Be an Active Advocate for your Child

Just having a little chat

There is no better or more determined person to advocate for your child than you and those closest to your child.  You have to suck it up, find your voice, test your debating abilities, and become that person people can put a name to when you ring their phone.

I was naive enough to think that when I found a specialist or doctor or facility to treat my son that those involved would actually take notes, research options, get to know my son and his history.  I was so wrong.  Doctors are just people simple as that.  They are busy humans who are over worked, understaffed, trying to make their $$$ by seeing as many patients as possible and hoping that they have at least one answer to each question that the parents might ask of them. 

Yes, they are educated and yes some of them are brilliant and thoughtful and actually take a vested interest in their patients but those physicians are few and far between.  If you find one hold onto them for dear life cause most doctors put on a friendly face but forget about your case a few hours after you have left their office. 

Bring a notepad, a tape recorder, or an extra person to every single appointment because every meeting is packed full of information and most of the time it goes in one ear and out the other.  If you have a screaming child your attention is on trying to calm them down rather than ask the questions you had come up with beforehand.  Most specialists appointments take weeks or months to get into so be sure to have that extra cup of coffee and come prepared with lists of questions for every doctor appointment.  Ask different doctors the same questions to get different perspectives.  Question everything the doctors tell you to get as much information as possible.  Then go home and start your homework assignment by doing your own research on everything you heard or wrote down.  You will be floored with how much information doctors leave out or sugar coat. 

Yes, the internet is full of contradictions and opposing material.  However, nobody knows better than those living in the world of each diagnosis.  Join support groups and learn from those who have been dealing with each diagnosis for years.  They will have more answers and advice for you than any single doctor or team of doctors can provide.  Doctors are like fingerprints, no two are alike, and no two doctors know or feel the same about any one diagnosis so they will treat each diagnosis differently.  Likewise, what might work for one child might not for another.  It is up to you to find out what works for your child.  What they like or don't like.  What brings them comfort or pain.  What works best for them or halts their development.  If you ever have a doctor telling you to just stick with the plan and you know in every cell of your body that "that plan" just isn't working then YOU have to do something about it.  Demand (in a nice way) that the doctor try something differently.  Phrase your messages or emails in way where you are not asking for permission but requesting a different approach or medication. 

Video tape any form of seizure like activity or physical symptom you are questioning.  If you are lucky enough to get your doctors email then email them the video with your question.  Make it as brief as possibly and do not abuse your patient doctor email privilege cause you don't want them to get overloaded with emails from you. 

Every single time a doctor writes out a prescription start listing ALL of the other prescriptions or thickeners or over the counter medications your child is on at that time to make sure that the doctor does not give your child something that might react to something else they are on.  I always bring an entire list of the stuff Noah is on and already there has been two times where the doctor prescribed something, I handed over the list, and then the doctor tore up the prescription and ordered something different.  Even if the details are in every patient history list out there the doctor is not going to remember it off the top of their heads so you have to remind them.  Same goes for pharmacists as well. 

Keep an ongoing folder, excel spreadsheet, work document, or the like with every single appointment, diagnosis, scan, picture, video, prescription, ect. I have to refer to our "book" at least twice a week.  I have had to make copies at least 15 times to give to specialists or government agencies or programs.  It saves a lot of time and stress to have everything in one place.  I make mine on my computer and print out a new hard copy with new updates and keep it in my diaper bag to bring with me to doctor appointments.  At each visit I go to the records department to get a copy of the previous visits medical record.  You will also notice on these records how much information the doctor entered but forgot to tell you about.

This all sounds exhausting and some times it is but at the end of the day you will feel SO much better knowing that your child is getting every possible chance to develop and have a great life because of your hard work and perseverance.