Stability Brings a Monster Out of Hiding

1994 was a continuation of what had been set into place. Occupational Therapy, Speech Therapy, Physical therapy for B. S was 4 and we placed him into a Pre School program. Having S in school from 9 to 2 gave me the time I needed to focus on B’s therapy without feeling like I was taking something important from S.

In February of 1994 my neurologist decided that maybe prednisone wasn’t as good of a treatment as he’d hoped it bed. It had caused severe acne, significant weight gain and moodiness. So, he started to taper my 100 mgs a day down. We tried going down 5 mgs every 4 days, but I wound up with disabling headaches. While most people get headaches going ON prednisone, a small portion of the population, usually those with existing migraine disease, will respond with the headache on the decline. So, the only option was to slowly taper. Instead of going down several mgs then waiting a few days going down several more, he had me go down 1 MG per day. If a headache happened, I was to go back to the previous days dose and wait 3 days and start my 1 MG a day taper. It sounds easy. It wasn’t, it meant constant attention to the day of the week, the amount I’d taken the day before and the amount that I’d be on the next day. It also meant 80 days, at bare minimum before I’d be off the prednisone. A full 20 days longer than if I’d have been able to go down 1 mg at a time. With headaches complicating, it actually took me 3 months to fully withdraw from Prednisone.

In April, I started my spring routine of walking. Also noting that the prednisone lower dose did not quite cause the hunger that the higher dose did and I started to remove foods from my diet. First to go, was always ice cream. Then I’d remove any dessert or sweet food. By the end of April, I was walking a mile a day (twice as far as my neurologist had ok’d) and my diet was becoming more and more restrictive.

By Mother’s Day, I only had 3 doses left to go. My husband BBQ’d chicken and made broccoli and baked potatoes. I can remember staring at the baked potato as if it would poison me. The butter and sour cream seemed to be taunting me. I ate the dinner because I had no way of getting out of it. D took the boys for a walk to give me a few minutes to lay down. My ‘laying down’ was a ruse to get into the bathroom without being caught. I went into the bathroom and purged the dinner my husband had taken so much care to make for me.

When I came out of the bathroom, our car was gone. D had evidently taken he boys somewhere. A little while later, they came in with balloons, a card, some candy and a cake. While it should have been a moment than any mother would love, and I was able to hide my panic and, in truth, disgust, and hug the boys and smile and say thank you. The balloons and card made it easier to cover the fear that was rising up in me. My husband opened the candy box and I quickly passed it around. The boys and he each took on and I put the lid on. S noted I’d not taken one. I sat down and stared at the candy. Claiming I was trying to figure out which had no nuts.

Finally when the boys could not take the suspense any more, I picked a candy and then let them have another. This distracted them enough for me to put my piece back in the box. D brought in cake for each of us and once again I had no way of getting out of it. I ate the cake then immediately said I needed to take a bath to relax. I went into the back bathroom and ran the water for a bath, and while it was running (and the door locked) I purged the cake as well.

I climbed into the tub … numb from the stress of realizing that food was once again something that I not only tried to control and avoid, but that it had become terrifying to me. Something to fear. I knew that each morsel that I put into my mouth might provide bits of protein, vitamins, minerals that my body needed, but it provided fat, sugar and all the things that had aided prednisone in putting such massive amounts of weight onto me.

The Friday after Mother’s Day, I went to the grocery store and to pick up some meds. As I was standing in line I saw Dexatrim. I’d not used them in years, but I remember they worked well. I picked up a box, and then saw the pink pills that had caused so much misery but made me feel so good when the misery was over … Correctol. I went home with groceries, my sons inhaler, my other sons allergy medicine and my laxatives and diet pills.

I was going to take them as directed. I did, for the first day. The next day, I took 2 instead of 1. The following day, 3 instead of 1.

The end of May I went into the neuro to follow up on the going off prednisone. He noted two things. I’d lost 20 pounds in just the few weeks since I’d gone off prednisone (he thought that was good) and that I had developed a slight tremor. It wasn’t a true tremor, but shaking as a result of the diet pills. I let him believe that it was a tremor, of coarse. I have often wondered if the tremor that I deal with now is purely genetic or cause of disease process, or did the diet pills start it and my body was never able to stop. The neurologist, years later after learning my full history, says that since the blood pressure meds help, it’s likely purely genetic. But just like I wonder if my sons issues are a result of a mother who damaged her body , the thought of the tremors being self induced will always be there.

