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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

My Roller Coaster Life

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Second Annual “Blogging for TSC Awareness Month” Day 21

by guest blogger Paula Krischel  (Dwight, Illinois)

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Living with Tuberous Sclerosis, and having children with Tuberous Sclerosis, is always a rollercoaster of the unknown. You never know when this disease is going to put a tailspin on our health.  The constant stress of dealing with insurance, therapy, school, doctors, sickness, testing — it all gets to you when you only have 24 hours in a day. That is not including everyday work that needs to be done around the house, bills to pay, events to get to, and the list goes on. It is a never ending battle to not show how badly this disease can affect how I feel.  The day must go on, and even though I am a stay-at-home mom, a lot is depending on me to make our every day routine run smoothly.

I realize nobody is safe from having symptoms from this disease.  That really hit me a couple years ago. I have lived with this disease symptom free for 42 years.  The only time there was any symptom was when I had seizures when I was little, but at that time there weren’t MRIs to diagnose Tuberous Sclerosis. I went years thinking I had childhood epilepsy that I outgrew at puberty.  As I get older, the hardest part is dealing with the emotional aspects of this disorder. I find my anxiety seems to get higher as I try to learn to juggle my health, my boys’ health, and all the obstacles that come with this disease. My kidneys have taken the biggest hit from this disorder.  I have to take a pill for the rest of my life that is considered to be a chemo drug that has all new symptoms that can happen to my health.  It is really hard to stay positive when you feel like crap inside. The hardest part is that people think you feel like crap because you’re overweight, which I am, but it really does not come to that. Of course losing weight could help me, but so much with this disease, there is no guarantee that will solve all of my problems.  I hear blood pressure, cholesterol, and all that good stuff will be better, but the fact is, my wonderful miracle drug that I have to take for my kidneys cause both of those to be bad. It is a struggle that I am still trying to learn to balance but with the fatigue, lower back pain, and symptoms nobody wants to really hear about, it is a daily problem to try and get better. I now have to take medicines I hate to take, but my family needs me so I take them.

10269590_10203152870534585_7703347996202116662_nThe best part of this disease — it has made my family stronger. NO ONE is not affected by this disease in our family.  My son Josh, does not get to always have a normal childhood because his brothers got sick, had a seizure, or are just off from their autism. Most children are privileged to have both parents go to award banquets, sporting events, and school plays. Not our family. Most days we have to take turns going so one parent can stay home for our other two boys that have Tuberous Sclerosis as well. My husband works very hard to take care of our family and to help out as much as possible when I am having bad days. He truly is my rock, my best friend, and my soul mate.  He does not judge me; he gives me time to spend with friends and helps as much as he can with the boys.  This disorder has put us in many different stressful situations, but with our faith, we always seem to conquer the obstacles one by one.

The most important part I have to remember is to always take a proactive look at my health so I can be there for my boys. Please, to all of you adults out there, be proactive. You never know when you will have a new problem with TS. At one point I was really having bad back pains. I found out my tumors growing in my kidneys were causing the pain. Always listen to what your body is telling you and get things checked out. I had to start Afinitor immediately so I could avoid surgery.  To me that is my best option because I still need to take care of my family.  I may feel like I am an 80-year-old lady at times,  but with my husband by my side, I know I can push through anything. He is my best supporter, along with my 15-year-old son who would give up anything if it meant helping his momma out. I am a very lucky woman, to have such a wonderful family.  I also have some amazing friends that get me out of the house when I just need a break from the hustle and bustle of everyday life. It is also wonderful to live in small town America, with a population of 4200 people.  Everyone knows our children through school, church, and being out in the community, and I know they have our backs if our children are ever in need.  It took me a long time to accept this disorder, but now I am determined to do everything I can to live a long healthy life.  It is important to be here for my family.

Another important thing to do as an adult with TS is find some kind of support. I know not every family member can understand how you feel, friends don’t always understand, and people can feel alone. I found solace in getting to really know some wonderful women and men on the Tuberous Sclerosis Facebook pages. NO ONE is affected exactly the same with this disease, but there are enough similarities that you can get ideas to ask your professionals to see if it may help you or your loved ones. These people live our life, they pray for you, give you encouraging advice, and can make the healing process bearable as we fight on for a cure. I feel very rich by the friendships I have made, and I am ready to help those who are just learning about this disease. I will give EVERYTHING, but UP!!  I will trust in God, trust my doctors, and trust my family to be by my side as I battle this incurable disease and battle to be the best I can be. Thank you for listening.

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Read more about Paula’s family in her guest post for last year’s Blogging for Awareness.

Please also check out her son Josh’s contribution last year from the perspective of teen with an affected mom and siblings.

 

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Current Events, Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Spilled Milk, the “R” Word, and Trees

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Day 19 of Guest Blogging for TSC Awareness

By guest blogger Josh Krischel  (Dwight, Illinois)

Josh and his parents.
Josh and his parents.

