In addition to Brooke having her ear surgery today, Caleb had his appointment with Dr. Ohling at the Wellness Clinic this afternoon.
I got a phone call on Monday to tell me they received his blood work results back. Caleb's IGF 1 (Insulin like growth factor) was at 245. It's difficult to determine if this is good or bad. There is something called the Tanner Scale. Tanner Scale refers to sexual development. Tanner Stage 1 happens anywhere from ages 8-15. Tanner Stage 2 :3 happens anywhere from 8-16. Tanner Stages 4 & 5 happens anywhere from ages 11-18. If you are in Tanner Stage one, normal IGF 1 levels range from 52-391. If Caleb were in this stage, his levels would be normal. Tanner Stages 2 & 3 IGF 1 levels range from 39-648. If Caleb was in this stage his levels would still be normal but very low. Dr. Ohling says he's ok with putting Caleb on the Semoralin (that amino acid that acts like human growth hormone) because he still isn't growing even though his numbers are in the normal range. After talking about this and looking over Caleb's info Dr. Ohling said that Caleb's BMI is 16.73%. I asked what it was supposed to be. He said that the cut off for underweight is 19%. This means he is officially underweight.
After further discussion, Dr. Ohling learned that Caleb takes metadate for his ADD. Two common side effects of metadate are anorexia and loss of appetite. It's interesting to note here that Caleb actually eats better on the metadate than he did on the vyvanse. He had nearly zero appetite on the vyvanse and that was one of the reasons we switched medications. Dr. Ohling said that what the ADD medication does is create dopemine (and another chemical I can't remember what he said) and it keeps them in the body longer. Tyrosine is what the body uses to create dopemine. Tyrosine also helps create neurotransmitters in the brain that help calm the ADD as well. Dr. Ohling asked if Caleb is getting 8 hrs of sleep each night. I told him it totally depends on the night, but more often than not, no. We send him to bed at 9:30 pm. Often times he is up and reading until midnight or 1 am. He wakes up anywhere between 6:30-8 am depending on the day. (Can you tell he keeps his mother's schedule?) Dr. Ohling made the point that if he's not sleeping, he's not going to grow as well either.
So, what do we do?
We have ordered the Semoralin. Semoralin is similar to the human growth hormone. It doesn't have the side effects that the hormone does because it is a chain of amino acids that your body makes anyway. It's also much cheaper than human growth hormone. Growth hormone can be as much as $5k/month. The prescription I paid for on the Semoralin was $300/month. Mind you, insurance covers ZERO of what we accrue at the Petersen Wellness Clinic because it's all classified as homeopathic. Stupid insurance. The Semoralin has to be injected into the stomach every night. he will start with .150 mL's. We will have to probably mess with the dosage. Typically he gives this to adults and not children so the dosage is going to be a bit tricky. It's also going to take a few months to see if it's making a difference. With the injections, you use an insulin needle so the needle is tiny. I already know that this is going to be a battle for the first little while. I'm crossing my fingers he's good and I can do this quick and not have to sit on him!
In addition to the Semoralin, we have added Tyrosine supplements. This should help him sleep (Hail Mary!) and it should help with his ADD (another Hail Mary!). I'm not planning to take him off his ADD meds any time soon. Typically those meds wear off about 4:30-5 pm. I should be able to tell if it's working or not because nights won't be such a nightmare!
We are ALSO doing a B complex vitamin. This will give Caleb the energy his body needs for the Tyrosine to make all the neurotransmitters.
Dr. Ohling is also going to give me a recipe for some protein shakes to make for him to try. I couldn't get him to drink the premade ones I bought when he was in first grade. I couldn't ever get him to eat the protein bars either. This should be interesting.
In addition to the appointment with Dr. Ohling, I got a call from the nutritionist at the Budge Clinic telling me she had a message from Dr. Sandgren (pediatrician) wanting her to set up an appointment with us to see Caleb. I had already scheduled an appointment for March 29 to go see her. I started talking to her a little about Caleb and told her it isn't that he doesn't eat, it's more along the lines of there's only about 12 foods the kid will eat. She said it sounds like he's got more of a food aversion issue than anything else. She told me that there's a food clinic here in town she helps do and it's currently booked out through the end of April (surprise, it's super hard to get into and there's a massive wait list). She said that she's worked with the Failure to Thrive Clinic at PCMC and has learned several of their tricks as well. She kept our appointment on March 29 and told me to remind her of all the things we talked about tonight. It sounds like this nutritionist is going to be much better than the one we went to a year or so ago! She told me that if she can't help him she can definitely refer him to someone who can. She also mentioned that often times this food clinic and the Failure to Thrive Clinic trade patients back and forth. Sounds like we may make a journey to PCMC eventually anyway. Oh well, if it helps, I'll do it!
And thus, we begin a new chapter for Doobie!
Thursday, March 16, 2017
Posted by mistybown at 10:32 PM
We had taken her in 2 and a half weeks ago and that's when we set the surgery up. We went back two days later because she had a bunch of drainage coming out of her left ear. Turned out she had puss oozing out of her tube (the tube that was supposedly completely non functional). She was put on a z pack and we were sent home to continue drops as well. I was crossing my fingers there wouldn't still be infection in there today.
B was really good and totally brave when we check in and went back to outpatient surgery. She knew what was going to happen and had her Grandma Butter blanket with her ("mine"). When the anesthesiologist came in she started to get a bit nervous. When I tried to walk out with her I knew she was going to cry. When I tried to turn her over to the anesthesiologist she took about two steps away from me and realized I wasn't coming and ran back to me crying. She was scared and didn't want to go. I convinced her I would see her in 20 minutes. The poor anesthesiologist had to pick her up and carry her to the OR! She didn't wig out completely, but she totally cried.
About 20 minutes later Dr. Blotter came in. He said that when he made the incision into the right ear (the one that was severely retracted) it did really well. There was still a lot of infection in the left ear. He said that the tube was in fact non functional. He said that the ear wasn't "a pus volcano", but there was still a lot of junk in there. Just imagine if I hadn't gotten her on antibiotics two weeks ago! He ended up using a titanium tube - those are the ones she's done the best with. He also only put one tube in each ear. I'm hoping that doesn't come back to haunt us. He said that he chose to just do one because it's less risk of perforation and having to go in and do a fat graft later. He also feels like since she's older and has done so well for so long that perhaps she may do better this go round. We shall see! She has a follow up on March 29th. I'm crossing my fingers we don't have to unblock a tube!
When she came out of recovery she didn't cry or whimper at all! She was SO good! There were a few tears, but no screaming or major crying at all! She did get a bit nauseous a couple times. I was surprised that she complained more of the right ear hurting than the left. Dr. Blotter did say he flushed that left ear out a good couple of times to be sure he got all the infection out. We were able to go home at about 11 am (surgery was scheduled for 9:15 but she didn't go back until about 9:40).
When we got in the car Travis asked her if she wanted to go to Angie's and she said no. I asked her if she wanted to go home and she said no. I asked her what she wanted and she said, "I want to go see Grandpa Scott." So, we drove to Grandpa's office and she had about a 30 minute visit with Grandpa. Grandma Terri stopped by later and brought her a stuffed animal (she loves them and can't ever have enough). She's done so well today you'd never know she had surgery! Hoping it's still like that tomorrow! If it is, I may just send her to school so she doesn't miss centers!
Posted by mistybown at 10:12 PM