The shock of it all....

It is slowly sinking in, what has possibly happened to my son over the last nine years of his life. Today as I took his DNA to the post office I thought what would change once I had the results in hand. What if it comes back normal? If he really doesn't have some freaky genetic problem that causes him to process medicine incorrectly? Well....would I believe that? I am not sure that I could any more. The responses that I have gotten when talking to people have been interesting. Yesterday my son had two doctors appointments. One was a routine appointment with his eye doctor. He wears glasses and has to have his eyes checked regularly because he has....(or we thought he had) Psoriatic Juvenile Rheumatoid Arthritis. This comes with a horrible risk of something called Uvititis which can cause blindness. YIKES! Let me tell you, every time my son told me his eyes hurt I was pinning him down and checking for that tell tale ring around his eye that would indicate the worst had happened....Well thankfully it never did.
My son was diagnosed with Psoriatic Rheumatoid Juvenile Arthritis in January of 2008. He had just been seen a week before with problems of increasing behavioral issues at school, and tics...he was pulling his hair....constantly. Just the front. He did it so much he had a bald spot...So sad. The doctor also notes in this visit that he had over break forgotten how to write his letters....I remember that. I remember calling his neurologist, saying there is this major problem, he can't write any more....remember this is January....we got a MRI scheduled for....MAY. Nice.
So let's see what cocktail of medication was my son on at this point?
Abilify 5mg in the morning and 1/2 at night
Strattera 25 mg in the morning and 10mg at night
topamax sprinkle (10 mg)
Zyrtec 10 mg
singulair 5 mg
So let's just take a gander at some of the side effects if we can even bear to.... I almost can't.... But I must. I have to show you.... Seriously I have to show the world remember this is when he was diagnosed with JRA. ( a very serious life changing illness)
Abilify lists as a side effect....joint swelling, decreased range of motion, arthritis, rheumatoid arthritis, localized osteoarthritis. OK well I just have to paste the whole list because it relates to possibly why he couldn't remember how to write his letters....Again....not one person said...."I wonder if your son is having a side effect of the medication...."

Nervous System Disorders: Frequent - lethargy, dyskinesia; Infrequent - disturbance in attention, parkinsonism, dystonia, drooling, cogwheel rigidity, dysarthria, paraesthesia, hypoaesthesia, loss of consciousness (including depressed level of consciousness), hypersomnia, psychomotor hyperactivity, balance disorder, cerebrovascular accident, hypokinesia, tardive dyskinesia, memory impairment, amnesia, ataxia, dementia, hypotonia, burning sensation, dysgeusia, restless leg syndrome, hypertonia, Parkinson’s disease, akinesia, dysphasia, transient ischaemic attack, facial palsy, hemiparesis, myoclonus, sciatica; Rare - bradykinesia, coordination abnormal, cognitive disorder, syncope vasovagal, carpal tunnel syndrome, hyporeflexia, intention tremor, muscle contractions involuntary, sleep apnea syndrome, dementia Alzheimer’s type, epilepsy, hyperreflexia, mastication disorder, mental impairment, nerve compression, parkinsonian gait, tongue paralysis, aphasia, choreoathetosis, formication, masked facies, neuralgia, paresthesia oral, parkinsonian rest tremor, cerebral haemorrhage, dizziness exertional, hyperaesthesia, haemorrhage intracranial, ischaemic stroke, judgment impaired, subarachnoid haemorrhage.

I just highlighted the ones that stood out as obvious to me that he was having at that moment besides the joint swelling....
The other medications have similar side effects so we are layering these on top of each other in a kid who just can not handle it.
The eye doctor did not surprisingly shake my hand and congratulate me for my amazing discovery. She was pleased that my son is no longer on all the medications. I think most people were alarmed at best when they would see his medication sheet, but she did not seem to believe me that he had been affected the way I explained.
Is it just too much?
Is it too hard to accept?
I know I did not believe his medicine was causing his problems. Like I had said even when we found one medicine, Singulair was causing him to be very very depressed, I did not wonder if the other medications he was taking were causing him harm.
At our second appointment of the day the pediatrician was patient and kind as he listened to my story and signed the paperwork necessary for my son to have the DNA test. He asked what I was going to do with my life when this was all over. I think he must worry that I am a bit obsessed. Perhaps I am. Who doesn't want the best for their kids? If it means becoming a private investigator into your child's medical history then, well I guess that is what you do. I always knew something was not right. I always knew there was more. A well meaning school psychologist once told me what she thought my son's IQ was. They have never been able to get an accurate IQ because his processing speed is so slow. She gave a number that I thought was far lower than where my son actually is. I laughed. "Oh no..." I said, "My son has a much higher IQ than that!"
She told me, "But that is good, that is average!"

I am sure she thought I was "Just one of those Mom's"
I don't really care.... I will not stop fighting for my kids to be all they can be, and neither should you.