History
Crystal was born July 18, 1999. It was a normal pregnancy. I worked through the entire pregnancy. The week she was due I even began participating in overtime at work. I thought she would never get here. I got desperate and after working 10 hours at work, I began mowing the yard for an hour when I got home. Nothing seemed to work. She was just going to come whenever she was ready. I was so excited. I finally was going to get my baby girl. I had a daughter in 1987, but it was best for her to go live with her Dad who lived in a town about an hour away from me. I was heart broken. She and I had been buddies. We did everything together. Sometimes I think she was actually my best friend. Well I had two boys after her and I learned fast the relationship a mother has with her boys is just sooo different from that of mother and daughter's. Not better or worse, just different.
The only problem I had with delivery is that Crystal was faced down. But she was healthy with no problems at all. 6 lbs and 6 oz. 19 1/2 inches long. The pregnancy was similar to that of my first child. She just seemed real mellow. I felt her moving frequently, but she did more stretching and rolling than kicking. Of course, since my first child was that way too I had no reason to be alarmed. I'm not sure if I would anyway. I was so naive in that I just assumed that the professionals would be in control of her complete care and that all I would have to do is follow their instructions. Well I went into this in full detail on other pages so I won't elaborate again. Just know that had I been more worried about her development, she would have been diagnosed sooner.
Knowing what I know now, Crystal had symptoms of SMA as early as 3 months old. She would not hold her head normally. I didn't associate it with weakness, however, it was just rather strange. She would always "push" her head backwards to a 45 degree angle with the back of her shoulders. I soon began stopping her from being able to go back like that. Even in bed at night I would prop a stuff toy between her head and the bed rails. That alone seemed to correct the problem, but I just never got over how strange it was for her to be doing this to her head.
She began having some awful weather allergies when she was about 4 months old. At least that is what the diagnosis gave for her watery eyes and runny nose and constant cough. He instructed for me to use a vaporizer and clear her sinuses with nasal drops. The first episode took about a week to clear up, but after that it would just take longer and longer. By the time she was 6 months old, nothing he had told me to do would get rid of it. She would be all watery and running for 3 months at a time and then with no notice it would just go away. Overtime, I noticed that it was the cold weather that seemed to trigger its onset more than anything else. I didn't find out what it was until six months after I got her diagnosis, on one of her visits to her neurologist. I complained that she would just cough all through the night, wake up coughing for an hour straight. I explained to him that her PT suggested CPT treatments. But they really didn't seem to be doing anything about it. He told me that in SMA, the patients have problems with excessive secretions that are triggered by breathing in the cold air. He said that I was wasting my time with CPT because the cough was not coming from the lungs, but riding on the voice box. He offered no help for treatment? Later, I learned from several of the families of SMA children that acidophilus would help with it. What a wonderful discovery! Crystal had really had a hard time with her secretions causing her to cough literally nonstop which turned around and interfered with her swallowing issues making the chore of swallowing even more difficult. The very next day after giving her first dose of acidophilus, she was completely cleared up. I was able to lower her dose and only use a higher dose if she is exposed to the cold and begins coughing again. Currently, I have had a lot of success covering her mouth and nose both with a scarf while going out in temperatures below 55 degrees. Also, I no longer need to use her acidophilus supplement because my Mom has been supplying Crystal regularly with a product of condensed fresh fruits and vegetables into a capsule called Juice+, which has acidophilus in it and much much more!!!!!! If you ever enter Juice+'s site, Don Adams, the distributor is my Mom's husband. They actually run the franchise together. In time, I will be discussing Juice+ in more detail within the "Amino Acid Diet" page.
Another problem Crystal had at the early age of 5 months, was her bowels? I just didn't not understand this one for nothing. This is just not the type of thing that you go to doctor for. Well, unless it is severe enough to cause pain and discomfort. I didn't allow it to go that far, but I still felt it was somewhat of a battle. I have 5 children and during the occasional occurrence of constipation or trouble moving the bowels I have religiously always used prunes. And granted, the first few times, prunes did work for Crystal, but over time I had to give her more and more until finally they just stopped working. I resorted to 3 jars of prune baby food, 2 jars of prune-apple juice, real prunes, adult prune juice and silly but just setting her on the potty seemed to actually help too. She never went to the doctor over this matter, I tried every trick I could come up with continuously to keep her bowels moving. Finally, when I got her diagnosis, she was prescribed Myrolax right away and I was told that because the abdominals are weak as well she is just not strong enough to push them out. Which, okay, you're the professional. But I always thought, "What does that have to do with her poops being so hard?" Later, I learned that children with SMA have difficulty with digesting and metabolizing meat and dairy? Since she has been on the amino diet and off dairy and meat, she no longer has a problem with her bowels.
