Friday, May 23, 2014

Ten tips for a productive trip to your child’s specialist

Doctor or practitioners’ appointments have consumed much of my oldest daughter’s life.  There has been the pediatrician, the ophthalmologist, the pediatric gastroenterologist, several neurodevelopmental pediatricians, pediatric neurosurgeons, several pediatric neurologists and that doesn’t even begin to account for the biomedical doctors and practitioners.  My daughter needs all these doctors to help manage her care…both biomedical and mainstream. 

In my opinion, the best type of doctor to have when your child has autism is a MAPS (Medical academy of Pediatric Special Needs) or a DAN! (Defeat Autism Now!) doctor; however, there may be times when your child needs to see a specialist.

When a child with autism sees a mainstream specialist, I have found there are a lot of things to consider.  Today I am going to talk about how I prepare for meeting with a specialist because it has taken me a long time to learn these lessons myself.  

1.     Ask around to find the most compassionate, knowledgeable doctor in your area. In our case, this doctor needs to be up-to-date with the most recent studies on autism and how it is intertwined with metabolic problems, neurological, immunological and genetic problems.  For example, if you are seeing a pediatric neurologist, you want him/her to know about Cerebral Folate Deficiency in kids with autism.  If you are seeing a pediatric GI, you want them to understand that kids with autism classically have GI distress and you want them to be willing to investigate and treat that.  Knowing what to expect from this specialist is very helpful, so asking other parents that have seen that doctor for their feedback is very helpful.  If you are extra-ambitious, you can read the specialist’s published papers if they have any.  This gives you an idea of where their specific interests lie and how they approach problem areas.

2.  Do your homework.  Research.  This helps you speak the same language as the doctor and  also helps you know exactly what to ask for…which leads us to #3. 

3.     Know what you want from the appointment.  A good doctor will ask “Why are you here and what do you hope to get from this appointment?”  Be ready to answer that question with specific answers.  Be ready to make your argument as to why your child needs testing in your opinion.  Stay away from open-ended questions like “What avenues would be useful to explore?”  Hopefully, you have this information before even stepping into the doctor’s office. If you don’t, a MAPS (Medical Academy of Pediatric Special Needs) or a DAN! (Defeat Autism Now!) doctor can help direct you.  You want to have a set agenda when going into the office.

4.     Make sure that this specialist has access to all of your child’s medical history BEFORE you arrive. Hopefully, the doctor will take the time to review it before he or she even walks into the exam room.

5.     Make a ONE page (not twenty) list of reasons why you are here at this specialist’s office and what you want.  For example, if you want testing for CFD, make a list of the reasons you want this and the child’s history related to this.  For example, the child cannot tolerate milk; the child responds well to methylfolate supplementation with better cognition skills, child has staring episodes, etc.  List as many reasons as you can think of.  And list them as symptoms….NOT as your diagnosis.  For example, if your child has staring episodes…write down “staring episodes” – “Could this be seizures?” (even if you very well know that they could be.)  Make two copies of this.  One to give to the doctor and one for you to refer to as you speak to the doctor.

6.     Make a one-page list of all your child’s medications and supplements and their dosages and give it to the admitting nurse so they can pass it on to the doctor.

7.     Bring any new studies that you think may be relevant to your child’s case.  Since much science is new and emerging in the autism field, sometimes we have to bring in the peer-reviewed studies to show the doctor.  Even if they have already read the studies, this shows the doctor that you have done your homework and you don’t want to waste their time.

8.     Be respectful of their time.  Don’t be long-winded.  Get to the point quickly and accurately.  Answer all questions as honestly as you can.

9.     Stay in their wheelhouse!  Stick to the doctor’s strengths.  That is why you are there after all.  Don’t ask a neurologist questions about candida and don’t expect a mainstream GI doctor to understand why you think MiraLax is bad for your kid because your kid has leaky gut and the plastic in the MiraLax could go right into their bloodstream.  They won’t get it.  Don’t even go there.  You can ask for alternatives to medications (like MiraLax), but don’t go looking for an argument.

10. Lastly, listen to the doctor.  Genuinely listen as a concerned parent.  Don’t roll your eyes or get upset.  If that is how you feel, wait until after he or she leaves to do it.  Don’t argue, regardless of whether or not you agree with what is being said. I don't see anything to be gained by arguing.  Bring up your points and let the doctor tell you his/her thoughts on the matter.

I hope that these quick tips make for an easier trip to the specialists office and I hope you get as much as possible out of the visit.  Good Luck!