Started last week, finished this week.
I’m feeling really overwhelmed right now, mostly by conflicting information and lack of guidance. I should backtrack to my original post and continue the story of Lucy’s developmental history before I tell you about my current dilemmas.
So at about a year, after Lucy had been very ill and been treated with a massive dose of antibiotic, things slowed down. We had a well-check right before she got sick that went fine, except that Lucy had a lazy eye that hadn’t straightened out on it’s own. Our pediatrician referred us to a pediatric opthamologist who diagnosed Lucy with strabismus and also determined that she was far-sighted. The prescription was patching. Lucy didn’t mind the patch on her eye before she was sick, but afterward she wouldn’t wear it at all. That left glasses as her only option. Nothing is a freaking cute as a one year-old in glasses, let me tell ya!
At that well-check Lucy’s weight had been fine, but a lot changed over the next few months. She had been nursing well but really transitioning to solids well, also. Strangely, she started to snub her favorite foods and her appetite dwindled. She became very picky and generally disinterested in mealtimes. We were also expecting her to walk any time; she’d been pulling up on furniture for awhile, but it just wasn’t happening. And she wasn’t starting to use words, either.
At our eighteen month well-check things didn’t go so great. Lucy hadn’t gained much weight. Her growth on the chart was leveling off. Here’s an example of where things get tough…I was a tiny kid. My mom kept saying, “She’s just little! You didn’t reach the growth chart until you were 3!” So when the doctor was considering this lag, we weren’t sure if it was a problem or just genetic. And when we talked about her motor and language skills being behind, there were enough marginal developmental markers to make more of an orange flag than red. My ex-husband would say, “Put her down! You carry her too much. If you put her down more she’ll walk!”
Well, walk she did, but not until she was almost 2. At 2 3/4, L started her first pre-school program. I had a meeting with the teachers before she started to let them know about her special needs. She needed to be watched at all times because she couldn’t go up and down stairs alone and she couldn’t operate on a playground without help and she could only have certain snacks because she would choke frequently and she was terrified of being without me so she needed special attention…not your typical toddler.
After the first week the school called me to set up a meeting about her needs. They basically had no idea that the things I’d talked with them about were, well, as serious as they were. I thought they were kicking us out at first. Fortunately those ladies were angels and just wanted to really discuss how to best meet Lucy’s needs. We shortened her school day to 3 hours because she fatigued easily. I crafted a special book made of felt and filled with pictures of our family for her to take to school and hold on to when she felt sad. But they also told me that Lucy was extremely behind her peers in both speech and motor skills and they begged us to get her some physical therapy.
That was really tough. You get used to meeting your kid’s needs and they are just part of every day life, and if you’re not around other kids it’s easy to be unaware of how far behind your kid is. It’s pretty in your face, though when you look at a room full of 2.5 year-olds and they run and jump up and down and introduce themselves by their full names and include a handshake, and your kid can’t do any of that. L had had private speech therapy at a place nearby so we set up an evaluation for physical therapy there, too. Now, I have to tell you that she’d had an evaluation for PT with the ECI (Early Childhood Intervention) program at about 24 months, and they didn’t recommend services at that time. I will tell you more about ECI in another post, probably titled “Shit Our Pediatrician Never Told Us”. So stay tuned for that. Needless to say, the private evaluation came back very different. We learned that Lucy had low muscle tone, or hypotonia. We made goals for a therapy program, and got going with it.
Still, we weren’t seeing weight gain, L wasn’t sleeping well at all, we weren’t seeing drastic improvements in her expressive language skills or motor skills, which we had hoped for when she started the pre-school program.
L had been screened for autism at her 18 month well-check. She didn’t have any of the social issues that put up red flags for autism, but over time with a lot of reading and research on L’s specific issues, it seemed to me like she had a bunch of issues that kids with spectrum disorders have. Failure to thrive, sleep disorders, yeast issues, developmental delays…
I read Jenny McCarthy’s book about her journey as the mother of an autistic child and that she had done some things that really got results in his development and health. So I went back and re-read it. The number one thing that stood out for me was the change in diet. And reading about this kid who didn’t speak and couldn’t physically do the things other kids his age could do, and the kind of fog he was in, well it hit home for me. So I decided to try to treat L as if she had autism and see what happened.
Around that time my Aunt M came from Virginia to stay with me for a week. God just sends you the right people at the right time, you know? My Aunt is a teacher who taught gifted and talented students, and she also has this interest in the brain and neurology, and loves food and cooking and had experimented with alternative diets over the years. She asked me if I was aware of the brain/gut connection and the importance of the gut in immune function. Flash back to L’s illness and antibiotics, etc…That week we bought a bunch of books, changed L’s diet to a gluten and casein free diet, and had our first meeting with a naturopath at People’s who helped us with getting L on some supplements. If you are interested in the treatment (notice I am NOT saying cure) of neurological disorders through diet and the theories behind it, go to Natasha Campbell McBride’s GAPS (Gut And Psychology Syndrome) website. I will put the link at the bottom of the page. It is very interesting. Thank you Auntie M!
That week deserves it’s own post, because going to a GFCF diet is an undertaking and a commitment, but we saw immediate rewards. That first week, it was like someone turned on the engine. L got hungry and was devouring everything. She actually started to gain weight. She also jumped, with both feet off the ground, which she had never done before. We haven’t been able to get her to do it since, but it was a miracle just to see it once.
