So you think your child may have Dysautonomia?

Though I am not promoting self diagnosis of your child, I do support empowering parents with knowledge and knowing how to move forward when wondering if their child may have Dysautonomia.

Dysautonomia affects the autonomic nervous system (ans).  Dysautonomia can be presented differently in each person that has it, even for identical twins and between parent and child.  The information I present will be based on my daughter's reactions and some of the most common reactions that can occur.  Dysautonomia is not a diagnosis on its own, but a consortium of diagnoses for conditions related directly to the ANS.  Having one or two of these issues does not point toward having Dysautonomia, but having several can lead you in the right direction to a specific diagnosis.

It is very rare for children to have Dysautonomia and never diagnosed prior to the teen years.  Only recently has my daughter's doctor started diagnosing children as young as nine years old.

We knew that our daughter was different as a new born, but could not connect these differences to anything in particular.  As far as we knew, she was perfectly healthy and had symptoms that other babies could have.

Sleeping Through the Night
Our first clue that something was different was that she was sleeping for four to six hours as a newborn. The doctor complained about her sleeping more than a couple of hours at a time and the need to wake her up and feed her.  It was difficult to wake her up and when she did wake up, she would eat very little or not want to eat.  I knew that this was not right, but she was hitting all of her growth and weight milestones.  Well, weight was an issue as she was in the 10 percentile, but the doctor said not to worry as she was gaining weight.  As she got older, she began sleeping up to 15 hours a day.  This was not the normal pre-teen/teenager stay up late and sleep all day.  She would sleep all night and all day.  This was diagnosed as Hypersomnia.

Blue Legs When Held Up Right
Our second clue was that she had blue legs when held upright.  As soon as she was returned to a non-restrictive recumbent position, the blueness went away. At first I thought that people were holding her too tightly and cutting off her circulation.  However, it happened even when I held her.  I quickly learned to always hold her (as a baby) in the recumbent position.  As she got older, we lost track of her legs being blue, but about the age of 10 we started noticing it again and realized that it was the same issue as when she was a baby.  We have come to know this condition as Acrocyanosis.

Projectile Vomiting
Another prominent problem was projectile vomiting. No matter how she was fed or what she was fed, she always vomited her food clear across the room. Even as she grew older she continued to have vomiting after she ate. By the time she was three, it was in better control, it did not happen with every meal; however, we never knew when it would happen.  As a baby, she was test and diagnosed and treated for Pyloric Stenosis.  When she was older, she was diagnosed with Gastroparesis.
 
Early Satiety
In conjunction with the vomiting, our daughter had an inability to eat a normal amount of food, this is called early satiety. She could eat a very small amount and would stop. If she ate too much, she would have stomach cramps and begin vomiting.  We were turned into DHR when she was a year old for child abuse because she ate so little. This was one time that DHR did an investigation and found no signs of abuse because she was on the plump side and well cared for.  This was related to the Gastroparesis mentioned in the previous paragraph.

Frequent Infections
Our daughter had frequent bacterial and fungal infections that affected her ears, her urinary tract, her digestive tract and her skin. She frequently had mouth ulcers, ringworm, and upper respiratory infections.  She has had the flu twice, once when she was three weeks old and the second time when she was seven years old. However, though being heavily exposed to the flu on several occasions she has not had it in the last eight years and she has not acquired the chicken pox.

High Heart Rate
A child's heart rate is much higher than that of an adults.  For a girl, it is typically around 140 when born and for a boy slightly less.  I did not notice any issues in her heart rate as a baby; however, when she was seven or eight, I started taking notice that her heart rate was not coming down.  It was a couple years later before I started asking the doctor about her heart rate.  At the time, they would tell me that it was at the high end of normal, but still normal.  Each time they took her pulse she was sitting down.  About a year later, I found out about POTS and asked the doctor to take her heart rate both sitting and standing.  The nurse that took her pulse could not get it while my daughter stood up because her blood pressure dropped.  Once she found the heart beat could not believe that it was so high and declared that the equipment was broke.  I reminded her that she could take a pulse manually.  She did, again and declared that nothing was wrong.

Low Body Temperature and Low Blood Pressure
Our daughter maintained a low body temperature around 96 degrees.  She also maintained a low blood pressure (90/50 average).  We really did not know about this until she was in her preteens when the doctors we visited started recording them by our request.

Leg Pains (Not Growing Pains)
From the time that she could stand and walk, she always wanted to be carried. She complained of her legs hurting.  She never wanted to go anywhere for fear of being there a long time--standing. Everywhere she went, she was slow, always last and took forever. We thought she was being social or too chatty. It turns out it was always a delay tactic. Delaying the inevitable, standing and walking.

We were somewhat oblivious to there being a problem as she began dancing at two years old and continued for years. She was always active. One day when going through pictures from our church's VBS program, I noticed one picture in particular where she was outside at a table with one of the leaders working on a project while the rest of the group was playing competitively in the adjoining field. I asked her about it and she could not explain why. That is when I started worrying what was wrong.

