References

-Overcoming Multiple Sclerosis: an Evidence-based guide to recovery, by George Jelinek
http://www.ucsfbenioffchildrens.org/education/multiple_sclerosis_and_school_concerns/index.html
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Students-with-MS-and-the-Academic-Setting_-A-Handbook-for-School-Personnel.pdf
http://www.nationalmssociety.org/Treating-MS
http://www.protectyourpavement.com/Organizations-we-support.html
http://en.wikipedia.org/wiki/List_of_multiple_sclerosis_organizations#United_States
http://www.webmd.com/brain/brain-lesions-causes-symptoms-treatments
http://drgaryhardy.com/multiple-sclerosis
http://www.nationalmssociety.org/What-is-MS
http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/definition/con-20026689
http://www.webmd.com/multiple-sclerosis/guide/what-is-multiple-sclerosis

Conclusion

This experience has taught me so much about multiple sclerosis.  I learned a lot and was able to educate my family and friends about MS, how it effects children and what we can do as teacher to make a classroom environment where students with MS can feel safe and comfortable.  I feel more confident and secure in my knowledge of the disease that my mom has.  I know what may come and I am more prepared for what the future may bring.

Medication

There are many medication options for individuals with MS. Finding the right medication depends on the type of MS as well as the lifestyle of the individual.  For example when my mom was deciding what medication to take she had to chose between a small shot given everyday, a slightly larger shot given every other day and a large shot given once a week. As the amount of medication on the shot gets larger the side effects of the shot last longer.  With the small daily shot there are very few, almost unnoticeable symptoms.  With the slightly larger shot there are some nausea and flulike symptoms the day after, but not every time the shot is given.  With the largest shot the nausea and flulike symptoms last longer and are worse. In the end my mom chose to take Rebif and give herself a shot every few days.  Although the symptoms are annoying and at times frustrating she decided that getting a shot every few days was the best option for her.  Some other medications are:

Aubagio
Avonex
Betaseron
Compaxone
Extavia
Geilenya
Lemtrade
Novantrone
Plegridy
Rebif
Tecfidera
Tysabri

Each medication has pros and cons.  The individual with MS should discuss the medication best suited to them with their doctor.

Someone with MS

MS is a disease that effects more people then some may believe.  Almost everyone you talk to know someone with MS, whether it be a family member, friend or neighbor.  When my own mother was diagnosed with MS we found more and more people who were effected by MS. The wife of my parents former stake president has MS. A man down the street was diagnosed 10 years ago and just last week a young hirl in their ward found out she also has MS.  Jenna (name changed) is only 7 years old. She is happy, smart and loves to spend time with her siblings.  Although it was very last minute her mom took a little time to answer some questions for me about their experience. 

Tell me a little bit about Jenna.

Jenna is 7 years old.  She is in the 1st grade and love going to school! She loves reading new books and playing outside.  She especially likes to play on the playground at recess.  She is so kind and is a great big sister. 

What first had you take Jenna to the doctor? What clues did you see that told you something might be wrong?

We first started to notice that something was wrong about 8 months ago.  The first clue we had was that Jenna had a seizure.  We took her straight to the hospital. Over the next couple of months she was tired and did not really seem like herself, we knew something was wrong. Doctors did lots of tests and finally a few weeks ago were able to tell us for sure that she had MS.  

How did it feel to get the diagnosis?

It was honestly a little bit of a relief.  We finally knew what was really wrong.  We had been so worried for so long it was nice to finally know what it was.  We had a jumping off point.  There is that part of you that is sad but I choose not to think about that as much.  I don't want it to define her. We are going to do our best to make her life as normal as possible. 

What accommodations are being made for her at school?

Nothing yet.  Since she was so recently diagnosed we are just watching to see what kind of needs she will have.  The only major thing is that since she missed so much school with doctor visits there are some small changes that are being made to try and catch her up.  She gets tired at school sometimes and so her teachers are being a little more lenient with her than before.  

Has your home life changed at all?

Since Jenna was diagnosed so recently we have not had to change much yet.  We are still trying to decide what kind of medication we are going to start, but after that life will change a little bit.  We will also have to be aware of her condition getting worse.  We are going to have to be aware and willing to adjust where needed.  But overall we just want her to feel as normal as possible.  She is only 7 and we want to give her a happy, full childhood even though she has MS. 

