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Friday, June 17, 2011

Repercussions of Malignant Hyperthermia

In my last post I discussed Malignant Hyperthermia (MH) and how it pertains to my son and daughter.

Now I'll explain how it may be affecting Lily (besides that she may have inherited the MH gene).

Lily was a healthy size baby - 8+ pounds, born January 09. She did have more than the average problems breast feeding, and so was given a bottle. Usually babies double their weight by their fourth month; Lily was around 16 lbs at a year old.

She wasn't hitting any of the milestones of crawling or pulling herself up on furniture, etc.  When we all got together for Christmas, my sister was the first to notice that something was wrong when she held Lily.

"Don't you notice that Lily kind of flops around when you pick her up? That she doesn't hold herself up?" She asked.


Jessica noticed the difference with her cousin's babies who were all near to Lily's age. Previously, when Jessica had mentioned the lack of Lily's mobility to her pediatrician, the doctor said, "Oh, don't worry, she'll get there." The doctor kept saying that. I felt she was wrong. Jessica agreed. So she switched doctors.

The new pediatrician examined Lily and saw some issues right away. She recommended that Jessica take Lily to Easter Seals for evaluation. After many interviews, evaluations and home visits, they concluded that Lily had a condition called "slip-through", where the baby feels like they would "slip-through" your hands when you pick them up. They also said that Lily had low muscle tone throughout her WHOLE body; including her jaw and tongue. This is why she had problems eating, especially solid foods. She would choke quite often. They recommended that Lily get physical therapy and speech therapy several times a month. (Lily is currently getting therapy through a state-run program.)

Lily began walking at 22 months and now she runs around the house. She has to wear teeny tiny braces on her feet that fit into her special shoes (they look like gym shoes).

Another concern about Lily is her size. She is very small and doesn't seem to be growing very much. She still wears a size 18 month size pants and she is now 29 months old. She weighs 24 pounds. She is very short. Jessica and Dave took her to a geneticist. After taking an in-depth history from both of them, Jessica just happened to mention that she had MH.

The doctor really jumped on that. He said that the problems Lily is experiencing could be a form of MH, and what is called Central Core Disease. He said that she definitely has Hypotonia, another name for low muscle tone in the body, but that disease has a wide spectrum of problems from minimal to severe. Luckily Lily is on the low end.

She has a problem with her vision; one eye or the other will wander. When that happens the straight eye will compensate and the brain will shut off the vision from the wandering eye. For now Jessica and Dave have to try and put an eye patch on each of Lily's eyes (alternating days) for 2 hrs/day, for two months. If this doesn't help strengthen the muscles in the eyes, then surgery will be necessary.

Of course, we need to know if Lily has MH before any surgery is done.

And thus, we want Jessica to have the marker in her blood.

Kids with hypotonia tend to sit back and observe what's happening; they know their limitations. We've seen this happen with Lily. But where she may fall behind physically, she is WAY ahead cognitively.

Lily has an upcoming visit with an endocrinologist to see if there is any issues with her growth. The geneticist didn't find anything in the chromosomal study.

It's pretty sad that Lily is so used to going to the doctors that she thinks that's the only place they ever go.

"Come on, Lily, let's go," Jess will say to her, getting her ready to go to the store, the library, or wherever.

Lily will reply, "Doctor?"

Luckily, the majority of doctors have been extremely nice to Lily.

Remember George?


Lily takes him EVERYWHERE, especially to the doctors. And the doctors ALWAYS examine George FIRST, looking into his eyes, listening to his heart, etc. It is wonderful how they take the time to do this.

And so, that is the story behind my Lovely Little Lily, who will always have a special place in my heart.

12 comments:

David Allen Waters said...

lily is beautiful...and in my thoughts and prayers.

hugs

Teresa - in the Middle Side of Life said...

wow! that is quite the story and i'm glad that she is getting the therapy and treatments. she is a special little lady...

Lynda said...

Oh, Pat - - that precious, precious child is so gorgeous and seems to have a great personality from what you have written. I am sorry she and her parents have to go through all of this. The good news is the age in which we live. She has access to excellent doctors and physical therapy.

Our older daughter went through the problem with the eyes. I believe it was called something like accommodative esotropia. We did the same thing with her - - the patching of the eyes as well as drops at night. K also had to wear bifocals but they straightened her eyes.

The doc could never do surgery because her eyes were never consistent. On one visit, the right eye would look inward. On the next, it would be the left, etc., etc.

Then we heard about an optometrist who treated this condition with eye exercises. By this time she was in elementary school. The ophthalmologists did not suggest this type of therapy or necessarily approve of the exercises since they treated with drugs, glasses and surgery. Even after we stopped with the 'exercise treatments', K would stand in front of the mirror as she got older and about to enter middle school and stare at her eyes until she knew how they felt when looking straight ahead. Today K's eyes are very, very straight. I'm not saying that is everyone's solution but it was for her.

The best thing that came out of her 'condition' was it brought me into a closer walk with Jesus. The thought of my two year old firstborn going into surgery drove me to my knees.
Thanks for sharing your heart with us. We will keep Lily in prayer.

Brian Miller said...

smiles. she is a special little girl...prayers as well...

Ami said...

My youngest has hypotonia. Long story, occupational therapy etc.

Lily is a beautiful little girl.
I'm so glad that she has so many people looking out for her and that she's so well loved. Every child should be so lucky!

:)

Eva Gallant said...

What a beautiful little girl. I hope she beats all those health issues and thrives! Hugs and prayerys for you and your family!

SquirrelQueen said...

Lily is absolutely adorable, that smile would definitely light up any room. I agree with Ami, Lily is so lucky to be surrounded by loving family who will make sure she has every opportunity available to thrive.

Valerie said...

I'm so sorry that lovable Lily has problems in her young age. You can be sure I'll be praying for her from now on. Hugs for you too, Pat.

Ruth said...

You have my heart. Lily has my heart, and my prayers. I love that the doctors take the time to examine George first. I love that Lily is being so well cared for, even though she has to go through all this.

Gail said...

Lily is beautiful. Hugs and prayers for all of you.

Betty Manousos@ Cut and Dry said...

she's a real beauty!
what an adorable cutie!

sending my thoughts and prayers for all of you.

(((hugs)))
betty xx

Michael Wesolowski said...

Thank you for sharing your story.
Find more information at Malignant Hyperthermia Association of the United States, http://mhaus.org

607-674-7901
---michael@mhaus.org