This week feels like one long Monday that never ends.
Today Ryan and I scampered over to CHOP for Ryan’s possible autism diagnosis. We arrived at 11 am for a 90 minute evaluation and we left about 4 hours later. After hours of interviews and conversations they told me that, they are not sure if Ryan has autism or not. They agreed his behavior was worrisome and It was important for him to be evaluated. They said at times Ryan had conversation reciprocity and other times he did not. The doctors agreed he has sensory issues, but hey decided to do more testing before deciding if Ryan has autism or not. They scheduled him for a Autism Diagnostic Observation Schedule which is a test with Ryan and an evaluator in a room playing. The test is videotaped and the Dr’s then will decide what they think may or may not be a diagnosis for Ryan.
There are a few more worrisome issues. Ryan has been eating pencils. I know, how weird. They decided to take blood and check his lead level and other blood counts. Ryan for a super athletic kid had a sudden decrease in muscle tone. Both Ryan’s BSC and I have noticed it. He has been having trouble controlling his muscles like he used to and is running considerably sl0wer and is less coordinated than he was last summer and fall especially for a kid who gets so much activity in a week. They suggested we go see the neurologist about that issue.
We discussed ADHD medicines again. They suggested we wait on trying medicine for Ryan with his horrible history with brain medicines and my husbands very strong family history with Afib. My husband, his brother, his mother, his sister, and his grandfather all have had the same heart issues and my husband and his brother both have had cardiac ablations. Because of the family history of afib Ryan would have to be very closely monitored on ADHD meds. They did suggest play therapy for some of Ryan’s anxiety issues and OT for his fine motor issues over the summer which would mean weekly appointments at CHOP. They discussed trying to find a social skills group but if he does not have a autism diagnosis insurance will not pay for these groups even though we need them.
After the evaluation and blood test I looked at my boy with the velvety blue eyes, who was being eternally patient, and told him I would let him pick out a completely allergic lunch from a 7-11 as we rushed off to pick up Aaron at school. When given the choice of anything in the store my eclectic 8 year old picked falafel and almond M and M’s.
I am finding all of this completely overwhelming tonight. It feels like every question about Ryan is answered with five more questions, and it has been this way for years now. I know this is about getting him more help and real answers but for tonight I am going to let myself feel completely demoralized and mentally tired.
April 25, 2012 at 7:22 pm
Hugs from Wyncote.
April 25, 2012 at 8:37 pm
And, with all this, I assume all you want is recognition that there is a problem, and that he deserves some assistance in school. No?
April 26, 2012 at 3:29 am
Oh, lady. I feel exhausted just READING about a day like that! It sounds to me like CHOP is doing an excellent job with your boy, which is obviously the most important thing–my kids’ diagnostic process wasn’t nearly as thorough!–but what a headache. I wonder what they think most families do with suggestions to get a child into a therapy insurance won’t pay for? I guess it’s not the doctors’ fault, but…oy. Three cheers for mama-gut instinct on the ADD meds decision! Stimulant medications are amazing, and can produce life-changing results in kids like ours, but a-fib is no joke (my dad has it and has had about a dozen cardioversions, a couple of pacemakers, and a stroke as a result so I am very aware of the potential risks inherent to a-fib) and I think I’d be hesitant in your shoes, too (in my kids’ case, since it’s just the one family member they had the two boys who are on stimulants get clearance from a cardiologist first and the pediatrician examines them in person every three months and listens to their hearts at length, but so far so good, KNOCK WOOD). Be good to yourself and give yourself permission to bitch about all of this when you need to. xox
April 26, 2012 at 5:22 am
Dylan attends a social skills group in South Jersey. It’s at his teacher’s home and is by friend referral only. It’s not covered by insurance but it’s from 6-7:30 Friday nights and includes pizza. Let me know if you are interested and I’ll make the introduction. Sounds like CHOP is on top of things. Did they discuss any genetic testing?
April 26, 2012 at 7:11 am
Oh, honey. Sending you big hugs. (Not to throw another issue at you, but Ddd anyone mention Pica in connection with the pencil eating?)
April 26, 2012 at 12:42 pm
I thought of pica too. Definitely needs a full blood work up to make sure he’s not deficient in some vitamin or mineral. Old school remedies like magnesium (epsom salts in bath helped with tic behaviors in our family) and cold liver oil (omegas and vitamin d) and apple cider vinegar have some merit — mostly unnecessary with a varied, modern diet; but there was a reason people took these things.
April 30, 2012 at 11:04 am
Joann,if you can get the diagnosis there is a center that has a summer program for spectrum or emotional disorders, It is called The Child Guidance Resource Center. Insurance will pay for it.(Medical Assistance loophole Insurance).I am looking into it. Also,I don’t know if you’ve read anything about this but at the end of the year all of our diagnosis’ may be changed anyway. Some lovely person decided to do away with the autism spectrum disorder label and there will be names for everything. So I guess we’ll finally get what we need only to have to start all over again-very frustrating!. Joann,have you tried the autism center on Ford Rd.? They also do evaluations. We are going for another eval at the end of May. We have Chop’s eval of the PDD-nos,ADHD,ODD,but I’m seeking another opinion as there is something more going on.I’m videotaping things this time to bring with me. I know it’s frustrating but we need to hang in there.