Starter Tips

Kristin Webb Mom to Cole Type 1-When you first hear the words Spinal Muscular Atrophy, your whole world changes in a minute. At first all you can do is focus on the grave statistics: #1 genetic killer of children under 2, 80% never make it to age 1, no treatment, no cure. Then some sense of clarity sets in. Then you start looking for more answers beyond the statistics. If you have made it here, you are looking for those answers. As a new family submerged in the world of SMA, let me share some things we’ve learned along the way.

First you will learn that everyone has an opinion, your doctors, your family, your friends, and even us here at the SMA support group all have different views on what you can or should do with your child. There are many different approaches to treatment of SMA, ranging from very aggressive to very passive. There are vitamin supplements, machines, special diets, surgeries etc. That being said, listen to your heart. It will tell you what to do. Gather all the information and opinions out there and then do what your heart tells you. God gave YOU this child and no one else. What I may do for my child may be completely different from what you want for yours. Neither choice is wrong, in fact, both are absolutely right for each family. It is up to only you to decide.

Be open to suggestions, from doctors and especially from families who have been there. They have a lot of experience. As a new family, you will feel you have been thrown in the ocean without life preserver. That’s what your support team is for.

Whatever you decide for your child is the right decision. Stay strong for you child and for yourself. There will be many good days, many bad days and some days that fall in between. Cherish each day, each smile and keep faith. Someday there will be a cure.

Brenda Brames-You are going to have to push everyone around you to see that your child gets what he or she need. Whatever it takes, you need to be the one that knows and understands more than the doctors and therapists about your child and SMA. Sometimes they hide behind their high tech language, just to discourage us from adding more work to their already busy schedules... However, when you are educated and know what they are saying, then you can really see that they are just talking mumbo jumbo! I thought the world of Crystal's therapist until I got more involved and educated! Now, well like I said, I had to let them go. What I had to do is pretend that I was back in school and Crystal was my course elective. I had already flunked the class once, but I was bound and determined to pass this time and with an "A". Get you some notebooks, folders, filing cabinet with hanging folders...Whatever works best for you to stay organized. Create a folder for every topic concerning your child’s needs: diet, PT, OT, research, scoliosis, swallowing issues, E-mail responses, daily care, resources, testimonies (keep a log or journal on everything different that you do or try with your child), progress, sma parents, medical equipment, denial letters, ... create a folder for every category you feel is related to what you are learning, doing or have done with your child. Start with their therapists: ask for handouts on such things as range of motion, joint contractures, ... put this in the appropriate folder. Save everything thing you learn and put it in the appropriate folder. It doesn't matter how simple it is, this keeps you from being overwhelmed with new info and trying to remember things; you can forget about it while you are reading something new and always go back and read previous info... Until you actually physically practice this stuff for a while on a regular basis, you are going to forget things. So keep your records organized and easy for you to access. I literally have an office for Crystal's stuff. I have both hard copies of stuff and it saved to floppy diskettes.

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.

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 dietitian, you can teach and train them about SMA as well.

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 being safe rather than being 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.

Angie Burnett-We were told, like most here on this chat, that Ethan wouldn't make it to two, in fact, he wouldn't even make it much past 6 months (long story, but in a nut shell, he got sick, stupid doctors wouldn't treat him, told us to give up, etc., and they wouldn't do Dr. Bach's protocol. Ethan almost did die, but we found a dr. that was willing to follow Dr. Bach's stuff and we transferred him. Within 36 hours he turned around and has been doing great since). At 6 months he started the bi-pap, in/exsuffalator (cough machine), and got his g-tube. He started to lose his swallow at 6 months (but now I suspect he was struggling for a long time before that and we didn't know it). My best, best advice is to start things before you HAVE to and be prepared (like getting the machines-bi-pap, cough machine, etc. Getting comfortable with them, know what they do, etc.) Get the g-tube surgery done early while she is healthy. This will be probably the most difficult thing. The best person I can refer to for this is Amy Barnett (she had everything ready for Lily and
the transition was much smoother this way when she finally needed it). I also want to tell you to stay hopeful and have faith. Ethan was a very weak in the beginning. He could never hold his head up and never moved his legs at all. Now he actually can move his legs a little, his arms a little but still has no head movement (every child is different in this). Ethan is great though. He laughs, smiles, plays and shows us his love in his special ways. I have no regrets following the path we did and Ethan is one of the best things that has ever happened to us. I don't know if any of that helped, but I kind of wanted to give you a little history and know that we can relate to probably most of what you are going through right now.

Krystal (Ryan’s Grandma)- When you deal with doctors you need to basically threaten them with --- so you plan on a denying my child something that will help them. You give me negative information because of the sma so what do i have to lose from trying something that is working for half the sma population. So denying her and something happens i can take action for neglect on your part. Right? When you tell them this they get antsy? You have to be very assertive - if not they will walk all over you. They do not know everything - they only know what is in the book. They do not research they do not stay updated until a patient comes in to show them the way -- this is with all diseases.