SLOW AND STEADY PROGRESS!

Chloe has a video to share with everyone but still having problems with this eblog cooperating may need to switch to another type of blog to accomplish that. So hopefully can resolve these technical problems soon.

So lets review where we are at. Chloe has been found deficient in Iron and Vitamin D and taking supplements daily. She wears over the counter pain patches on her left side of her forehead and top of her left shoulder. This last month Chloe's symptoms got worse and her medication for motion sickness was increased and seem to help her left hand ability to grasp objects. She likes her thermaspecs that helps her to work through issues better. She continues her time with Molly at the YMCA and the errands we do in the community so we continue to figure what works and why. As Chloe gets better the more information she gives us like after stretching exercises at the YMCA she may experience tingling in her left hand and arm for quite a while after. 

Chloe can describe symptoms and we can decide if it is a big deal that maybe a call to her doctor is warrented,

Causes of acute vision? Blood test uncovers possible reasons

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This last Saturday Chloe went to get lab work done that 
her Neurologist requested.

We were surprised by the number of tests the doctor order.

Results so far has shown a deficiency in Iron and vitamin D. Her nurse gave us the correct dose for her to take daily and check blood levels in 2 months.

Deficiencies can be a cause for visual acuity. So we are waiting for the rest of the results to come back while we attempt to get iron and Vitamin D up to therapeutic levels.

So we will see if we are on the right track during this time.  

Tinted glasses to prevent Migraines

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                                        Seeing the neurologist every 3 months we have a lot to tell her about. One important item was how well she tested with the optometrist and he found her eye sight to have  extreme acuity. The neurologist suggested we try these glasses to see if this is part of Chloe's headaches. We have had them for 2 days and this is what we found so far.

• She likes them and says they help with her forehead headache pain
• She does not try to  find things to argue about as we are driving. She is looking around and listening to the radio quietly.
• She does not take the glasses off while we are out in the community
• So far we are both happy with her reaction to them. These tinted glasses look promising in our headache pain relief toolkit 

,Chloe's stamina and activity level has greatly increased while the use of pain relievers has decreased. We will try to increase her activities and see how these headache preventing glassed fit in. We continue to keep a log of our activities and review it every 3 months with the neurologist. We will call monthly with updates or questions.

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.

Chronic headaches triggered by upper back issues!

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Chloe was born a floppy infant and needed rehabilitation therapy to sit, walk and all the growth milestones, She was the one doctors said had the biggest problem because she is 5 feet 9 an a quarter inches with a T-shaped body. The doctor said if she was only shorter or have a different body type this condition would be lessen. When she went through growth spurts her symptoms got a lot worse but symptoms seem to get better when she came out of the growth spurt.

Chloe has been working physical therapist, occupational therapist and a neurologist who have a theory that some people with chronic headaches are triggered by upper back issues. She has been working with this group for around 5 years;

So the Doctor suggests this is a spinal cord issue causes back spasms and chronic pain in her fore head. This problem also has a focusing problem which causes difficulty with her sleep cycle and awake cycle. Chloe was given a muscle relaxer for spinal cord relate muscle crapping issues. Also she has been taking medication to improve  her awake and sleep cycle. She is icing her 15 to 30 min. a day.

The combination of medication is very promising and I am documenting for the Doctor the symptoms  Chloe describes and what we use to lessen the intensity. This stage has seem to finally steer us in the right direction. She is using less pain  medication and  Chloe is doing slowly more and more different types of activities.

The daily log of symptoms and what works and what doesn't is helpful for the doctor to see what is the many faces of this illness.

Spinal Cord issue

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Chloe is being treated by a Neurologist for a spinal cord injury that she was probably born with that causes chronic headaches. She is put on a muscle relaxant that is used for the treatment of spinal cord issues so far it looks promising.

