The ortho visit

Early in spring, Anna had a checkup with the pediatric geneticist. At that time, she noted some kyphoscoliosis in Anna that she wanted checked out by an orthopedic doctor. It was a six-month wait to get into the Specialty Care Center at Dell Children's Medical Center and today was our appointment. They said to expect the appointment to last 2-4 hours! Wow. So we packed up a ton of stuff to keep us entertained. Anna was just excited to leave school early. :)

The clinic is located inside of the children's hospital. We had to park way out and then find our way through the maze of the hospital corridors only to discover that the clinic's entrance is only from the outside of the hospital on the rear side. Oy! What an ordeal just to find the place! Then we had to sign in just to get registered and the place was packed. There were many very involved kiddos waiting to be seen and Anna is both fascinated and scared by kids who are nonverbal and in wheelchairs. She doesn't realize how to interact appropriately and definitely made a few moms uncomfortable with all of her questions. Ten minutes later, we were called to check-in then we had to wait again to be called back. By the time they came for us, Anna was starting to withdraw and had her hands on her ears.

They first wanted x-rays. That surprised me and I didn't have a chance to prepare her. But she handled it very well and the quiet of the x-ray room was a welcome respite from the chaos of the lobby area. Unfortunately, we had to go back to the waiting room to be called into an exam room. That whole process took another 30 minutes.

Then it was blood pressure, weight, height, exam room... where I then had to fill out yet another info sheet on Anna's history. A nurse practitioner came in and began asking the same questions that I was writing (so frustrating, don't you think? Why isn't there a central repository database with each individual's patient's history, medications, and allergies?). Then we waited for the doctor. And waited. And waited. Thank goodness I brought my laptop with a Max and Ruby DVD for Anna. We also brought snacks, Audrey (Anna's favorite baby doll) with her assorted accessories, and some other activities. We even ended up turning on the TV at one point. We waited almost 2 hours for the ortho to come in.

When he shows up, he doesn't introduce himself, he doesn't apologize about the wait, he just starts asking me questions. Anna pipes up, "What took you so long?" I could've kissed her! That's my girl! Ha! He dodged the question and reviewed her history. He said the x-rays showed a slight scoliosis, 6-7 degrees, and a mild kyphosis (hunchback). Between her hunching and her lordosis (swayback), her hyperextended knees are worse. But none of these issues are worrisome yet and the ortho recommended that her pediatrician follow her and if they get worse, to come back in. He also noted some mild (+2?) clonus in her ankle and foot. I'm not sure exactly what that is... I think tightening? So we arrived at 12:30 and left at 3:30 to spend 10 minutes with a dismissive ortho... typical.

Anna was so stressed by the time we hit the highway, she was asleep. Bless her heart.

Introducing a new friend, Mimi

On Sunday, we had the privilege of attending a special fundraiser for a special little girl, Mimi. Mimi is 10 years old and lives very near us. She has a rare chromosome disorder called 9 p minus syndrome which causes sensory issues and daily seizures. Mimi's mom, Shannon, is trying to raise money to get Mimi a seizure-alert dog from 4 Paws for Ability. The cost of this service dog is $15,000 and could potentially save Mimi's life. The family has raised $3,000 so far and our family wants to get involved. After their goal is reached, Shannon is going to start a foundation to help other families get service dogs.

When Anna and Mimi met on Sunday, it was an instant connection. Both girls wanted to have a playdate immediately so I gave my contact info to Shannon and was thrilled to hear from her yesterday. Our families are going to meet in San Antonio on Friday to go to Morgan's Wonderland, an amusement park for special needs children. I feel so fortunate that Anna's seizures are so infrequent now and really want to do something to give back all the love that has been sent our way. I still hope that Charlie, our Labradoodle, will alert to her seizures, especially in the middle of the night, but also hope Anna continues this long streak of being seizure-free.

If this story touches you, please consider donating to Mimi's family. Even $5 or $10 can make a difference. The local news attended the fundraiser and covered the story with a short segment: Fundraiser hopes to buy service dog for Austin girl.

To learn more about Mimi, visit her website, Help Mimi. Thank you so much for getting involved!