At this time I started noticing more of her complaints regarding her legs, her sitting down more often, avoiding trips to the store, and taking breaks at dance.  By the time she was eleven, she struggled in dance and began spraining joints regularly. This is when we started taking her to the doctor to figure out what was wrong. By the time she was twelve, she was in a wheelchair. Her dreams for dancing were dashed.  When she was in her teens, she received a diagnosis of Orthostatic Intolerance.

She was early for all her milestones except walking. Though she was not terribly late walking, it was the last one attained and late compared to all the others.

No sweating
Most babies don't sweat and usually don't start until around puberty.  Our daughter never did sweat, even as a competitive dancer who practiced for six hours a week.  We later found that she had Hypohydrosis.  It was specifically because of this condition that we eventually found out by our daughter having Dysautonomia.  For others, there can be an issue with excessive sweating, in our case, it was the opposite.

Other Possible Clues
I don't know if these are clues of her condition; however, they were very unusual. She was very alert as a baby, even in the first few weeks, it was like she was studying everyone and everything.  She did not cry very often and was very easy going.

Just and FYI -
There are many more conditions and symptoms related to Dysautonomia including migraines, passing out, sensitivity to sound and light, muscle weakness (floppy baby syndrome), etc.  Research everything you can and if you believe that your child has Dysautonomia don't stop going to the doctor and getting the right answers.  We only found out when realizing that my daughter's diagnosis for Cholinergic and Cold Urticaria did not address all of her problems and kept telling the doctors that she did not sweat.  It took 12 years to get their attention and a confirmed diagnosis and an additional three years to get a successful treatment for many of her issues.

My daughter not only has Dysautonomia (Orthostatic Intolerance and POTS), but also has Cholinergic Urticaria (Exercise and Heat Induced), Cold Induced Urticaria and Ehlers Danlos Syndrome III.

My Favorite Websites / Blogs

Websites:

Cold Urticaria

www.coldallergy.org

http://www.jaoa.org/content/101/5_suppl/1S.full.pdf 

Facebook:

Kidz 4 CU
Cold Urticaria Parents
Cold Induced Urticaria
Cold Urticaria- Yep you can actually be allergic to the cold.
I really am allergic to cold!

Blogs:

http://www.pilgrimagegal.com/search?updated-min=2013-01-01T00:00:00-05:00&updated-max=2014-01-01T00:00:00-05:00&max-results=36

Ciprodex - Fluoroquinolones

http://floxiehope.com/2013/07/28/ciprodex-poison-marketed-to-children/

Articles:

 Cold Urticaria

http://www.washingtonpost.com/lifestyle/on-parenting/how-to-parent-while-having-a-chronic-disease/2013/11/06/fae3176a-463d-11e3-b6f8-3782ff6cb769_story_1.html 
http://www.today.com/id/41466518/#.UnKUWVOojAc
http://abcnews.go.com/blogs/health/2012/11/15/kids-allergic-to-the-cold-literally/
http://www.dailymail.co.uk/health/article-2113825/Abbie-Tully-12-allergic-cold-deadly-allergic-reaction-slightest-chill.html
http://usatoday30.usatoday.com/news/health/medical/health/medical/coldflu/story/2012-01-23/Allergic-to-cold-Its-a-real-condition-experts-say/52759906/1

http://www.nbcnews.com/health/allergic-cold-gene-detectives-find-new-clues-1C6435965

Advocacy

 http://www.parentcenterhub.org/

Walking the Walk Part II

With much anxiety, we returned to our journey of seeing doctors attempting to get answers. To our amazement, the first leg of our journey went very smoothly. We found a local specialist for our daughter's Dysautonomia. He changed her meds which has given her a new lease on life. She is no longer chained to excessive sleepiness and excruciating pain when standing from the blood pooling. The jerks are very minimal. They are now being expressed as aggressive hiccups, but not as bad as before.

We took the second leg in our journey attempting to get a diagnosis for the joint issues.  To our amazement, the doctor had diagnosed our daughter two years ago with Ehlers Danlos.  Sadly we were never informed. I was so exhausted at the time from bad doctors visits that I never even asked for a copy of her records. Regardless, having this answer right off the bat was such a relief. We were able to get a script for physical therapy from a physical therapist who understands what you can and cannot do with someone with this condition.  We are currently trying to find someone locally, if not, we will just travel back north at least monthly for her to learn what she needs to do.

Do you know what a relief it is to have answers? It is amazing. We may not like the answers, but we now know how to work with our daughter to give her the support she needs. We now know that there are answers out there. I know that I will forever take my husband on appointments with us, he is now our rabbit's foot. Every time he is with us, we get answers.

Medicating for Cold Urticaria

No one medicine that you or a child can take on a daily basis will prevent you from breaking out to cold once you have CU.  As a matter of fact, researchers have found the best outcomes come when mixing two or more (H1 and H2) histamine blockers.  They have also found a marked improvement in reactions when Singulair is combined with at least two antihistamines.  In English, H1 blockers are your everyday antihistamine allergy meds.  H2 blockers are antacids. 

