Wednesday, May 29, 2013

Appointments

The doctor's office should have a frequent shopper card. Ten visits each month and you get a free pedicure. I would earn it every time! This is the best idea I've had all day... who is going to make this happen for me? ; )

Rylie: Autism Dr. 
The doctor treated Rylie's clostridia (bacteria/ c. Diff) infection with vancomycin. The script is $3,000 a month. Since Rylie has insurance it cost me $70. I think. Insurance didn't want to give me more than forty pills a time, which was a ten day supply. So I kept having to go back and renew the script, fight with insurance, explain to Walgreens, and pay another $30 or $40. Apparently vancomycin is a serious antibiotic; the nurse at Rylie's daycare looked at me wild-eyed when I told her she would need to take it 4 times a day, two of which at daycare. "Wow.  That's... that's usually in IV form...at the hospital." Welcome to my life. 

The treatment was rather scary at first and I considered stopping it after a week. Her diarrhea improved, but then suddenly got worse, with 8 messy diapers a day, and for two days they were dark black. Then they went back to a normal color, but very messy and still 5-8 a day. It was difficult to hang in there for a whole month, but she was a trooper, and by the end of the month you could tell she was feeling better than she has in a while. Her belly is definitely less distended now. Once the bacteria was gone she still had a little bit of a yeast problem, but with regular Saccharomyces Boulardii and probiotics she is now much improved. I don't think we have the yeast completely killed, but it's definitely more managed.  

The nurse tried again to do a catheter for her Organic Acid urine test at the last appointment, and once again couldn't get it in. : (  Poor baby girl. I'm supposed to continue with the cream she gave me to fix that issue. I really want to know what the OAT results are so I'm hoping I can get that done soon.


Rylie: OT (First Steps)
OT appointments are going very well. She is a great resource of ideas and I'm really glad to have her on board. She is working with Rylie to try new foods, brush her teeth and let the brush touch her tongue; use an open cup; play on the playground while other children are there; reduce anxiety; chew her food, move her food around her mouth with her tongue, and use her tongue to lick her lips.

Rylie OT Homework:
  • Lacing toys to practice fine motor
  • stack 10 small blocks
  • imitate a block design
  • imitate pick two blocks of the same color from a group
  • undress baby clothes
  • remove her own jacket, even zipper
  • memory (matching a group of 6 cards)
  • Uno Moo (matching just the same animal or same color, not both)
  • put tongue to right side of mouth and lick food off lip
  • lay food in center of her mouth and get her to move it to the other side, or put it to the back and work on her bite strength
  • does she suck her thumb as she sleeps?  Try to limit thumb sucking if you can, to just nap/night time
  • when helping her brush teeth, avoid the sides of her tongue, this is where she clams up.
  • serving size is 2T per year of each item, or package serving size if smaller. Limit fruits and juices and count sugars.

Hayden: Dentist
Hayden went to the dentist (Indy Kids Dentist) to fill a cavity and seal two spots. We found a great dentist who was very patient with Hayden and was willing to use conscious sedation instead of traditional methods. (Autistics tend to have trouble with sedation). At first his medicine hadn't taken effect, and he wouldn't even let them in his mouth. After about thirty minutes, an hour and a half after taking the sedation medicine, it finally kicked in and he let them do everything they needed. I was extremely grateful to the dentist for allowing me to stay in the room with him to calm and encourage him. She even called the Autism Dr. beforehand to make sure everything she was going to do was in line with Hayden's other treatment plans. I would highly recommend Dr. Stockton to anyone looking for a pediatric dentist in the Indy area.

Hayden Dentist Homework:
  • Work to get him to floss. Start with just flossing between two teeth, work up to all. 
  • Make sure to brush for him on his bottom front teeth, as he is missing these and plaque is building up. He wants to curl his lip over these teeth when he tries to brush them himself.
  • Try to get him to drink water instead of juice between supplements.

Hayden Autism Dr.
  • He is having lots of behaviors lately, especially after weekend visitation. Some of his behaviors are from allergy season, as pollen count is high right now. Add generic singulair, Take zyrtec consistently (5 mg a day), do nasal irrigation (saline rinse), and add quercetin.
  • His ears were red at the appointment; he had just eaten banana cake and apple juice. He may have a phenol sensitivity; bananas and almonds are phenols.
  • Some of his behavior problems are related to yeast, and we need to get it under control before taking the next step which is chelation. Ask Staci (dietitian) about upping his yeast aid dose. Add S. boulardi, move more to SCD diet: zucchini noodles, paleo bread;  if you cook spaghetti squash longer he may like the texture better. Start nystatin for at least a month and continue as you chelate, because chelation can make yeast worse.
  • start chelation in a month; if not doing well after three weeks stop the medication and check for possible vitamin depletion.
  • add coQ10, carnitine, and DHA for motor planning skills and motor strength (opening a door knob, for example, which he still can't do.)
  • continue with the sensory diet to help with motor planning (trampoline, bouncy balls, fidget toys, etc.)
  • research cerebral folate deficiency. Make sure he's getting folinic acid.
  • Have him wear headphones to mainstream class. He is probably reacting to the noise level but can’t verbalize it and instead melts down. Also speak with special class and mainstream teachers about his main triggers, so they will know how to help him avoid meltdowns
  • increase B12 to twice a day, try to get him to hold it under his tongue instead of chewing it, for better absorption
  • increase cortrex (adrenal support) to 2x/day
  • increase vitamin K to 5 drops twice a day
  • change carnitine to liquid so that he'll take it (he doesn't like it in pill form)
  • add vitamin E
  • We should do blood tests again in 3 months.


Are you exhausted yet? I am.  Who's with me on the Pedicure thing??

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