Way Back Wednesday, the search for a diagnosis

We spent the morning in the cardiologist's office for an echocardiogram and EKG on Anna. The geneticist wanted to make sure the connective tissue disease we have in our family isn't affecting her heart like mine (I have a mitral valve prolapse). The echo and EKG were normal so that is one more thing checked off the list. It made me remember when Anna was 3.5 and had started having seizures. I was wondering at that time if we should continue searching for a diagnosis... when we get a new symptom, I always struggle with this decision. How much trauma do we put Anna through and how invasive do we get in order to find out what she has? Here's a post from 11/29/04 on iVillage's Child Hypotonia board:

~~~~~

DH and I are considering opening up the diagnosis search again. Anna had another seizure on Friday (this makes 6 tonic-clonics total, 5 since the end of September). With this new label of epilepsy, it adds a new piece to the Anna puzzle. Could a geneticist now look for something that hasn't been looked at before?

Finding an answer wouldn't change how we are managing Anna's care, except for the seizure control piece. (I'm going to start a separate thread about that.) It would help us know what to expect (what we all are wishing, right?) and maybe help us find more balance in our lives than we currently have.

It means that we would need to seek out someone with more experience or expertise than the folks we've been dealing with, because they've all said, "I don't know." It means maybe putting Anna through more invasive tests. It most likely means that we still won't have a diagnosis at the end of it all.

Her symptoms include: epilepsy, hypotonia, microcephaly, global developmental delays, sensory integration dysfunction, high myopia (-7.5 rx), failure to thrive (resolved at age 3), feeding and sleep issues.

She has tested negative for: metabolic disease, mitochondrial disease, Rett Syndrome through MECP3 gene, Angelman Syndromethrough methylation and UBE3A sequencing, chromosome analysis, glycosylation defect, and 7-dehydrocholesterol. She has had two normal MRIs and EEGs.

I wanted to get your opinions, advice, cautions, and two cents. It seems like with the seizures happening more frequently, SOMETHING is going on, we just don't what. Is the epilepsy a symptom of a syndrome or just plain ole epilepsy? Obviously, we need to control her seizures... more about this in my next post. I need a reality check. Thanks.

Holly and Anna, 3.5, no dx.



~~~~~

I have a whole slew of new tests that she's tested negative for but I would still like to know. Thanks for reading.

Rough week

Thursday afternoon, the phone rings. "Hello, this Holly," I answer. "Hi, Mrs. Thomspon, it's Mrs. C, the assistant principal. Anna has had another really rough day and we are required to report to you what has happened." My stomach sinks, and I feel deflated.

Again in math resource, a meltdown. It started with Anna tapping some blocks on a table. It was disrupting the small group. The teacher attempts to redirect reminding Anna that the manipulatives are used as a tool not a toy. She continued to tap the blocks then started banging them. The teacher warns Anna, then she just escalates. The teacher had to removed the children from the room (again), call for help (again), and by the time Mrs. C got there, she had... and I quote... "destroyed the room."

I exploded. "Destroyed the room? That is very strong language. What exactly do you mean by destroyed the room?" I could feel my pulse beating in my throat. Well, she backpedaled, no property was permanently damaged. But any item within her reach was thrown. She had even upended a table and chairs. I was horrified. First that my usually sweet little girl was this enraged and second that the teacher had been unable to prevent this level of destruction and rage. I felt like saying, "WTF???"

I got angry. I admit it, I was mad and embarrassed and wanting to blame someone. So I first got angry with the teacher. Maybe she wasn't recognizing Anna's triggers and intervening in time. Historically, this particular class and this particular teacher have been a problem for Anna. She has a behavior chart that follows her around throughout the day; she can earn up to 3 apples per subject and if she gets 20 or more apples at the end of the day, she gets to choose a prize from the prize box. Looking over this chart for the year, you can see that Anna has good days, earning 3 apples in all subjects except math. So it makes you wonder.

As I continued to talk with Mrs. C, I also mentioned that at Anna's ARD last month, math was the only subject where Anna did not make any signficant progress. This is definitely an academic area that is extremely challenging for her. That got me thinking... maybe it's the subject, not the teacher. Maybe it wouldn't matter who was teaching math to Anna, she would struggle with it. If something is difficult to grasp, it would be hard to stay motivated to perform in that subject.

Feeling a little chagrined, I mentioned this thought to Mrs. C. I offered to come observe Anna in math to see if I could spot anything that could be done differently. But Mrs. C pointed out that all week last week, Anna struggled in all areas, not just math... math was just the tipping point. We did see similar behavior at home. She would get fixated on wanting something unreasonable, we'd say no, she's get angry calling us stupid, throwing things, being completely oppositional. She refused to listen, go to timeout, do anything we asked, etc. She even hit me on Friday. She is in crisis. She is crying for help.