I submitted a daily log for the past week 6 weeks describing our days for the Doctor so she could see what we were up against. The prescription pain patch I put on her back where two of the physical therapists said they felt a knot in that area. Chloe sounded totally relieved and now points to her back as a primary concern and asks for that patch in that area since. After the long drive to the office Chloe laid flat on the exam table and had an ice pack under her head and did not exhibit the anxiety they were use to seeing out of her. Long drives also trigger these issues.She voiced her opinion on all the questions the Doctor ask. Chloe was a big help in demonstrating that we are on the right track.

Symptoms we know so far:

1. She was diagnosed a floppy infant at birth.
2. Had to receive rehabilitation services to meet all her crawling, walking and so on.
3. Size and shape matter: She is 5 feet 9 inches and has a T-shape body. Doctors told me the smaller the less severe the problem seems to be.
4. Chloe spends a lot of time at a desk top Computer where she reads on many different subjects. We go on errands in the community and walks seems to stretch out the problem area which is helpful too.
5. Chloe bought a new bed for herself  so when she has problems we may find her stretched out in her bed watching TV too.
6. Chloe on I work an hour or two a day on I Pad games and on Laptop for email and Facebook the goal is to get her familiar with the different times of Computers and see which one she will be the most independent with.

We are hoping to improve her stamina so she can get a part time job like she wishes to. We hope to get back to the YMCA to work on stretching the arms out the Neurologist suggested not over head but from the shoulders down would not aggravate this condition.

Physical disabilities that trigger headaches

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The neurologist has given Chloe many different tools use a to figure what these headaches  are and possible ways to treat them. So far there are 3 types auditory, visual and overheated head with ice cold hands.

Tool that has given us more details is icing the head for 15 minutes every morning seems to lessen the intensity of these headaches so Chloe can more accurately describe details of each type of headache.

1.  In this picture you see her with a vision headache hard to open her eyes. When she is asked what hurts she will point to the left side of her fore head just above the eyebrow most of the time but occasionally it is right side forehead . She uses topical analgesic on her forehead which helps this one.
2.  Her auditory headache is usually helped by playing instrumental CD's as a warm up in the morning and wearing earplugs to help not trigger a headache when  she goes out  and does errands or outings.
3. Vascular headache is when her forehead gets very warm but her hands feel ice cold or lukewarm. This one maybe from exercising or carrying groceries from the front door into the kitchen are a couple of examples. Tens unit on her back 20-30 min. once or twice a day, pain patch on her back and forehead and over the counter migraine medication are some of the tools for this type  

We are beginning to hear Chloe's opinions and fears. Her favorite line is, "I can't handle this or that!"on some outing. If she brings up something we address it one issue at a time.

We will see the Neurologist at the end of this month. I have typed up a log of symptoms and Chloe's activities daily for the past month. The Neurologist wanted more information and it appears I will give her that.

Understanding not all physical disabilities fit the sterotype!

                                                    Physical disability
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 Physical disabilities is described as the inability to use arms, or trunk because of paralysis, stiffness, pain or other impairments. Chloe issue is nerve which she has been dealing with since birth.

Chloe's size and T-shape body type all played into the severity of her diagnosis. When we went to SSI and produced a Neurological evaluation from when she was 13 months old it was approved so fast it was amazing. Compliments from the SSI worker to Chloe as to how she over came a lot to get to this point and she should of got Disability since birth. We just never got around to it.

I hope you notice in this picture above the  left shoulder is slightly higher then the right shoulder. She saw 3 different  physical therapist at different times who worked with clients who have  headaches  that were due to upper back issues. The headaches were different types but did include Vascular Headaches  all having different severity of pain when she gets them.

So  Chloe has real good days and then headache days. We are working on strengthening her up to get a part time job and see if all her Neurologist interventions will help her make that happen.

Physical disabilities have good days and bad. Please do not judge a person with a "Physical Disability"by the way they look from day to day and realize there are many factors involved to get her to this point.

Stabilizing Vascular Headaches

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This is what Chloe could do before she willed herself to walk at 2 years old. She sat and scooted around in a sitting position or just sat and played and had random behavior outbursts that was normal for her age or there were other incidents that had us scratching our heads.