Over the next couple of months we seemed to hit our stride with food and L’s attention span really improved. (This diet can be helpful for ADHD/ADD, according to lots of parents.) We kept on with the PT. L’s 3rd birthday was approaching and ECI hands you over to the school district at 3 years so we were faced with the possible opportunity of going to the Eanes PPCD program (Preschool Program for Children with Disabilities). If we were eligible, L could get preschool with PT, OT and speech therapy EVERY DAY.
We went through the process of qualifying which included interviews and observations by the school psychologist, the special education preschool teacher and all of the therapists who would provide services. These folks were total pros. At the end of it all, we had a meeting one December day with the entire team called an ARD review, where they told us if we could get in or not. We did. The psychologist told us L qualified under the umbrella of “speech impairment”, but that if there were some classification in Texas for all-over impairment then L would have that. I guess that doesn’t exist here. I’d read about PDD/PDD-NOS, but L wasn’t on the autism spectrum so that wasn’t it.
I have to say that was another really hard day. When your kid is different you have this constant undertone of anxiety that is just part of the fabric of your existence. Then there are the days when you get hammered with just how different your kid is, and it’s like a mountain peak of pain in the rolling hills of your anxiety landscape.
That day A’s son D was here from Baton Rouge to celebrate Christmas with us. I think it was a Tuesday. We were going to have a quiet family dinner and open some gifts and so I went home to cook. D had been out running errands and came home while I was cooking and he’d brought a nice bottle of wine as a gift for his dad and me. I eyed it with appreciation and said, “I could use a glass of that right now!” He asked if I’d had a hard day. He poured me a glass of wine and perched on a stool at the island while I cooked and talked and told him all about L’s challenges and the school review and all of the stuff that was going on in my head. I started to cry. “You know, when you have a kid and you love them so much, that kid is the most perfect, beautiful thing in the world to you and it is just brutal to hear somebody say anything otherwise, even if you know they’re trying to help you.”
D got up and gave me a hug. He maybe said he was sorry or he maybe didn’t say anything. But I’m so glad he was there because I really needed it. So often you have these days with news or developments and you need to process whatever it is, but life doesn’t wait around and you have to move on to the grocery store or make a bunch of phone calls and the next time you have to think about what it all means you are lying in bed at midnight and the person next to you is asleep or out of town and it all feels really lonely. I’m glad that day wasn’t one of the lonely ones.
Anyway, L started the PPCD program and we were making progress but it still really bothered me that we didn’t know what to call her set of issues. There are several reasons for that. One, explaining it to people is hard. Two, how can I attack something if I don’t really know what I’m dealing with? Three, why? Why? Why? Why?
I was dreading L’s 3 year well-check. Every well-check previously ended with some unsatisfactory review from the pediatrician. L hasn’t grown enough. L hasn’t hit the milestones. L needs some more vaccines. Blah blah blah and goodbye, see you in 6 months. This time, I went armed with a question. They took L’s measurements and we had our little interview process. I told the doctor about our issues and developments and she was supportive of the changes we had made. (Again, none of which came by suggestion of any of our practitioners.) Amazingly, L had gained 2 lbs and grown an inch. The doc was happy with that. Still, I told her how much it bothered me that we didn’t have a diagnosis and that we were still really struggling with certain issues, particularly sleep. So FINALLY she referred us to a Pediatric Developmental Specialist at Dell Children’s.
I had a tough time making the appointment. They had a two month waiting list. They kept telling me they needed this and that for the referral and couldn’t make the appointment without certain forms and oh, that doctor’s schedule is in flux right now, etc…So I called our pediatrician and told the office what a difficult time we were having. They said they would try to help us get in. Next thing I know, we have an appointment at the Neuroscience Center with the specialist in 2 days! OMG, I was ecstatic!
So here we are, 3 days after our initial evaluation and we have a diagnosis. It is probably a partial diagnosis with a couple of other things to follow, but we have something to CALL IT. And something to conquer. And something to give us an outlook on the future, most importantly.
Drumroll…..L has DYSPRAXIA. With a probable diagnosis to follow of Childhood Apraxia of Speech, and with some possible Sensory Processing Disorder thrown in there. This set of disorders often go together. Dyspraxia is when the neural connections for motor planning and control aren’t being made. It used to be known as Clumsy Child Syndrome, if you can believe that! Apraxia of speech is when it is specific to the motor control necessary for making words! I will link to some information about both so you can understand better than I am telling you, but when I read about them both, Lucy’s issues were all listed. Motor delays, speech delays, sleep disorders, feeding problems. Holy shit, that is my kid!
We had to go back to the pediatrician the day after that appointment because I thought L was getting a sinus infection. When I laid the news on our pediatrician that L had been diagnosed with Dyspraxia, she said, “what does that mean exactly?” It doesn’t seem like people know much about it. My mom said that it is caused by brain trauma, like a stroke or a fall or something like that. That seems to be true in the demographic that she works with (elderly). But I’ve learned that kids who are dyspraxic are generally born with it and there is no real cause known. And often, around a year is when you start to notice that things are different with a dyspraxic child. I’m learning more about CAS, too. I’m hoping we can really start to tailor L’s therapies now.
We go back to the specialist in 2 months to do more cognitive testing. We are also doing a bone age xray this week to make sure there is nothing wrong with her growth medically that the blood tests we did last year wouldn’t have told us. And she wants to test L for Celiac disease, but says since we are already on the proper diet for that the testing can wait awhile.
I can’t tell you how relieved I am…oddly, you’d think I’d be bummed by getting an actual diagnosis, but I feel excited that we can direct our energy toward something specific now. And all I can say is that if you think there is something going on with your kid, you may have to push and push and push to get somewhere. Keep asking questions and keep pushing your doctors. It is so worth it to get to the answers.