I called the endo's office Thursday after getting off the phone with the school. I finally got a few answers about Anna's blood work but no real answers. Her TSH is elevated, her prolactin is elevated. Her abdominal ultrasound showed her to be in pre-puberty. They want to repeat some labs next week then we see the endo on 4/13. I don't think her hormones and body chemistry could be causing these major behavioral incidents. We talked briefly about the Risperdal... should her dose go up? Is she overmedicated with the combination of that and the Lexapro? Is she actually bipolar like we've been wondering since she was 3? Have these been bipolar mood swings and rapid cycling? In the car on the way home from school, Anna was raging at me because she wanted to see a girl in her class. I had to pull over and put her in the back row of the van because she was throwing things at me while I was driving and kicking the back of my seat hard enough to make me jerk. I stayed totally calm and dispassionate while I moved her. I ignored her. Within 10 minutes, she was back and normal. ???

(I have to also mention that Thursday's folder brought TWO notes home for Dominic for bad behavior, both requiring student and parent signature to review expectations. Sigh.)

Then after those two phone calls, the math teacher calls. She is lovely. Concerned, appropriately worried, and wanting our input. The usual strategies are not working to help Anna. (Yeah, we can relate... we're experiencing that at home as well.) I feel guilty for blaming her. It's hard to trust that the teachers will like Anna when she is being so hard to like. I want to protect her. I also feel embarrassed by her behavior and feel it's a reflection of my parenting. I want to explain away her behavior, to have it make sense. But I also want to hold her accountable. In the end, it doesn't matter what is causing this acting out... it is unacceptable and cannot be tolerated.

This weekend, Curtis and I talked a lot about Anna. Is she being bratty and can control her escalating behaviors? Is she out of control? How do we hold her accountable? We kept with consistency... she lost privileges, she went to timeout, we praised good behavior, etc. It is so hard sometimes, especially when we don't know what is causing these dramatic mood swings. Everyone on Anna's team at school is worried. Sometimes these shifts precede a seizure or cluster of seizures. Is she neurologically off? Is it medication related? Is it bipolar? Is it hormones? Frustration? Should she see a psychiatrist? Is it that Anna and I moved back in a month ago and she is having a hard time with that? A combination of these? WHAT???

There are no answers. No one knows. No one knows what she has or how to best to treat her. We just deal with each symptom that is screaming for priority at the moment. I hope we are doing right by her.

Calls

This morning the children's hospital called asking that I bring Anna back in for another blood draw. Apparently they outsourced some of Anna's bloodwork from the February MRI visit and they are missing a cortisol level. After our visit with the geneticist last week, I called the endocrinologist twice to find out what the "highly abnormal" blood test results were and they kept saying they were waiting on one more test to come back. I guess it was never drawn or the results were lost, I'm not sure. So I have to make Anna fast tomorrow morning and take her in for another blood draw. Ugh, poor thing. She gets nearly hysterical and I hate putting her through that. Well at least we can get the genetic blood tests done now instead of in April... I have the orders for the Fragile X DNA test and the fibrillin DNA test so I'll take those in with me. I wonder how long we're going to have to wait on the cortisol and the genetic results. The endo doesn't want to talk to me until she has "the whole picture"...

I also received a call this afternoon from the assistant principal at the elementary school. Anna had a meltdown in math resource and Mrs. C had to intervene. When she got to the classroom, Anna was lying prone on the floor and there were books and papers strewn about the room. The other students had to be removed. Anna refused to go to the processing room, so Mrs. C took her to the office. She had to have a timeout but kept having to have it restarted for getting up. She kicked Mrs. C 5 times in the shin, hard enough to bruise. She was calling the staff and students "stupid" and being mean, belligerent, non-compliant, and hostile. Sigh. What is going on with her?

Pediatric geneticist visit

I got a call yesterday reminding me of a visit with the geneticist for Anna this morning. Ugh! I did NOT have that appointment on my calendar so I'm glad they called. I don't know if you all remember but before Anna's MRI and ultrasound last month, I tried and tried and tried to get into to see the geneticist before the procedure. I thought these new symptoms might give Dr. I another clue as to what is going on with my baby girl. We did get an appointment set up only to have the doctor cancel it due to illness so we did not get to see her prior to the MRI. I totally forgot that we had rescheduled it for today.

Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!

So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).

It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?

The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.

Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.

We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.

The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.

On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?

Behavior

We have a new behavioral specialist working with us through Integral Care (formerly MHMR). Her name is Kathy and I'm really impressed with her. She came to the house last Friday and did an intake interview with me... she was so thorough! Three hours later, I think she had a good handle on what Anna's challenges are and what we are looking to get out of our time with her. Initially I had wanted a behavioral specialist to help Anna and Dominic get along better... Anna is constantly rejecting him because she is afraid of him. He is loud, unpredictable, and causes her to be on guard all the time, anticipating the next boo-boo or screech. As he gets older, this gets better and Curtis works with him coaching him how to lower the intensity around Anna. At the same time, I hate that he already feels a sense of responsibility when he does cause a meltdown in her. Anna and I are continuing to live at my mom's house, 2 doors down from our house, while Curtis and I figure out how to put our marriage back together. What has been interesting is that both kids have had big developmental gains living in separate houses. Both kids are more independent, more competent, listen better, and overall seem happier. Sigh. What does this mean for our family?

Anyway, Kathy really helped narrow our focus to create some concrete goals. Kathy is going to observe Anna at school next week and she was also here on Monday for an observation. First off, she said that in a typical family, an 8-year old girl and 5-year old boy would not be getting along or playing together all the time. So to expect a socially-challenged, play-skill-delayed child to want to engage with her brother is just unrealistic. What we should be focusing on instead is helping her self-manage her anxiety and stress. These skills will help her more in a variety of settings and situations, help her be less dependent on me, and help her in the future as she gets older and the stresses get more complicated. So how do we do this?

We are already doing a lot of behavioral supports in the home. But I need to be more consistent with them, such as using the timer to increase independent play and using the sticker chart with rewards for positive behaviors and chores.

Kathy suggested social stories... where we create short, homemade books that we can laminate and have Anna carry around. Each social story can be about something very specific, like going to the grocery store. We use Anna's picture in it and review it with her before the outing. First we identify the stress... awareness and acknowledgement of the behavior, then we give her the language (stress looks like, sounds like, feels like) and triggers, then the strategies for coping (take a break, set a timer, reward, etc.). I think these will really help with specific, targeted behaviors during predictably stressful situations.

She also suggested videotaped interactions where we video Anna to show her the anxious behaviors to start to teach her to recognize them in herself. Then we give her tools for coping. Anna loves watching herself on TV, so I need to charge up the camcorder!

Kathy recommended some books, which I've already ordered from Amazon. These include:

~Don't Pop Your Cork on Mondays!: The Children's Anti-Stress Book by Adolph Moser
~Incredible 5-Point Scale -- Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron
~Building Social Relationships: A Systematic Approach to Teaching Social Interaction Skills to Children and Adolescents with Autism Spectrum Disorders and Other Social Difficulties by Scott Bellini

To build Anna's relationship with Dominic, we start by setting up some playdates with an older girl or two (and we have the perfect girl in the neighborhood, she is mature, sweet, and patient with Anna) that have a timed structure with a beginning, middle, and end. Once Anna is comfortable and engaged with this level of play, we introduce Dominic into the play for a short time. Hopefully, she will be willing to play once she realizes that it's only for a set amount of time.

I'm feeling optimistic about helping Anna. We are still giving the Lexapro a try though I'm not sure I'm seeing a signficant difference in her overall anxiety level or coping. I'd love to get her off of the Risperdal since it's caused so many other issues... I'm thinking that if she's not anxious and stressed all the time, she won't be as aggressive so she won't need the Risperdal. Though we forgot to give her the morning dose of Risperdal last Wednesday and she was not a happy little girl. She's getting big enough that her hitting hurts.

Anna's MRI and other testing has been scheduled for next Tuesday, February 23rd. We have to be at the hospital at 5:45 am. *Yawn.* I really appreciate any positive thoughts and prayers you can spare. We had an incident this weekend where I thought I saw some seizure activity and it is just so yucky. It's been since the 4th of July last year for any seizures, I hate that even after all this time, I'm still on guard every minute.

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.

Reflections

It's that time of year when we all look back, take stock, make resolutions, and move forward. 2009 had its ups and downs, and overall I feel very lucky in many ways. I am curious about 2010... I have a sense that big changes will be coming.

