Luke's Tuberous Sclerosis Page
Cristina Lorena's Story |
 On Sept. 24, 1982 at St. Margaret's Hospital in Hammond, Ind., I gave birth to a beautiful 6 pound 9 ounce baby girl, which I named Cristina Lorena. What a joy it was to be able to hold someone so dear and precious to my heart for the very first time. On the first day that Cristina was brought to me, I noticed she was making little faces with her eyes and turning her head slightly to the right side. This lasted a few seconds. I thought it was so cute at the time, that at one day of ages could actually be doing this. Although Cristina was making these faces, doctors and nurses presented my baby as a normal and healthy infant. Cristina and I were sent home for the first time after being in the hospital for four days. Cristina continued to make little faces with her eyes and turning her head slightly to the right side. At one and a half months of age I noticed that during some spasms she started rolling her eyes back with fisting of her hands and turning her head to the right side. These spasms lasted about five seconds and she was having approximately three to five spasms per day. This would occur any time of the day both asleep and awake. At that time I had no idea what was happening to my baby. I had never experienced or seen anything like this before. We went to see Cristina's pediatrician for an exam and she referred me to Loyola University Medical Center in Chicago. On December of 1982, I took Cristina to Loyola University. Cristina was then examined and admitted to the hospital for seven days undergoing tests. During that time doctors were unable to diagnose the symptoms that Cristina was having. Doctors also wanted to perform a spinal tap on her but I refused to have this done. After seven days of testing and not being able to find any medical problems, I was told by a doctor that Cristina was diagnosed as being a genius. That was the reason Cristina was having infantile spasms, according to the Doctor at Loyola University. Cristina was then sent home on Clonopin but the seizures continued. On March 24, 1983, we took Cristina to the emergency room at Children's Memorial Hospital in Chicago. There doctors examined Cristina and I was being asked questions about what exactly she was doing during a spasm. I explained Cristina's spasms and they knew right away what was wrong with her. They told me she was an epileptic and referred us to the neurology clinic for a follow up. Meanwhile, Cristina was still on Clonopin and was put on Phenobarbital. The seizures did not improve on the Phenobarbital.  On March 28, 1983, Cristina was admitted to Children's Memorial Hospital for testing. Cristina's skin was examined and found one and one-half by three centimeter hypopigmented macular (ash leaf) lesion over her right flank. She also had multiple small hypopigmented (ask leaf) lesions over her trunk and extremities. Her lungs were clear. Her heart exam was normal. An EEG was done and it was abnormal, revealing a modified hypsarrhthmia pattern. She also had a CT scan done which showed no lesions at this time. A physical therapy consult consistent with tuberous sclerosis and dermatology saw Cristina and they confirmed that the skin lesions were consistent with tuberous sclerosis. Because of the EEB modified hypsarrhthmia pattern, Cristina was started on ACTH. Once or twice a month, Cristina was beign followed up by the physical therapist at Children's Memorial Hospital. The is was to help Cristina learn to lift her head up by us holding her hands and pulling her up slowly to a almost sitting position. We wanted Cristina to start building up strength on her neck muscles so she could have better control of her head. The therapist also worked on Cristina's balance. She sat Cristina on her laps and her weight was being shifted by the therapist moving her legs from side to side. Also, to help Cristina learn to sit with out support and teach her to use her back muscles. She also worked with Cristina to roll over, pull her feet with her hands, to use her hands to pick up things and to use her fingers to pick up small objects. While watching the therapist work with Cristina, she was also showing us how to work with her at home. This way, the therapy would continue until the next appointment.  On May 6, 1983, Cristina had an appointment with neurology clinic. She was seen and examined by doctors and was started on Tegretol and continued to give ACTH. An EEG was also done. A few months passed and Cristina was doing very well. She was more alert, clapping hands, babbling, standing and doing things I never thought I would see her do. I was so excited and happy about it.   October 5, 1983, Cristina was started on Depakene and continued taking Tegretol. Clonopin was discontinued because it never helped her to control seizures. As Cristina seizured, by this time we had noticed three different types of seizures. 1) Arching forward with arms curved inward and fisting of her hands, also her legs would bend inward and had body jerks as she was released from the seizure, 2) Choking episodes as if she was going to vomit and sometimes she did, 3) Facial spasms or twitching of the mouth, cheek and eyes. At 14 months Cristina started walking and had a few words in her vocabulary. As she continued walking more each day, we noticed that her left leg seemed to curve outward. Besides her leg problem and seizure activity, Cristina was growing up and developing very normal. She was always getting into everything and doing the things she was not supposed to do. Although Cristina was physically developing and growing normally, she was still having a lot of seizures. Through the months when was tried on different medicines to see if the seizures could be controlled, but nothing seemed to work. Cristina was now having about 8 or more seizures per day. She was still taking Tegretol, Depakene and was restarted on ACTH. On December 14, 1983, Cristina took her last dose of ACTH. Doctors decided to stop giving the ACTH since Cristina had been on it for a while and had been restarted on the ACTH, they didn't want to take a chance on Cristina getting an infection that could be caused by it. One of the side effects ACTH caused in Cristina was that she seemed to be gaining weight, but it wasn't that. She was swollen all over, her cheeks were big