Chronic Nerve and Back problem or Fibromyalgia since birth?

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      In October when we see Chloe's neurologist, I will show her the daily progress notes  and will discuss this question with her..

Fibromyalgia symptoms are described in the following website.
                                                                                 http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/#adam_000427.disease.symptoms

 Chloe had weakness in her left side of her neck and upper back and diagnosed floppy infant at birth, Now with the proper medication she is now increasing her schedule with out outburst that before we now know would increase in intensity depending on much pain she was experiencing.

We see with the lessening of pain, she is able to communicate better and her ability to physical do things she was not able to do before,

Chloe found the right Doctor to help her work through and hopefully steadily lessen the intensity of this disorder,

September 8, 2014 Symptoms of this Nerve-Migraine disorder that surprises us.

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Symptoms that these medication has uncovered symptoms that we did not expect. The motion sickness medication seems to uncover the first area we need to work on. Chloe complained of her stomach and the neurologist tried  many ways of helping her stomach issues to no avail then finally she tried the motion sickness medication. Then Chloe comment seem to tell the Doctor she was on the right track. Chloe would ask,"So why don't I feel like throwing up?" This is a statement that is repeated in each activity through her day.

Chloe is working with Molly at the YMCA starting twice a week. She is working on stretching her arms away from her body. She maybe working on improving her vestibular symptoms because she now has greater arm mobility now that she has the medication  helps her not feel dizzy or like she will throwing up .

http://vestibular.org/understanding-vestibular-disorder/symptoms

Car rides long distance and stretching exercises use to cause her to exhibit a number of symptoms that we now may point to vestibular issues. Hopefully with the new medication we can increase exercise to help lessen these symptoms and build up her endurance.  Chloe is exhibiting increase endurance most activities and we hope to see continued improvement.



C

Decreasing the migraine symptoms cycle caused by nerve issues in back and neck!

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Our journey is now to track medication that can help with these headaches and how they appear to help Chloe and what symptoms they help. One of these medications works by stopping the body's production of a substance that causes pain,fever and inflammation. Another is a sketetal muscle relaxant that works by slowing action in the brain and nervous muscles to relax. The last one is a medication to prevent and treat nausea, vomiting and dizziness caused by motion sickness. By documenting symptoms and resulting symptoms decreasing from each medication,we have seen a decrease in the intensity of these migraines 

We making some progress breaking the cycle of symptoms to stop the migraines. Chloe will be seeing her trainer twice a week in September and that stretching her shoulders and back will aid in lessening this headaches too.

With the right diagnosis comes the correct meds!

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Unilateral Headache means that the pain only ever occurs on one side of the head, and never shifts to the other. About one in five people with migraine will experienced "side-locked" pains in the head.So Chloe's was born and diagnosed a Floppy Infant, could this condition be the cause of of her neurological issues. I think we can assume the answer is yes.


With correct medication we have seen her goals she is working on are changing and become more challenging. Here are a few·       

  1. She confuses seeing someone verses hearing someone, those two concepts are confused.. The more we straight this out the less she wears ear plugs.(improving)

·         2.Overly fixed on other’s facial expressions but the goal is focus on task. This is improving with verbal redirects.

·         3.Work on not over-thinking a task like of picking up items in stores. Everyone is doing the same just picking up what they need and leave. (improving)

·       4.  Ability to transition to different tasks in house and in the community without emotional outburst (improving)

 5   5. .Shifting focus from  one task to another continues to improve and made more challenging

·       6.  Answer phone calls and answer all questions asked on phone call. Practice making phone calls.(improving). Also working on people have different dialects, nationality and ethnic origins that makes them look and sound different.

Unilateral Headache

                                      Unilateral Headache:
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Unilateral Headache means that the pain only ever occurs on one side of the head, and never shifts to the other. About one in five people with migraine will experienced "side-locked" pains in the head.

However, a one-sided headache, which never moves, can suggest an underlying structural problem, not just simple migraine or tension-type headache.

By far the most common cause of unilateral headache is pain coming from the neck - called cervicogenic headache. Fortunately cervicogenic headache can usually be treated by physical therapy, or a course of painkillers.A "side-locked headache" - pain only ever on one side of the head:

We turned in a 3 month journal to the neurologist and she suggested this is what we are dealing with. The muscle spasm medication has decreased the headaches and improved her arms.

The picture above is from 2005. It shows how she would hold her arms and hands that made as always ask the Doctors "Why does her arms respond that way?". This was some of the time but not all of the time.

The neurologist added two new meds to try. One for motion sickness which she takes when she threatens to throw up (once a week) and she already takes stomach medicine. The other one is used once or twice month when she wakes up with her left eye shut.Both medication first results are promising.

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Through it all! Lessening the intensity of these Chronic headaches!

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Looking through the many pictures of our journeys. This nerve issue in her back surfaced the more she grew so sometimes like in this picture the nerve prevented her arms from working properly but overall she passed for a normal kid then the growth would happen and that caused set backs. When she had these episodes that we know are triggered by muscle spasms in her upper back occur   or she over reacted because she thought it might happen . This would trigger this chronic forehead headache that still are present but the intensity now does not make her drop to the floor. The medication she is using is for spinal cord injury that cause these muscle spasms.

We are entering the next phase. We are back at the YMCA working with Molly arm stretching below the shoulders. We are starting out slow 15min stretching then see if she has any problems the next couple of days. If she does well then move up to 30 min. We are hoping through movement of the arms the headaches will not be triggered as much by keeping that area of the back loosened up. Wish us luck!

I am keeping a daily log that I will report back to the Neurologist on Chloe's progress and setbacks.

Medication is in place

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Seeing the right complement of medication come together in a person and how they start to discover what they are now able to do that was not possible before is fun to observe.

Chloe has asthma and allergies so our high pollen counts are an obstacle but in a couple of weeks that to will be over with. So we continue to document our days for the Neurologist. Noting pollen counts and asthma peak flows so the Neurologist has as much information as possible to see how the medication is working and if anything needs to be adjusted

Environmental issues and the food she eats like having to much sugar are all issues we continue to work on with her. The forehead headaches are still present but less intense. We hope one day to get rid of the pain patch on the left side of her forehead but we are not there yet. With this new muscle spasm medication her primary complaints are the left side of her forehead.Hopefully when pollen counts are lower we will see that it improves even more.