2009 brought Jenny to her senior year of high school. It's hard to believe that this time next year she will be away at college. Wow. She has been accepted at all three of her top college choices and I think she'll be attending A&M at Corpus Christi to study marine biology. I am so proud of her and the choices she has made. She doesn't drink, do drugs, or stay out late. Jenny and Chris wear promise rings indicating their choice to wait until marriage to take that next, big step in their relationship. She has chosen such a nice, young man in Chris. He is wonderful and treats her with respect.

Anna has had a very good year. Her seizures are more and more infrequent and she's even made it through a few fevers without seizing. She continues to make steady progress in 2nd grade and really responds well to the smaller educational setting offered to her in Resource. She is currently battling anxiety and weight gain (from the Risperdal) and we are making healthier food choices and getting more activity into her daily routine.

This year Dominic started kindergarten. After a rocky start, he has settled nicely into the routine of school though he struggles with impulse control and hyperactivity. He was diagnosed with ADHD in the summer but after a failed attempt with medication and seeing a child psychologist, it is apparent that he is incredibly bright and probably bored. As he gets more challenging material at school, he should settle down some (we hope!).

Curtis and I hit a pretty major rough patch in our marriage but we are working on it, one day at a time. His capacity for love and change is amazing and I hope we can figure things out so that we can both be happy.

2009 brought us Charlie, our Labradoodle donated by Cheyenne Valley Labradoodles. He has turned into such a good dog. He is eight months old now and has completed intermediate dog training. We're going to take a refresher course in January since we took December off and our goal is to have him certified as a service dog for Anna though it may take us another 12-18 months. We don't know yet if he will alert us to Anna's seizures since she hasn't had one since we got him (that is a very good thing!). Here is a picture of Charlie when we first got him and another from around Thanksgiving.





2009 also introduced me to digital scrapbooking and being a creative team member for AnnaBV Designs and By Becca. They are wonderful ladies with whom to work and I've so enjoyed expanding my creativity and love for digital art. I became an Admin at CrumbSnatchers and really became a prolific siggy-maker there. I have so much fun working with other people's pictures and feel very honored to be allowed to little pieces of art with them. I also had the pleasure of doing my very first photo shoot with an adorable 3-month old baby girl. Now that was fun!

I didn't get to retreat this year with my Exceptional Women friends from the iVillage support boards due to financial reasons, but we are all committed to getting together in 2010. I can't wait! We've become so close over the years and it's nice to spend time with other moms who get it.

2010 will be a year of changes. I will be attempting to re-enter the workforce in some capacity... hopefully working with digital photography and Photoshop. I'm taking an Illustrator class in January and I'm studying restoration and retouching techniques. I love love love what I'm doing now and would be thrilled to find a way to earn money doing what I love.

I hope that each of you who reads this reflects back on 2009 with fondness and no regrets, treasure your blessings, learn from your mistakes, forgive, and love. That is what it is all about. Cheers!

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!

An update on Anna

For those of you who don't follow me on Facebook, Anna started coughing Wednesday coupled with a little vomiting. On the way to school yesterday, she coughed a big cough and threw up just a little bit, so I kept her home for about an hour then took her to school late since she seemed fine after that. The school nurse called me an hour later to pick her up because she got lethargic and feelign worse, and she didn't go to school today either. Apparently, the flu and H1N1 is going around our campus and Anna had the early symptoms of H1N1.

After a very restless night and tough day, we got into the ped this afternoon. She does NOT have the flu or H1N1. Yay! Just a garden variety virus. Even if she did have either version of the flu, our ped would not give her the Tamiflu. He said that it causes an increase in the virus across the blood-brain barrier and is causing some psychotic and suidical behaviors in some children, and that would be especially possible because Anna is on Risperdal. Anna does not need to be dealing with that right now! So she would have had to suffer through the illness... thank goodness it's not the flu. Hopefully, she'll make it through this virus with no seizures. She did start running a fever last night and I was able to get Motrin in her right away. So far, so good. Except that she feels miserable, poor little pumpkin.

While we there, Anna was in full perseveration mode about getting a wheelchair. The ped fully supported mommy's position that Anna could not get a wheelchair because she didn't need one. She kept repeating herself, tried to leave the exam room (we had to bar the door), then got angry and violent (she threw her shoes at the doctor). We got an emergency referral to a child psychiatrist and OCD was mentioned. OCD? Very interesting. No one has ever mentioned this label in conjuction with Anna... her behaviors have always been attributed to autism.

