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.

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  • Heather C - (((Holly))), that is such a lot to deal with all at once. I feel so bad for Anna. You know reading all of that I was just thinking how crappy and jittery I felt when my thyroid was high and how much hormones can just make you feel horrible and I wonder if the behavior has something to do with that. With all those things going on in her body, she has to be feeling it a bit.

    You are such a good mommy and I know it is tough right now but I know you will dig in there and figure it out. Hang in there kid.ReplyCancel

  • Heather - Wow Holly 🙁 Poor Anna, and poor you! I totally know what you mean by the whole "academics are secondary in school goals" Cause that's exactly the way we feel right now with Avery.ReplyCancel

  • Carol Askew - I'm so sorry to read all this Holly. Survival mode, one thing at a time, sucks, but is the way to do it. You will get through this – you are so, so strong. I am praying that very soon, you will see improvements. Good luck, hugs, prayers…ReplyCancel

  • Elena:) - Hang in there, Holly. You are so strong and inspirational. Things will get better:)ReplyCancel

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