In most studies, they have found that Cyproheptadine (Periactin), Hydroxizine (Atarax) and Montelukast (Singulair) provide the best control on the majority of patients; however, doctors never start out using these meds due to their side effects.  For children, doctors will start with over the counter meds and preferably with non-sedating meds like Claritin and Allegra.  For individuals with more complex reactions and/or are resistant to these meds, doctors start working their way to more powerful meds and those that are sedating. 

Any given combination that works for one person is not guaranteed for another person.  If you don't find what works for you keep working with your doctor to try other combinations.  As a child grows, they will out grow their dosing, so if a med stops working, talk to the doctor and find out if doses can be increased or determine if your child needs a new med.

Also, when a medication causes drowsiness, a doctor will usually suggest you or your child taking it before bed time; however, some will experience the drowsiness at the time of waking up or early in the morning as the medication is wearing off.  You may find moving the time the med is taken to earlier in the day (2 hours earlier) so that the wearing off of the med occurs during the night, the child will feel much better in the morning.

In our experience, no medication and no combination of medications prevents all reactions; however, the difference in what they do prevent is the difference between being functional and non-functional.  Preventing reactions is a multi-tiered approach involving medications, preventative actions in where you go and how you dress and knowing when to just say, "no, I can't do it."

First Step in Walking the Walk

>> Previous Post >>TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.>>>>

We had completed the first leg in our journey of Walking the Walk.  A week ago Monday, we visited the Dysautonomia Clinic.  Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later.  One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in.  We were the first ones there, but we made it.

We all went into the nurses office.  She asked many questions, some no's, but many yes'.  As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing.  Her dad and I remained in the waiting room until the testing was completed.  Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not.  It left me a little nervous.

The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor.  In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time.  He was in his 70's a little feeble looking, he kept asking some of the same questions over.  I allowed my daughter to answer all the questions that she could with out me interjecting.  However, there were times the brain fog crept in.  It was difficult for her, she was either confused or forgetful.  I answered when I could.  I soon realized, he was testing her brain fog.

On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176.  Based on the testing, we found that her current heart medication was not working.  Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication.  He calmly explained the change and that most with DYS respond well to the Beta Blocker.  He also suggested two other medications.  One she had taken before which would both help her sleep and also prevent the jerks.  The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.

He wants us to follow up with him and keep him aware of how she is doing.  He knows the meds may have to be adjusted and is willing and ready at any given time.  He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.

We are now one week out from the appointment.  The first full night of meds was like a miracle being performed.  TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up.  This has continued every morning since.  Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks.  She did not know what to do to fill all this extra time she is awake.  Not just up and moving around, but truly AWAKE.  The first day she talked nearly non-stop.  That has stopped, but she is once again like a "normal" person.

Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.

Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold.  We give so little, yet ask so much.

Thank you, Lord, for your many blessings.  We love you and remain faithful during the difficult times and we choose the same during the good times.  May we continue to honor you in all we do!

A Beauty Quickly Fading

This journey is not ours alone.  It is shared.

A couple years ago, we met a beautiful young lady.  She was at the State Fair in a booth showing/advertising her well trained dog.  She was part of a program that trained dogs for therapy, her standard poodle was her therapy dog.  This young girl had E. B.,Epidermolysis Bullosa.   Her arms and legs were wrapped for protection.  Her dog was there for her support.  But she didn't just take, she gave back.  How courageous she was to be seen at the fair looking "different" than everyone else, standing out in the crowd.  She had spunk and energy that did not waiver.  She suffered a great deal of pain that no one could take from her.  Despite this, she showed courage, strength and a giving nature.  This is where beauty comes from, it comes from how we handle our situations in life.  We can be courageous or we can be cowards.  Which ever path we choose, it will shine through on the outside.

I am so glad that even though I did not get a chance to know her well, I was able to share the journey with such a beautiful young lady.  Her life was cut short.  May God bless her and her family.

 Has your life beaten you down? Are you a beauty that has faded? Or, do you choose to beat your circumstances down?  Do you refuse to fade, but to stand out in spite of all else?

Walking the Walk - Again!

We are starting our journey of visiting doctors once again, walking the walk.  When every we take this path along our journey, it feels like we are walking on a tight rope over a raging gorge.

TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.

We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos.  TLC is now having problems with nearly every joint subluxating with every movement.  Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected.  She is still finding new tricks that she can do.  She needs braces that will help prevent the movement of her joints from sliding around.

TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes.  It appears to be Retinal Migraines.  A lot of people I have talked to have had trouble with them in both their eyes.  TLC only has them in one eye right now.  Because it is in only one eye, it is commonly triggered by some bad sources.  We are praying that it is not and like so many others will eventually improve and go away.

Doctors are almost always difficult to work with; some get it, but most don't.  Some already have the answers with total disregard for what is actually going on.  Some are just plain crazy.  Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.

This is our journey and we are walking the walk, once again!

