talk. Christopher will be in home school this year. Christopher's last Psychological showed mild to borderline mental values. Christopher can do any age appropriate work that you give him provided he has been taught it. Christopher can also do anything that he want's to do as long as he is dealing with someone with a mind that is open enough to accept what he does. Well that's all for now. Please let me know if I can be of any help to anyone.

Subject: Introduction

It's Martha Sprowles again. I'm so excited to have people to talk to about Sara who understand what's going on. I'd like to know more about Christopher Henderson's Rifton Ranger and also about side effects of Depakote. What is Carnator?

Our biggest problem immediately is Sara's sleep disorder. We are in Dr. Wagstaff's melatonin study, and the melatonin works very well to make her drowsy at a reasonable hour, so that getting her to bed initally is no problem. What happens though is that she wakes to urinate or in a wet diaper anywhere from 1 to 4 a.m. and then takes about three hours to get sleepy again. She really tries to go to sleep, but all her thumbsucking just doesn't work. I asked Dr. Wagstaff about a second dose of melatonin, but he said that would seriously mess up her own melatonin-secreting cycle. Sometimes a dose of Benadryl works, but it dries her nose so that we can't use it every night. Does anyone have any advice? We even had a sympathetic pediatrician give us chloral hydrate, and that didn't work.

Subject: introducing Mattijs

Hi,

My name is Lisette, mother to Gydo (3.5 ), Robin & Mattijs (twin-boys, 16 months). Mattijs is diagnosed AS almost two weeks ago now. His first signs were :drinking problems, wandering eyes, no social eye contact, and eventually delayed development, which you cannot denie when you have twins.

I've been reading all your mails over the past days and I wonder mostly about the sleeping (and eating) problems. Mattijs has been a good sleeper so far and he eats a good meal every day (better than Robin in fact, who wants to do it all by himself, and spills it all over the floor). As most of the kids in the mails are older (3 yrs up) I wonder will this change slowly when he gets older?

I'm also very interested in ways to stimulate him to start sitting by himself. Mattijs loves to have his hands in his mouth, which keeps him from using his arms and hands.

Bye, Lisette (Mattijs, 16 m., del+) Netherlands