As June arrived, the pool opened. Since the MG felt normal in the pool, we went daily. I would take the boys for 3 to 4 hours a day, while I swam until the boys needed a nap. Swimming lap after lap and not playing with the boys as I’d done in previous years. I usually had my teenaged niece with me, so she kept an eye on them. They’d manage to distract me for short time periods, but most of those hours were spent swimming laps.

I’d go home and crash. The MG reacting to the punishment I’d dealt out. I’d fix dinner for the family, then claim fatigue (well, it WAS fatigue, but not my true motive) and lay down until 10 pm or so. At this point, I’d go out and walk a mile. (again, 2 times as far as neuro had approved, and he did not know about the swimming).

Mid July, I went back into see the neurologist. I was darkly tanned (was supposed to avoid the sun with the Imuran I was on) and almost 30 pounds down. He told me that he’d never seen anyone take prednisone weight off as fast as it came on. Gave me some hints to protect myself … potassium, protein, all the things I’d already known, but couldn’t have cared less about.

My days were spent with exercising when I could, taking diet pills, avoiding food if I could possibly, and purging if I could not. I’d promised my neurologist that I’d come up with a method of keeping track of what I was eating. He meant it for health reasons. I took it to the extreme.

I made a chart … and then made copies and daily I recorded every single calorie that went into my mouth. Every fat gram. Every morsel was recorded for me to see (and punish myself with if I went over my ‘goal’). My weight was recorded on the chart 3 times a day, when I got up, at lunch and at bedtime. What it said, was a clear indicator on how good of a person I was or was not.

The chart looked roughly like this

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Time    Food           Amount         Calorie      Fat grams      Cholesterol      Weight Success      (1-10)
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___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Total Calorie intake:                 Total Fat Intake :                    Weight: Daily Success (1-10)
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It took a whole page, and if my weight went up, the success rate went down. If the food intake was less than I’d planned the success went up. If I managed to go on zero calories, I gave myself a 10, but if I’d gained weight then that was decreased to a 5.



This whole process of recording calories and food intake and how much I weighed and how it made me feel filled my days. If I was not taking B to therapies or working with him. If I was not taking Samuel to the doctor (because they both continued to get ill during this time) then I was focused on how I was going to avoid eating the next meal or eat as little as I could get away with it.

By November, I was allowing myself to eat chicken, bread, tomato (in all it’s forms), lean beef, vegetables of all types, limited fruit, dairy products and eggs. I was purging on almost a daily basis, at least 5 times a week, but usually every day. I had foods I would NOT eat ,and foods that I'd only eat if I could find a way to purge. Food and weight had become my focus. I was determined to get off ALL the weight the prednisone had put on, regardless of the price I had to pay.






In December, I woke up, and went to get out of bed with the intent of going to weigh myself. My legs gave out from under me. D jumped up, called the neurologist and my sister in law, niece and husband got me dressed and taken into his office. I was severely weakened and having trouble breathing. He admitted me to the hospital to start prednisone again. He said it’d just be a couple of days to stabilize me. When they checked me in and weighed me, I was 85 pounds less than I’d been in May when the Prednisone was ended. I was angry. 85 pounds in 6 months … and I still had more to go and they were giving me this drug again that would undo all I’d managed to accomplish.

January 1995 I went into the doctor for a follow up and was 20 pounds heavier than I’d been. All the weight I’d taken off would be put back on before they finally let me off it (and the cycle begin again) in July.

Thanksgiving 1993

The day before Thanksgiving we had a follow up for S with his ENT and one for B at the neurologist. I took B first and the neuro measured his head. He did not like what he’d found. He sent us immediately over for the CT scan and MRI to check on the craniosynostosis. This time, he was so convinced that something would need to be done that he went over the surgery with me.

The removal of his skull, and the bones re shapen. The risks are what normally come with surgery. I also remember something about blindness and mental retardation, but can’t honestly say what they were. I was numb with fear at that point.

