Tag Archives: status epileptic seizures

It Was More Than Just “Side Effects”

Day 3 of Blogging for TSC Awareness Month

By guest blogger Laurie Mersberg (Round Rock, Texas)

When I was asked to share my story, I was first honored, then scared. Where to start? I guess the beginning…

Laurie and her husband Kenneth.
Laurie and her husband Kenneth.

I was born with the angiofibromas on my face in 1971. They had no idea; they just told my mom it was a heat rash. No big deal. Nothing to worry about. I was also born with a club finger and a double cleft palate, but no one connected the dots. I mention this because my club finger is my left middle finger and it matches my personality, strange and unique. It would come in handy growing up as I was picked on. I didn’t talk much due to my cleft palate. When I was 12, I had surgery and was on a liquid diet for a year. My jaw was wired shut for complete healing. When healing was done, I had plenty to say. I found my voice, not just physically, but metaphorically, too. Who knew I had such a sarcastic quick wit. I learned my voice and word was my weapon and club finger was like my sword, but not in any physical way. I found it usually stopped people in their tracks.

Jump ahead a few years to when I was 16. My mom came to me and said I had an appointment with a dermatologist. I was so happy these bumps were going be gone. I had such hope I was going be rid of this nightmare and be like all the other girls. This was not ever going to happen. They took a biopsy of the bumps on my face, then called us back a week later. I was ready for whatever they wanted to do. The doctor came in with a book sat down and said those words I will never forget. “You have tuberous sclerosis, but not to worry, you just have the side effects.” This doctor had no idea how wrong he was going to be. He showed me a book and said, “See, it could be worse.” It was pictures of children with Down syndrome, rashes all over, clubbed feet and cleft lips. He said, “You’re lucky, but I don’t recommend you have children because they can have a worse case.”  I looked over to my mom. She had some tears. I thought it was because of the no babies most likely coming from me. She said, “I need air.” She called my dad while I waited in the car. When she got in, she said, “Well, at  least you got your personality.  You’re  just never going be a pretty girl and you’re smart.”

I was shocked. She’d been vain, but I didn’t know it went that far. When I was little I used to ask, “Mama, am I pretty like Dee?” (my older sister).  She would say, “Yes honey, you’re pretty…pretty ugly.” I didn’t know what she meant until I got older, but I did have my wit and sharp mind. I didn’t live at home. I was on my own shortly after I graduated. I had my apartment. What to do? I was tired of being an adult so I joined the United States Army. I thought, “Let them take care of me.” Remember, I was told I had only side effects, so that was good enough to get in.

I’ll skip over my military career and go to my next big hardship. I got married…well, got knocked up by my son’s dad-then we married. The army wasn’t happy. They get mad when their personnel gets a girl preggers. I was scared when I found out I was pregnant. I told my son’s dad about what the doctor said and the pictures he showed me. My son’s father was very Catholic. He believed the baby would be okay since I had just the side effect sand medicine had come so far since 1971. So I jumped in with both feet: wife and soon-to-be mother. A few days later we got a letter to go to Hawaii. We were not happy since we heard it was hard to live there on Army pay. The rumors were right. When I gave birth to my son, I had preeclampsia  and toxemia. He was born one month early, but because of his size, they put full term. He was so beautiful and no sign of TSC. I was so relieved, and so was his dad. We spent three days at the hospital and then they sent us home. I had no idea everything would change in five days. My world would turn into a nightmare…

