December 1,2009
Our seventeen year old daughter was born with a neurological disorder called Floppy infant which caused her to have extreme low muscle tone and rapid growth. This update shows how the doctors worked to clearly understand what the problem is and how they worked to treat it.
The pediatrician prescribed a half of an adult dose of a diuretic and other medication that controls her asthma and allergies fluids to control excess fluids in her body. Annually at her physical blood levels are taken to make sure her levels are in normal ranges. Fish oil with a special ratio of EPA to DHA and over the counter pain medication are also prescribed. If the medication doesn't control her pain she needs to call or see him.
Several allergists, identified Chloe's outside,indoor and food allergies. They stabilized her diet and medication. Her pediatrician will refer back to an allergist if needed.
Chloe saw an associate professor at the Medical school in the ear,nose and throat department and saw this doctor for several years. What was confusing was Chloe sounded at first like she had deaf speech but her hearing tests showed that she had normal hearing range. As she recovered may be her tinnitus in her right ear lessened which caused her to be able to pay attention to what was being said. She does have sensitivity to baritone, bass and high soprano ranges. Chloe wears ear plugs because loud noises could make her tinnitus become louder which causes her to be nervous in situations that this may happen in. All these issues could be worked with if she trusted the earplugs which she slowly is beginning to. Her pediatrician monitors her ear issues and refers as needed.
Chloe's pediatrician referred her back to a physical therapist to identify what was going on with her muscles and joints. What he found was her extensors muscles were much stronger then her muscles that flex and her right side joints were loose and could pop out and then we figured out most of her issues were related to this. She has tinnitus in her right ear, right jaw issues, right arm issues, right eye and right hip issue. Two issues seem to aggravate her problems is she is right side dominate and five feet nine inches tall. I have lost count of how many times Doctors or therapists have said if only she was shorter or left handed. What we have found is she responds faster with her left hand but the right hand is more accurate and on stairs she leads with her left foot going up and down the stairs. The physical therapist recommended continual exercise and developed an exercise routine that Chloe does daily.
The physical therapist talked about balance and how important vision is to it, so the eye doctor was our next stop. The eye doctor found her eye sight good but she had a glare issues and recommended glare resistant glasses. Through trying on glare resistant glasses we found not all glare resistant glasses work the same some helped her balance and some did not. Also suggested
was blue or green lenses might help her eye strain and we found that to be true. She use to behaviorally fall apart with her headaches but now they appear to have improved and she tells us when she has a headache. When Chloe is asked where does it hurt she will point to her left side of her face between her left eyebrow and ear the majority of the time. This has been a constant complaint but the pain has lessened in intensity.
The dentist and personal trainer work with the physical issues. Dentist was the first to point out jaw issues and how it is easier to work from the left side with her then from the right. Personal trainer works on guidelines suggested by the physical therapist working in different areas of the building and outside.
Her learning disability that comes with her muscle, joint and balance issues was the music therapist and mine to figure out. Chloe's strength is the written word and this help to work on concepts through written discussions we have had. Her ability to identify number took writing them out into word form and now she works on basic math with a calculator independently. Chloe is unable to identify the same note in same position or different note in different position but is beginning to improve with practice. She has a hard time putting words to what she sees around her in the environment. Her Spanish course has her seeing a picture and then matching it to the correct sentence in Spanish with practice she steadily improves.
We found a unique eye disorder with this balance, joint and muscle issues. Hopefully with proper tools: glare resistant glasses, ear plugs, practice in the community, one to one work on challenging her vision and strengthening her endurance will continue to lessen her hysterical reaction when problems arise.