We rushed to the hospital to get the films done before I had to take S to the ENT. We got them done and B was allowed to climb up into the helicopter when we were coming out. He was on top of the world. I was sinking in fear. By this time, I’d known that this was a possibility, but so much time had gone on, I’d come to believe this moment would never come.

I dropped B off with his dad and I took S to the ENT. It was a routine follow up and I expected to have the hearing test and be in and out in an hour. After the morning I’d had, I was more than ready to get on with the holiday.

We went in for the hearing test and it was taking longer than normal. The lady performing the test was familiar with me, we tested his hearing every 3 months, but a year after his last set of tubes, they said we could go to every 6 months. This was his first hearing test since that extension. The audiologist called me over and repeated a few of the sounds. S was not hearing a certain level.

Devastated, I wasn’t sure how much more I could take. I knew that of all the things that parents could face, *my* child having a hearing loss was probably low on the severity. I knew sign, I was fluent in it. I could help him and anyone in his life. But nothing logical could get through. My child would suffer … and have more difficulties than what others have. I didn’t know how to fix this.

The doctor came in to discuss the testing. He was sorry but assured us that he could still hear and a 30% loss was not insurmountable. This, I knew, but it all seemed like too much at the time. He looked in S’s ears and I saw him change colors in front of me. He went white. He looked up at me and asked me to wait a minute. He left the room and came back with his partner and a special light. They both looked in his ear.

When they were done, they had an assistant come get S to go play. As they talked to me, I felt like the world had opened up and was going to swallow me. Part of me wished it would.

They were seeing what looked like a cholesteotoma. An insidious brain tumor that spiders its way into the brain. It causes brain damage if not caught in time and sometimes the surgery to get it out causes brain damage. They described to me the process of removing the tumor. It would require going through the skull behind the ear … that was all I heard … that and they were pretty sure that this was what they were seeing. So they wanted to cover the procedure with me. If he did in fact have a cholesteotoma they would do the surgery the next week.

They sent us to the hospital for an MRI and then home to wait the holiday weekend for the results.



I came home from the doctor’s office and was just numb. I called my mom and asked her to babysit and D and I went out for dinner. I explained to him the events of the day. He was as heart broken as I was, and was unable to be any kind of support for me. We were both broken and bruised and feeling helpless.

After dinner we went to the coffee shop that we frequented. A friend, T, was there. I told her what was going on. She reached across the table and held my hand and said “we’ll get through this weekend”

That weekend she called me every day and I met her up at the coffee shop …sometimes by myself, sometimes with the boys, while we waited, together for the results. We talked about the what ifs and we talked about politics. We talked about whatever came up …

Thanksgiving, as usual ended up with S having strep throat and B getting bronchitis. Our T day was spent in the ER with 2 sick boys. I only have a slight memory of that day. I know that strep and bronchitis suddenly seemed mild comparatively. Everything we’d dealt with, to date, seemed mild in comparison.

After the weekend of sitting in the coffee shop with T and just trying to function enough to keep the boys clothed and fed, Monday finally came.

We took S first to see the ENT and the results were in. It wasn’t a cholesteotoma, it was severe scar tissue. This meant that his hearing was permanently effected, but there was no reason to believe that he would experience any more loss. The level that he had would probably not have any real effect on his life. With the scar tissue, if it is on a nerve, he could be sensitive to loud sounds. (he was and is)

Greatly relieved but not feeling like we were out of the water yet, I took him out to McDonalds for lunch and then took him home. Then went to pick up B. When I got B, I took HIM to lunch at McDonalds before going to the doctor. Both boys had been completely oblivious to the world crashing down around them. I watched him play and had to fight the tears as I wondered if he’d get off as easily as S.

I got to the neurologists office and waiting for us was a neuro surgeon the neurologist had asked to come and consult. The neuro felt the surgery was warranted. The neurosurgeon felt that given his age of almost 2, it was not. If he was even 3 months younger, he’d be as insistent as the neuro. The lack of pressure on the brain made the neurosurgeon inclined to wait 3 more months. The neurologist acquiesced to the neurosurgeon.

I walked out of there with the weight of the world off my shoulders. Feeling like we dodged a bullet once again, I hugged my son even though he couldn’t stand to be hugged. He tolerated it that time. Maybe he was able to sense that this time, it was for mom and therefore it was tolerable.

