To keep my children’s privacy her name has been changed and images removed from the original article. If you would like to learn more about rare Growth Disorders please visit the Magic Foundation.
We were getting ready for bed. Elf was 7 almost 8 years old at the time. It was already clear to me that she was not following a growth curve like her peers. As we put her pyjamas on, her frame was strikingly small. Bones were sticking out in places a mother shouldn’t know had bone. I wanted to cry. My eyes welled up and I hugged her a little tighter. She was so small, almost sickly looking. Someone had to see this! It couldn’t be just me.
The next week I would call her Doctor. It was a paediatrician we had been working with for a little while already. I couldn’t let this feeling pass unnoticed. Doing Something wasn’t easy though. Our family was split by divorce years prior. Her Dad and I had joint decision making rights. This was complicated as we didn’t see eye to eye on the issue of her size. I was particularly upset with her non-existent weight. When parents disagree, well it makes it more challenging for Doctors to do much. By now I have had just about enough nagging intuition to stick to my guns.
July 23rd, 2012 – Height 4th% Weight 1st %- By this point I was also preparing court papers to get sole decision making rights. The paediatrician may have been concerned too, but he didn’t show it. Maybe he was trying to be the calm head in the room. I explained my exasperation at the situation and he referred us to our first test. Bone age x-ray of her hand. I practically leaped up and out of that room. We immediately drove 20 minutes to a local rural hospital. This hospital would take us in without an appointment and I was rearing to go! Answers to something at last.
July 31st 2012 – test results are in!- Bone age of age 5 years old, standard deviation 9.6 months. For a nearly 8 year old girl this is significant but apparently not worrisome at this time. As much as this is our first clue, it is also the nugget of information I grasp on to reminding me something is medically proven to be amiss. It gives me hope that we will be able to find out what is causing these issues. We will monitor the growth and weight more regularly with the paediatrician. Now someone else sees it too…phew…the waiting game continues.
In January 2013 – I was awarded medical decision making rights. I think I ran out of that courthouse to make the first call! A month later we were referred to Endocrinology at McMaster’s Children’s Hospital in Hamilton, Ontario. Our paediatrician still didn’t see the urgency in our case, and so we were put on the long waiting list; nine months. I awaited this appointment like it was the only thing to behold all year. More waiting…
Fall 2013 – Height 2% Weight 3%- Another school year begins; Grade 4. By now we have done a psychoeducational assessment and found ADHD – type 3. I’m still on the fence about medications and so we try other methods first. I also had her hearing checked by a registered audiologist this year and we are doing therapy for Central Auditory Processing Disorder in her left ear. THAT experience left me so completely drained and convinced there was going to need to be medications for her ADHD. Back to the paediatrician to discuss medicating her ADHD.
October 2013 – Now is the big day. Or at least that’s the way I have built it in my mind. We drive the 45 minutes to Hamilton’s McMaster Children’s Hospital, and sign in with the clinic. Sitting in the waiting room its bustling with family’s. I have vivid memories of this first visit. As usual I come prepared. Entertainment for the kid. Food and water supplies. Now we wait. When we finally get called in, we first meet the endocrinologist’s student, this is a teaching hospital. Her job is to take our history and record our story. I try to explain it in as much detail as I think is important. Also noting that there are parts I cannot discuss in front of my girl I ask for private conference with the student in the hall. I explain to the student that over the summer we had a psychoeducational assessment done and the results were ADHD combined type 3, inattentive and hyper. My girl is also superior range intellect. In describing my girl and the reality’s and complexities of her case, it never occurred to me that nobody knows her better than I do…until the next moment .
The student says to me, ‘well that doesn’t make sense’. Huh? This is my kid we are talking about here.
It’s a punch in the gut and my heart sinks. I compose myself, straighten up and return to the room where we wait to see the endocrinologist. On this day we are told again there is nothing notable to worry about. Failure to Thrive. The endocrinologist suggests she will watch Elf for another year. We will come back in 4-6 months for a growth check-up, weigh -in etc. Another year…We leave the children’s clinic. It’s hard to contain my disappointment, and I can’t even carry the emotions with me to the car. I find the nearest lounging area near the main entrance lobby and sit. Child standing beside me. Face covered from public view. I begin to openly weep in the main entrance of the hospital. Again we wait…
Life has a habit of moving ahead without you. At home we continue to work on the other issues. Another nagging concern I had been trying to address is Elf’s eating habits. She is not only small, but eats like a bird. Maybe less than a bird. In continued efforts to address her growth and her eating habits I make sure she is drinking Pediasure regularly. She is incredibly resistant to this drink, so I have to find other ways to get her to take in calories. In my usual style, I cannot let things go. When I think I can make effective change, I set out and research high calorie diets for children and find the Cystic Fibrosis (CF) diet. Having CF requires high amounts of calories each day to stay healthy and as such they have a high calorie diet and nutrition protocol. And the nutrition and recipe information is also easily available since it is a well-funded medical condition. It’s basically bacon, sausage, and cheese and butter. Serious amounts of calories in every bite she takes. And I still met with resistance. The sausage casings make her choke, and the bacon if not cooked perfectly it makes her gag. She doesn’t like the oily taste of her food…She LOVES the cheese.
