Questions to me Answered by me!

April 2002:
Q: The acidophilus - I have some of this but have not started Aschdon on it as of yet because well I don't know how much to give him. Also starting to get his vivonex going I wasn't sure if it was good to have that at the same time.

A: You may have to play some with the dosage to get it just right for your child. You are right you don't want to start two changes (whether it be a new supplement or a different dosage) at the same time. Because if your child encounters any problems you want to know which supplement caused the problem and which supplement you will need to adjust or maybe even remove from his plan. There are no set dosages for most of these supplements that we add because the children's needs differ so much. But what I have learned about acidophilus is that 1.) It aids in digestion 2.) It helps with excess secretions 3.) If too high of a dosage is given then it can cause diarrhea and cramping. The instructions on the back of Crystal's label says ¼ of a teaspoon for ages 4 and up. Well Crystal is almost 3 and her doctor still wants this to be split in half. Also make sure that you are using a milk free acidophilus. The brand I use is stored in the refrigerator at the health food store.

Q: Bracing for ankles: I would love some of the equipment that I saw available. Aschdon does have AFOs but they told us to only have them on him when we go anywhere. I can see in a few sites that that isn't the case. I am not sure on how to approach the therapist with this.

A: I see in Crystal that she is so weak that she was losing her arch, curling her toes, and her ankles were everting. I believe that it causes her great pain if she was to stand without braces, and I do not allow her to do this. I don't even allow her to stand in her "MDA rejects", because they don't properly support her ankle, arch or toes. Basically, Crystal wears her "MDA rejects" as shoes all throughout the day, and if she is having problems with plantar flexion, then even at night. But when she does any standing or assistive walking I change her into her SMOs, which is what her other braces are actually called. We went Tuesday to have her fitted for some DAFOs, which are basically the same as SMOs, but go half way up the calf and are supposed to help with preventing plantar flexion as well.

But you also told me that Aschdon has a dislocated hip. Please forgive me if you have already done this, but I think you need to have him seen by an orthopedic surgeon to see if he can weight bear on his hip like it is. Your therapist may be right about you causing more harm than good by having him stand on it. But it would still be important to stretch and massage the knees because even though your child may not use his legs contractures are painful and very uncomfortable, in addition, many of us are still praying for a cure and we want to save as many of our child's abilities as possible because the likelihood that any progress will be made on correcting any damage that is already done is very little.

Q: Spinal stretching: He has well what I call a turtle shell. Not sure what the name for it is. We were told to only have him in it for about 30 minutes a day. To me I am a difference in his spine now and it is not for the better. I know there has got to be something out there for stretching and such and maybe longer in the shell?

A: I am not sure what this turtle shell is used for. Scoliosis? I have a lot of info about that on Crystal's site as well. I have nothing to give you from my own experience because that is something I am actually working on right now. Crystal's team does not believe she has scoliosis because it is not fixed. She only has a curve because of her muscle weakness indicating she is just slouching. So I am in the process of preparing enough convincing information to present to her family doctor and then with his recommendation I can show this to her orthopedic surgeon as well. I believe the info on Scoliosis is on the "Directory" page of Crystal's site or if I didn't link it all to that page it would be under her "Physical Therapy" page. I also have some email responses that I will be adding to the site soon, so keep an eye out for them.

Q: Nutrition: What kinds of food do you feed her? I am working on getting Aschdon off of the dairy and meat but now I am at a loss for what to feed him.

A: This is something that you are going to have to do on your own. I can give you suggestions, but these are things I have had to come up with from Crystal's interests. When Crystal first started on the diet, I would have someone watch the kids and I would go to the grocery store and walk up every aisle grabbing any foods that I thought Crystal might like or does like and just read the ingredients listed on the labels. You would need to watch for the dairy allergens, like I said before, which are: milk, buttermilk, non-fat dry milk (or anything that contains the word milk in it), butter (or anything that contains the word butter in it), cream (any kind of cream is made creamy by milk), whey, caseinate, sodium caseinate, lactose (or anything with the letters lact in it).