Enjoying the Simple Things Amidst the Chaos

We have had so much going on in the last few days.  We just wanted to share with you another step along our journey of dealing with Dysautonomia, Cold Urticaria and Ehlers Danlos.

People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer.  Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.

Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.

Recently, we were invited to a suite view of our local baseball team.  We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect.  As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in.  Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive.  We made it...through the whole evening of activity and enjoyed it all.

Last night we had the opportunity to go to the Capital Sounds Band's summer concert.  We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud.  The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave.  On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music.  Unfortunately, it smelled like a bathroom so we left at intermission.  We enjoyed what we could and we were content as it was more than what we can usually participate in.

Later in the night there was an attempted home invasion.  Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit.  For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.

Borrowed from Wikipedia

"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."

My description:
Jerks are like giant hiccups.  They can affect just the head, arm, leg or they can affect the whole body at once.  TLC has had it affect the whole body.  But yesterday, it was just in her neck.  It is terrifying and can be very painful especially when the jerks are hard and sudden.  For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.

We enjoy life and are content with the little we can be a part of.  Check out the post previous to this one and you will see why.  Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity.  May you be blessed and enjoy the simple things in life.

Then your light will break forth like the dawn, and your healing will quickly appear; your righteousness will go before you and the glory of the Lord will be your rear guard. Then you will call and the Lord will answer; you will call for help and He will say: "Here am I." Isaiah 58:8-9

 

The Healing Cancer is a tough disease—not just for the person who has it, but for their family also. When first diagnosed with it, many people feel their life is over. Although family and friends try to make life easier, it’s still hard for them to fully understand the pain the person goes through, both physically and emotionally. Often, the person with cancer can feel like they’ve hit bottom and have only two choices: give up and die, or rely on God for their healing. That was the case of the woman with the serious bleeding problem in Matthew 9:20-22. Having had this condition for over twelve years, she knew she only had two options and she wasn’t willing to die. Instead, she put her faith in the One who claimed to be the Son of God. Having faith in Him, she stretched out her hand and touched the hem of his robe, and was instantly healed. Did his robe have some magical healing power? No. Was her healing caused by something she did? Yes…but only in the sense that she—having no other option—reached out to the only one that could save her. Her healing finally came after many years of searching. God can use people in the medical profession or He can do miracles. You can trust Him to heal you, no matter how long or what form it takes. Ultimately, God wants to heal you as much as you want to be healed. Once you trust the One your healing comes from, you will not be disappointed! Today’s One Thing Although God often uses man to heal, trust in God alone for perfect, complete healing. Going Deeper Jeremiah 33:6; Malachi 4:2; Luke 6:17-19; Revelation 22:1-3   This is shared from an email that I received from IntentionalLiving.com

Go Ahead and Cry

In 2007, my father-in-law passed away following his third heart attack.  Two weeks later, my husband had his first heart attack.  Everything went well for my husband as he recovered, he practically danced out of the hospital the next day.  Not long following my husband's successful recovery, he had to return for a follow up procedure to add one more stint to a nearly blocked artery.   His return visit was nearly his last.

I sat in the waiting room with family and pastor waiting for the procedure to end expecting to waltz out of the hospital the next day.  There was no damage to the heart from the mild attack.  There should have been no complications from the current procedure. I had prepared myself that the procedure could go longer than expected. I had no fear when it did.  I could hear the doctor's name being paged multiple times over the intercom.  I thought his office was trying to get a hold of him. I never thought that is was my husband barely hanging on to life.

The doctor's primary nurse came out and told me that there were complications and they were having trouble resuscitating my husband.  An hour or so later, the doctor came down and confirmed that they were still having trouble.  The doctor could not even look me in the eye to tell me.  He suggested that we go up to ICU to see my husband, just in case.

Before we left, I cried.  People that I didn't even know came up to me to console me, to tell me that as a Christian, I could put my trust in Christ to take care of him, that I could put my hope in deliverance by grace.  They told me that I did not have to cry.  Those with hope don't cry.  To keep from making more of a spectacle of myself, and to alleviate the fears of those around me, I quickly wiped the tears away.

My husband was in the hospital for a week recovering and during that time I lived in the waiting room.  On one occasion, I walked down the hall, sat down and had an all out cry.  Every thought, every stored emotion poured out.  No one was around.  I did not have to think about anyone else.  I was able to unleash the frustrations and fears and deal with them one at a time through the tears.  Crying is okay.  Crying is therapeutic and brings you in touch with raw, honest emotions.  I was able to bring closure to these emotions and begin to build a bridge toward a healthy touch with reality.

As a mom with a child that has three rare conditions, Cold Urticaria, Dysautonomia and Ehlers Danlos, I consistently face frustrations dealing with changes in symptoms, changes in medications, doctors, schools, church leadership and friends that don't understand.  For every step I make forward, I fall two steps backward.  There are times I am scared, times I am mad, times I am crushed and I times I don't know what to give.  But, I have always left myself open for when it all becomes too much, to step away from the crowd and have a good cry.