As far as motor development, Crystal was right on target all the way up to 6-7 months old. She held her head up within the first month, rolled within two months, sat at an early age of 5 months and she also began standing up and sitting down in the bouncers for babies. I had absolutely no worries. But these were her last achievements. She went as far as mastering sitting up, and then she didn't gain any new talents. Again, I wasn't concerned because the range of development for babies can vary sooo much. But then when she was between 6 and 7 months she began again doing some really strange things especially with sitting up. She began falling again. But not like a "clumsy" baby. I had no explanation for why she was falling the way she was, it left me wandering "What a strange thing?" Sitting up, she would just suddenly without any kind of notice fall down laying on her lap. And there she would stay, she would not work her way into a lay down position or sit back up or nothing. She would just stay and cry. That is the only way she ever fell (forward). When she rolled, she would roll all the way across the floor, and then when she reached the end of the room she would just stay there, get bored and begin crying. That I had never seen before. Her standing just came to a complete halt. Which it took me a while to notice that one because she was only in the bouncer at daycare. But, the same as I did with all my children and many people do, I would hold her up in front of me and let her stand on my lap. She never really participated with me on this activity. But I thought she just wasn't interested in doing it. But I got to noticing that she wasn't putting forth any effort at all?? She began to feel really floppy and limp. Like she had no muscle tone. I unfortunately, waited until she was 9 1/2 months old and scheduled a complete physical with our family doctor.
Hoping for a diagnosis. She was 10 months old when we got into the doctor. He evaluated her both physically and mentally. I even showed him the strange things she was doing and I emphasized that not only was she behind but she was going backwards in her development. He diagnosed with having slight head lag, but overall she had far more age appropriate behaviors suggesting that she was okay. He suggested that since the range in babies development varied so much we do nothing, but recheck her at 12 months. I was upset but still very naive believing I was immune from anything drastic happening to me or any of my children. I believed that one can only be too paranoid about such things. So I let things go. But with the pushing of Crystal's Day Care Coordinator, I enrolled Crystal in First Steps Intervention and had a physical evaluation done on her. She was 11 months old at that time, and the evaluation showed her being at a 5 month old level of development. Which naturally made her eligible for the program. She began with PT twice a week for 30 minute session.
It only took 3 weeks of therapy for her PT to tell me that she was noticing that Crystal compensated much like children she has seen with muscular dystrophies. Well that was all my doctor needed to proceed with the official diagnostic process. He called Riley's Hospital for Children right away. They must of had a cancellation or something because we got in within two days. Our first visit was awful. We were in the waiting room for 2 hours, and even after she was checked in by a nurse we waited another 45 minutes before seeing the doctor. Then we waited for an hour for all the doctors to share their notes with the primary doctors of the facility. Apparently, they were severely concerned about Crystal because the primary doctor came in to see her himself and re-evaluated her. He told me nothing. He ordered lab work: blood and urinalysis. And scheduled a muscle biopsy and EMG. The lab work they did that day, but we had to get an appointment for the others and we couldn't get in any sooner than 2 months. When the day finally came, we began to get even more upset. Riley had still not sent any transcriptions to our doctor at home and no one there offered any further info, nor did they describe the whats and whys on what they were doing with her on that day.