It was like a nightmare. I spent hours upon hours searching for food that she would eat and I wasted a lot of food to, because I tried so many things. Crystal does not like any vegetables and few fruits. She really only would eat noodles with spaghetti sauce or margarine, but she did like the veggie dogs. I was worried they would cause her problems so I started out only giving her one every third day, so I was far from filling her tummy. I found plenty of snack type foods that she could have: crackers, chips (plain), popcorn (with margarine), raisins, fruit bars, even some animal crackers are milk free, all fruits and vegetables (including baby foods), peanut butter and jelly, pretzels, potato sticks, and you mentioned he likes french fries which are fine, and there are lots and lots of dry cereals they can have. You said you tried rice milk, but did you try mixing it with Hershey's chocolate syrup or even Nestlé's strawberry syrup? But don't put make such an issue out of getting him to drink another form of milk, pediatric vivonex or Tolerex will supplement his needs of vitamins and minerals. You may need to have the doctor give him a prescription for calcium and vitamin D though; when we figured the RDAs on those they were insufficient. Don't let him talk you into not worrying about the Vitamin D, because the body only produces Vitamin D when we are exposed to sun light and since we keep our kids in out of the weather, they need a supplement for this, because calcium WILL NOT work without the help of Vitamin D. The important thing on drinks is that they get a good amount of fluid in them, which you can supply him with anything: water, juicy juice, Kool-aid…Fluid is necessary for hydration just like it is in even normal children. Fluid helps with blood circulation. Good blood circulation is important because this is how everything is transported to where it needs to go in the body, not just oxygen, but also the release of carbon dioxide. Also, nutrients are passed through the blood. Whatever the body needs, usually it is the blood that takes it there. The more fluid in the blood the faster it circulates.

I had to come up with some really crazy ideas to get Crystal to eat. Like the ketchup sandwich, stripping pizza of the toppings, I even stripped raviolis of the sauce and the meat inside and just served her the noodles. I had to do the same thing with finding the right mixture for her Tolerex. I played and changed it and tried new things all the time until I finally got a remedy that works real well.

Q: Potty training!! Help. We have a seat for him but he has no meat on his butt and it hurts him to sit on it. Any ideas how to adapt it or something that would work better. He is so ready and so are we.

A: I bought Crystal a cushioned potty seat from Target that fits directly onto the toilet. The whole in the center is much smaller and I don't have to stay squatted holding onto her until she goes. Also, the cushion provides comfort and security for her.

Q: Range of Motion: I printed out the range or motion information. I don't understand it but I would like to show it to his therapist. IS that an ok thing to do? I would think it is but I am sure I am going to get negative feed back from it.

A: You have my permission to use any of my information that you want. I have two reasons for putting so much time into Crystal's website: 1.) Of course, is so that everyone can get to know her better. 2.) To help teach any other families with any problems they are having with helping their child. I believe all of us have had our problems with getting all the information that we need for our child's care and I just wish that there would be a book outlining all the issues in easy step-by-step instructions. I have actually considered writing such a book, and may just do this, but I will need to have all of my research complete before I do. I know you are losing faith in his therapists but they should definitely know about these procedures. I wish I could see you so I could show you. What I do with these listings is once a week I sit down with her and check each one of the ranges of motions on that list and check for stiffness. I also have a list of definitions for the terms used on that list that may help you understand, but in the mean time get out your copy of the list and look at the second column, it says what the picture is doing and what that term used means. For example, let's look at page two under forearm. Above the picture it says "Pivotal". In the second column it says " Supination: turn lower arm and hand so that palm is up." Supination is the term and then it is followed by what range of motion you are actually doing. The rest of the terms and definitions are handled the same way. After I get done with this email I am going to gather from my Anatomy and Physiology book up all the information about these movements and even on the different types of joints and how many movements each type of joint is designed to perform. Maybe if I can find some info on bones that need weight bearing to develop.

Q: Finger bracing: I remember you saying something about her arm thing at night. What was that and what does it do? I am really interested in anything that will help Aschdon's left hand. He has gotten better but I would love to know if there are further things I could do for him.

A: Crystal has a brace that fits her whole wrist, but is for her fingers. She has one finger on her left hand that stays curled. Her current, and awesome Occupational Therapist said it was because she keeps her fingers tensed up through the night while she sleeps. It is designed not to keep her fingers straight, to stretch the finger out, but to keep the fingers in the "relaxed" position, which would be like if you laid you arm down and relaxed your fingers and hand. That is the relaxed position for the hand and fingers, but at night Crystal keeps her hands and fingers balled up into a fist. Unfortunately, it wouldn't do anything for supination and pronation. If it is a contracture stopping him from being able to supinate, then the treatment for that (from what Crystal's Occupational Therapist says) is very painful. Crystal has the same problem, but only with both wrists. She can turn her hand completely around one way, but turning her palm up she can only go about half way. We decided that it wouldn't be worth the pain to bring this movement back, but we do range of motion with it daily to make sure it doesn't get any worse. We also do range of motion with all other areas that seem to be getting stiff, even her knees, hips and spine

Q: No terms or conditions: May I please use the basis outline of your letters to qualifying therapists so I can start and switching mine, as I am not very good at expressing what I need in written form.

A: As I said earlier, you can do whatever you want with my information. You can learn from it, copy it, share it… it doesn't matter to me at all. I am not looking for glory, my only hope is that I can help families from having to go through some of the nightmares I had to.

Q: Religion: I don't know if you are a religious person but I am so please don't be offended when I call you a God send. Really I do.

