The Diagnosis Process

Hello Friends,
 
I thought I would shared about our diagnosis process  and it was just that, a very long process.  How did ours starts?  Well, it was a precious nursery worker  at a church who bravely and lovingly suggested that she was noticing signs in my son that might indicate a problem.  That began our 11 year journey of diagnosis.  Long story, really too long to share, but here are the highlights. 

Here is the diagnosis by age and professionals:
  Age 4-  ADHD
 Age 9 - Bi-polar Disorder
Age 12- Bipolar Disorder with psychotic episodes
Age 15 - Autism Spectrum Disorder, Bi- Polar Disorder, Obsessive Compulsive Disorder,
              Anxiety Disorder.
That last one was a game changer.  In between, there was concern that he was schizophrenic. 
The details don't really matter in where I am going with this post, but what I learned is. 

#1)  When you have a child with difficult behaviors, as soon as you see them, start a journal!

  Boy, do I wish someone had told me this early in our journey.  EVERY doctor, therapist you encounter will ask you specific behaviors, even when he was evaluated at Vanderbilt when he was 15, 16, 17, they were drilling me about his behavior as a baby and especially when he was 4 and 5. 
Looking back, hind sight was helpful, but in those early years, if I had kept a journal, we might have been able to confirm diagnosis earlier.

Document mood swings, aggressive behaviors, sensory issues; i.e. sensitive to certain material, sounds, light, and other sorts of things.  For example, my son would only wear soft t-shirt material, white tube socks, and loved the feel of silky slips in my drawer.  Oh and he hated tags in the back of his shirt. He screamed at loud noises.  I didn't realize these things were called sensory issues, but you live and learn.   

#2 ) Keep a accurate record of all the tests done, by who, where, doctor etc.  We moved doctors many times, not just because we moved locations, but some doctors would dismiss us if they couldn't help us and then we started the process all over again.  They don't keep all those records very well either. In the later years, they wanted to know about every test result for a proper diagnosis. 


#3)   Research and try it all.  We did.  We tried allergy testing, shots, food allergy testings, and changing his diet drastically.  But ultimately, to enhance quality of life when he was in adolesence , we had to use medications.  Our wonderful developmental pediatrician said to me the five words I still loathe, "It is a long process".  Finding the right combination of medication for your child.  Oh, was he right.  And again, JOURNAL the effects, the names of drugs, dosage and how long it was used!! Because, every new doctor or person looking at the diagnosis wants to know every drug that has ever been tried and it's effects.  Not all of the doctors keep those records, and you will want to know.  There have been many situations that have come up in our lives with doctors or hospitals wanting to change a med back to something we have tried years ago with terrible side effects.

#4) You are your child best advocate!  Keeping accurate records and asking questions of every one who is involved with your son is key to helping them become all that they can be.  Find doctors who are passionate about helping your child, and leave those who don't seem to care.  And follow your gut instinct.  My momma taught me that one, but I have used this gut instinct so many times throughout my son's life. 


I hope that this helps. 

Until we meet again,
Lynne