When I am done, my mind is clear, my resolve is stronger and as a mother of a special needs child, I am ready to take on her world once again.  Believe it or not, it made my faith stronger, it brought me closer to my Christ.

P.s. My husband is alive and well. :)

Encouragement - YOUR Weaknesses, HIS Strength

From IntentionalLiving.com

YOUR Weaknesses, HIS Strength

Cerebral Palsy patient, 14-year-old Jack Carroll, was a contestant on Britain’s Got Talent, and pushed his walker onto the stage to entertain the crowd. When asked to tell a little bit more about himself, he replied, “I’m a professional gymnast!” The tension snapped like a twig and the crowd burst into roars of laughter.

Backstage, before his audition, Jack had recounted, “I use Cerebral Palsy in my act because a lot of times, in comedy, your weaknesses are your strengths.” What a powerful concept!

The simplicity of Jack’s idea can be instrumental in your walk with God. He is the only one who knows your heart, your mind and your inner workings. He can “raise in power” what you do in weakness to truly change your life (1 Corinthians 15:42).

He knows you, and He knows your heart. Be encouraged in His strength, despite your weakness.

Today’s One Thing

Are you willing to surrender a personal weakness to God so He can turn it into a strength?

Go Deeper

1 Corinthians 15:35-49; 2 Corinthians 12:1-10

Section 504? Students with Disabilities in the United States are Protected by a Section 504

Section 504 — just what exactly is it?  
You've probably heard about it, but every school district addresses Section 504 in a different manner. Some districts have even been heard to say, “We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional.

What is Section 504?
In the United States, section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.

Who is covered under Section 504?
To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability).

Who is an “individual with a disability”?
As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” Based on the third option, you can have a chronic condition without a name and still qualify for accommodations.  This is important for parents who are waiting to see a specialist and/or are having a hard time getting a diagnosis.

What is an “impairment” as used under the Section 504 definition?
An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities”
Many students have conditions or disorders that are not readily apparent to others. They may include conditions such as specific learning disabilities, diabetes, epilepsy and allergies. Hidden disabilities such as low vision, poor hearing, heart disease or chronic illness may not be obvious, but if they substantially limit that child’s ability to receive an appropriate education as defined by Section 504, they may be considered to have an “impairment” under Section 504 standards. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students.

Can a teacher, principal or district refuse to provide you a 504 meeting?
No!  A 504 determination meeting is usually organized by the school counselor and is handled as a committee.  Once you request a 504 determination meeting, there has to be a meeting.  No one individual can refuse your meeting.  The committee as a whole will determine based on your child's presentation whether or not to move forward.

When can you start the process of a 504 meeting?
Any time that school is in session.  It is much harder to have a meeting the last week of school, but it can be done if you determine that your child has a need and this is the first you learn of it.

What is the difference between an IEP and a 504?
My explanation is very basic and will not cover all the differences.  Typically, an IEP is for a child with an intellectual learning disability and a 504 is for those with a physical disability.  However a child with both intellectual and physical disabilities only need to have an IEP which will cover the 504 needs.  A 504 is legally binding upon your school district just as an IEP is binding.  Don't allow anyone to convince you otherwise.  Attitudes and support will change from one school to the next and one teacher to the next.  If a teacher and/or district refuses to follow your 504 plan, you can follow their chain of command straight to the Board of Education, Superintendent and Governor if necessary.  When all else fails, get a lawyer.  When that fails--Homeschool.  Sometimes the fight is not worth it.  The district will suddenly want to help you when you leave them.  This is because your child is worth a lot of federal dollars to them, but only when enrolled.  You have to decide if it is worth it to stay or go.

Will the school district voluntarily offer services for your child?Usually not.  You have to know what you need and ask for it.  Keep in mind that with a rare condition that they have never heard of, they don't understand what the child will need.

When can you start planning for a 504 meeting?
 If your child is in preschool and you are looking to the future and planning ahead, this okay, go ahead and get your school district involved.  School systems receive extra dollars from the federal government to identify children early and to help prevent learning difficulties. Despite this, they can be reluctant to do their part so be ready to push and be the squeaky wheel.

Where do you start?
Start with the doctor, ask him/her to help you with your 504 letter.  They will stipulate in the letter what needs your child has and what types of accommodations need to be made.  However, not all doctors understand the 504 process, what needs to be included or how specific they need to be.  You can write an accommodations report for the doctor and ask them to review it, make necessary modifications and sign it.  Be honest in your assessment though and don't ask for more than you need.  This can only hurt you later on. Once your child is identified as being on a 504 plan, that designation follows them all the way to college.  Once this is approved, go to the school counselor and request a Section 504 meeting.  They will know what you are asking for.

What happens when the child's needs change?
You change your 504 plan.  You can request an update meeting at any time through out the school year.  Modifications can be made.  You should always have a meeting at the beginning of the school year and again at the end of the school year.