A: I don't know if everyone would consider me a religious person or not. I feel that I am. But I don't go to church. But I would like to, but we just do not have the type of clothing that would make me feel comfortable attending church. Because of your question though, I did go ahead and called our church to let them know that we very much so want to begin attending again, but that we just don't have the clothes for it. I got an answering machine and they haven't returned my call yet but I am going to inquire about possibly getting some assistance with getting some clothes for my children and me. Besides that I wasn't brought up in the church and I don't really know the bible, but I do try to follow an honest, trustworthy type of lifestyle practicing making right choices. I do know the Ten Commandments and I feel that I abide by them. I do have testimony to a couple of events that I just can't deny the Lord and his part in it. That speaks louder than words ever could to me. I know he is up there and I and I trust and have faith in him that he is our father who art in heaven and that he watches over us. I believe that he is there for all of us who ask for him to be in their heart, and I believe that if you ask him he will guide you in the right direction. Do you think I am a religious person?

Q: The fight with doctors and therapists: I have been fighting and fighting for so long with this and having no one in the state of Wyoming know what SMA is.

A: You are not alone. This is a common thing. I have read many horrifying stories about due to the doctor's lack of knowledge, major harm was done to the child. Ignorance is everywhere: Therapists, Doctors, Nurses, Hospitals, Medicaid, Waiver programs, dieticians…you name it. You are going to have to be the one responsible for gathering up information for your child. Make sure and get hard copies, addresses, phone numbers, or any way you can to get this information to the professionals that are involved with your child. They often won't listen to common people, but they will however listen to facts from other professionals. I also have had to go over their head before, and do it anyway and then go back and say, "Look at what I have done and the effect it has had on my daughter. I think it is important that you back me on this treatment plan."

Q: Poor bed side manners from therapist: Well I was thrilled with his progress and wanted to share it with his speech therapist as she was only observing Aschdon since he had caught up. Well she dismissed what I was telling her (which is my son is saying 5-6 word sentences and using the little words like as & and) and she asked about his wheelchair. Well I told her we finally got it but as of right now he is too weak to use it. She told me that I needed to have him in it anyways and stop letting him get away with playing like he is a baby and helpless

A: I feel like your therapist was right and wrong: I know it is hard to be firm with your children, and it is even harder to be firm with a child with such fragile and special needs as our children do, but it is for their best interest that you really need to establish a relationship with your child that is both that of a compassionate and caring mother and also one that is that of a teacher that is willing to put her foot down and get things accomplished for her student. Being a teacher does not mean that you will need to be cruel by any means, just that you would use such skills as providing distraction and redirection techniques to try and make the child forget that he is having to work. Use creative ideas to disguise the work into playful activities and games. Follow your child's guide and let him make as many of the decisions as possible. If he doesn't want to let you do the stretching, then use his legs to play "Peek a Boo", or something else that would strike your child's interests. But always be his friend and think of this as his time to grow and be more active in life.

I feel like your therapist was wrong in that it sounds like her bedside manners are just awful and unacceptable. She showed no compassion for your joy, which makes me wonder just how much compassion and concern she does have for your child.

Q: Importance of communication with therapists: His PT I really don't like as she doesn't listen to me and has unrealistic goals for my son.

A: It is a must that the parent understand all the issues involving their child so that they can share input and ideas to the therapists, and then in turn the therapist also needs to realize that sometimes Mom knows best. Because Mom is with the child more then anybody, it is often helpful to share ideas with the therapist concerning the child so that they can better evaluate the child. Unless, the therapist has spent an adequate amount of time with researching SMA specifically, then they will need to listen to you. If they don't then call their bluff and tell them they need to either research for themselves and/or read information that you can provide to them. I had a big problem with this with both Occupational Therapies and Physical Therapies. In fact, Crystal's OT looked at me straight in the eye and said, "I don't have enough time in my day here at the center to research all of the children's disabilities that I see. When I go home I have my own child and a husband, which I am sorry if this hurts your feelings, that are my first priority." Both therapists have been replaced and the new ones just are not like them at all. Best decision I have ever made for Crystal. I mean, I don't care what their problems are, it need not interfere with my child's care or they just are not qualified for the job of taking care of my child. End of story.

Q: Legs and keeping them alive: I agree about the legs being forgotten. I asked and asked for ideas to help my son with his legs. I do what I know but it isn't working, as his legs muscles are getting so tight he can't even straighten his legs now.

