Anna update... endo, behavior, and more

Well... yesterday was the worst day yet at school. The principal called me just as I was leaving to pick up the kids and they'd had Anna in room 300 (their equivalent to in-school suspension) since 1:30 or so. I can't even bear to write all the things she did. Let's just say that this child has no impulse control at this time. She knows right from wrong, she knows that she is not supposed to do these things, yet she cannot stop. She is immediately remorseful and sorry. We are now in week three of this behavior. We are having an emergency ARD on Thursday to institute a Behavior Intervention Plan. Yesterday, Anna got a pink slip... a discipline referral which will go into her record. What worries me most is the longterm social impact of her friends witnessing this... will she ever have friends now?

We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.

Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.

After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.

I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?

I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.

Breathe.

Test results from the endo

The endocrinologist called finally with Anna's blood test results and I was sobered by them. Her bone density scan indicates her bone age to be 11 years old (she is actually 8 years, 10 months). Her prolactin and other puberty hormones were elevated as were TSH, insulin, cholesterol and others. Vitamin D was low.

The doctor wants to continue with more tests to further determine how far advanced the precocious puberty is. These tests will include an MRI of her brain to look for structural abnormalities and tumors, an abdominal ultrasound to look at her ovaries and uterus, and more blood tests. She will need to be sedated because of her developmental delays and autism... her anxiety will be through the roof.

I'll be contacting her neurologist and geneticist to see if this gives us any more clues as to what her underlying diagnosis might be as well as to see if they want any additional tests ordered.

I'm heartsick that she will be facing general anesthesia again. I think she's been under at least 7 times already and it always a scary endeavor... I think it's been several years since her last sedation. They will try to do the ultrasound while she's in recovery. I'll keep you posted as to when it will be scheduled. We could use your prayers. Thank you.