Fall 2014 – Height 2% Weight 0%- Our year of waiting moved ahead. Another school year begins; Grade 5 now. We are also going back for our follow-up with the Endocrinologist. At this point my hopes of intervention have been dashed. I have figured all the efforts to effect change will come from home. That in the end she will just be small, and I will need to learn to accept this fate. It’s not a terrible fate. Strength has little to do with size.
September 25, 2014 – We meet with the Endocrinologist again. I am always optimistic, but by now my 9 year old and I have been at this for a while. So today we muster up the gumption to drive the 45 minutes again. Elf has continued to not grow, not eat. To be honest, I was just trying to accept this as our normal. But TODAY we get a different response. We will be scheduled for a growth hormone stimulation test! A Gastroenterologist referral to make sure all is clear in the gut too.
In the meantime we meet with Gastroenterology to discuss if any of her issues could be related to nutrition, absorption issues or disease. We have already done basic tests for coeliac, and as mentioned earlier I have researched as much as I can on picky eaters, high calorie diets etc. This appointment starts with the students again. Over the next 2 hours I am plied with questions about our choices in food, what foods we eat, what foods we like and on and on. These young students are doing their best to figure out our issues, but this line of questions is not our source of problem and I visibly get flustered. In this appointment I don’t keep my cool as well as the others. At some point I declare: we do not have a nutrition problem here, we are not eating enough and I cannot force her to eat!
Eventually, hours later, I get to speak with the Gastroenterologist and he says something like “Your issues don’t sound like nutritional issues or those related to GI. But I do think I have an idea where you might be able to get help. I will have to get back to you, but if you agree I might have another avenue that can help. Are you ok if I do some research and get back to you?” You mean I don’t have to do it by myself anymore? “By all means, I look forward to your call!”. And he did call back. He even called me over the December holiday season to personally apologize for the delay, let me know he was still looking into it. I will likely get a call in the new year. I cried tears of joy at the care and concern he was taking.
Our STIM test day arrives! We were packed up and ready for THIS 45 minute drive back to Hamilton. Lucky for me I had a friend of a friend that had been through this already (several times) and so I had relatable experience to draw from. We are first to arrive at the hospital clinic. We are welcomed and set up in a bed. Intravenous was placed and questionnaires answered. Now we are ready to go! Elf was sedated and for the first little while she slept. But eventually she was conscious enough to be uncomfortable. Her IV arm was hurting and I ask a nurse if there is something we could do? No. I tell Elf to roll over, thinking maybe the blood is pooling in her IV arm as she is lying on the same side as her IV. That does the trick. Mama’s are magic. The test takes less than 6 hours and she hasn’t eaten all day. As we finish up and head home food is a priority! Hangry anyone?
December 18th, 2014 – I remember the call. I get chills recalling it. I was in another hospital waiting room, this time for myself. As I wait to see my own Doctor my cell phone rings. I don’t usually answer calls I am not expecting, but something makes me answer this call. The call goes something like this:
‘… Elf was growth hormone deficient….she makes some but not enough Growth Hormone…and would I be okay starting Growth Hormone Therapy?….oh and did I mention she qualifies for full government funding, so it doesn’t have to go through your work or personal insurance….my office will handle all the paperwork… it might all be related to her not eating, but we won’t know until after we start therapy. She will have to go to the eating disorders clinic as she won’t grow if she is not eating enough….do you understand?….’. um YES! YES and more YES!
Today I know her STIM test peaked at 4.7 & 6. Just under the wire for approved medical intervention, in our part of the world. We started Omnitrope on January 28th 2015. We had our MRI on February 1st 2015, it was all clear, no abnormalities. Her diagnosis is Idiopathic Growth Hormone Deficiency. This answer is bitter sweet.
Today Elf has been on Growth Hormone therapy for 2 years and we have been going to an eating disorders clinic since March 2015. That was the lead the Gastroenterologist was referring to, he wanted to connect with a psychologist in the hospital about a referral to their out-patient eating disorders clinic.
October 13th, 2016 – Height 10th% Weight 5th%
These 2 combined therapies have put my girl on the growth chart! It doesn’t seem like she is so much smaller when comparing to her peers. Heck her younger sister lives happily in the 30-40th percentile range but Elf gets to boast she is still taller than her younger sister. When you start at 0-3% for height and weight, that 5-10% makes a world of difference!
I’ve missed a lot, and skimmed over some of the details. But I tried to include the moments that made a world of difference to us. This experience is changing our lives and so this January I launched 2 websites: www.theindependentparent.ca – where others join me in the journey of raising my perfect children as a perfect single parent. (Enter the stories of folly on the blog) www.yourexsolutions.ca – The Divorce Diva (me), offers support and divorce planning to others. It’s an unfortunate statistic that parents of children with special needs have a higher rate of divorce. It is my mission to help others navigate and thrive through the process.
In all Elf has the following diagnoses:
CAPD – Auditory Processing Disorder in her left ear only
Visual Processing Disorder – that’s a longer description of issues related to the neuro connections related to vision
GHD – Growth Hormone Deficiency, idiopathic
ARFID – Aversive, Restrictive Food Intake Disorder . Added to the DSM in 2013. She had it before it even had a name.
We continue to grow. We continue to make gains. I continue to be as persistent as ever. So does she.