Updates on Ella

     

 

My beautiful daughter………how I love this girl.

It has been a tearful month for me.  I’ve been meaning to blog about Ella for awhile, but didn’t want the waterworks to start flowing.  I needed to take some time and mourn the loss of an easy solution.  I am ready to get to work now.  Let me explain.

She has been receiving HGH (growth hormone) shots since May, and they are not helping her slim down. I said in a previous post that HGH helps these children to lose weight if they are deficient, but there are a few that it has not helped .   I was so hopeful that it would help her, but knew after about a month into it, that they were not working like they should.  She had more energy and was growing like crazy, but gaining weight right along with it.  She has gained 50lbs in two years.  She weighs more than my ten year old. 

I had an appointment with her endocrinologist in November--beforehand I emailed the research team in L.A.  They responded and said that if the hgh injections have not worked by now, then most likely Ella has Hypothalamic obesity, which has also been found in children with ONH.  My endocrinologist came to the same conclusion.

Basically that means that Ella’s body thinks it is starving.  She feels hungry (and thirsty in her case) all of the time, craves carbs, and doesn’t metabolize correctly.  Her body holds onto everything and converts it into fat.  She could eat an unusually small amount of calories and still gain weight (which we have seen).  She has many of the same symptoms as a child with Prader Willis.

I joined an online support group for ONH/Sod awhile ago.  I decided to get back on and search ‘hypothalamic obesity’.  I came across a couple of threads on the topic.   I bawled the whole time I was reading it.  This is not going to be easy.  I think the hardest part about it is-- of the five stories I read, no matter how much work they put into it, their children were still overweight-  even on an 800 calorie diet.  They had many problems from joint issues, diabetes and depression.

This is going to be a lifelong challenge—physically and emotionally.  I will have to help Ella (and myself) deal with it.

Things are going to have to change in this house.

For example-

*Stick to a strict schedule for meal and snack times, absolutely no snacking in between (this includes for friends and family who come to play).  

*Absolutely no second helpings (pretty much for everyone).

*Cut carbohydrates drastically, balance them with protein.  One thread said that a diabetic diet did seem to help her 10 year old daughter who weighed 300lbs and was 5 feet 9 inches tall from the hgh- she had lost 60lbs and was down to 240lbs -so sad to think of a 10 year old that big.

Even with all of this, I am hopeful for her future.  They are discovering new things everyday.  Ella may participate in a sleep study that the doctor in LA is doing.  They have discovered that 50% of these children have sleep issues and do not go into their circadian rhythms,  which in adults is related to obesity. 

There is also a drug called octreotide that my endocrinologist is studying.  It has been shown to have good results in children who have hypothalamic obesity after a brain tumor.

So, my prayers have changed.  I am praying that I will have the strength to help and support her, to the best of my ability throughout this life.  I am praying that new things will be discovered.  I am thankful for this sweet little girl and grateful for the knowledge of the gospel.  This earth life is temporary, and I will try my best to help her see what this life is all about.  I know that she will be able to find joy in the journey, despite her ‘broken’ body.  One day she will be healed, and maybe sooner than anticipated.   

 

PS- we are back to  patching her for two hours a day as well.  We noticed she was preferring her left eye again, and the right eye has become a little lazy.  She did a good job ‘blinging’ her eye patch. :-)