Timeline Uncovering a unique Physical-Neurological Disorder

Reviewing where we came from , when Chloe was a year old she had her first neurological exam. He described her growth this way! “Early milestones were markedly delayed.  She did not roll over until 11 months of age. She did however sit up by 7 months and has not crawled yet.  On her abdomen she pulls to her hands but does not attempt to crawling. When she first started therapy,it was noted  that the left side was weaker. Currently she moves around the room by scooting. On the other hand she appears to be very verbal and repeats several words and uses 4 or 5 words spontaneously”!

Chloe got physical therapy, occupational therapy to help her achieve her milestones. She was always in the 90 to 100% of growth which was hard to manage with her hypertonic issues. She went to K-3 but changed school due to her being exhausted. She lasted in grade school till second grade treacher said she cried a lot and wondered if she in pain or maybe allergies and asthma.. She was tested and
found to have environmental allergies and asthma that definitely help but did not get rid of the problems.

Homeschooling was an education by doing. We travelled to France, California and Florida to name a few places. Chloe is able to read is her strength and loves geography. If we are not in the community she is researching different places or menus on the internet  are some of her interest. Right now she is fascinated with podcasts..

Chloe continued to have very random symptoms like her mouth did not open very wide and she has problems with shooting pain in her forehead. Her shoulders are asymmetrical . Chloe was given a medication that is used for nerve pain or as anticonvulsant, also a muscle relaxers and topical pain reliever on her fore head and Orajel on the gum line above her top teeth. Chloe will point to what
hurts and I would administer the topical pain ointment in those areas.  Chloe even tried Botox she got
8 injections to her face. She got real quiet but very happy and giggled  all the way home. She was extremely happy to get the injections but it lasted about a month each time. Now she is on muscle relaxer and the seizure med pain is still there but less intense.She has a appointment with
a new neurologist that will evaluate her for Cranial headaches. Chloe was also diagnosed with “Fatty Liver” so far the evaluation suggest diet is what she needs to do but we are not done with this evaluation checking blood work is next!

Neurologist got her to meet her milestones.another stabilized her migraine headaches and this next one will explore her and  cranial headaches;