I had been trying to find a child psych this last week with no luck. They either don't take our insurance or aren't seeing new patients. One guy wanted us to fill out a patient application just to get on a waiting list to be a patient, then another for an appointment after acceptance! Crazy. So this was good that the ped got to see what we've been dealing with for the last 17 days. Like I said before, you adapt quickly to a new normal and you forget just how altered your reality has become. It's disturbing to see how affected Anna is right now.

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.

Thoughtful Thursday: "retard"

Sticks and stones may break my bones
But words will never hurt me.

Is that true? Some words can hurt. A word is a word; how we interpret it ascribes its meaning. The tone of voice, an inflection, body language, and history all play into how a word is taken. I wish I could rise above hurtful words and recognize they are said in ignorance, laziness, or anger but it’s hard to take the high road when it involves one of your own children.

I have a mentally retarded daughter. Anna is not stupid. She is aware that she is different and it frustrates her that she cannot do the same things as others in such an easy, intuitive way. She has to work hard to meet milestones and she does work very, very hard! She also lives with autism and epilepsy… she copes with many challenges every minute of every day and yet she find joy and brings us joy by just being alive.

As I watch my daughter struggle and triumph with tasks such as reading and addition, hearing the word “retard” used in any form makes me flinch. It diminishes her hard work and her accomplishments. She does not have less value as a human being because her brain processes information differently than mine; nor does anyone with this label. The MR label is a way to get services to help her academically. Because of this label, she can receive instruction in reading, writing, and math in a 1:1 setting within her school district. It’s amazing to see the differences in black and white when she is in a resource setting versus a mainstream setting; she is not able to learn in a typical classroom. I am proud of her and I celebrate when she masters something because I know she worked very hard for that achievement. She has gifts and challenges, like every typical child.

There has been a movement to ban the “r” word… retard. It’s rarely used in an accurate, contextual way… more often it’s used to make fun of something or someone that is stupid or slow, to demean someone, or sometimes in a self-effacing way. I have friends who say, “I’m such a ’tard.” Most of the time, the word used in this manner does not intend to offend, it’s careless and thoughtless, but not malicious.

Quite frankly, I’m a little on the fence about banning the word. The “n” word is not a socially acceptable term yet when African-American rappers use it in their music, you don’t see picket signs around record stores or music stations. So where do we draw the line? Is the word “retard” something that should be socially shunned? I say absolutely yes. Words can hurt. But I don’t know that banning the word would accomplish a goal of inclusion… in fact, I think it would bring about more divisiveness. I wish I could rise above the ugliness of its connotations and not let it bother me, but I can’t. I’m forced to get in its face and take a stand. As more and more children with special needs are identified and integrated, we must embrace them, include them, and teach our children acceptance. It starts with us as parents.

A couple of years ago, my oldest daughter was taking driver’s ed. At the introduction of the car crash videos, the instructors said something like, “Yeah, you better be careful or you’ll end up like the retards on this video.” Jenny stood up and talked about Anna; she said that she doesn’t like that term and prefers cognitively challenged. You know what happened? She got laughed at. Someone even said, “Are you serious?” with a derisive tone and threw a pencil at her. I lodged a formal complaint against the teacher and fortunately the director of the agency was very supportive because has a niece with special needs. But I was dismayed by Jenny’s peers’ reactions and it made me scared for Anna. I was also very, very proud of my Jenny. I can’t imagine the courage that took, but she was undeterred by fear… she was driven by anger.

If someone uses the “r” word in my presence, I think about my little girl and decide to take a stand... I think about Jenny’s bravery, I think about being hurt by ugly words myself over the years, I think about Anna laughing with pure joy over something silly, I think about all of the amazing kids I’ve met on this journey, and I take a deep breath saying something as simple as, “Using the word ‘retard’ makes me uncomfortable, would you mind rephrasing that?” Sometimes I’ll go into more detail, sometimes I won’t. I’ve never gotten a negative response.

I’m not asking that you do the same, but maybe just think about how words have hurt you in the past and see if taking this particular word out of your vocabulary would be something easy to do. Pass this post along to family members who use the word if it’s too difficult to talk to them. Talk to your children.

We can each make a commitment to change, as individuals. It’s start with us… today… right now. Thank you for reading this and thinking about my little girl.