It was 6 months after her diagnosing began and Crystal was 18 months old and still not one word from Riley. No test results. No transcriptions or anything. November 2000, Crystal developed an excessive cough that she just could not shake. She ran low-grade fevers, but worse yet her appetite went down to eating only a bite or two a few times the entire day. She was even drinking very little and she was losing weight. Doctor admitted her to the hospital for "weight loss". He gave her an IV antibiotic, but he said it was more of a precaution than anything, because he just didn't not hear anything in her lungs. But also through the IV she was getting nutrients to make up for her not eating. She stayed for 5 days. Then Doctor came in and said he had finally received something from Riley. It was half of the test results from the muscle biopsy. Which all he could understand out of it was the atrophy. Well duh! I think we all new that. But he did introduce us to a local neurologist. Dr. Goetting came in a spoke with me for quite a long time discussing in depth what he read on the test results. He pinned it to be SMA type 2. He totally filled my head with information about SMA, but then he paused to remind me that he couldn't claim 100% that this was it because he did only have 1/2 of the test results. My friends hopped on the internet printing as much info they could for me and I picked it up and went back to the hospital and read all night long. Crystal was discharged on Saturday November the 9th and her next appointment with Riley was that Monday on the 11th. Of course, the doctor there only told me 2 things that I didn't know already by this point. One was that he did confirm that it was SMA type II. He referred Crystal to more care with Riley and I said no thanks. She then began to see the local neurologist, Dr. Goetting.
After the diagnosis. She got overloaded with therapies: PT twice a week for 45 minutes, OT once a week for 45 minutes and DT once a week for an hour. Since she has been in her therapies and getting the diagnosis with a full explanation on what was to be expected of the future, Crystal stopped progressing and began overall maintaining her level of strength and ability.
I was attending 3 classes at Ivy Tech State College and working full-time with 5 children to tend to while living at a transitional housing unit. I tried to give my employer a proper 2-week notice, but I only lasted half a day. But I couldn't let go of my newly acquired desire and drive to graduate from college. I did change my curriculum directed toward work I could do at home. To start out working at home, I was told Medical Transcriptioning was my only option and even that was a maybe. To this day, I am going on the theory that if I do exceptionally well with all my classes, they won't turn me down for a job at home. But since I was living in the shelter, it was program rules that all residents either work or go to school 30 hours a week or more, so I had to sign up for a full-time schedule. As I finished the semester I had already began, I tried to organize a therapy schedule for Crystal at home. I managed to work with her some through out the day. But the following semester when I had signed up for 4 classes one being Medical Terminology and the other tough one being Keyboarding, since I knew nothing of either one of the classes I had to invest almost all my time studying and doing homework. Crystal went back to being neglected through out the days. I watched her through that 4 month period Crystal progressing again. Little by little she was just wasting away. I was stuck. I really felt that my family as a whole needed the benefits we would get from completing the program at the shelter, but it was really hurting me watching it being at Crystal's expense. Luckily, the daycare coordinator knew my study schedule and knew what her level of abilities were. We discussed the toll my going to school was having on her and I decided a month before enrollment for the next semester to plead a case to the shelter to grant extenuating circumstances on Crystal's behalf. Which is what I had asked for in the very beginning and the facilities Director told me he had discussed it with the president and they had said, "If we do it for you, we will have to do it for everybody." What a bogus line of shit. Excuse me. Well, I didn't push the issue. But with a gentle shove from Crystal's case manager and a quick phone call to the president for me, I developed the courage to see it come through. I had to promise to log everything I did with her including the times. Between school and working with Crystal, my hours had to add up to 30 or more a week. Which on the norm they ranged from 50-60 hours a week.
Because of fatigue, I couldn't just jump back in there where we had left off, but little by little we got back on track and remarkably we witnessed Crystal come back to life. She was able to regain all the strength and abilities she had before I started attending school full-time. I do appreciate this testimony because I know from experience exactly what effect it has on her when she is not worked with. In fact, I continued to work on different ideas for toys and therapies to be put in a well balanced schedule to give Crystal the maximum benefit she was able to participate in. I found that keeping things consistent and rotating activities that were directed towards the different muscle groups so that each area of her body had adequate time to rest between each session. Plus, the big difference between Mommy therapy and what she receives from her therapist is that I let her decide how much effort she wants to put into the activity. And I worked real hard observing her interests so that I could always offer activities to her that would strike her inner ambitions.