and round and her skin was shiny. Cristina continued to take Tegretol, Depakene and was started on Diamox and Phenobarbital. January 25, 1984, doctors increase the dose of the medicines. Cristina was still seizuring but the seizures were now a little stronger. As she goes into a seizure, her head drops quickly forward and hits the floor, if standing. Her eyes roll back, her body goes into convulsions, her back arches forward, with arms curved inward and fisting of her hands, also her legs bend inward. She is still having facial twitching and choking spasms as if she is going to vomit. As the months passed by, Cristina was doing well except seizure wise. She was acting just like a normal child. June 20, 1984, we went to neurology clinic for a follow up. Doctors examined Cristina and said she was doing very well. They were excited to hear that Cristina knew all her body parts and how quickly she was learning. She also knew all the animals on her See-N-Say. She would point to everything I would name. Doctors were also happy because she understood thirty to fifty words, although she could only say ten to fifteen words. She was very active and liked to play peek-a-boo and patty cakes. She was walking and running with a little difficulty because of her left leg, but that didn't stop or slowed Cristina down. Between the months of June 1984 and early October of 1984, Cristina was being followed up and tested at the hospital. EEG's ad CT scans were also being done during these months. On October 17, 1984, Cristina had an appointment with neurology clinic for a follow up and to get the results of a previous CT scan that was done on October 10, 1984. The results were that Cristina had a brain tumor on the right temporal lobe and she had to have surgery right away. This could not wait. Apparently the tumor had grown a lot since the last CT scan was done, which was on Jan. 12, 1984. As we were sitting there listening to the doctor talk to us, I felt numbness go through my body and I was very nauseous. I couldn't breath right and I had so much pain and anguish in my heart, as if my heart was being ripped apart, crushed and destroyed, all at the same time. This was my little baby the doctor was talking about. I never knew such pain existed until this moment. I couldn't believe this was actually happening to my little girl. As the doctor was talking and explaining to us what was going on with Cristina's brain and the procedure of the surgery, I could hear the doctor talking but very vague, as if my mind was so far away or like if I was in a dream. I felt so light headed and weak, as if I was walking on a cloud getting ready to fall. I had no strength or energy in my body. All I could do was cry and say no, no Dear God not my baby. I cried the whole night, still in shock and disbelief. Even though everything was happening at once, I knew I had to clear my mind and think straight. I had to make a decision whether or not Cristina should have surgery. Many questions came to my mind and that just made it more difficult and heart breaking to have to think of these questions. 1) What is going to happen to Cristina if she doesn't have surgery? 2) Am I making the right decision if Cristina has surgery? 3) What if Cristina dies? What then? 4) Will this be my fault for making this decision? 5) What if Cristina gets better and stops seizuring? I knew I couldn't think about it too long or prolong the surgery because Cristina needed surgery right away. The tumor in her brain was getting larger. This was the hardest decision in my life I ever had to make but I had to help my daughter somehow. I thank God for my family, for supporting me 100% in my decision. For always being there for me and keeping us in their constant prayers. I thank God for blessing us with Christian grandparents, mom and family. They have always taught me to trust in God and to put my faith in Him. Grandma always told me, as the word of God says: "Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1. "So then faith cometh by hearing, and hearing the word of God." Romans 10:17. "And Jesus said unto them, because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, remove hence to yonder place, and it shall remove, and nothing shall be impossible unto you. Matthew 17:20. On Oct. 22, 1984, Cristina was admitted to Children's Memorial Hospital. There she had tests done on her which were: 1) Blood tests, 2) CT Scan of head, 3) Cerebral angiogram, 4) EEG, 5) Eye exam, 6) Ultrasound of the kidneys, 7) An EKG and everything possible was done. But one thing the doctors did tell us about the results of the tests, that they were unremarkable in their appearance, for being a tuberous sclerosis patient. The tests didn't show tumors anywhere, except in her brain. October 25, 1984, the day of the surgery. Doctors were preparing me for the worst. Three things they told me could happen during and out of surgery. 1) Cristina could die on the operating table, 2) Cristina could be in a coma for the rest of her life and eventually die, or 3) Cristina could pull through and not remember anything or anyone such as mommy, daddy or any of the words she knew. In other words be like a vegetable. After hearing this, I started getting sick to my stomach again and all the feelings I felt when doctors first told me that Cristina had a brain tumor, came back. Doctors never gave me hope or a positive reassurance of anything. That broke my heart so much because I didn't know if I would ever see my precious angel again. As Cristina was being rolled in a crib headed to the operating room, I walked beside her holding her hand and I never left her sight. All I did was tell her how much I loved her with all of my heart. What hurt me the most, as I saw Cristina playing in the crib with her rabbit, was that she didn't know or understand what was happening or what was waiting for her on the other side of those doors. As I saw the doors open, I said to her once more how much I loved her and I would always be with her no matter what happened and that God was with her and He was always watching over her too. She turned her face to look at me and said mama. I stood there watching as Cristina was being taken further into the operating room, the doors then closed behind her. I fell to the floor crying in agony. My ex-husband helped me up and I asked him