The neurologist questioned vascular headaches and asked us to check the temperature of her forehead and her hands and feet We found her head to be unusual hot where her feet and hand lukewarm to cool. One of the treatments was to ice her head. She started using an ice pack for 10 to 15 minutes before she got out of bed in the morning. So far we can report back to the neurologist the icing the head is a better preventative treatment then if she had one of these headaches using it as an intervention.

Chloe also switched using the Tens unit to the afternoon which also seem to help with pain issues most effective at this time. The 4 probes are also 2 between her scapula and 2 on her back at the base of the neck. Now she is able to use an over the counter pain medication  or a topical Analgesic to deal with less intense headaches.

We are working on the issue that if Chloe gets a headache as she goes in a place she thinks it will happen again at the same place so we are challenging this idea that her headache is not blamed on the place

As a former social worker, I have decided to chart in a log of Chloe's activities, symptoms and treatments tried daily for our next visit with the neurologist. So she can get the big picture of what we are dealing and see if she can suggest anything else. So far icing the head before Chloe gets up has proven to be the biggest help to stabilize something!

Continuing to figure out what works!

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When Chloe was growing up she had problems through growth spurts and her left shoulder was higher and asymmetrical with the right shoulder. She had challenges meeting developmental milestones because of the left shoulder and side of the neck.

The medication that the neurologist gave her greatly improved this condition but did not totally fix it. Chloe is five feet nine inches with a T-shaped body, doctors have said if she was shorter or had a different body type her symptoms would not be so bad.Tens unit, icing the top of her head when she is hot to touch, helps when the nerve "short circuits" so to speak and lessens the intensity of the episode.

I am documenting a week of working with this very temperamental nerve and what we found worked and what did not for Chloe's neurologist. Some of these are very easy remedies but hard to believe that they work this well. It took a friend of mine who was treated nerve condition convinced me that icing is a powerful pain reliever for nerve issues.  When to use each is important too. Right now the tens unit she uses it at night because that is best time.

We hope to show Chloe's doctor how icing helps her discomfort that is exhibited as panic attack like symptoms and how it lessens the intensity of these symptoms  

We have the right medication and tools to work with this condition. When to use what is the "trial" part that takes the time!

Sometimes a Prescription pain medication can make symptoms worse

  

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Prescription pain relief when it is working it is pretty amazing but it can become problematic very quickly. The neurologist cut the medication back and worked to protect the stomach but her pain issues were getting worse. So I requested a prescription pain patch which the neurologist agreed with. Chloe wears a prescription patch on the left corner of her forehead and an over the counter patch at the base of her neck.She can get over the counter pain medication when she asks but most pain medication is topical. Symptoms of problems with the pain medication was stomach issues, constipation issues and extreme discomfort or unexplained pain issues. The neurologist said we had to try something different and protect Chloe's stomach and as you can see by the picture above so far we seem to be doing that.

Brief update

Chloe continues to make progress with the prescription pain patch (cut to the size needed) on  her forehead just in front of her hair line and above her eyebrows with the medication to decrease possibly swollen  nerve ends. So far Chloe has greater range of motion in her neck and can open her mouth wider then ever before. These pain patches in the right place on her face has seemed to complete the treatment.

Hopefully we can keep up with the treatment of gentle stretching and range of motion to stretch out this nerves to get them to work the best they can. We will work on community outings to get Chloe more comfortable with her new abilities and see what more she can do. Weather has been an issue but hopefully we are past the worst. The Neurologist has given us some possible diagnoses but right now we are more interested to see how much recovery we can achieve.

Since Chloe's birth I thought it was something treatable with the right Neurologist but never would of guessed what it was and the medication used to treat it. Amazing when everything comes together!
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Neurologist teaching us symptoms of Visual and Nerve headaches

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The small patches at the top of Chloe's fore head are prescription pain patches They are taking care of the nerve headache on her left side of her forehead. Vascular headache maybe as simple as the blood flow being obstructed by this abnormal or damaged nerve area. Here is my report to the neurologist.

  

1.  

