Friday, May 30, 2014

The Big Eye

Judah had an appointment at the OHSU optic pediatric building today. There was a picture of a gigantic eyeball on the wall in the first room we were in. Judah stood and stared at it from about 4 inches away. He didn't seem to know what it was. I told him, "Look at the EYE Judah!" Then he went back to the framed eyeball poster & studied it, petting the thick, stretchy, bloody eye muscles with his little hand. This poster was displayed in every room we walked into there! He would point at it and say, "eye!!"every time he saw it. You'd think that picture would freak kids out. But that was probably one of the most interesting & memorable things about that place for Judah. The only time I saw him standing perfectly still today was when he was studying the eye. We aren't getting him one though.

The other very memorable portion of our optical visit was the eye drops. His pupils grew for half an hour in the lobby while he watched a very LOUD movie on their TV (Cars of course). He stood closely in front of the TV and was told many times by a woman (who worked there??) to step back. She told him it wasn't good for his eyes. I thought her behavior was pretty obsessive as many times as she did it, and kind of disrespectful to us, the parents. But then I remembered we were in a gigantic building filled with people that specialize in treating kids' eyes. I suppose that woman was to be expected. I finally just pulled up a chair for him to sit in. I put it far enough away from the TV for her to feel comfortable, because if she wasn't we were all going to hear about it.

Every room had a screen with different kid movies for the staff to choose from. Judah watched parts of Cars in every single room we were in there, it was insane. And they played it really loud every single time, as if lower volume was prohibited.

The eye drops weren't so bad though, it was quick. I think these people were much more used to this event than the eye doctor we went to months ago. At that place, he was screaming so loud that nurses were walking in offering to help! It wasn't a 10 second process like today by any means.

Judah was supremely hyper all day long. This became very noticeable to me when we arrived at OHSU. The only new supplement he had taken by that point in the day was the Creon, which I need to do more research on obviously. He never tired - and that appointment wasn't easy! There were interns & doctors 2 inches away from his face, talking loudly, flashing toys in front of him, asking him to look certain directions, name objects, stare at a light, constantly holding his head & trying to turn it. I held him on my lap. So I was there, experiencing how they were attending to him. It was so stressful! Not to mention for a kid with autism.. the world moves too fast for children with autism. The absolute last thing an autistic kid needs is for everything around him to be suddenly put into overdrive! They were asking him to perform skills that he could do, but not at that speed and not in that way and he couldn't understand what to do because of all of the completely unnecessary chaos swirling around him. One woman was so loud!!  Their means of examining him had to have been one of the worst ways possible to effectively gain information. He was upset & fighting at times. His behavior was mild compared to what was to be expected of any 4 year old experiencing that kind of treatment. I was very proud of him. Even when his eyes were dilated, he did well.

A kid came to play in the waiting area where Judah was watching Cars. This was the only kid in that area who was about his size, so he approached him, then walked back to his Chex, grabbed one and held it out to the boy.. he even touched it to the boy's lips when the boy didn't immediately take it, ha!

So apparently he has strabismus in both eyes. We've never seen strabismus in the left eye or been told that it is there. It is very slight. They said we could do the pirate patch - which doesn't work, we've tried. Then they suggested the sticky patch, which we offered to try. Nobody felt anywhere near confident that this was going to work though. He would have to wear it 1-2 hours daily. We'll try it for a few days. The eye doctor also faxed in a prescription for eye drops. This was interesting to me - he would take eye drops twice a week into the least affected eye, the "good"eye.  The eye drops cause the vision in his good eye to be blurred for hours. So this would act like the patch, only he would have no means to stop it from working, unless he just kept his eyes closed all day! Like the patch, this causes his weak eye to work harder, improving the muscles & hopefully improving the strabismus. We'll do this through the end of September and then see the doctor again. If it is not successful he will likely be getting eye surgery. She said his vision is good in both eyes. It's crazy all the ways they think of to check vision - ways that don't involve talking or even understanding what the doctor is saying at times.

