Tuesday, February 20, 2007

Working with Doctors

My friend has been having a hard time because her child, who has Down Syndrome, has not been well. Her behaviour changed significantly, she stopped communicating, and was less coherent. This obviously has caused a great deal of worry for her parents - further compounded by the fact that the doctors, for over a year, could not see past the diagnosis of Down Syndrome. Even though her social skills started to decline, the doctors were still saying that this was 'normal' for children with DS (social skills are usually very strong in children who have DS). After a long struggle, and by engaging a naturopathic doctor, they have managed to find a treatment that is finally benefiting their daughter - a combination of anti-fungal and pro-biotic medicines.

One of the things that strikes me is that ensuring the best medical treatment for your children can be difficult at the best of times, but when they have DS it's a minefield. Occasionally doctors fail to see symptoms that would be obvious to them in typical children. Sometimes the Down Syndrome diagnosis can throw them off their game. This is just a little example, but when Alfie was a month old he had an eye infection and the doctor at the hospital wrote the diagnosis 'Down Syndrome' on his prescription - as if a short course of anti-biotics was going to treat his extra chromosone! She was so caught up with the Trisomy 21 that she failed to accurately fill out a basic form.

Another issue is communication - a friend of mine who had an intellectual disability was treated in hospital for a bowel cancer operation, and one day when I was visiting, a doctor asked him if he had "passed wind". There was no way that David would understand such a euphemistic question - but when he answered 'yes' the doctor ticked a box on his form. I had to point out that he would say "yes" to pretty much any question he didn't understand - but it didn't make much difference. Unfortunately, David's operation had gone wrong and it wasn't picked up until it was too late.

So my questions are these:
How do you persuade a doctor that it isn't 'just Down Syndrome' that's the problem?
How do you come across as a knowledgable adult rather than an over-anxious parent?
How can we teach medical practitioners to communicate effectively with our children as they grow to adulthood?

I don't have any firm answers yet, but these are my initial ideas:
If you film your child regularly, you can show medics how you expect him to behave when he is healthy and well.
If you type up notes and print copies out for doctors they seem to be able to understand better than if you tell them things.
If you keep a log when illness occurs (again, typed), you can accurately answer questions about dates and times, etc.
Take a notepad and pen along to doctors appointments and obviously write down what they say. Then use the long words again when you are talking to them.
Tell your doctor if s/he uses language that offends, or does not treat you as s/he should. In my experience doctors appreciate it if you talk to them first about their behaviour before reporting above their heads. If all else fails, don't be afraid to make a complaint if you feel it will improve circumstances for other patients who have intellectual disabilities.
Tell your doctor if s/he does something right. People do their jobs better when they get positive feedback.
We need to get involved with the training of new doctors and encourage placements and interviews with medical staff so they get to know children who have DS at the very beginning of their careers.

Do you have any more tips or ideas?
I've found this excellent information produced by the UK Down Syndrome Association in conjunction with St Georges Hospital. It includes tips for diagnosing illness with people who have learning disabilities. Is there anything similar in the USA or Canada?

I also need to say how fantastic all the medical staff at the Royal Surrey Hospital were when Alfie was born. Really truly wonderful. So professional and supportive. They talked about 'possibilities' rather than 'disabilities' and gently pointed us in the right direction when things were difficult. It meant so much to us to have professionals who really knew their stuff, working with us to help our little baby. The intensive care staff at the special baby care unit even suggested that Mat and I go out for a meal while they baby-sat! I am genuinely grateful for the incredible support we've received. It's made all the difference to Matthew and myself.


The Frederick Fairleys said...

Hi Alice - Nice updates to the blog. I read with interest about your friend whose child has had some problems recently.

Dr. George Capone, at Kennedy Kreiger in Baltimore (who sees Grace every year) is currently studying the high incidence of autism in children with DS. He is a great resource and can be contacted through Kennedy Krieger if anyone feels this might be an issue for their child.


L. Noelle said...

Great Post, Alice. I agree with everything stated. When it comes to Jaden's Dr. I just TELL Him, why we are there, and educate him on what we need to test for, look for etc. Because otherwise he has no clue. He's a nice guy, just not educated in DS at all! So, when his 2 year visit came, I told him the tests we needed, the visits to the other specialists we needed etc. Since we have only been to the Dr. for yearly checkups thus far, I just take charge and let him know what I need from him. The more informative and assertive us parents are, the more we will accomplish when it comes to the Dr.s. We are in a role of having to educate them on a Diagnosis most of them know little about.

jennifer said...

I think there's one important point missing...having a relationship of mutual respect and trust with your doc. Hopefully, that will make all the other points you mentioned more salient. I know in this day and age it's hard to find, but having a doc who knows you and your family, to my way of thinking, is half the battle.

jotcr2 said...

It is true that videos can help get to the point pretty quickly.

View from the Trekant said...

Nice blog! I would echo your suggestion to have diagnoses, medications and allergies on a paper for the doctor. It does help - saves more time for a more productive visit.

There are some growing resources to help you with the "it's not just the DS" thing. For example - one study of young adults with DS who had decompensated showed that most had a very fixable/treatable problem like new hearing or vision loss, depression or thyroid disease - not a sudden change in their mentation due to DS or to dementia.

The biggest thing is sticking to your guns when you know something is really different.

Like your blog!