MRI, Neurology (all Nathan) … Endocrinology added (Nathan)
Sorry I didn't update right away last night (written 4-18).... I was so tired :( I still ended up being awake until almost midnight.
Anyway .... we left the house at 6:45 am ... getting to the clinic at 8:30...walking back out the door at 5pm, getting home at 7pm. Oye!
We got there and Nathan got the Cloral Hydrate ... and thankfully did NOT need an IV this time. It took awhile for him to go to sleep but he finally did. So off to the MRI he was whisked while Dennis and I got sandwiches - then went back up to the room. It wasn't very long after we got back up to the room 40 minutes later or so that he came back into the room. While the nurse was doing something, he woke up - hates being messed with. She had put some patches on his arm to help numb the skin just incase they had to do an IV and for the blood work that had been ordered. So after she gave up and realized he wasn't going to pass back out, Dennis and I got up an were talking to him. Lab came up and Jenny (our sedation nurse) asked if they had all the orders. Apparently it wasn't just genetics ordering tests, but neurology too. Then it came to light that - our appointment with neuro had gotten switched from 1:45 to 11:30 ... well... Nathan was still in the MRI at 11:30... so since he didn't show, and they didn't call (not knowing that the appointment had been switched) ... then he got marked as a "no show" and the labs were taken out. (rolling eyes, what a mess) ... so after we got all that situated, Nathan got poked AGAIN for the neurology labs.
After Nathan woke up, we were basically told we'd have to go back to our original appointment (the DR had a conference or something until 2) ... so we walked up and down the hall outside of Neurology while Dennis sat in the playroom with Nathan ... Kaedyn was tired, was the only way I could get him to go to sleep... so after he did - it was a little bit before we got called back.
Basically - Dr. M said that the MRI came back good - there was no signs of hydrocephalus and his Dandy Walker was still stable (whew!) but when she had run the labs, checking his hormones and other stuff... his thyroid level came back showing hypothyroidism, but since it was just one blood test, and slightly elevated, she wasn't sure if he actually had it and it can be a sign of migraines (which we have been suspecting) ... so she decided that she wanted us to see the Endocrinologist right away and talk to him about the Growth Hormone and so he could keep an eye on him starting the migraine med that she was going to start him on. She decided to go with a med that one of the side effects is to make you more hungry, and hopes he gets that side effect. He's starting out at a tiny bit once a day for a week, then the same tiny bit twice a day for a week, and then the following week doing it three times a day which is where we'll be at. She wants me keeping a migraine diary for her too, for him. So I asked her about my suspecting Autism and when I handed her the list I had made up, she nodded in agreement and said, she agreed and he is showing a lot of key symptoms. So she was putting in for an assessment at the Autism clinic - which will take a few months to actually happen. So I'm going to keep that diary along with his migraine one. She called Endocrinology and we couldn't see him until 4pm - so, we were stuck there for awhile longer.
Made some phone calls and then settled down for another long wait. Once we got called back, he did a bunch of measurements said that even though it doesn't look it, his head is larger for his frame and he really does fit the symptoms for Russell Silver Syndrome (which is one of the things that genetics is testing him for but we won't know the results to for several months) ... anyway - he said based on what he was seeing, he thought that Nathan would be a great candidate for Human Growth Hormone. He wants to do further testing for the thyroid issue to see if that is a true thing, or if it was just a fluke today... and some other testing, and then he thinks in about 6 months, odds are, we'll be starting it.
After Nathan woke up, we were basically told we'd have to go back to our original appointment (the DR had a conference or something until 2) ... so we walked up and down the hall outside of Neurology while Dennis sat in the playroom with Nathan ... Kaedyn was tired, was the only way I could get him to go to sleep... so after he did - it was a little bit before we got called back.
Basically - Dr. M said that the MRI came back good - there was no signs of hydrocephalus and his Dandy Walker was still stable (whew!) but when she had run the labs, checking his hormones and other stuff... his thyroid level came back showing hypothyroidism, but since it was just one blood test, and slightly elevated, she wasn't sure if he actually had it and it can be a sign of migraines (which we have been suspecting) ... so she decided that she wanted us to see the Endocrinologist right away and talk to him about the Growth Hormone and so he could keep an eye on him starting the migraine med that she was going to start him on. She decided to go with a med that one of the side effects is to make you more hungry, and hopes he gets that side effect. He's starting out at a tiny bit once a day for a week, then the same tiny bit twice a day for a week, and then the following week doing it three times a day which is where we'll be at. She wants me keeping a migraine diary for her too, for him. So I asked her about my suspecting Autism and when I handed her the list I had made up, she nodded in agreement and said, she agreed and he is showing a lot of key symptoms. So she was putting in for an assessment at the Autism clinic - which will take a few months to actually happen. So I'm going to keep that diary along with his migraine one. She called Endocrinology and we couldn't see him until 4pm - so, we were stuck there for awhile longer.
HGH is a daily injection so that means that Dennis and I will have to learn to give it to him.
At this point..... I really just want to know what else this poor kid could have wrong.
And it's driving me insane that when I was pregnant with Noah and we found out about his MT16 I was told he would be so mentally and physically delayed it wouldn't be worth it, and was basically made to worry - and with Nathan, when they discovered the cyst and 2-vessel cord at the 20 week ultrasound, they told me "not to worry" that "everything would be fine" ... and now he has this coming up and that coming up and more diagnoses and more things going on then Noah EVER had. Noah was in the hospital more, but I feel so bad for Nathan.
When we tried to pick up the medication for his migraines - we were told they had to order it, so we asked them to send the prescription to the pharmacy at home, and we'll go through them.
Basically - that was it. By the time all that was done I had two very tired babies...
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