Tuesday, October 17, 2017

I hesitate to write an update...

So it's mid October. And it's been a rough school year for the kids. Especially Luke. This is not good news.

I hesitate to write this, because there's so much personal stuff going on with him. Basically 6th grade was a tough adjustment for him--new school, youngest and smallest of the school, new teachers and classes and students from another school. He did make a couple new friends but it wasn't enough to offset the things he can't cope with.

Basically middle school was more than he could process. He started hating school more and more everyday. Mark had a talk with him about what he hated specifically--the noise, the annoying kids, annoying teachers, the crowds in the hall, switching classes at far distances, band, the bus. For one class in particular, we got him into a different class with a teacher who was a better fit. We started driving him to school in the morning instead of riding the bus. I suspect he has sensory integration issues and asked for a referral for occupational therapy.

On top of this, on August 27 he got a bad sinus infection and what we thought was an ear infection. And basically he had severe ear pain for 6 straight weeks. He was on 3 rounds of antibiotics. The dr put him on a steroid bc he thought it was Eustachian tube dysfunction. Luke missed 11 days of school in total from the ear pain.

We went to see an ENT last week. He said it wasn't his Eustachian tubes as our pediatrician thought. Luke has TMJ. His jaw is radiating pain into his ears. I have read other TMJ sufferers' stories similar to Luke's.

Last week he tried to go to school. He got sent home because the teacher said he can't function in class. Tylenol and ibuprofen don't touch the pain. Heat and cold don't help. Nothing helps.

As of right now he's not going to school. We are getting his homework and having him do what he can at home.

He has an appt with a physical therapist this Thursday. And with his dentist a week from today. I also have an appt for him with an OT for an evaluation on 11/1, and a referral to Easter Seals for OT eval, but they take months to get into--Easter Seals is the gold standard for testing and what the schools require if he is going to get an IEP or 504.

So we are really struggling with him and I am so so scared. It's awful to see him in pain. It's terrifying to not know when he'll be able to go back to school or even if he'll be able to handle it. To know we have a long road ahead of us to get his issues worked through. I tell myself it's not cancer or anything deadly and it's going to work out. But it's still so uncertain and I'm struggling dealing with everything.

He is very introverted, sensitive to sounds, touch, smells, doesn't like to shower or brush his teeth, sensitive to certain types of clothes, socks/shoes, limited food choices. Basically I looked through a list of issues for sensory integration disorder kids and he fits a lot of the categories. He's just been coping well enough and we've helped him compensate, until now.

Sophie is doing well in school (1st qtr only got one B, in Chemistry, all As otherwise), but she has been suffering from depression since May. We think it's from her vertigo med amitriptyline, which we are close to having her completely weaned off of. But it has been a slow process to get her off of. And in the mean time she's still feeling some depression. She also gets anxiety attacks at times. She has Ativan for that when she needs it.

We saw a nurse practitioner last week about her options. Sophie doesn't want to start an SSRI, which I'm fine with. She is deciding whether she needs/wants to do talk therapy.

She is in the school play which is this weekend. She has a principal role, not a lead but a good part with several lines and solos. It's been really good for her to have play practice after school every day. She needs structure and to be busy, in order to be happy.

Mark and I never spend time together. We are all work, all kids, no play. It's taking a toll.

I'm so thankful that Sophie has stayed healthy (knock a giant piece of wood!!!) and she is self motivated and has a solid group of friends. I know she's going to be fine.

I know we have to act now to help Luke get his issues healed, or we will end up with a 25 year old playing video games on our couch and doing nothing else with his life. And he is much too smart and kind and loving for us to let him go down that path. I just pray it's not too late.