What is this unique disorder.

Chloe The Kinesthic Learner. How Her Health Issues Interfered with Her Learning Style
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So far we have identified 2 areas where the nerves may have been having issues since birth. Symptoms are widespread pain, fatigue but having sleep problems too. Also we working through  cognitive difficulties which includes the ability to focus, pay attention and concentrate on mental tasks and headaches with  Chloe's Neurologist. We seem to have the proper treatment that can greatly improved her quality of life.

We have made progress and learn quite a lot. We will continue to work with the neurologist to hopefully improve the treatment after this cold snap.  Her forehead nerve is trigger by this cold weather so we may need to wait to resume all the Doctor appointments the Neurologist wants us to do till it warms up a bite,

Outdoor above 30 degrees outfit

Chloe The Kinesthic Learner. How Her Health Issues Interfered with her Learning Style
                                                  http://www.uniquedisorders.com/
This is her above 30 degree outfit. The goal is to protect the fore head so not to trigger a headache and be able to get outside and enjoy the winter, Outdoor Theraspecs are iimportant too.

Outfit for real cold weather

Chloe The Kinesthic Learner. How Her Health Issues Interfered with her Learning Style
                                                  http://www.uniquedisorders.com/
This shows the TheraSpecs for outdoors, lined cap and coat usual zipped up when temperatures are below 30 degrees. She can move around quite freely as long as nerves that have problems are well covered.

Unique Disorder

                                         
                                                     http://www.uniquedisorders.com/
Chloe The Kinesthic Learner, How Her Health Issues Interfered with Her learning Style.

We have learned a lot about Floppy Infant condition Chloe was born with in these past 20 plus years.
Chloe has been seeing a Neurologist that has helped us figure out this condition and how to treat it.
This is somethings we now know the condition she was born with.

1.) First nerve issue is on the left side of neck which affected her left shoulder that developed not
      symmetrical (evenly shaped) as the right shoulder. She has difficulty grasping with the left hand and complains her hand and arm tingles and buzzes at times. The Neurologist, gave her medication to help to relax muscles cramping trigger by this nerve issue and a medication that works on reducing inflammation and another used in treatment of fibromyalgia.
2) Second nerve issue is located on the left side of her forehead. It is a sensitive area she consistantly points to when asked "What hurts?"The second area is helped by the medication used above but also the theraspecs she wears, a lined cap to go in the cold and a prescription topical pain ointment she uses up to 4 times a day. That sensitive area is effected by cold and sunlight are two triggers we know of so far.
3) We are still not sure if this is a separate issue or caused by the problem above. Chloe has a unique  placement of the veins and arteries in her arms. We were able to get blood work and found her deficient in iron, Vitamin D and B12. We are not sure she may have to take daily supplements from now on to maintain her levels.

We need to get blood work done and see a rehabilitation doctor before we see the Neurologist in 3 months, We will continue to work with Molly at the YMCA which helps us to see problems and successes we can share with the Doctors.

Hope we have uncovered all the issues we need to deal with but only time will tell if we did.