Accommodations in the classroom

Children dealing with MS may require different things that normal students. Because of the symptoms they experience with having MS some accommodations may need to be made for them within the classroom.  Following is a list of symptoms students may have and the accommodations a teacher may make to help the student.

• Overall weakness, fatigue and poor balance: Avoid excessive walking, keep one set of books at home and another set at school, make it possible for the student to rest when needed. 

• Memory loss: depending on the level of memory loss using note on tests may be appropriate, they may not be able to remember all the steps to complete a math problem or the speed in which they process information may change.  When taking tests it may be appropriate to allow the students to use notes and books. 

• Eyesight: visual changes may occur without warning.  Seating students near the board may help.  Having the students tell you if their eyesight changes during the day.  

• Stress: Stress makes symptoms work therefor the teachers should be flexible and understanding as much as possible.  Work with the students to create the least stressful environment possible. 

• Bathroom Use: Allow the student to sit near the door so they may exit quietly without distracting the other students. 

Options for families with children

It is said that one of the best options for families of children with MS is counseling.  Especially during adolescence those children will have a hard time.  Not only are there changes happening within their body because of puberty, but there are also changes happening because of MS.  MS causes a metal and emotional strain on the child.  Because the child is in adolescence they want to be more independent of their parents.  Without parents to rely on, having an adult they can talk to is a really good idea.  

Families should also have a very open discussion about MS, what it is and what is going on.  Ignoring it and pretending like the child is completely normal is not the best idea. Being open about the disease will help the child stay positive and be less embarrassed about what is happening to them.  Some say that helping children gain as much knowledge about MS as possible will help them to be less worried and more confident in their social interactions. 

Interact with other children with MS.  There are many ways to meet other people with MS.  there are discussion groups, support groups and in many cities there is a yearly Walk for MS. Connecting with other people and especially children with MS can give hope, support and more information about new research on MS. These groups can help children feel less lonely, more confident and more aware. 

Children with MS

Although MS is mostly diagnosed in adults, the numbers of children and teenagers being diagnosed has been rising. MS is through to progress more slowly in children than adults. The symptoms of MS in children usually begin with Acute Disseminated Encephalomyelitis (ADEM). These symptoms include:

• Headache
• Lethargy
• Coma
• Seizures
• Stiff neck 
• Fever

With ADEM these symptoms eventually end.  If these symptoms continue they may have MS. Children with MS can have the same symptoms as an adult such as; loss of memory, vision, motor skills, numbness, and possible inability to walk. Along with the physical consequences of MS there is also a psychological effect on children. Adolescence must deal with developing, school and self-esteem. Just like adults, adolescence with MS have attacks, times of remission and can be  slightly controlled with medication. 

Statistics

• 85% of people initially diagnosed with Relapsing-remitting MS.
• 10% of people are initially diagnosed with Primary-progressive MS.
• Most people are diagnosed with RRMS between their 20's and 30's.
• Most people diagnosed with PPMS between their 40's and 50's.
• More than 1/2 of those with MS have vision problems
  
  
  
  
  

Primary Progressive

Lesions on the spine

10-15% of those diagnosed with MS have Primary-progressive. Primary-progresive MS is often shortened to PPMS.  When an individual has PPMS the syptoms come slower than RRMS. There are less lesions on the brain and more on the spinal cord.  Unlike RRMS, those with PPMS do no have times of remission.  The symptoms come slowly and do not go away.

Relapsing-remitting

Brain with legions vs. brain without

85% or people with Multiple Sclerosis have the Relapsing-remititng course of MS. (Relapsing-remitting MS is often called RRMS.) With RRMS the symptoms come faster.  Because of this there can be more damage to the myelin and therefore there may be more lesions on the brain and spinal cord. Relapsing-remitting MS is when there is a period of repair and recovery after an attack, or relapse.  During times of remission symptoms get better.   Although remission can be a relief it does not mean that the person is completely back to normal. There are usually lasting side effects from the attacks.  As in the case of my mom, she lost feeling in her legs during the initial attack. Over the past 3 years she has been in remission.  Over time she slowly regained feeling starting at the top of her legs and working down to her feet.  During remission she has regained almost all of the feeling in her legs and feet but she can still feel the numbness between her toes.  She said it does not hurt, but is annoying and is a constant reminder of how blessed she was to regain most of the feeling in her legs and feet.