Impairments for those with Cold Urticaria
Listed below are considerations to be taken for children with cold urticaria.  Depending on severity of the symptoms, you may not need to address certain items, but select the ones that are most important for your child's needs.

In our state, you must declare in your 504 if you anticipate your child missing an excessive number of days throughout the year for being sick.

• At no time should your child be separated from or be made to stand out from other children in class unless there is no reasonable accommodation.
• Should the child be injured in such a way to cause swelling, DO NOT apply ice.  A compression bandage can be applied and elevating the effected area.  Call parents if severe.
• If CU symptoms are severe, all teachers, not just child's teacher, substitute teachers, hall monitors, security officers, office staff, nurses and bus drivers should be made aware of child's condition and how to protect child from excessive exposure.
• When excessive absences are necessary, request to have a tutor come to your house to help your child.  This will give you home bound status.
• Request a set of books to stay at home so that when there are absences, you can get your child's assignments and help them with their work while out.  Especially if you don't have home bound status.
• Spell out the signs of an impending reaction and other co-reactions such as Asthma like symptoms, Reactive Hypoglycemia, Excessive Tiredness, Headaches, flushing, scratching, nausea, vomiting, diarrhea, confusion, listlessness etc.
• Let them know that child can be reactive to cold without actually being cold.  This can lead to child overheating when applying additional layers of clothing or wearing coats in the class.
• Standing outside in the cold/wind/rain - 
• School should allow child indoors before school starts when other kids are not allowed in before a certain time.
• School should allow child indoors after school when waiting for a parent to pick them up when weather dictates.
• At no time should child be outside when temperatures are below______ degrees, when it is raining or has recently rained (still wet) or is windy.
• A special needs bus should be arranged to pick up child to and from home and climate must be well controlled.  This is necessary for field trips as well.
• Child should be allowed to either a)remain inside with a teacher during a fire alarm, or b) be allowed to go to a neighboring school/business or c)allowed to sit in a teachers heated car.
• Child cannot participate in outdoor activities during Physical Education class when temps are below __________, when raining or when breezy.  Alternatives can be established in place of PE such as staying in the Library, Office or helping tutor other grades in another class.
• Classroom / Indoor expectations
• If the child is reactive during the winter or summer with the A/C and the school does not allow coats indoors, request that the child be allowed to wear jackets, coats, mittens etc. indoors to prevent a reaction.
• Establish that a portable heater should be used in the class and that teachers and other students do not have the right to commandeer the heater for themselves.
• Teachers should not wait for child to ask for help, they should provide it!  Younger children don't always remember to put on a coat/mittens, take their meds or avoid certain areas without being reminded.
• Rooms with water leaks allow for dampness and excessive moisture in the air. Broken windows, older buildings and portable buildings tend to be drafty and hard to control climate wise and all should be avoided for child's wellbeing. We have requested that my daughter be transferred to a school that was new built over the older buildings which were very drafty and had insufficient heat and air control.
• Let them know the minimum temperature for the child and how the classroom temp should be set.  Some kids have a minimum of 10 degrees; however, other kids can have a higher limit.  My daughter's is 70 degrees.
• Teachers should supply an itinerary of what will be learned at the beginning of the school year and a weekly assignment list at the beginning of each week. This can be posted online or sent home to the parent in writing.  If the teacher so desires than can even use a smart phone to take a picture of the assignments that they write on the board and email it to the parents.
• Teachers should be talking with parents by email, phone or in person immediately when child begins having a decline in their grades.  Don't wait for report cards to determine there is an issue.
• If child has an issue with excessive tiredness at school and at home, a time limit needs to be set for the amount of homework that can be completed.  The teachers should accept what is completed and not expect it all to be done.
• Sometimes state and national testing times can present a problem for the child.  These weeks of testing are heavily controlled and prevent the child from taking meds on time and being able to leave the room if necessary.  You can stipulate that the child will be absent during that week and will be allowed to make up the testing.  Make up test times are not controlled and the child can have a snack if hypoglycemic, take meds on time and/or leave the room for a warm room if necessary.
• In the event a class is rewarded with an ice cream social, the school is to supply your child with an alternative.  Don't leave them out.
• After School activities and Field Trips
• In no way should a child be excluded from after school activities and field trips if their needs can be accommodated.  Find out how your child's needs can be accommodated and spell it out for them.
• Children should be assigned a buddy if reactions are severe and there are not enough adults to monitor the child. 
• Medications
• Specify what medications are to be taken, when and how.  In the event of an inhaler or Epi-pen you can even stipulate that the child retains possession of the meds and can medicate themselves if appropriate.  If maintenance meds are given and need to be taken at a certain time, this can be identified in the 504 as well.
• Provide child with a medical bracelet and let them know that the child has one and to contact you when needed.
• Let them know that the condition is known to get worse and kids tend to outgrown their medications which can lead to an adjustment period of changing meds and an increase in absences.

No direct access to the doctors
Never give the school nurse or school district direct access to the child's doctors.  All communication should go through you as the parent.  This is a new trend, but no where in the law are you required to give them access. I have seen this go bad easily. Nurses that talk to doctors get manipulative and your child gets fewer services than what they need.