1993 a bit of this and a bit of that

1993



In Mid January I woke up to get ready for church and was too tired. Don got the boys ready and mom came by to get them. I’d gone back to bed. Later that morning, I was back up and around. The someone knocked on the door and I answered it. It was my sister. She asked to speak with me. She kept looking at me funny. Almost a “what are you doing in my sister’s house” look. I laughed at her and said she was too funny. This is only the second time in my sister’s life that I can remember seeing tears in her eyes. She took me into the bathroom and said “Look at your face!” My face was covered with acne (it hadn’t been the night before) and was this big round ball. My pajama’s felt odd, so, just looking at my face decided to step on the scale. I’d gained 15 pounds over night.



Later that week I took Samuel to the doctor. I stepped on the scale while there, having gained another 8 pounds since Sunday. The doctor stopped by while I was weighing, and actually did the manipulating of the scale. Samuel had strep throat and we were sent home with antibiotics and an appointment for me to come back the next day. He wanted to talk to me about m y sudden and rather severe reaction to the prednisone.

I went back in the next day and had gained an additional 10 pounds. This was 33 pounds in 5 days. My skin was not stretching well, and I was getting stretch marks everywhere, including my arm pits! The back of my knees. The arch of my foot …

He called my neurologist who said this isn’t a normal reaction, at least not to this degree, but that it wasn’t unheard of and that I needed to continue on the prednisone.

I found myself eating in ways I’d never done before. While I’d been purging since I was a teenager, I’d never binged before. On prednisone, hunger was unchecked and insatiable and binges started. Followed by purging and laxatives. The inability to exercise would often be on my mind as I fell asleep.

My husband noticed I was eating more than he’d ever seen me eat, he noticed the weight gain, but after a few years of watching me find excuse after excuse to not eat, he didn’t care. He was just glad to see me eating.

Benjamin was walking, but still not talking. We continued in physical therapy and occupational therapy. Speech therapy increased to 3 times a week. OT was 2 times a week and PT was once a week.

Frequent infections where a constant reminder that nothing was normal for us. During this time period I was babysitting my niece and off and on my nephew. M was 10 when B was born, and I am not sure how’d I’d have done it without her extra set of hands and her delightful sense of humor. She came over every day after school, on weekends and all day during the summer.

As spring approached I decided to try to start walking again. It wasn’t weight lifting, or running or aerobics classes, but it was something. It took me about 35 minutes to walk a half mile, but I did it. Every evening, without fail. In early April I was finally able to start to wean off the prednisone. I’d gained 105 pounds from Halloween to mid March. It took me about 6 weeks to wean off the prednisone. The lower I got, the less I ate. By the time I was off it, I’d reverted back to my restricting intake. This time, it was taken up with detailed records of every single gram of sugar, protein fat and cholesterol that I consumed. Even a mint went onto my chart. I weighed myself up to 8 times a day and each time recorded it. If my weight was up from previous weight, I’d punish myself. If it was down, the only reward allowed was to write it down.

It was during this period that I started to not let myself read before bed time if I had gone over my goal calories. Reading was always my sanctuary. It was what I did when I was overwhelmed as a child (or being punished in my room …or sent to my room to clean). If I went over too many calories (which was as few as 50 or as many as 250, if we had something ‘special’ going on, I’d ‘allow’ myself to go to 400. Not reading prevented me from relaxing. I’d not been able to fall asleep without reading since I was a young child. It never occurred to me that I not only was punishing myself with the loss of a pleasurable, stress relieving activity, but one that enabled me to sleep well, and thus, was somewhat self destructive.

In early May, I was called and told that my grandfather was extremely ill in Washington. He had a lung infection. He’d checked into the hospital for some cardiac testing. My dad chose to not go see him because Grandpa was “always sick and he can’t go running every time.” On May 8,1993, he passed away from the lung infection.

In early June, my mother was called by her mother’s husband. Grandma had checked into the hospital to rehydrate after a particularly severe episode of celiac episode and while she was there, she contracted a lung infection. My mother took off for Seattle, to be with her. My Aunt beat her there by 24 hours. She greeted mom in the hallway to say that it wasn’t likely that Grandma would make it. Mom walked into Grandma’s room, took Grandma’s hand and said “Mom, I’m here” and with that, Grandma took her last breath. She died from the SAME lung infection … in the SAME hospital as my grandfather had ..and it was June 8,1993.