What is Multiple Sclerosis?

mul·ti·ple scle·ro·sis

Myelin surrounds nerve fibers in the nervous system.  When the myelin is damaged it stops or slows the messages going between the brain and the spinal cord. If the damage is bad enough the nerves may begin to deteriorate. Multiple Sclerosis when the immune system attacks the myelin surrounding the nerves. When the immune system attacks the nervous system lesions can form on the brain and spinal cord.  When the nerves are badly damaged, scar tissue is formed around the nerves and the brain cannot connect with the nerves. When the brain cannot send messages to the nerves the body does not react in the way the brain wants.  Sometimes this means numbness in the extremities, other times it makes it so the individual cannot walk. There are two kinds of MS, Relapsing-remitting and Primary Progressing. The symptoms differ between the two, but there are a few similarities. Usually syptoms of MS start later in life, usually between 20 and 40 but cases of MS are starting to become more common on children.  Since immune system attacks myelin differently in every person, the symptoms between individuals differ widely.  Symptoms may include: loss of memory, vision, motor skills, numbness and inability to walk. Although many people suffer from MS and it has been known since1868, there is no solid evidence for what causes MS. The people effected are so widely different it is hard to find one cause. It has been suggested that a lack of Vitamin D can cause the disease but nothing is known for sure.  Doctors believe that finding MS earlier in life may open doors to find what causes MS and a cure. At the moment there is no cure for Multiple Sclerosis but there are medicines to make the attacks less frequent.

My connection to Multiple Sclerosis

In the second season of The West Wing, President Bartlet discloses that all through the election and his first year in office he has suffered from MS. Throughout the season the white house was under investigation for misleading the American public to vote for someone with, what most people thought, was a terminal disease. They educated the public about MS and in tern without realizing I learned a lot to. I had no idea that picking up little bits of information about MS from this TV show would ever help me later on in my life. 

About six years ago my mom began to feel numbness in her feet and legs.  After lots of tests the doctors could not figure out what was wrong.  I am sure that my mom did not forget about it but I certainly did.  

Three years later the symptoms came back.  She felt numbness in her toes and did not think much about it. The numbness slowly moved up her feet to her legs and then up her legs.  My mom is not the type of person who complains and so she kept it to herself. After a full week of this numbness she finally told my dad.  My dad was worried and so they went straight to the hospital.  In the ER they had no idea what the problem was.  They checked her into the hospital and began tests.  After trying lots of different tests to find out what was wrong, they found lesions on her spine.  They diagnosed her with Relapsing Remitting Multiple Sclerosis. 

They hooked her up to an IV to give her a steroid and waited in hopes that the numbness would subside.  

Although I was not the person diagnosed with MS it really affected me.  I was up at BYU-I at the time and my parents only gave me very little information about what was going on.  All I knew was my mom was in the hospital with MS. Ironically, I was watching the last season of the West Wing at the time.  The day after finding out my mom was diagnosed I was on the episode that the President has a horrible attack. His attack happened on his way to China for diplomatic meetings. The attack causes him to be paralyzed. Watching this episode hit a little too close to home.  The only information I had on MS came from this show and now the show showed what kind of future I was sure my mom would have.  It was devastating and terrifying.  Little did I know, MS effects everyone differently.    

Over the next few months I talked to my mom constantly to see how she was doing and make sure she was okay.  Now  she is doing fairly well.  She has changed her eating habits a lot, she is now vegan. She exercises regularly and tries to stay as healthy as possible.  She has to give herself a shot every other day.  Whenever my brothers ask her how the shot was they lovingly call it "shooting up".  Every time she gives herself the shot she does not know exactly what to expect.  Some days she is fine, others she is nauseous and tired.  Although it is not ideal, the shots seem to be helping.  She has not had an attack since but really, it is just a matter of time.

My mother with me and my sisters

On the day I asked my mom if could interview her for this project she said she would be happy to, but she did not know how much she will be able to help. She said that eventually she stopped reading about MS because she did not like seeing where she may be in the future. I am doing this project for her. She should not have to be weighed down with that knowledge. I want to know more about MS.  I want to be educated.  This blog is my attempt to learn a wider range of knowledge, not only for my mom but so that one day when I have a classroom I will know what I can do to help a student with Multiple Sclerosis.