Expert: Catherine Ridenour - 10/2/2005

Question
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Followup To
Question -
My adopted son is 6 yrs old. (adopted at 2 1/2) he has Prader Willi Angelman critical region duplication, a genetic disorder causing autistic spectrum disorders, mild/moderate learing disability and late onset epilepsy.  Over the past few years, behaviours in the autistic spectrum have been more obvious and we are struggling to cope with intermittent vomiting at mealtimes.  99 % of the time it is at tea time - precipitated by someone talking about being SICK! ( Another child coming round for tea etc..)  It started when his younger brother was sick at the table with a heavy cold soon after we adopted them.  R observed this and stated calmly that he was sick too and vomited!  Since then he has had numerous periods of vomiting at tea time lasting several weeks. (Currenly lasting 3 weeks)
Vomiting starts after a whole meal, then after 1/2 a meal, and then after 2-3 mouthfulls as the days progress.  There is no distress beforehand and he can be quite matter of fact about it.
- We have tried ignoring this behaviour - vomit covers the table!
- He has been alowed to vomit at the sink and then resume his meal - this escalates the frequency of vomiting.
- He has been removed from the table and put outside ( where we can discretely observe him) to vomit - this initially decreased vomiting, but no longer works.
- He has been put to bed after vomiting - this worked short term.
- We have plated up 2 meals, one to vomit on and one to eat - this sort of works, but doesn't resolve the issue.
If he vomits meals for about 2 weeks he loses weight.
He has been seen by 2 paediatricians, 2 genetic specialists and recently by a psychiatrist - all agree that it is psychological but do not suggest any ways of dealing with this behaviour.  HELP!
I am looking for any other ways of coping with this behaviour - it seems very trial and error and I am feeling frustrated and running out of ideas.  
He has a good appetite normally and we have ruled out food allergies, overeating, over drinking, physical illness ( he had pyloric stenosis as a baby)
His speech is reasonable and he is able to express himself in a concrete way.  If this is a way of communicating a need I am truly at a loss as to what it might be.
I appreciate any ideas you may have and thanks for your time.

Niki Hoyle.
Answer -
Hi Niki,

Wow, this is a new one for me.

Clearly, he has formed an association between the tea time meal and vomiting.  So far as I can tell, the only thing you have not tried is not feeding him at tea time.

I'm sure he won't starve if he misses this afternoon feeding for a period of time.  Make up the calories at other meals.

While everyone else eats, he can be put in his room or some place else you find suitable.  I would make it clear that this is NOT punishment but simply the only choice he has left you under the circumstances.  If he continues to vomit at this time of day, food or no food, it is so deep seated that I guess I would feed him in the bathtub. Again, simply as a way of dealing with the problem and not as a punishment.

Since this had been going on for several years, it may be very hard to counteract.

Also, after a few days of missing tea, and hopefully not vomiting, offer to allow him to eat with you and receive a reward for eating without vomiting.  If he succeeds, follow through with the reward.  Only you know what motivates him so you'll have to come up with an idea of what offer. If he vomits, remove the plate and don't replace the food.

I know some of this sounds harsh, but you need to attach behavior to immediate consequences (NOTE:  consequence does not mean punishment). This is a training issue just like the dog not going out to relieve itself would be.  You need to prevent the misbehavior and train the correct behavior.

Do let me know how this goes, I will be asking some of my Autistic acquaintences if they have more suggestions.

Best wishes,
Catherine


Hiya,

AN UPDATE!

We have ommited tea for 3 days now .... letting him have a bath whist we are eating. (Which he understands is because he is sick at tea time) Unfortunately this has backfired a bit ... He is now refusing to eat ANY meals, or saying he is sick each time he sits to eat.  We insist he eats breakfast, which he does with a fuss, but keeps down.  He has refused point blank to eat luch and not offered tea.  I gave him a snack and drink before bed tonight as he had eaten nothing except breakfast, which he got very angry about and went to bed and vomited on the bed.  I showered him, told him how cross I was and brought him downstairs to eat the same snack again, which he did with no fuss what so ever!
I am more concerned about him not eating as I weighed him tonight and he has lost 4 lbs (?1.8 kg) in the past month. ( I normally weigh him monthly.) He is a small 6 yr old and weighs 2st 13 lbs today.)
In desperation, tomorrow we are going back to plating up 2 meals and allowing him to vomit in the sink from the first meal and sit and eat the second, which we know he will do without distress, from previous experience.
I have no problems with being firm with him if need be, but the weight loss is now my main worry as it is always dificult to maintain his weight.
I feel he is controlling us with this matter, but I know when we have let him control his own appetite for a month, when things were going ok, he lost weight and I am not sure about his ability to know when he is hungry or full as he is very inconsistent.
I do appreciate that any change in behaviour may take time and consistency, but we need to find a safe way of doing this.
People have suggested high protein drinks to suppliment meals if he vomits, but when we adopted him he was having high energy milk as eating was a problem, and this dulled any appetite he may have had.  We stopped the extra milk and eating became more normal.
Any thoughts????

Niki .

Answer
Hi Niki,

I agree you need to keep him healthy.  I also agree he's controlling you with this behavior.

I know that protein drinks will dull appetite for other foods and the goal is normal eating.  I don't think it's a good solution to back-step to the drinks.

I am a bit confused because all the descriptions I read of Prader-Willi include an obession with food to the point of insatiable appetite resulting in obesity.  Clearly, your son is not fat.

I found some information about Angelman's Syndrome, which is the same genetic defect but inherited from the mother's side instead of the father's.  I don't know, since he is adopted, if it's possible to know which parent gave him the defective gene.  The symptoms are very different even though the defect is the same chromosome, just from different parents.

Here is a link to a couple of web sites that discuss this.

This one discusses the difference and has pictures: http://zygote.swarthmore.edu/chrom3a.html

http://www.autism.org/prader.html

http://asclepius.com/angel/asfinfo.html#DVMT
http://www.ninds.nih.gov/disorders/angelman/angelman.htm

I have no expertise in either of these issues so I can only wonder if he might be misdiagnosed.

I wish I could have been more help with the eating issue.  I'm certain that some form of behavior modification could work but not knowing your son, I am at a loss.  Keep experimenting and you will probably work it out.

Good luck.  If you do solve this, let me know.  I really care.

Catherine