A: Why is it that since a child can't walk therapists doesn't feel it necessary to work with their legs? It is beyond my logical thinking. The less activity going to a muscle group, the weaker they are going to get. The arms and trunk are so easy to work because they do not require one on one attention all the time in staying active. But the legs on the other hand, often are so weak that they are so few activities that they can do. What we as parents have to do is place the child in the proper position to do the activity and let them do as much of it as their muscles will allow and then we pick up the slack. Example: Walking-When I first started walking with Crystal, I was doing actually most of the work. I continued to do it any way just to teach her the proper procedures (right, left, right, left…). I held her pelvic girdle and supported her tummy with my forefinger and with my thumbs I would actually push her legs up and thrust them forward. Everything I did was slow allowing her to contribute as much as she could. Once she got the procedures down, I could feel her beginning to assist me in moving her legs. She could drag her foot if I lifted it some. As time went on she realized that if she leaned her trunk to the left, this would lift her right foot up some and then she could move her foot forward all on her own. I continued to support her trunk and hold her upright but she began to advance her legs forward all on her own. It has taken a long time, but currently she doesn't lean her trunk as much and is able to actually lift her foot slightly while advancing it forward. Coming to a sitting position-Often Crystal used to fall and lay down. We always kept a pillow behind her for this. I took advantage of every fall by not picking her up by myself. I only put forth enough effort for her to be able to do it herself. If they believe they can do it then they will. If they don't believe they can do it then they won't even try. Always set your goals high for your child, but let the goal always include "With assistance".

Stretching and even massaging techniques are best effective if you apply them several times throughout the day. This is all that I know to do for muscle and tendon tightness. But for contractures, I was once told to put them in a bath of hot water (not too hot to hurt or cause exhaustion), and do the stretching and massaging there for about a half an hour a couple of times a day. The heat of the water is supposed to help relax the joints.

Q: Ideas for the legs: As for bearing weight on them I couldn't even imagine having him try that, as I know his hip is out again. I had a prescription for a stander but the therapist wont do it because she said he has to be able to straighten his legs and that with his hip out it would do more damage. So I need help on this one. Do you have any ideas on something I can start with to help his legs get stronger and maybe able to stand?

A: Yes, I have lots of ideas to start him off with, but I can't say that I would recommend anything at this point. The first issue that needs to be completed is his possible contractures and hip dislocation. This is not an issue that Crystal has a problem with and I am really limited to the knowledge I have inquired for Crystal's benefit. I would advise strongly asking your family doctor to make a referral for your child to be seen by an orthopedic surgeon and have these issues handled by him. He would know what to do about the any contractures or dislocations and if it would be harmful to your child if you tried any standing or walking activities with him. If it is too late for him too walk or stand then that is the way it must be, because your child's safety is also an important issue. Explain to him that he really needs to be more involved with activities of standing and leg muscle therapies and if the treatment wouldn't be too devastating to your child it may be a good idea to see if he will go ahead with it.
Q: Having the best therapists for your child: I had also asked the head start about switching PT as that is where we are going through but they told me I need to discuss it with my present PT. I liked your idea about interviewing therapist and I think that I what I am going to try to do, as my son needs someone that is willing to help him as much as I am. Suggestions on that?

A: Crystal goes through First Steps Intervention. Do you have that service available to you in Wyoming? Does your child have a Service Coordinator? If not, it would be a good idea to get one. Call your doctor and ask him if he has a list of different services available in your community to assist needy families. He also may be able to tell you other options available to your child other than Head Start. We have Head Start here in IN, but it was not recommended that Crystal receive her care from there. First Steps Intervention is actually quite thorough with parental rights that assure you that you are actually in charge of your child's care and decision-making. Having the desire to help your child as much as you are is the way a therapist is supposed to be. If you have one that is not then they may be just doing the work for the money or burnt out. The two therapists I had to let go seemed to be that way. The therapists Crystal has now show their excitement when they talk to me about what is going on with Crystal. In fact, her new OT shocked me on the phone when I called to let her know that I had chosen her. I said, "I have made my decision and was calling to let you know." and I could literally hear her holding her breath while she waited for me to tell her. When I told her I chose her she let her breath free, sighed and said, "Oh that's wonderful. I am so excited." And when she comes to the house, that is what I see, excitement and joy while she works with Crystal. Her new PT is the same way.

Q: Therapist write the recommendations for equipment: When we went for our approval for his wheelchair we were also supposed to do his stander but his PT wont do it and the company wont do it without a PT approval.

A: That is one of the reasons why it is so important to be able to communicate and get along with your child's therapists. There are some things that you will not be able to do without them. Even if the doctor would write a prescription for medical equipment, Medicaid will insist on having a recommendation from the therapist. There is a fine line between a therapist respecting a parents wishes and where the parent needs to listen to the therapist and at least admit that, until you can find evidence otherwise, that what they may be saying is true. If a good relationship can not be established between parent and therapist, then I believe a new therapist should be sought out.

Q: Keeping notebooks and files: I would like to be able to have information on file as I can then pull it out when I need it and have it there to show therapist and his doctors (which we have really caring doctors that take care of Aschdon. They don't know really what SMA is or how to help but they do listen to me and look at me for direction).