A week after I gave birth to my son, I got up to go to the restroom. I remember walking in and my left side went numb. Next thing I woke on the floor cover in urine. I cleaned myself up, woke up my son’s father, and told him what happened. He said, ”You’re over tired. Just get some rest.” Now here’s the part I totally don’t remember. My son’s father came home  and he said he was banging on the door for 30 minutes. In Hawaii, there’s no A/C, so everyone keeps their windows open. All the windows were closed and locked. He could see in them and I was looking off, walking around in a circle  holding my baby, but looking confused. He finally broke in. I had no idea who he was, or why I had a baby. He grabbed our son and me and we left for the hospital on post.  He walked us in and told the doctor on duty, “Something is wrong with my wife. She doesn’t remember anything.” The doctor told him to take a seat. He said that I looked like I was on drugs. He told the doctor I wasn’t on drugs. The doctor told him to sit down, shut up, and he’d get to us when he could. Four hours later, a paramedic, an older man with white hair and a beard, walked by and asked my ex, “How long has she been like this?” My ex said, “Well, when I got home she was like this.” The old man asked, “How long was this?” My ex answered, “Four hours ago.” The old man got the doctor and asked if I been seen. He said, “No, she’s just another junkie army wife.” The old man said,  “No, she is seizing and you’re helping to kill her! She’s in a static-epileptic state.” The doctor said, “She is not having seizures.” The paramedic told the doctor, “Since she is a civilian, I’m taking her to N.A.M.C.”  It’s the big pink hospital on Oahu.

When I got there I had fever of 105, so of course they admitted me. They told my ex to go home. When he got home the phone rang and they told him to come back. When he got there they told him I was in a coma, medically induced, and to call family in case thing got worse. He was scared, confused, and not being told anything. So he made those calls not knowing what to say. I woke up four days later tied down to a bed. I was confused. The last thing I remember was peeing on myself. Why was I tied down? My ex walked in the room, looked at me, and ran out to get the nurse. A nurse and doctor came in to ask if I knew who I was and where I was. The regular neuro questions. They asked and I answered the best I could.  I realized my speech was slurred. Finally I asked, “Why am I tied down?” The doctor said, “Well, when we took you out of the coma, you got combative and started swinging.” I said, “Woke from where?” They said it happened after a seizure. I said, “ I don’t have seizures.” He told me, “You do now.” Then I was off  to the neurologist where he said, “You know you have tuberous sclerosis?” I said, “No, I have side effects not the actual disease.” He said, “No, there no such thing as  just the side effects. You have it, and how dare you lie to the Army about your medical.” I was stunned, and he said, “Congrats, now you’re epileptic.” I said, “No I’m not.” We went back and forth, and he said, “I find it hard to believe you have never had a seizure before now.” I said, “I never have.” He called me a liar and walked out. They untied me, and I asked if I hurt anyone. Then a nurse came in with a black eye. I didn’t have to ask. I knew I did that. They explained I had a fever but they didn’t know why. After a month and a half they were still trying to find why my brain was being baked, when they realized I was having some brain damage. They were working hard to find what was going on and what woke my tuberous sclerosis. I wanted to know, too.  All I could think of was that book from years ago.

One day while taking a shower, I noticed this bump in my stomach. I asked my ex to feel it. He was puzzled so he called in a nurse. She felt it and said that after giving birth, some women will have swollen lymph nodes. But she let the doctor know. Doctor after doctor all said the same thing. Finally one of the doctors I saw when I was pregnant came in to say hi. She felt bad because she felt her team missed something. We showed her the bump and her eyes grew big. She got on the phone and ordered all these tests. We asked what was going on and she said, ”I think you have an enlarged liver. If I’m wrong, we’re in trouble.” The next thing I knew, doctors and nurses were everywhere, sending me there, then saying to go here. I saw every part of N.A.M.C,  more than any other patient they ever had. After all, it was a research and teaching hospital.  After four days of being poked and prodded, they came in and told me what we all had been waiting for. Being there due to the seizures and high fever saved my life.  They found a mass on my right kidney as big as a grape fruit. It had to come out it because it was being fed by blood vessels. They didn’t know if it was cancer. We were in shock and then they said, “There’s more. Both kidneys are full of tumors, and in five years you’ll  die or be on dialysis.”