Bash & Willow spent most of the day with Gramma/Papa. They played miniature golf! I'm looking forward to seeing the pictures. Willow wore a dress with tennis shoes today. She is sooo my daughter, haha. She didn't like the dress shoes we tried on with it - she never likes dress shoes, they aren't comfortable. When I put them on her she always says, "too big!" and quickly removes them.

Willow and I were getting ready to lay down on my bed tonight, so I could put her to sleep. This is our usual routine. I guess I was taking too long because she said, "Put me down. My god. My god." hahaaa!

Sebastian, Daddy, Gramma/Papa went to the Harritt school carnival this evening. Sebastian came home with candy prizes and a great story about how he had thrown bean bags at a big, red target. He dunked the principal! Scott showed me pics of this - so funny!!

When Gramma/Papa left tonight, Judah had a big meltdown. Usually I'm the one leaving when he is having this kind of a meltdown. This was the first time I had experienced the meltdown that happens when someone he loves has to go. It wasn't easy. And as he is getting so much stronger & bigger! It was definitely much more of a challenge physically. The iPad was our saving grace. I tried many things! Willow also became upset because her swing set play was abruptly ended. When I offered her a bath she became happy again.. but Judah found it terribly upsetting that she was taking a bath, he was crying & trying to put her clothes back on her while I was undressing her!

The Sebastian night time craziness is definitely boiling down. There is some here & there, but I really think it just stems from his habit of expressing that behavior. that  He laid with Willow & I tonight. I read them a Dr. Seuss story, one of Sebastian's favorites.. What Was I Scared Of? It's about a pair of pale, green  pants with nobody inside them!

We tried doing some of Judah's new meds today. One bm, small, soft.

I'm going to start posting his med list at the bottom of each page & separating what he did & did not take each day. See below. Scott was a HUGE part of getting these done today - the new med responsibility didn't scare him at all!


  • Probiotic (currently Lichi Super Fruit, Super Probiotic)

       1 caplet every morning

  • Vitamin D3 2000 IU

One daily (every morning)

  •    Levocarnitin 10% (L-Carnitine 1g/10mL)
            1 Tablespoon (15 MLS) every morning


  • DOCU 150/15ML Liq Hi-Tech (generic for Docusate Sod 100MG/10ML)

     2 MLS by mouth twice a day


  • Methylcobalamin Injection 20 mg/ML (b12)

      .05 ML daily (every night)

Administer B-12 daily for a week (May 30, 2014 is 3rd day.) Then add folinic acid .05ml to each shot.


  • Bethanechol 25 mg

   ½ tablet twice a day


  • Oxy-Mag powder

     ½ teaspoon once a day


  • Sleep Factors                                    

      1-2 pills nightly


  • DMG 125 mg w/Folinic Acid & Methyl B-12 (Kirkman brand)

       3 capsules every morning

  • Creon (Pancrilipase)

  • WP Minerals

       1 tablet daily

  • Miralax
1-2 times a day (had once today)

  • Clindamycin Phosphate Lotion  (Generic for Cleocin-T)

Apply a thin amount to affected area twice daily for two weeks. Then apply twice weekly as needed.

  Didn't complete all doses:
Neo/Poly/Hc Otic  (Generic for Cortisporin Otic)

Instill 4 drops into affected ear 3 times daily for 7 days. (only did 2)



Meds not completed:

  •  Arctic Cod Liver Oil (Nordic Naturals)                                                    
          380 EPA/510 DHA                                                                          

          8 Fluid Ounces/237 mL                                                                               

          1 teaspoon daily
  • Powder B-6
Mix 1 teaspoon powder B-6 with 5 oz. water. Give ½ teaspoon from this mixture every 3-5 days.

  • Beta TCP

1-4 daily (for constipation)


  • 1 teaspoon Black Strap Molasses in almond milk


  •  Organic coconut butter
1-3 teaspoons daily
  • IronUp 
1 teaspoon daily

As needed:

Child enema (after more than 24 hours no bowel movement)

Suppository – We usually go straight to enema.

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