A: I have found that the professionals that are interested in staying open minded and continue their growth in knowledge, are always more than willing to read research articles and words from other doctors to not only benefit their knowledge and experience, but also to see that their patient receives top quality care. It is however, in the "Hypocritical oath" that they all sign that they vow not to ever let their views be altered for personal gain or in any manner that would put their patient in harms way. So for this reason and others too, it is best to work with them on their level; by providing them with material that they can research and learn and understand for themselves. They must know that the patient is not going to be harmed. On items that I present to Crystal's doctor that he feels just will not hurt her, he doesn't require for me to supply him with any information. But on the issues that could put Crystal at risk, he will refuse to the end until he truly believes it will not hurt her. With the right therapists and even the right dietician, you can teach and train them about SMA as well.

Q: Fatigue: I would like some articles or info on fatigue and how it is detrimental to their health if they get overly tired. I have tried to explain it to the therapist but they just don't listen.

A: I currently don't have any handouts or links to that type of information. I came to this conclusion because I have been warned about it from Crystal's therapists (even the old ones) of this problem. But I am sure that there is information about it on the web. I have done a lot of experimenting personally with Crystal on the fatigue issue and I then began having a conflict with her old therapists because they were overly concerned with fatigue. They were not willing to see how much Crystal could handle and they would blame every episode of weakness that Crystal would have on fatigue. They were both very narrow minded. They told me the same information over and over as though I was stupid and couldn't retain the information. I always thought in my head, "Okay, I got it. Next topic." But never the less I have got Crystal on a consistent schedule within her limitations. Of course, you would have to find out what your child's limitations are. Also, when I am working with her I always let her be my guide. If I know that she is well entertained and not just bored and she tells me she wants to stop, then I honor her wishes always and this has been real effective because she knows best of how she feels and when she is getting tired and it is best that SMA children do not over exert themselves. The reason I know this is because I have seen it in Crystal. When I used to try and push and encourage her to do more, she would become exhausted and fatigued. And it is not that being fatigued is detrimental to their health, but that it will leave them even more weak and unable to function up to their norm. So they don't have any wasted time just laying around not being productive you want to avoid fatigue always. Consistency is always best with many issues involving these children. As far as things that you would be in control of making sure to avoid fatiguing your child, there are a couple of things that are important: 1.) Make sure that he has a consistent sleeping schedule. For nap and bedtime the same time (or close to it) everyday and make sure you allow him to receive as much sleep as he needs. Avoid situations where you are waking him up. Let him sleep until he is done. If our children do not receive a good sleep schedule then they can stay fatigued for as long as two days after they get back on track with their sleep. I have seen this in Crystal every time I dare to steer away from her schedule she has problem with fatigue and with her it would take her two days to recuperate. 2.) Avoid heat. In the tub and outside. They both can drain your child of energy and leave him fatigued again for as long as two days. I follow the rules for outside that anything between 55º and 80º Crystal has no limitations on how much time she spends outside. 80º to 90º I only allow her to be out for 15 minutes at a time maybe once an hour maximum. But definitely anything higher than that, then she stays inside. And as far as the bath tub I do not limit her time, I just decrease the heat of the water instead. She has grown accustomed to taking luke warm baths. I even prepare the water in her horse's troft at a luke warm temperature. The amount of fatigue acquired from too much therapy has shown in Crystal to be only a few hours though. Often I will put her in her horse's troft a couple of hours before bed and just let her have at it, until she is done. Yes, I see her fatigued when I get her out but I also see in the morning when she wakes up that she is fine, and ready to go for some more. This is also why I rotate her activities throughout the day to different muscle groups, to allow adequate time for her muscles to rest until she works them again. Often while I am assisting her with walking she will ask to sit on my lap and then want to get back up only 2 minutes later.

Q: Nutrition: Next my biggest thing is his nutrition. I need all the info I can on that one. Example should we go back to feeding him baby foods?

A: It is my belief to forget about all the worries of proper development in the eating field, because the diet limits what they can have so much that they need some relief too. I insist Crystal takes her amino formula with all of her supplements in it and I make sure that her fluid intake stays at a decent level and then after that I do the best I can to provide anything that she will enjoy eating and let her make the decision. I still give Crystal some of her favorite baby foods because that is an easy way to help keep her calorie count up. But I never force her to eat for her calorie count. Doctor says as long as she is growing and gaining weight he wouldn't worry about it. And she does grow, and she gains weight just maybe an ounce between each visit. I even give Crystal a baby bottle with filtered water in it to go to bed with and she has been broke off the bottle since she was a year old.

Q: Serving supplements (hard pills): For his vitamins and other supplements (folic acid and such) how do we give that to him? I know it is something he needs but he can't swallow a pill.