I went to pick up my mom from the airport and had the wind knocked out of me. Mom had left town perfectly healthy. She came back frail, fragile and sick. They rolled her off the airplane in a wheelchair. I was quite alarmed. She had been as strong as I was before I got sick. This all made no sense!!

Later that month (June) B’s speech therapist told me that she would not be coming back. It was her last time to see us. The following week we met the new therapist. The previous one, upon learning that I knew sign, told me that she did not want me using it with B. That kids who have no hearing loss that learn sign become dependent on it. I called my dad (who used to teach the deaf) and talked to him. He said that it certainly is a school of thought, and there were not, to his knowledge, any definitive studies to show. In his opinion, since we were entrusting the care of our son to her, we needed to follow her recommendations.

By June of 1993, B was not even attempting to say “mamma” or “milk” or any other first word that babies often have. He could not point to what he wanted. He had no communicative skills. Many people don’t find that alarming, but … it is remarkable how early in life babies start to communicate. When an 18 month old isn’t communicating … there is a problem.

He had no way of showing likes or dislikes other than laughter and crying, which seemed more reflexive than communicative. He couldn’t point, he didn’t know how to respond to speech. His delay was quite significant.

His new therapist evaluating him was alarmed at the absolute lack of ability to communicate. She immediately taught him the sign for “more”. She then talked to me about his need to communicate. She told me we’d work on teaching him signs. I told her what the previous therapist thought and she said that while she agrees that it *is* a school of thought, it doesn’t hold water. What child who can say “drink” is going to put down a toy to SIGN drink?

It made sense to me. So, that night I worked with him on “more” “Milk” “mama” and “boy” (for brother)

The next day I added “Daddy” “Grandma” “eat’

The next day I added “cat” “toy” “car”

He picked up on sign like a duck to water. By the time we returned at the end of the week he had 20 signs he could use IN CONTEXT! I felt like we’d crossed a major hurdle… which was accompanying the feeling of absolute failure as a mom. In going against my gut instinct and listening to the professional, I’d not given my child an appropriate mode of communication. I felt like I’d not only failed my child, but I’d robbed him of a few months of development.

We spent several days a week at the pool. S and M (niece) learned very quickly to keep me in the pool by playing with me. It was a very odd phenomenon. I got into the pool and the deeper I went. The stronger my muscles got. IN water, the myasthenia became a non issue. Any muscles not in the water were effected, so I was often in the deep end so that my breathing & shoulder muscles were in the water. I swam laps, taught my niece (and her friends at the pool) water ballet. Played with my sons. Taught M & S how to do tricks in the pool (walk on hands, do flips, backward summersaults, forward rolls etc). I’d play rough and we’d go to get out of the water and as my thigh muscles hit the air, the MG would hit me like a ton of bricks. My exhausted legs would not lift my body out of the water. In order to get out of the pool, I’d have sit on the stairs for up to an hour waiting for another dose of meds to kick in. These days I’d enjoy …but always paid a price. Worn out and tired, my ability to play with the boys at home was severely hampered.

By September, we heard the first very clear word come from his mouth. “NOW!” It was uttered at his brother when he took a toy from him and was teasing him with it. B wanted it back ..and back NOW!

Somewhere around the middle of September, we went in for the every 2 months MRI that we were doing following his craniosynostosis. The end of the month we went back to the neurologist and he told us that he was uncomfortable with the progression. They’d follow it for a couple more months, but that he felt that we were looking at the corrective surgery.

Late October, both boys were sick again and I woke up with pain in my side. I couldn’t stand up straight. My doctor told me to come in. He expected to find gallbladder disease but instead found that I had a rather nasty case of pancreatitis. I was hospitalized for 3 days that I have very little memory of. I know they had me on IV and pain killers. I have vague memory of the boys coming to see me, but not really of anything else. My doctor was concerned that the medications I was taking for the MG (immunosuppressant) might worsen this. When he discharged me a few days later, he was visibly relieved that it’d not gotten any more serious than it had.