How did we celebrate World Autism Awareness Day (April 2)? By getting diagnosed with Autism Spectrum Disorder (ASD)!  Yeah!!!

Obviously this is extremely sarcastic.

A couple weeks ago we went to the ENT to discuss adenoid surgery.  We waited 1.5 hours in the waiting room.  Luke was thrilled.  The ENT was very laid back about it saying “yeah we can do the surgery” but it didn’t seem like he felt Luke needed it.  So I was frustrated at his lack of really giving a crap and it was showing by the fact that I was 0.02 seconds away from crying, and I asked “Does he actually need the surgery? We just need to know if you’re going to do an unnecessary surgery or what your plan is.”  Hubs immediately jumped in and said “We feel like we’re being bounced back between doctors and no one is figuring out what’s really wrong.” 

The ENT has probably one of the most important jobs on the planet – he operates on kids with tumors.  So yes, I understand that adenoid surgery is not a big deal for him but this is my baby that we’re talking about.  He clearly sensed the frustration and began asking a lot of questions about therapy, what other symptoms Luke has, what happened at birth, etc. and finally point blank said “He needs to see a neurologist and get the correct diagnosis. I can do surgery but it’s not going to help.”  FINALLY.  Finally a doctor who can say that something more is wrong than a slightly enlarged adenoid.  Don’t get me wrong, it was extremely difficult to hear, but needed to be said.  

I called the sleep doctor and left a message saying exactly this.  His nurse called back saying that he wanted Luke to take Zyrtec, which opens the airway.  We are not giving him medicine for no reason.  I talked to my husband and pediatrician who both agreed.  I called the sleep doctor back and said this, along with saying that I need the correct dosage of melatonin because we’re giving Luke that immediately.  Quick call back, correct dosage, started that night.  After 2 weeks of this, it doesn’t help at all.  Well it somewhat helps him fall asleep faster but that’s not the issue.  He’s still waking up several times a night and/or for long periods at a time.

Last week, April 2, 2014, was his 2.5 year well child check up.  We do like his pediatrician a lot, she was the one who recognized that he has sensory issues.  She is pretty good at following up, I’d say our one complaint is that she’s not proactive enough.  If she were I’d probably complain about that though.  She asked during the appointment what we thought about if it’s ASD and I said it depends on the day.  Sometimes  yes, but if he has a good night sleep he’s a different kid.  His OT has really helped, motor skills are so improved, cognitively he’s at age level, receptive language at age level.  We even talked about potty training soon.  Then my husband said that Luke’s been doing these weird things with his fingers lately.  He was doing it at the time so the doctor got to see.  He crosses them all over each other and looks at them.  So right when she saw that she said, “would it be helpful if I gave him the diagnosis today?”  Meaning that with our health insurance not covering speech, is that what it would take.  We agreed to it, and she said maybe when he’s 4 she’d take the diagnosis away, sometimes that happens, blah blah blah.  

Next we discussed his sleep issues.  Doctor said we need to ask for an MRI and EEG because she thinks Luke may be having nocturnal seizures.  I did some research on this the week prior and thought that might be the case.  If so, he’d have to take anti-seizure medicine.  I think that it could be seizures.  I don’t notice any during the day, but again I don’t know what to look for.  At night though, it’s completely possible.  Poor little guy.  I just want to figure out what we can do to help him. 

I can’t say I’m surprised about anything the doctor said, I think he does enough to where he can be considered on the spectrum.  It certainly does help with insurance.  I was surprised how I felt afterwards though.  I didn’t cry, I wasn’t upset, I was sort of in a good mood.  Weird huh?  Not good as in I’m happy my child has autism, but happy that finally we’re getting somewhere other than he “just has sensory issues”.  I don’t know, it’s such an overwhelming situation.  We even went to the grocery store after and I said to my husband that we got the diagnosis on World Autism Day and he clearly already thought of that.  

Part of me thinks that Luke has been regressing lately.  I think it’s more of a plateau that he’s hit.  He did so amazing right off the bat at OT but now I think he’s caught up as much as he can for now.  His speech is still very worrisome, he’s only saying a few words and only when we ask him to.  Part of me thinks he’s never going to talk.  I just want to hear his sweet little voice.  

The lesson learned here, push and push until you feel that you’re getting somewhere.  All of our doctors so far have been wrong.  Luke doesn’t need surgery.  He doesn’t need to take medicine that won’t help him.  I used to think that doctors knew everything!