New neurologist different treatment approach

Chloe saw a different neurologist, his area of expertise is in adult neurology,neuromuscular and neurophysiology.Chloe discussed with him the burning scalp on the left side of her head, One
eye unable to open the eye lid  for a period of time while having a migraine and the throbbing of her forehead on the left side and uneven eyes or face distortion when these headaches are occurring. Also waking up between 5am and 7am with throbbing pain in her head and goes back to bed after getting a muscle relaxer and topical pain relief placed on her forehead.

He gave her a preventive therapy to reduce migraine frequency. Chloe headaches were not responding to acute treatment so sometimes preventive medication works better. He gave her a low dose to be taken at bed time.
We have seen steady improvement she is in less pain sleeping through the night. If she has a headache it seems much less intense so far.
She saw an eye doctor this week. He actually felt her eyes have improved and no side effects noted from the use of this medication.

Timeline Uncovering a unique Physical-Neurological Disorder

June29,2018 Botox Treatment

                                                Botox treatment
Chloe received her first Botox treatment on April 30,2018. She received 2 shots in each temple and 2 shots in each jaw joint. This was an attempt to stop her teeth grinding caused by facial pain! We were surprised at her reaction. She giggled all the way home and was unusually happy said she really liked how it felt.

She started complaining about her forehead pain about 2 weeks after. I kept track where on the forehead I put the topical pain ointment which seem to be in the same place on the forehead I put It most of the time. Orajel servere was put on the upper gum line above her teeth. When I mentioned this to the oral surgeon he suggested we meet to treat these areas I mention. This appointment was set for May 30,2018.

Before that we went up to our cottage and spent 4 days sight seeing. My husband comment that this was the best vacation she had and Chloe agreed she loved it too!

Chloe saw the oral surgeon on May 30, I pointed out the area above each temple and above the eyebrow that she consistency has problems with. He applied Botox to these areas and the jaw and temple areas. Everyone saw her smile and how quiet she was responding to questions ask of her. It was another significant relaxing change after Botox. She did awake at 12:30 in a panic and needed to be talked down. In the morning she felt like throwing up and unable to make a decision.. The week after the second Botox injections she needed more topical pain medication and I even tried the tens unit pointing the probes at the lowest power for 15 minutes a couple times a day till the pain subsided..
Now she still has face pain but much less intense. Muscle relaxers and topical pain relief works the best with now occasionally using the tens unit to aid in reducing the pain.

Now we check in with the Oral surgeon monthly assessing if the pain os increasing or not. If the pain comes back like before treatment we may need to consider another Botox treatment due to increase facial pain! So far we are in the monitoring stage. I will try to keep you posted monthly in our progress

Treatment of Nerve Pain and Nerve Damage

For 26 years we tried to identified this problem that Chloe had that was greatly impacted by her growth and body size and shape.

Chloe was diagnosed a”floppy infant” with the weakness on the left side most notable, because of this we suspected it could  of been a stroke or some genetic weakness on the left side upper back.

Nerve damage has a wide array of symptoms and it depends on the location and type of nerve. The nerve pain can occur in youe brain, spinal cord and peripheral nerve which are located through out the rest of your body. Chloe’s was more sensory nerve damage and had symptoms like pain,sensitivity, numbness, tingling or prickling, burning sensation and problems with positional awareness. Of the more then 100 different types of nerve damage each has many different symptoms and may require different types of treatment. There is an estimated 20 million Americans suffering from peripheral nerve damage and more interactive with othe



Chloe saw a neurologist for around 10 years for headaches and generalized pain. When Chloe became an adult the Doctor prescribed and anticonvulsant which also treated nerve pain and muscle relaxers. We found her more positional aware , interactive with her world. She also talked about things she remembered from her past even when she had problems interacting at the time


While Chloe was going through this she had 4 wisdom teeth and two moles removed. She was still had excessive teeth grinding and facial pain. She also grimace like she still had facial pain and headaches. The neurologist gave her a prescription creme to use on her forehead to block nerve pain she had in her forehead. The oral surgeon suggested we try orajel as many times as needed. This was over the counter but triple strength. When Chloe was having problems I applied it to the gum line just above the upper teeth. She said that really help but not for long. The oral surgeon then suggested Botox injections he does for people who excessively grind ther teeth! We agreed but this will need to
be done 3 to 4 times a year and cost would be out of pocket. We are still trying to figure out if we have the right dose but Chloe said it was a big help and I guess she confirmed we are on the right track.
 We continue working at the YMCA with Chloe Trainer to loosen up Chloe shoulders.upper back and arms with range of motion exercises. Also we work on understanding how to act with community intergration activities and what needs to be done in each situation,

This is how we dealt with nerve pain Chloe is experiencing!

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We may of found what we were looking for!

