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!