Reality check. As time went on, and as my knowledge grew in SMA I was able to see errors in Crystal's service plan. I got really frustrated because I thought that this was just the way it was and that I couldn't do anything about it. I had more and more difficulty watching and keeping my mouth shut. I even began counseling sessions and spent more and more time talking to Crystal's Service Coordinator. They kept telling me that I was Crystal's advocate and it was my decision for how Crystal's care be coordinated. It took them a while to get me brave enough to actually do anything about it, but finally I looked to replace her OT and PT and this time I conducted interviews before deciding on which therapist would continue with Crystal. I also began the research "warpath" again. I explored both FSMA and Our SMA angels. Little by little I gained some supportive email contacts of other SMA families and discovered several things that were needed to be done for and with Crystal than what local professionals were telling me about.
Amino Acid Diet. I had a hard time reading the info I found on these sites. Mostly because it was over my head and I couldn't stay focused on it. My thoughts often wondered over to the other children affected with SMA though and I began reading page after page of the different children's websites linked to our SMA angels. I absorbed a lot of information by reading these sites. But bless the day when I fell upon the website of Hannah Price. I emailed Stephanie Price to question her on the diet she had explained in the website and she was kind enough to give me easy to understand step by step detailed instructions on how to get Crystal started.
When I first learned of the problem with meat and dairy, I freaked. Without thinking I instantly took Crystal off the meat and dairy, then I consulted the doctor and a dietician. Crystal went about 2 weeks being off meat and dairy before I was able to organize with the help of the dietician an adequate supplement plan that would compensate for her loss of protein and other important vitamins and minerals. But even so Crystal showed a dramatic change. Her moods were more consistently happy, her endurance and energy levels went way up and her occasional "bad days" went away. This is another testimony that I hold forever dear to my heart because nobody, not even the doctors can tell me that meat and dairy do not have ill affects on Crystal. I can't say about all SMA children, but it definitely changed Crystal's life. My only regret is that I took Crystal off meat and dairy at the same time. For documentation purposes, it would have been better if I could have been able to note the affects of meat and dairy individually instead of together, because now evidence is showing me that meat in small quantities does not cause Crystal any harm. And I am continually experimenting with the frequency and the amount per serving to see just how much she can tolerate. Two questions: 1.) Was it just maybe dairy that was causing the problem all along? 2.) Is this a direct result of Crystal taking the product Juice+? It is my plan to continue my experimenting with serving Crystal meat and when there are no more questions to be explored I will begin doing the same thing with dairy. Maybe in the end I will have the answer to those two questions.
Unfortunately, Crystal's new therapists were hired a couple of months after she began the amino diet, so I only have the developmental therapist to testify to the changes the amino diet had given to Crystal. I would have like for her new PT and OT to have learned from the experience of witnessing the affect a diet can have over such a fragile child. But anyhow, Crystal expressed even more changes when things got settled down after her therapist changes. The DT and ST noticed that overall Crystal's attitude with even them improved when switch of the therapist was complete. Jill Cannon specifically said that during the period of the conflict with the other therapists (especially the PT), Crystal was easily agitated and expressed a strong desire to be able to control the activities they shared and often was just plain hard to get along with. But once Crystal felt secure and established with the new therapist, Jill said, all of this changed. She now gets excited when Jill comes and is a joy to play and work with. She says not only is she more socially involved with her but she also participates with more aggression in the various activities Jill chooses for her to work on.
Any strengthening that Crystal displays is over a long period of time, but she is getting stronger. My opinion is that for every muscle in her body, there is a maximum level of ability. And until she reaches that, she can continue to show a gain in strength, but that doesn't mean that the number of live nerve cells change in anyway. Would be nice if there was a test to determine how many are still sending impulse to the muscles so we could monitor the progression of her disease. To this date she has not reached her maximum in any of her muscle areas and continues to show strengthening in some of the more affected muscle groups like her legs and arms and shoulders. We have even noticed some difference in the strength of her voice and ability to blow whistles and bubbles!
Today, Crystal has accumulated quite a collection of medical equipment and therapy toys. She has many activities that she can entertain on her own without me having to be right there by her side. She finally reached the point where she is able to even participate in many more activities on her own involving working her legs: Like riding a scoot toy school bus and sitting and standing and even maneuvering a tricycle with her legs on the floor (not the pedals yet) and she finally got her Rifton gait trainer and of course her favorite, that big horse's troft that she swims and walks in. She had an outstanding event on March 19, 2002 .
More coming....