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     Since Chloe's birth 25 years ago, we have been trying to figure out Chloe's weakness on her left side of her neck and shoulder in hopes she could recover  from these weaknesses.

Getting a team together was the first step. Finding a neurologist was the first team member. She saw Chloe  every 3 months and we would call with updates at the start. Hearing what we had to say, she may adjust Chloe's medication or make other recommendations. She encouraged me to take pictures of what I was talking about and get better  at describing what we saw to help her see what we were seeing. Second member of the team was Molly who worked with Chloe at the YMCA. She has a bachelor degree in Kinesiology (the study of mechanics of movement and her Master's in sports administration was helpful to. The third was her dentist who removed 3 molars and 4 wisdom teeth during this time also!

Chloe had this unexplained weakness on her left side since birth that could of been a genetic malformed nerve bundle that would even cause her to collapse on the floor at the start. We worked with Molly to develope an exercise program to get her shoulder to navigate her arms around and away from her body without trigging headaches and to build endurance. Her Doctor was a big help lessening the intensity of theses headaches through medication.

Sessions would have Chloe sitting on an exercise ball and Molly standing next to her ,she would position the ball in different areas around Chloe.This was to see if Chloe could reach , grab the ball in these areas, then do it several times in a row. We called this ball therapy but the ball was a tool to check out Chloe's shoulders range of motion. We used this technique to see if her shoulders could position the arms where we wanted her to and how many times could she repeat that.

Then about a year and a half ago and since Chloe was an adult, the doctor suggested she try a epilepsy medication that is used for partial seizures and neuropathic pain. This took about a year to find the right dose. We saw a steady improvement with the use of her arms , reduction in headaches , endurance and cognitive ability.

Our last appointment we gave the Doctor a positive report and now Chloe will see her every 6 months.Chloe can now accept schedule changes like everyone else, before she was hysterical about any schedule changes even the smallest changes. She is now able to tell us when her back hurts. Chloe can tell you what happen in the past and what caused plans to change. Her pulse, blood pressure and breathing (asthma) are within normal ranges.

Molly's report summed it up that Chloe's range of motion has improved  and she is able to perform most exercises without looking like she is in discomfort,

Recovery continues!

November  30,2017

Chloe is making recovery work with this medication that treats epilepsy and neuropathic pain. She still has headaches but less frequent and less intense. She is giving us more information  as to issues  we need to work on. We go and do community errands every day. Chloe works on finding the items we need paying for them and getting a receipt. This works on her language skills and knowing what is needed to purchase items. We may park at a short distance from where we are going and practice how to cross the street with street lights and without lights. She is a concrete person that had to be convinced she did not have to listen to Christmas music all the time but could take breaks and listen to regular music too.

She sees her fitness instructor for her adaptive fitness sessions. They work on exercise that Chloe has to follow directions, like touch the wall with your right hand or reach to the ceiling with your left. She is improving in following directions and improve her body awareness. We are also working on getting her to understand to ask questions and first demonstrating what kind of questions she may want to ask.

Chloe has headaches but much less intense . Her eye site is acute what I see as a line on the eye chart she sees letters and can tell the eye doctor what the letters are. I have to ask if she got them right and the eye doctor says "Yes"! Her teeth seem to be the major health issue. We really do not understand  why but after the removal of 4 wisdom teeth and 2 molars it still is an issue. Dentist suggests to stay away from baking soda or whitener that seems to be part of the problem and is helpful. Straightening her conversational speech and ability to follow directions  continues

Is the treatment working?

Medication is working with  minor adjustments.The medication that treats epilepsy and Neuropathic pain has been the major stabilizer of this disorder. When these headaches do occur an NSAID that is non-steroidal and anti-inflammatory is very helpful. She is on a muscle relkaxer daily that prevents the spasms, cramping and tightness of muscles from escalating . When she goes on long drives or other activities that trigger motion sickness she wears a patch behind her ear to prevent these headaches from starting.

Her teeth have been an interesting factor to these headaches. Chloe has had 4 wisdom teeth and 2 molars removed which has seem to lessen the intensity of when headaches occur. Chloe use to grind her teeth contiuous but now grinds her teeth pre and during headaches is still noted but with less intensity and topical pain relieve seems to work the best.Headaches seem to be trigger by her menstual cycle, eclipse, and other weather event. Her left arm and shoulder when she uses them tended to trigger these headaches. Her work on stretching her left arm and shoulder muscles with her trainer at the YMCA . It has helped to decrease the intensity and improve use of left arm and shoulder alone and in unison with her right shoulder and arm!

Chloe is challenging these headaches by Community integration activities. She does "errands"in the community and works on making purchases and making a list of tasks each day and be ready to use plan B if something is preventing the completion. We are always looking for other activities that will challenge her endurance.

This maybe a malformed nerve bundle in her back that is possibly a genetic abnormality.