If they do stress you for contact, you can give them a form stipulating exactly what they can and cannot ask of the doctor. The doctor should get a copy too. Such as, they can verify that the children are being tested and treated for Cold Urticaria and its related diagnoses, but no other information can be given out without a parent's written permission. The school system cannot refuse to allow attendance based on your refusal, this would be a violation of your child's 504 and ADA rights.

 

Play After Every Storm

I added this to my facebook page "Praying for TLC" over a year ago. But it is worthy to be posted here.

Borrowed from Wikipedia - Matthew Joseph Thaddeus Stepanek, known as Mattie Stepanek, was an American poet, who had six books of poetry and one book of essays all reach The New York Times bestsellers list. He became a peace advocate and motivational speaker, and lobbied on Capitol Hill on behalf of peace, people with disabilities, and children with life-threatening conditions.
In 2002, Stepanek began a three-term appointment as the Muscular Dystrophy Association National Goodwill Ambassador.
Stepanek suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy that resulted in his death. Mattie Stepanek died three weeks before his 14th birthday.
A eulogy was delivered by former President Jimmy Carter, who said,
"We have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek. His life philosophy was 'Remember to play after every storm!'"

What a wonderful story to find as I sit here during a major storm that is sweeping our nation. Not only do families of children with special needs deal with natural storms, but also health crises. Each crisis can be a storm unto itself and each storm can manifest a multitude of crises. May we learn to play after every storm.  - March 2012

The Daunting Notion of Homeschooling

With homeschooling, the benefits are wonderful. Benefits start with the health issues of course. Since we started, TLC has had very few breakouts to deal with, fewer sprains and less stress.

Your child is able to take learning at their own pace. They can be quick at learning or can slow it down. In our state the only two requirements state that we must be in a homeschool cover and that the children must attend school 170 days a year. A day is defined as four hours. Most often times the work is done in two hours or less and the rest of the time can be spent on practice problems, "homework," or field trips. A school year is defined as August to July.

You can easily take days off when the kids are sick and start right back a day, two days or a week later.

You can go on vacation whenever you like.

As long as you include the basics, English, Math, Science and History, you can teach anything you want and how you want. Public Schools teach for the SAT/ACT tests. The teaching is usually rushed and is usually geared regardless of the slowest child in the class. With homeschooling, you can teach them the way we grew up learning, breaking it down and knowing the details.

If your child does not understand a topic and does not do well on a test, you can do the topic over again or do the test over again once the problem areas are worked out.

The cost does not have to be very high. You do not have to teach. As a matter of fact, with the exception of Algebra, I do not teach, the software does. Also, I do not have to be present, I work 8 hours a day. Mind you, my daughter is much older and loves to learn so I know she doesn't get distracted doing other things. The software also helps just in case I am not sure. I also break her four day down into two segments. She works two hours by herself in the morning and I work with her for two hours in the evening.

Lack of socialization is not a problem either. With the right homeschool cover, church activities or other activities that you participate in, kids are well socialized. You could arrange for kids to come to the house to play.

Homeschooling is no where near as scary as it seems. You and the child will need dedication and commitment to set apart time during the day and stick with it everyday possible. If you get backed up, be committed to get caught up during the summer or when time is available during the regular school year.

You can do it, it can be done in an affordable way and the kids will love it!!!

Live and Let Live

Having a child with a life threatening condition is scary.  A parent worries about every environment where the child exposed.  Preparation and planning are important for every trip.

In the early days of being diagnosed, we were very protective of our daughter.  In part because we did not know what we were dealing with.  Also, she was be putting on meds that did not always help.  We slowly learned that others were not as protective of her when she was outside of our care, no matter how much we prepared them.  Yet, there was fear, fear of not knowing what would come.  All the what if's.

We did not live in some far remote area where we could be in a cabin for half a year and have no where to go the other half.  We were in a sizable city and very active.  Our child was a social butterfly, she had experienced eight years of being out and about, being social prior to her development of Cold Induced Urticaria.

Because of her diagnoses and the limitations that come with them, she became a prisoner in her own home.  She could only be out when her father and I could be around.  She even had to be homeschooled.  Her only opportunity to be socialized was at church, during the Miracle League season and through her violin lessons.  She went from being very outgoing prior to the health issues, to being withdrawn.  Her hope for getting better was gone.  In just a couple years, her childhood was gone.

We were able to get her on medications that helped stabilize her conditions.  We decided to allow her to live as a child and not as a prisoner; as much as reasonably possible.

Swimming - A big no, no!  Yet, she can swim for up to 30 minutes at a time in an unheated pool while on her meds.  On a 100 degree or higher day, she can swim for an unlimited amount of time.  We still have to go through a routine when she comes out of getting her dried off immediately.  However, she got to be involved, she got to be a child. We even take trips to the beach (rarely) where we just sit on the beach, no swimming.  She still gets the excitement of building sand castles and digging holes in the sand, chasing the birds.