   Vascular headaches Wed. and Sunday

a.     Ice pack on forehead and top of head for 5 minutes each seem to lessen warmth of forehead.

b.     Hands were as warm to touch as her forehead but her feet were lukewarm heels and ice cold toes.

3.     At the Y we checked out her left arm it is responding like the right arm and has about as much endurance it appears. Left arm working well sofar!

4.     The exercise ball is what she sits on to work on her arms with Molly the fitness trainer. Chloe has always liked the exercise ball and has one at home.

5.     Could possible the exercise ball be helping her push the blood flow through the damage nerve area in the forehead?

Continue to identify and work through symptoms

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The neurologist hearing the symptoms that we discuss. Said she felt Chloe is dealing with a vascular issue in her fore head. She wanted to know more suggesting  when her head hurts check her hands and feet letting the doctor know how they felt. Since treating it seems to best work topically she also suggested cold compresses try to. The doctor says I should keep good notes like I have. The more she hears what works and does not work the better picture of what the problem is.

I told the neurologist that the medication Chloe is on to reduce the nerve pain issues is helping Chloe give a more accurate picture of her other issues. Also the new focusing medication is also helping to find other issues and figure out ways of dealing with them. Chloe is becoming a more active part in working through her medical issues so the medications she is on seems to be the right ones.  

Lots have happen this month let us see if I can put it into words.

UPDATE!
1. This appears to be a nerve problem due to the pain patches and topical analgesic work the best and main focus is the forehead. We are also putting pain patches on the forehead now.
2.The Neurologist gave Chloe a stronger focusing medication which helps to get better descriptions from her.
3. Chloe is able to show me where she wanted the Tens Unit and the pain patches ended up in the same area. I would never imagine them there.. Thank again, for Chloe's improved ability to tells us where it needs to go.
4.We also have used stronger stomach medication and find the headaches are improved when also treating the stomach at the same time.
5. Cold weather is also a trigger so Chloe has started to where a lined cap pulled halfway down her forehead to protect the area in question. She has gone out in some very cold weather with out falling apart afterward with the use of this cap.
6. The stretching exercises she does with her fitness trainer Molly the Neurologist feels is stretching out the nerves in her head and shoulders.  Because of medication she takes the nerves are not enlarged like they were so they are being strengthen to respond normally.
7. With more details from Chloe we can share with her Doctor what is working and what isn't and thankful for the Neuropsychologist recommending focusing medication for her to begin with

We continue to make corrections but have seen a great improvement in her condition that she  has been dealing with since birth.                                          
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Neurologist Appointment and goals for the next 3 months

                           
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Every time we go for Chloe's Neurological appointment the Doctor is pleasantly surprised and happy with Chloe's progress. I explain the exercising Chloe is doing at the Y with her fitness trainer. The Doctor liked it and said now the swollen nerve ending were not swollen we were stretching out the nerves in her head, neck and shoulder areas and getting them to work in the right way to the best of their abilities.

Doctor is concern some of Chloe's pain medication that could be causing stomach issues. So we developed a plan to work on that. She adjusted her other medication and suggested I give her an update in 2 weeks how things are going and of course sooner if needed.

In 3 months we will check in with the Doctor again but I will call her with updates or if we are having any problems for suggestions.                                                                              www.chloethekinesthiclearner.com, 

                                 

Identifing the symptoms of this disorder!

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It has been over six months since the neurologist gave Chloe an old time antidepressant that is known to shrink enlarged nerve endings. The medication caused her to have greater range of motion in her neck and she had better use of her left shoulder and arm. Chloe is able to open her mouth wider then ever before. She is now able to talk about her issues which we complied on a sheet of paper and will take it in to discuss with her Neurologist this week and how we can manage these symptoms better.

She is seeing Molly her fitness trainer to work on getting her arms to work in the space around her body twice weekly. Her self care skills have shown improvement.Our goal is keeping her other skills up while we improve her arm control away from her body and start off with a very part time job. Being in much less pain we have seen her academic skills improve also. We did tell the doctor that we had over 14 issues to discuss with her and she said it appears the medication is doing it's job.