A: I crush all of Crystal's supplements that come in a pill form and make them powder form. I do her multivitamin and vitamin D pill this way. Folic acid is on the top of the list for my next research, but at this date I only have one piece of information concerning folic acid research and it is located on the "amino acid diet" page of Crystal's website.

Q: Chiropractor: We have had it suggested to us to bring him into the chiropractor as that will help slow the scoliosis down also. We were doing it for a while but when we got told it was bad we stopped. Do you know anything about that?

A: Chiropractor being involved with SMA is the first I had heard. But if it works then that probably would be a good idea to continue, because as far as hip dislocation the orthopedic surgeon say surgery is the only thing to do for his hip.

Q: Being told to stop standing: At one point we were doing standing exercises with Aschdon with his belly against the couch and us supporting him from behind but eventually the therapist said not to. No reason given.

A: Anytime you have instructions for your son from any professional team member, don't let the issue rest until they can make you understand all the whys and whats. In this situation, I wouldn't stop asking until I understood what I can do to correct it, or if they don't know they should at least tell you where to go for help. I do all kinds of standing exercises with Crystal. She has sublexed hips, partially dislocated, but the dislocation is not complete. I was not told to stop standing or walking her. Her legs are not curled either. During her stay at the hospital for her last pneumonia episode, they had to put the IV in her ankle and her legs seemed to get locked in the curled position. They also got locked in the stretched out, and straight position too. I would massage the legs and do stretching but, which helped but she really needed to get up on her feet. I explained to the doctor what was happening and since she had been on the IV for two days, she should be hydrated enough to get a stick in the hand like they usually do. He said okay. It was done and I began her weight bearing and the problem then seemed to be over.

Q: No regrets: Honestly if Aschdon never stands or walk it is ok with me. I just want to be able to help him go to his limits for him without thinking back some day and wondering if there is something else I could have tried.

A: If you want him to go to his limits, then standing and walking is very much a big part of that. Some of us believe that a cure is right around the corner and want to prevent, as much muscle wasting as possible and stop and contractures, but the cure is not going to be able to fix this kind of damage. Then you may have a huge deal of regret to deal with. I know and understand that Crystal will never be able to walk, but I want her to always be able to do what ever she can, even if she can't do it by herself, I will always be there to assist her. Besides anything that you don't try, eventually you will always be able to say, "I wonder what would have happened if I had've tried that, or this…"

Q: Therapist sometimes are too late with information: As for my therapist being right how come she didn't help get the stander or do other exercises when his hip was in the socket?

A: That is another issue we share. There were many issues that I was the one who had to point it out to therapist, and by the time I questioned them about it, then it was already too late. Like the range of motion exercises would be my biggest example. I was not told about any of it. Until I noticed one day when I was trying to turn Crystal's hands up so I could put lotion on them for her to play with I never even thought about range of motion. I was terrified to see that I couldn't turn them even half way up. I spoke to the first therapist that came after I saw this and what do you know, they had a whole book of information on it. Well, Crystal will never be able to correct this contracture without going through a lot of pain so now it is too late. The therapist she has now are constantly evaluating her body and needs. They believe in be safe then sorry. Even if they see something wrong and they don't think it is a big deal, they still requests test in case. And they to this day are still filling me full of more information as she grows and her circumstances change. These therapists from Crystal's past may be okay for some of the simpler delays, but SMA is too critical and everyone must stay on top of her care to make sure that she is okay.

Q: Range of Motion: The best thing and the only thing that the therapist has given us to help straighten out his legs are with every diaper change we are to stretch him by putting one knee to his chest while straightening the other and holding for 10 seconds. But with his hip out it has been causing him pain when I do it. Also I forgot she wants us to put him on his stomach more so he can stretch that way. I try to do it but he cries so much that I honestly don't do it much. He only cries because the carpet irritates his face and he can't roll over.

A: That is what I used to do. The more often you can do it, the better and diaper changing just seems like the perfect opportunity because you are already there anyway. Crystal never liked being on her belly either. And if I couldn't lift my head up, I wouldn't want it scraping against the carpet either. But Crystal was easy to pacify by putting a soft bedspread down while I worked with her. It is the same bedspread I use when we practice her rolling. I don't know your son, or why he cries but you might want to try not stretching so far. I noticed that when you stretch you can feel it getting tighter. I only go a small bit further after I feel it getting tighter. I play games with Crystal while I do all of her stretches, because she doesn't like it either. But again, she is easily entertained.

Q: Rolling: By the way he used to roll over but when his hip went out again he stopped doing that. Is there any way to help him be able to do that again?