Life is full of lessons, as well as people who teach us these lessons, instructors if you will. When reading that first sentence you might have thought of an elder who has given you some words of wisdom, or maybe a code of life your parents always told you to live by. However, when I think of the most important lessons in my life, I don’t think of my grandparents, or my dad teaching me how to mow the lawn. Nor do I think of a single thing I’ve ever learned in school. What I do think of is the much more important things I’ve learned and continue to learn from my two absolutely amazing brothers who have TSC, Adin (13) and Mason (17). Adin and Mason are continuously reminding me to be patient, tolerant, and above all things to just enjoy the many little gifts I receive from God each day. Every morning before school, when I begin freaking out because of my intense issues with being late to events, I just slow down and take a look at one of my brothers and it just calms me down and puts a big smile on my face. Every time a situation such as that arises it always reminds me that I would never, ever, under any circumstances wish for my brothers to be any different from the way they are.

I’ll start off with a quick intro into the life of Josh Krischel. I went to Dwight Grade School for 8 years, and am currently enrolled as a freshman at good old Dwight Township High School(DTHS).  I try to, and am fairly successful at, keeping a 4.0 GPA. I play football and am part of the scholastic bowl and mathletes teams, and I also throw shot and disc for the track team. As well as trying to balance my life between all these activities and school work, just like any other teenager, I also get a bit of chaos thrown into the mix. However a bit hectic at times, I suppose chaos is a bit of a strong word. Considering I don’t know what I would do with my life if it wasn’t how it is today.

Adin and Mason both have very distinct characteristics that make them both a joy to be around. Adin, who is the higher functioning of the two, loves nature, our puppy Keegan, the weather, and always carries around a watch that has little penguins on it that he constantly looks at about every five minutes just to give us the time. Then there’s Mason who is the most joyful person to be around and always seems to have a huge smile on his face.

Now, earlier I threw out a few things I have learned from my brothers and I’d like to talk about those and how they relate to our everyday life, the first of those being patience. I’ve 553615_3801382325047_2054365817_nlearned over these past 14 years that it really isn’t worth it to get mad over all the little aggravating things in life. Just like the old saying, “there’s no use in crying over spilled milk,” which in our house quite honestly happens more than it probably does in the average household. For the simple reason that Mason, who likes to fill his glass of milk to the very brim, doesn’t have the best reflexes, so he spills quite often. So, every time this happens he just goes to the drawer in our kitchen that we keep the rags in, grabs one, and just cleans up his mess without even a single peep. After watching this happen I often sit there and just think, if my autistic brother, who is very easily upset, can be patient like that then why can’t I? The answer to that question is because I can!! Often I mess something up and begin to get frustrated, and then I just think about Mason, and his ability to keep his eyes dry over spilled milk.

Then there is tolerance, which is something I’ve learned from both my brothers. Often when we go out to eat or just have to go to store shopping, my brothers somehow find some way to make me embarrassed or to cause a scene. Well at least that’s how I used to see it. Now, whenever we are out and about and one of the two begins to say some phrase they’ve heard from a movie or something over and over, I just often let them keep on doing it and continue whatever it is I’m doing. However, in the past year or so, I occasionally even find myself chuckling at them, or even joining in quoting Finding Nemo, Cars, or The Wiggles. As far as that topic goes, having the two of them in my life has allowed me to be very tolerant for all sorts of people, whether it is race, religion, or even just personality. I constantly, day after day, am hearing people in the hallways of DTHS, using the “R” word to call someone stupid. I understand when in the moment of using this word these people don’t realize how offensive it is to some people, that or they just don’t care, but regardless, 99% of the time I will stop whatever I’m doing to call the person out on it for the simple reason that it isn’t ok. Just like how it isn’t ok to call someone a “homo” or a “faggot,” it is just as offensive to anyone who cares for someone with special needs to hear the “R” word.

294883_10200707258115803_180476492_nLastly, the most important lesson my brothers have taught me is to enjoy the little things in life. In our dining room we have a big bay window overlooking a section of our backyard, and every morning Adin will just sit there and look out at the trees and the flowers. However, one morning he seemed very spacey looking out the window. At first I thought he might be having a seizure, so I went over and sat down and asked if he was ok. He responded with just a simple yes.  I then asked him what he was looking at and he said, “I’m just looking at that tree that God made.” Then without a single ounce of hesitation I smiled and looked out the window and sat there for a good five minutes just looking at a plain old tree. This, later in the day, made me realize that I take a lot of little things for granted, and that I need to just slow down sometimes and just take a big whiff of some roses.