Sports - This one is a biggy.  It impacts her on every front.  However, with the support of those in charge, modifications, sports can be safe.  We chose to allow TLC to participate in the Miracle League.   She is able to play baseball each spring.  With her team, kids can play when they are able and don't have to worry when they can't.  If TLC has to leave mid game, she can.  No problems.

Shopping - The doctors were completely against us buying a wheelchair for our daughter who has Orthostatic Intolerance with severe blood pooling and Ehlers Danlos.  However, since we bought it, she has been involved in every facet of life, once again.

Trips out of town - Wow this is a big one.  Put in someone else's care when we as parents cannot be around.  This one is still hard, because it depends on the willingness of those in charge of watching the kids to ensure her safety.  Some just don't get it.  But if you get to send one off with your child that gets it - WONDERFUL!  If we don't have enough faith and can make the trip, we will go with her on out of town trips.  She doesn't make every trip, but some.  ANGER ALERT!  We as parents should not have to be with our child on every trip because other adults don't want the worry.

In every case we are careful.  We plan and strategize and prepare for safety, but we choose to live, we choose to let our daughter live.  We gave our daughter her life back.  She is okay with it and understands that there are consequences.  She accepts the consequences from overdoing it.  But she is happier - she gets to be the child (ahem - teenager) she was meant to be.

Emergency Kit for Cold Urticaria

Things that we carry with us in the event of an emergency on the road or out and about.

My daughter cannot use an Epi pen due to her high heart rate from the Dysautonomia.  If you have that, put it number one!

1.   Medical Bracelet - We use a USB bracelet that self installs on any computer.

2.  Information Sheet - We put all her diagnoses, meds, doctor names and contact numbers, allergies, special instructions such as warming all IV fluids, prior surgeries and other pertinent information for an Emergency trip to the hospital.

3.  A coat - this goes everywhere with us.  We use a hoodie during the summer.

4. Hat, scarf and gloves goes everywhere during the winter.

5. A blanket - This stays in the vehicle for use while out and about.  We use it at the doctor's office often where it is usually cold.

6.  Hot Hands - This is a brand of hand warmers that when exposed to air gets really hot and lasts for ten hours.

7.  Extra meds - keep labeled bottles in your purse or vehicle for those emergency needs.

8. Umbrella - Seems obvious, but easy to forget.

9. A change of clothes if there is any chance of getting wet.

If you allow your child the opportunity to swim, one parent on the FB group Parents of Children with Cold Urticaria recommended heating blankets in the drier and putting them in an insulated tote.  The towels stay warm for a long time.

To Medicate or Not to Medicate

I grew up in a military family that traveled the world over.  We did not stay in any one location for long.  We saw our grandparents, aunts, uncles and cousins once every few years.  We really didn't know anyone all that well or know them for long.  No one in the immediately family had to take a maintenance medication.  When we did get sick, the military prescribed ibuprofen and antibiotics for everything.

When my daughter first started having hives prior to a diagnosis, she was put on five different medications all at once.  She had to take every medication every day to prevent the hives.  We quickly took her back to the doctor each time one proved to not work or made her feel worse.  We went back so many times that the doctor finally told us there was nothing else he could do for her.  She either lived with the side effects or lived with the hives.

After six months we found an over-the-counter antihistamine that made a significant difference in preventing reactions.  Unfortunately it was not enough, but by this time we knew what she was allergic to, Cold.  Within a couple months later, a second off-label medication was added.  The two meds together changed our lives.  My daughter was able to leave the house more frequently and for longer periods prior to breaking out.  As parents, our world no longer revolved around crisis management strategies.

For the first three years I was bound and determined that the doctors would test for every cause to Cold Urticaria and confirm or rule out whether or not we could find her trigger.  There were times that we thought the meds were working to cure her and would attempt to take her off of them.  Like a headache, the meds were supposed to be a cure. Sadly, she continued to react. We found that during the summers she was more tolerant of cold that she was in the winter.

We did not want her on this medication all the time.  I did not want to imagine the damage that these drugs could do long term.  My daughter was on a medication as a baby for a long period for stomach issues.  After a couple years, the drug was removed from the market as it was killing babies that used it long term.  I no longer trusted drugs, other than Tylenol and Advil.  The doctors were frustrated with us trying to wean her off hoping she was cured.  We were frustrated with them for not doing more to prevent her symptoms.

She never could be removed from her meds.  Not only did she have severe physical reactions, but psychological reactions as well.  She has been on them for seven years now.  They have truly made a difference in her ability to function and be functional in her environment.  She still has breakthrough reactions, but nowhere as severe as she did without the meds. 

Prior to the controlling meds, she had three anaphylactic reactions.  She has had none since.  The meds do not mask her reactions, but actually prevents them.  It delays the reaction time and allows us the opportunity to prevent more severe reactions.  They allow us the time to get her to a safer environment.

Should you medicate your child?  It is a hard decision, but a necessary one.  I hope my experience will help you in making that decision.