A: I put to play the theory that "If they can't do it by themselves, then I will be there to assist them so they can do it." Crystal went through a period where she was having a hard time rolling over by herself. She would often get stuck. And she hates being face down and stuck. For a while, I kept trying to encourage her to do it on her own. I would even bribe her, but it seemed that she really just couldn't do it. I wasn't willing to accept that because rolling works so many muscles all in the same exercise. Finally, I figured out a way to assist her all the while she can put forth as much effort as she was able to. I don't know if I would ever be able to explain how I do it in words. I am half tempted to make you a demonstration video, because I feel that success is all in the technique. I kinda bump her, softly and slightly. I place my hand on her bottom and just give her a little nudge, I can feel her efforts, any progress she makes in the right direction-then my hand is right there to make sure that she doesn't roll back which is discouraging to her. Once she makes the roll to her belly, I taught her the position her arm needed to be in to continue the roll. She must put her arm up before her head reaches the floor, because her head will lay on her arm. She can't lift her head over her arm so we just fixed that problem by always keeping her head level with her arms. Then as she lifts her tummy up to complete the roll, I revert back to nudging her and softly bumping her and not allowing her to fall and roll in the wrong direction. Does this make sense? Well now she is back to rolling all by herself and she rolls very well too. She actually enjoys it.

I don't see that the hip would cause any problems with this, but again this is an area I have little experience. I wish I knew what the differences between our children's hips were. I am scared to advise you for fear that it may cause him problems that I was unaware of.? Sorry.

Q: Supination (turning palms upward): Aschdon can't supinate his left arm. I have asked and asked to be shown how to do the stretching for it but they said that it is their job to do that and that I should just be the mom and not have to do those sorts of things.

A: I put my thumb on the bone just below her thumb in the palm of her hand and simply pull it outward. It seems that this spot helps move the whole hand at once and doesn't scrunch her hand or fingers. It is their job to teach you!! Something as important as stretching, needs to be done frequently everyday. How are they going to take care of that? Patty cake is Crystal's favorite way of doing this. Also, Every time I wipe her hands down, with the was cloth I pull her hand outward using that same pressure point. I was told that the contracture couldn't be corrected without causing her great pain and they advised me not to pursue it. But I still do the stretching to keep it from getting any worse.
Q: My husband and me do little things with him to help his arms, as they are really skinny and weak. We make sure he helps or at least tries to help take his shirt off and his socks off.
A: I just wanted to comment on the fact that this is an excellent way to work with your child. Most children have a real strong interest in doing things for themselves and that might be just the way to disguise the therapy. You can practice brushing hair, opening the drawers, picking out his clothes, washing himself, the sky is the limit….I involve normal everyday functions in her therapy all throughout the day. Like her walking for example, I don't have a session with her walking. I just walk her to her next activity and to the potty. This usually consists of about 5 minutes of walking, maybe 20 steps. I don't know I haven't really ever counted the steps.

Q: Manual vs. Power chairs: As for his wheelchair it is manual also as the muscle clinic in Denver said it is a technicality that we have to go through in order to get an electric one.

A: I would exhaust myself trying to come up with ways to get him on hard surfaces so he could use his manual wheelchair. When Crystal first got hers, she could barely move it. And little by little she got faster and now she just goes anywhere she wants to on tiles. She can't move it on regular carpet, but she can on the real flat thin carpet but that will tire her after a while.

Q: Scripts for equipment: I would also like some help about getting equipment for Aschdon, like a stander, and gait trainer.

A: You need to take care of his other issues first, like the contractures and the dislocated hip. If the doctor and/or the therapist agree that he can begin weight bearing again, then you will have to work his legs up to being able to use the gait trainer. There is also another assistive device that may be a good thing for you child. They are called RGOs. They are supposed to assist in walking with a mechanical mechanism in the back you can push to have the leg proceed forward. I haven't followed through with these only because I feel Crystal does well without them. Remember the order they need to be requested: The stander and then the gait trainer. Indiana Medicaid will pay for them. Crystal has them. Crystal's wheelchair and gait trainer was approved on the same Prior Approval.

Q: Leg activities: He has such a high desire to walk but we have no means of being able to work with him.

A: Even if he can't weight bear, there is still lots of things you can do with him. Like in the water. Scoot toys. Kicking games. You can hold his legs up in the air and play games with them. Even positioning the legs laterally while he is sitting will help. When you hold him even place the legs in the lateral position.

Q: Medicaid: I was told that Medicaid wont cover that stuff unless we get a waiver but we cant get a waiver because he is not mentally handicap, is this true?

A: I don't understand that one at all. That is not the way it works here at all. Medicaid pays for everything that Crystal needs. She has not been denied anything. She is on the waiting list for the Developmentally Disabled Medical Waiver, but that waiver has a 3-5 year waiting list. We also have a "Special Needs Medicaid" here which is supposed to cover even more equipment that regular Medicaid may not cover.

Q: Damage-What is permanent and what is not: It took us 2.5 years to know what was wrong with my son and by then I know some of the damage was already done due to lack of knowledge or help from doctors.