If I haven’t made it clear enough already, I love both of my wonderful TSC brothers more than words can describe, and I wouldn’t trade them for anything in the whole entire world. However there is one extremely wonderful, amazing, caring, and loving woman I know that has TSC, and that would be my beautiful mother. She has also helped the cause by molding me into the, not to brag, wonderful young man that I am today (never said I was modest). She has taught me how to be a loving and compassionate person. She also easily undergoes more stress than the CEO of a multimillion dollar company, but somehow she manages to keep us boys in line, and babysit her two-year-old nephew. She is probably the strongest woman anyone could ever have the pleasure of meeting and is probably the biggest inspiration in my life.

So, if there is one positive to look for out of all the troubles of TSC, it would be that TSC carriers are by far the best teachers a person could possibly ever have.

See Josh’s mom’s post here.

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Alex’s Journey

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Day 6 of Guest Blogging for TSC Awareness Month

By guest blogger Kelly Oberg  (Merrionette Park, Illinois)

make a wish 2013 kim sd card 092Looking at Alex you would never know there is anything wrong with him. Alex has blonde hair, blue eyes and a smile that will capture your heart from the start. Alex has always been such a happy little boy. No matter what he is going through, he always has a smile on his face. Even though Alex cannot vocalize his wants and needs, we as a family have learned how to communicate with him in different ways. And being strong parents, makes for a strong little boy, who is being given the best care and love that can be given to our special little angel. There are never enough words that I could find to describe the love I have for my son Alex. In the past three years he has taught so many people so many things. He has taught me so much, that in a lifetime with him I would never be able to repay him for all that he’s taught me. Alex was born July 14, 2009,  and the moment Alex was born he made an impact on everyone around him.

We were told when Alex was born that he had two holes in his heart and a heart murmur. The doctors were very hopeful that the holes would close before he reached two years old. The holes closed by the time Alex was a year old on their own. At this time we had thought that our prayers had been answered and Alex would be fine. Little did we know that there was another plan for us. I noticed early on that Alex was not big on sleeping; he would sleep for a hour then wake up screaming. He was also not hitting his developmental milestones like normal children would. After numerous trips to his doctor, we were told Alex was normal and just had colic. We knew it was not colic that we were seeing. It was something else, but as young parents we didn’t really know what it was that Alex was doing, other than not sleeping.  Alex has always been a big child with a big head and big body; he came into our lives at a whopping 9lbs 8 oz. But as he grew his doctor was concerned about his growth being so big, so she sent us in for an ultrasound of his brain. We found out Alex had calcifications on his brain and hydrocephalus. Hydrocephalus is when you have too much fluid on or around your brain, and his doctor told us we just had to monitor Alex; if over time it got worse, we would address it then.

In February 2010, we learned Alex had severe hearing loss in both ears. After a few hearing tests, the doctors told us it was nerve damage, and they didn’t know if he would ever be able to hear. They suggested we try putting tubes in his ears. We did get the tubes in March 2010, as well as his adenoids taken out. Alex started to vocalize then. It was like a whole new world was opened up to him when he could hear.

In June 2010, while taking a bath, Alex was not acting right, so we took him into his room and kept an eye on him. This is when I experienced seeing my first seizure. At the time Imake a wish 2013 kim sd card 050 had no idea what a seizure looked like. Alex was pale and laying so still on the bed just staring at the ceiling. I remember feeling so scared. I have never felt more scared than that moment looking at Alex. Within a minute or two, Alex came out of it and went to play. We watched him closely thinking he just didn’t feel well.  The rest of the month, Alex did this three more times. The third time we decided to go to the emergency room. After describing what we saw, the emergency room doctors told us that Alex had a seizure, and because he had a fever, it was just febrile seizures. Febrile seizures usually go away when you reach age 5, but when you have a fever as a child you have a seizure. The doctor told us he would grow out of it. We were relieved that he would grow out of it and everything would be okay.  In August 2010, on our third trip to the emergency room, the doctors grew concerned because now Alex was having seizures without the fever. The febrile seizures diagnosis was thrown out the window. They admitted Alex and ran a ton of tests from blood to urine to an MRI of Alex’s brain. The very next day, Alex’s pediatrician came into the room to talk to us. She said she had the results from all the tests but wanted to look at Alex for herself with this “wood light”. I agreed, and shortly after starting she stopped and sat down next to me. She started to cry and explain to me that the hospital staff of doctors, as well as her believe Alex had a disease called tuberous sclerosis.  As she cried, she told me that Alex’s life would be very short; he would not talk, would not walk, or do things a normal child would. She told me to have Alex get a blood test to confirm this diagnosis and then make an appointment with the genetic doctor of the hospital. We did that and saw the genetic doctor on October 1, 2010.

It was in that very appointment that I found a side of me I never knew I had. I found a strength I had never seen before, as well as a voice for Alex that I never knew I had before.  After not one, but two doctors told me my son would never walk or talk, let alone do anything a normal child could do, I made a promise to Alex that I would do everything in my being to allow him to have as normal of a life as I could give him, as well as get him the best care I could as far as doctors are concerned. A few days later I found the TS Alliance and found the TS clinic in Chicago, and ever since then I have never looked back. Alex now has a great team of doctors and nurses that know us and love Alex so very much.