 A week later I was in surgery getting this mammoth of a tumor out. They kept me in the hospital for six more weeks and used my body as a teaching tool until I had enough. They asked if I would go to the morning report. I thought there would be like five interns, but this was the last time my body was going to be used as a medical teaching tool. I walking in to this lecture hall full of interns. There were over 100 young, eager doctors, and they had my son in a bassinette. They talked about TSC (then it was just TS). They started disrobing me as each came up and gawked at the medical freak. I started crying, but as soon as I saw them by my son, that was enough. I screamed “I’m Laurie, not tuberous sclerosis!” as I put my robe on. I ran to my baby and ran down the hall. I was sent home. I guess the medical test dummy was no longer needed. As for the surgery, it was the most painful horrid thing I ever went through, worse than child birth, but I’ve always been a fast healer. Shortly after getting out of the hospital, my marriage broke apart. Whoever my ex married was no longer there. I was so different, I didn’t know myself. The army sent me and my son home, and they kicked my ex out honorably. He, of course, went back to his home in Louisiana. I came home to Texas.

I won’t tell you the long story of single momhood. The next few years I wish I could say were all roses, but they were not.  Y’all might relate. I tried to be the best mom ever, and I loved being mom more than anything, but inside I felt numb and empty. There were days when I didn’t sleep and Tylenol PM was my buddy. I thought I was broken. I thought when I moved back my friends and family would be happy, and they were at first, but soon they saw seizures.  Funny how out of the blue, plans to meet up changed, and they got really busy and family avoided me. I had what the doctors called uncontrollable seizures, and I was prescribed so many meds. One day my sister said, “If I was you, I would just kill myself. Really, like what kind of life are you ever going to have or your son?” It echoed so many times, so I did it. I took all my seizure meds and a bottle of wine, went to my room, and locked the door. Apparently, while taking pills with wine, I get chatty and like to call people. Next thing I knew  police were in my room with EMT and all I said to them was, “I don’t remember it being share day.” I was sent to the ER and my stomach was pumped. Then I was sent to a psych ward. My stay there is a book in itself. I’m not proud of what I did; it photo-11was selfish. Then people asked, “What about your son?” I really thought he would be better off. The doctor filled me with so many meds, mostly lithium, not taking my TSC into consideration. I did three years of therapy. All of a sudden, I was always tired. If I did the dishes, I had to take a nap. It was like someone flipped a switch and all I could do was sleep.  I saw my neuro and told him I was always sleepy. He ordered a test, and next thing, I was at an oncologist. I saw him a few weeks, then I was off to the nephrologist where I  was told I needed dialysis. Do nothing and I’d be dead in a year, or do dialysis and get on a list.  It wasn’t five years like the doctors in Hawaii said. It was six.

So now it’s been 12 years, and my TSC has taken every part of my body. Of my kidneys, half my right and all my left are removed completely. My liver is covered, my lungs (in women they call it LAM), my brain, and they’re in my bones. I have had over a hundred surgeries since 1995. My story sounds bad, but in 2005 I had a VNS  and no more uncontrollable seizures. They also use the VNS with people with bipolar and severe depression. It works. I still have seizures, but not as hard. I have about 20 petite absences  a day, and about six grand mals a month. As for the empty feeling, staying up days on end, and feeling like I was alone, well, there was a good therapist and friends who were always there. I had blinders on and I didn’t see them. I focused on the bad and was blinded to the good. It was about 2001 when I turned a big corner. I was Laurie and I wasn’t tuberous sclerosis. I was Laurie:  the mom, friend, and daughter. I stopped feeling bad for being sick and decided I was no longer going to be a victim to this disease, but a survivor. I was coming back. Funny, sarcastic, quick wit, ME!  With what VNS brought, and with the love of my son, people saw me, not the tubers or the deformed figure, just me. My son is now 18 and has seizures. Some doctors say he has TSC. Some say no. I tell him, “You’re not seizures. You’re  Sean, who has seizures.” For years we have said, “I have an illness. It doesn’t have me.”   Love and hugs to you all and many prayers…..

The Strength of Family Through Three Diagnoses

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.