A: One important thing that you might want to think about: The only permanent damage in strengthening is the nerve damage. Any nerve cells that may have died while waiting for the diagnosis are dead and there is no way to bring them back. But the muscles are not dead, they are just atrophied. This mean no nourishment or no development. Which you CAN correct. You just have to nourish them and develop them through therapy and helping your child keep these muscles active. The strength can come back. The control all depends on the remaining nerve cell count. The larger the nerve cell count the higher range of strength you have to work with. The lower the nerve cell count the lower range of strength you have to work with. And there is no way to measure this. You just keep working with your child and eventually he will get to where his strength has stopped increasing. That is exactly where the strength gain comes from in these children. They are just strengthening already existing muscles.

Q: Be clear and give full detailed instructions: I am trying my best to do research but I guess I am just not very good as I don't have any one to consult with as the therapist don't agree with me and the doctors don't know enough to help. We have gone to a nutritionist but that was no good because they don't know what to do.

A: Research was very hard for me too. It took me taking medical classes to start being able to understand some of this stuff. For school, I had to read it over and over and embed it into my head. My researching skills are improving over time and now it just isn't as difficult. Just don't shy away from it, because it will get easier. I have had to teach both her doctor and her dietician about SMA and then they have applied what they know. Together your child can be taken care of. I hate hearing about the conflict with the therapist. I know I was going crazy when I had to deal with it.

Q: Tolerex and supplement mixing example: Everything I get is so vague and honestly I need things written out exactly as they are to be done or I don't get it. Not that I am stupid by any means that is just the way I learn. SO maybe you can help me in that area and tell me exactly how you give her supplements and Tolerex and such.

A: In the beginning, I started out with just the Tolerex (would be the same as the pediatric vivonex), calcium and vitamin D, and a multivitamin.
1.I mixed only half a packet with only 2 oz of water.
2.I then filled the bottle up to eight oz of juicy juice.
3.I crush her multivitamin and vitamin D pill into powder.
4. I add calcium (which is liquid), Vitamin D, and multivitamin to her eight oz bottle and shook real well. (Now I add 2 tablespoons of Jell-O to this as well. This is what made Crystal finally stop fighting me over taking her aminos).
5.I then divide that amount evenly between two bottles.
6.And fill both bottles up to 9 oz and shake bottles well again.

Has it been explained to you about protein storage and how SMA children can't take too much at one time or it will be toxic?
Since all the SMA children have their own tolerance level no one could tell me how much to give her. So I felt I started at the very bottom at a level I felt safe wouldn't be too much for her. I also decided it would be best since she couldn't store any of the amino acids for later use, to only give her what she would use within a couple of hours. So I divided the total of both bottles (18 oz) by six doses a day served evenly every three hours. 6:30 am, 9:30 am, 12:30 pm, 3:30 pm, 6:30 pm, and 9:30 pm.

Now again, no doctor or no dietician is going to be able to tell you exactly what you child needs, you are going to have to experiment with it. Keep his formula the same for an entire month of him showing consistency with it. (as in no problems) When you feel comfortable that he tolerates the amounts of amino's, then up the level some like maybe to 3/4 a packet. But no matter what supplement you read about and believe he needs and decide to add to his formula, only add one change per month, so if he does experience problems you will know exactly ingredient has caused this and you can either adjust the dosage or take him off. Whichever you feel is best for him.

Now, almost a year later: (Please do not use this remedy to start out with)
I mix these items and their amounts the same way:
1. 1 1/4 packet of Tolerex
2. 10 oz of juicy juice (makes two 7 oz bottles)
3. 225 mg of glutamine
4. 1 amino 75 capsule
5. 1/10 of teaspoon of creatine
6. 1/2 multivitamin
7. 1/2 vitamin D capsule
8. 4 juice+ capsules
9. 3 mg of calcium
10. 2 tablespoons of

Now I still serve this divided up throughout her awake hours, but I don't feel it necessary to give as often as every 3 hours. So I divide the 14 hours (both bottles total) into 4 servings through the day giving 3 1/2 oz each time at 8:30 am, 12:30 pm, 4:30 pm, and 8:30 pm. With her bedtime dosage I add 1 tablespoon of cornstarch to slow the digestion to avoid ketosis (break down of muscle for energy).

Q: Water therapy: We are going to be doing water therapy as I heard it is excellent for SMA kids.

A: Water therapy is a must. Crystal moves like a normal child in the water. Have you been to her "aqua therapy" page on her website. She actually has a horse's troft at home that she gets in everyday. She can walk all by herself in there. She has all kinds of stunts she pulls in there. She is getting real close to be able to back float. The key is to have the water level up to about an inch below their shoulders. This relieves them of enough weight that the muscles they have are enough to let them be normal. When I first put Crystal in the pool, it was like teaching a 9 month old baby how to walk. I even had to teach her that she needed to put her foot down because it kept wanting to float to the top.


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