Over the past two years, we found out Alex has severely obstructed sleep apnea,  and that is the reason why he has not slept his whole life. Two surgeries later and Alex’s apnea is worse than when we started. Alex’s seizures have become more frequent up to six times a day, even with taking two different medications to help control them. Alex’s neurologist suggested that Alex would be a great candidate for a vagal nerve stimulator.  A VNS is similar to a pacemaker but it is for the brain. It is hooked up to the vagal nerve in the neck and sends a pulse to the brain either at five-minute, three-minute, or one-minute intervals to help control the seizures. Alex was implanted on November 26, 2012, and the VNS was turned on Dec 6, 2012. Since the VNS was turned on we have not seen any seizures at all. We are off one of his seizure medications and almost off the other. This is a long-term help that we were in desperate need of.  After an MRI in August 2012 we learned that Alex’s two SEGAS we were monitoring had grown a lot over the past three months, and Alex was a candidate for a medication called Afinitor. Afinitor is a medication that, to me, is a miracle drug. It helps people with tuberous sclerosis complex, not only with the problem they are taking it for, but in many other aspects too. See, Afinitor has shrunk Alex’s SEGAS by 20 percent in only three months of taking it, as well as helped him be more focused and develop cognitively.

We know that we as a family have a long road ahead of us, but it’s because of Alex that we have the strength to keep going. Alex has been through so many MRIs, blood tests, and hospital stays that he has shown us what a true warrior is by staying so strong during all of it. I feel truly blessed to have Alex as my son; he is one amazing little man.

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Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

The Strength of Family Through Three Diagnoses

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Day 2 of Blogging for TSC Awareness Month

By guest blogger Paula Krischel (Dwight, Illinois)                              

Paula with her husband and three sons, Mason, Joshua and Adin.
Paula with her husband and three sons, Mason, Joshua and Adin.

My story started when I noticed my infant son, who was 11 months old, puking and seizing.  We went to our local hospital, and his pediatrician knew it was more than he could help with, so he sent us to Chicago. That was the first time we met Dr. Huttenlocher and started our long journey with TSC. Never in my wildest dreams could I imagine that I had this disorder for 26 years, and was completely unaware.

My world was falling apart. I became depressed, and my son was having uncontrollable status epileptic seizures. I not only had to learn all I could  about this disease, and the fact we had to live day by day to see how it would affect our boy, I had to learn to accept that I do have this disease and cope with the guilt I felt about giving him this terrible thing! Mason, who is now 17, ended up having global delays; he is severely affected by this disorder, severely autistic, and will never have the ability to live an independent life. We started with therapy at a young age, but did not see much progress for many years.

We were feeling compelled to have another child, feeling Mason needed a sibling to help him learn. We prayed a lot and had Joshua. Joshua is now 14, board scholar, and wants to one day be a geneticist and work in gene therapy. As of now, he shows no signs of having tuberous sclerosis, and he wants to one day find the cure for it.  We have advised him to get genetic testing done when he decides to have a family.

When my Joshua was 10 months old, I found out I was pregnant again. Eight months later I had Adin. I was not as comfortable about this pregnancy because we were planning on stopping at two. We found out through ultrasound, at seven months along in the pregnancy, that he too would have that terrible disease called tuberous sclerosis.  We did a lot of praying, and even though he is autistic and has global delays, he is a ray of sunshine who can brighten anyone’s day.  He is considered mild/moderately affected by this disease.  He is able to communicate with us, but his older brother is very limited in his speech. Even though he started out with infantile spasms at three months, we have been able to keep his seizures under control fairly well for 13 years. He did have a breakthrough grand mal once, when going through a growth spurt. He has been under control again since 2009.

We have spent countless minutes with doctors, tests, speech therapy, occupational therapy, music therapy, physical therapy, behavioral planning, making safety plans for at school and home, and the list goes on.

Now our latest scare is me.  Recently I found out my tuberous sclerosis is wreaking havoc in both of my kidneys. I get to start the new medicine Afinitor to see if we can save my cyst-filled kidneys from getting any worse.  Both of my boys are on it as well for SEGA brain tumors. This is the first time I have been seriously concerned about my own health.  I am the main caregiver of my boys because my husband is a very hard-working plumber, who works diligently so we can pay for all the expenses this disorder accrues. There never seems to be a very long break of good health in our family, but because of this disorder, we are stronger, more loving, and cherish all milestones that we conquer! For that I am thankful to TSC. Even though our  life is crazy, and the stress seems to pile up constantly, I would not change my life for one second…and continue to look forward to the future!!!

Check out her son’s post here.

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