to take me to the chapel. I prayed with all my heart and soul that Cristina would come back to me no matter what happened. I knew then that I had to put Cristina in God's hands and trust him. That whatever was to happen, for it to be His will and not mine. I remembered Grandma telling me that whenever I felt scared and worried about anything, to read Psalm 23 and to repeat it as much as I could. As I left the Chapel, I went back to the waiting area to see if there was any news on Cristina. The surgery seemed to be taking so long. I felt the clock was moving very ,very slow, but the surgery only took approximately 5 1/2 hours. The surgeon finally came to talk to us in the waiting area. He said the surgery had gone well, just as he expected and that Cristina was awake and alert and doing well. She was also calling for me. I asked the surgeon if we could see here and he said yes, because Cristina was crying for her mama. That brought joy, peace and relief to my heart, just to know that Cristina made it through surgery. I didn't know what to expect to see in Cristina as we entered the recovery room. She was just lying there with IV's in her and a head band wrapped around her head. Her face was somewhat deformed, her eye was red and very puffy because of the swelling. As I called her name softly, she turned her head to look at me and Cristina had the biggest smile on her face ever and her eyes just lit up with joy as she saw me and said mama, mama. I started crying and I felt relieved to know that Cristina still remembered me and knew that I was her mama. I bent over to kiss her and to say I love you so much Cristina. I thanked my Lord Jesus Christ with all my heart and soul for being with Cristina and me when things seemed impossible. All I know is that if you reach out to God with all your heart and sincerity, He will hear your prayer. As God's word says: "And all things, whatsoever ye shall ask in prayer, believing, ye shall receive." Matthew 21:22.   Later on that day, Cristina was taken to ICU for monitoring and observation. Doctors told me that these first 72 hours were very critical because if Cristina would sleep a lot during these hours, that meant the brain was swelling up and she could go into a coma. Well, thank God Cristina did very well because she slept only for two hours off and on, out of the 72 hours. I stayed with Cristina in ICU just holding her, rocking her, singing to her and talking to her. Cristina didn't forget any of the words she knew. She remembered everything she had learned and repeated after me. The doctors and nurses at Children's Memorial Hospital were amazed at how well and quickly Cristina was recovering. It was as if nothing had ever happened. We kept an eye on Cristina hoping that the surgery would help stop the seizures, but it didn't. She continued to have them. On November 1, 1984, Cristina was discharged from the hospital and was sent home on Tegretol, Diamox and Phenobarbital. Since surgery she has been doing very well and has been improving. Cristina was socializing more, was more active and sometimes hyperactive. Her weakness had improved, her coordination was better. Her left leg had been somewhat bowlegged but after surgery her leg started straightening up. She was also using both hands and fingers to pick up things even the smallest things. As months went by, Cristina had improved a lot and was stronger. She was now running well, climbing things, jumping off of things, kicking the ball and she could even stand on one foot for a few seconds. after doing so well, Cristina started having behavior problems. She was stubborn, would throw things, hit and then kiss people, kick things and sometimes people too, bite herself, she would hit her head with her hands, she would bang her head on the wall, she would also throw herself on the floor. Although she never physically hurt herself, she was still abusing herself. Cristina didn't always act like this, she was also very loving, affectionate and very caring. Cristina was three years old when I started her in a special school. At the school, teachers worked with her behavior and was also getting speech therapy. Cristina was on Tegretol, Diamox, Phenobarbital and was started on Depakote (Valproic Acid) during this time. A year and nine months went by and Cristina was still on the same medicines. During that time, doctors were increasing and decreasing her medicines to see if it would help her seizures, but it didn't. On Sept. of 1986, Cristina and I left Ind. in search of more answers. We went to California with the hope of finally finding answers to my questions about tuberous sclerosis. In Orange County, Ca. for the first time, we met with a professor of tuberous sclerosis. Before we left Indiana I had already made an appointment to see this doctor. He was very nice and was happy to see us. He examined Cristina and asked me questions about her history. The first thing he did do was take Cristina off the Phenobarbital because it was not an anticonvulsant drug, it was more of a sedative and it would cause mental delay if taken for a long period of time, which she had. He explained to me what tuberous sclerosis was. Tuberous Sclerosis was a genetic disorder that caused benign tumors to grow in major organs of the body and white hypopigmented lesions to appear anywhere on the surface of the body. A CT scan was done and the results seemed to be the same as it was back in Chicago. The doctor did tell me one thing, that kid's with epilepsy and are diagnosed having tuberous sclerosis, are harder to be controlled seizure wise. After being seen by the doctor for a year, Cristina and I left California and we moved to Texas. I was still searching and hoping to find more answers and information on tuberous sclerosis. June of 1989, Cristina and I moved to Galveston, Texas. We were referred by Cristina's pediatrician in Brownsville, TX to bring her to UTMB, so she could be seen by a neurologist. In Cristina's case, she had to be followed up by a neurologist because of the seizures she was having and the anticonvulsant drugs she was taking. Current photo of Cristina:  If you would like to correspond with Minerva Rico, Cristina's mother, you can e-mail her at MRico@aol.com This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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