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.

Neuro and endo visits

I first want to start off by giving a big WOOT to Jenny for getting accepted into A&M Corpus Christi as an Undergraduate Environmental Science major in the College of Science and Technology. And she got a second letter just hours later with an acceptance to UT in San Antonio! I am so proud of you, angel!

Last week, Anna had a checkup with her neurologist. Since she takes Risperdal, we have to monitor her prolactin levels and weight since this medication affects both of those. I've also wanted to talk about options for her anxiety. We actually had a prescription filled for Zoloft before she started kindergarten 2 years ago to treat anxiety but within a few weeks of school starting and having an awesome kindergarten teacher, she did not need it. Anxiety has been a constant presence in her life, sometimes manifesting as aggression, sometimes as sadness, and often you will see her rubbing her upper lip, like in this picture when she was just four years old.



Anna has been showing signs of early puberty, so in addition to talking to the neuro about the anxiety, I wanted to talk about the puberty stuff also. We ended up with the nurse practioner even though I specifically asked for the neuro and even rescheduled a prior appointment just to see him. But I was pleasantly surprised... the NP was wonderful. She noticed Anna's anxiety right off and talked about different medication options. A couple of months ago, we went ahead and tried the Zoloft but Anna developed a tic with it... she would blink her eyes shut really tight and do it frequently. This child always has such a weird reaction to medications. So we took her off of it, waited a week, then tried it again. The tic returned. So that med is out. The NP suggested Lexapro so we got that filled last week. When I picked it up, the pharmacist said that since Anna is allergic to Keppra (an antiepileptic drug), she might have an allergic reaction to Lexapro too. But so far, it's going well. It takes 4-6 weeks to build up enough in the system to notice a difference and she is at less than half a dose, so the change may be subtle.

While we were there, I also mentioned the signs I was seeing of puberty in Anna. Having gone through this with Jenny, I was realizing that Anna was about 2 years ahead of where Jenny was. The Risperdal (by the way, this med is for behavior and mood if you don't know, helping with aggression, agitation, and mood swings) can cause prolactin levels to increase which can lead to early breast development. So we've been watching that for a while. Anna's been on Risperdal for over 3.5 years. The NP referred us to see a pediatric endocrinologist who we met yesterday to talk about the early puberty concerns.

The endo was wonderful, I really liked her. I knew that Anna had gained a lot of weight this year but since the neuro's scale is in kilograms, I haven't really been paying attention. I will admit that I have been overeating and making bad food choices in dealing with my marriage problems and that has trickled down to the kids. Sigh. Still, I was SHOCKED to discover that Anna weighed 66 pounds in May and now weighs 92 pounds. She's also shot up several inches. She's at the high end of the chart for both height and weight but the endo was very, very concerned about her weight. The Risperdal causes weight gain. Actually, for Anna, it causes her to be hungry all the time, and all she wants to eat are goldfish crackers, peanut butter, and orange juice. We have to make some drastic diet changes for her and for the whole family beginning immediately. The endo also ordered a bone density scan to see Anna's skeletal age. She suspects that Anna's bone growth will be a couple of years ahead of normal to compensate for the weight gain. That in turn can cause puberty to start early. So Anna got an x-ray of her hand this morning to see how "old" her bones are. The endo also ordered 18 blood tests. Yes, you read that right, 18 tests. It was 10 or 11 vials of blood and of course they couldn't get the vein in the first arm. After several minutes of poking around in there, they got the other arm to work. Anna coped so well until the blood finally started flowing and then she lost it. It was this wailing weeping sound that tore through me... poor baby. The endo is checking her thyroid levels, lipids, blood sugars (she said that Anna was primed for diabetes if we don't get this under control asap), prolactin, and lots of other stuff too. We should have results in about a week or so.

So I am going to register with Weight Watchers online. I made lifetime membership years and years ago (and 50 pounds ago, lol) so I know what I need to do to help her eat better. But I need recipe ideas. This will be such a hard adjustment for her and I feel awful for allowing her weight to creep up so rapidly. She battles so much already!

I almost forgot... I have a funny story from the neuro visit. I had to take Dominic with us which does lead to a more stressful appointment but I really had no choice. The NP was very kind in dealing with our chaos, our noise, Anna's anxiety, and overall disruption. As we were leaving, Dominic started hanging onto the back of my shirt so I pretended to not know where he was. I kept asking Anna, "Where's Dominic? Where did he go?" And Anna kept saying, "Right there, mommy. He's right behind you!" And I would spin around with Dominic still hanging on and hear lots of little giggles. We made it down one hallway and were at the checkout desk and I was still playing this little game with them. We even got the grumpy checkout clerk to laugh because Dominic's laugh was so infectious. The NP had given them lollipops so they were enjoying those while I was attempting to set up the next appointment (oh shoot, I still need to do that!) and while I was doing the "where is Dominic?" game. Just as another family came up behind us (one with a baby, I might add so Anna starts perseverating on will the baby cry while she is pinching me arm and while I've still got Dominic on the back of my shirt), Dominic chokes a little on his laughter and lollipop. I hear Anna say "Uh-oh" and I turn to see that Dominic has barfed all over the floor and the backs of my shoes. Lovely! The family behind us who was a moment ago just beginning to giggle along with us is staring at the pile of puke and is frozen in their tracks. Anna is loudly proclaiming, "Ewww, Dominic puked. Why did he puke, Mommy?" I ask the checkout girl if they have maintenance or housekeeping in the building to call to help (after all, it's a children's specialty center right beside our children's hospital and I'm sure they've had some messes before, right?), and she says no. Can you believe that? So I begin this sojourn of trips to the bathroom to clean up my son, clean up my shoes, and clean up the floor. Everyone just watches me, no one offers to help, and by the time we were finally cleaned up and checked out, I felt like hours had passed. Wouldn't you know that we ended up on the elevator with that same family? Groan. Anway, now I can laugh about it because it was pretty ridiculous.

I'll keep you all posted about Anna's test results and if the Lexapro works for her anxiety. Thanks for reading!

Talked to Anna's class and her neuro

I am overwhelmed.

I talked with Anna's class this morning while she was out of the room. Her teacher offered me a chance to do it or the school counselor could've come in, but we thought I might offer a more personal touch. I was really nervous and not quite sure which approach I should take. My exceptional women friends that meet once a year for a retreat (moms I met on iVillage when Anna was a baby and they all have children with special needs) made some great suggestions about how to talk to the kids. (Thank you so much, ladies! You have no idea how much you helped and how I felt your support while I was there today.) I made it very Anna-centered instead of talking about just autism and how Anna is different.

I discussed autism, the five senses, how she was born with it, how it affects her. I talked about the things that Anna loves (SpongeBob, AFV, sports, frogs, baby dolls), things that scare her, things that are easy for her, and things that are hard for her. I focused on how she is the same as them. I talked about how Anna (with more emphasis on Anna's brain) reacts to stress and fear. The kids had TONS of questions. I was there for 45 minutes. I ended the session with asking them to share some things they really like about her and how they could be a good friend to her. I think it went pretty well. They are having a hard time understanding why Anna wants to leave class and come home, why she asks the same things over and over, why she pushes/shoves/hits, why she wants a wheelchair so bad, and why she refuses to work.

I told them we are having a hard time understanding too.

Things have really changed this last week. It's tough to realize when you are in crisis mode with your child, how much it consumes you. All of a sudden, your reality is completely different (again) and when you stop to take a breath, you realize that this is really hard and it really sucks. I can't imagine what it's like to be in Anna's head right now. I can't imagine that she can find any kind of equilibrium. Just when I think I have a handle on how to be her mom, something changes, and I really question my ability to parent her well.

There are days when it feels like I'm juggling so much, I don't know if I can keep all these balls in the air. Between Dominic's challenges (setting up OT appointments and arranging changes in his classroom), Jenny's senior year stuff (I think I'm supposed to meet with her counselor Friday to talk about college planning and applications?), my appointments (did I tell you I found a lump in my breast? I'm seeing my GP tomorrow), Charlie the puppy (he starts intermediate obedience class Saturday), being the SEPAC representative for our campus (I'm supposed to volunteer Saturday for a parent summit and be in a mock ARD), and Anna (the list is too long), and all the regular crap (I bought a laptop three weeks ago that I can't get calibrated properly and have spent hours and hours on the phone with customer service, now I have to prepare to send it in for repair)... I'm so overwhelmed. I know what I need to do... take one day at a time, one task at a time... but actually doing this without this internal churning in my head and heart... well, I'm a little lost in it all right now.

Writing does help me. Sharing helps me. Making siggies and such really helps me. So I thought I would put this all out there and maybe get it out of my head. Sorry for the vomit of overwhelms... I appreciate you reading all of that, lol!

I just don't know how to help her or what to do, and that is just so very sad for me as a mom. I talked with Anna's neuro yesterday and tonight we are starting her on Klonopin for anxiety. She historically hasn't reacted well to most medicines so we are nervous. I'm keeping my fingers crossed that it will help her and that she can start to manage and cope again. As I was leaving the school, one of the teachers said that she was worried about Anna... yesterday she was in Anna's class (the administration now has Anna supervised 100% of the time since she is such a flight risk right now) and said that in a split second of distraction, Anna was out the door. I just wish I knew what's going on in that cute, little confused brain of hers.