This is an Email response from Amy off the FSMA message boards!
Hi! I'm Amy. I'm a physical therapist assistant who has seen three separate children with SMA aged 9 months to 6 years. Please accept my apologies on behalf of physical therapy--we're supposed to make your life and your daughter's life better, not more frustrating. I'm not sure what kind of experience your daughter's therapist has, and I'm also not sure what the laws, etc are in IN, as I'm in Ohio; but let me share what experience I do have. It is generally true that Medicaid will only pay for one chair every 5 years, so depending on the severity of Crystal's SMA, it MAY be a good idea to go ahead with a power chair, even though she can use a manual. Do you have any other sort of funding (insurance, or any city/state/health department?) I know we have something called BCMH here, as well as CAFS funding, family resources through the county MRDD program, as well as other miscellaneous funding. What I'm thinking is for Medicaid to pay for the power chair (since they are much more expensive), and possibly one of the others to pay for a manual chair. If possible, get both--you never know when the power may go out!! Even some local charities (lion's clubs, kiwanis clubs, etc) are usually willing to do as much as they can. About the stander, if Medicaid has already paid for it, unfortunately you're stuck for 5 years. I agree with you, though that the Gazelle wasn't probably the best choice. Depending on how long you've had it, the equipment vendor may be able to return it, and order something else. About the gait trainer, Medicaid should pay for that if the PT does a good enough job justifying it. I completely agree that Crystal's legs should not be "put off" any longer, you want to keep as much strength as possible for as long as possible and this means work them NOW! How much weight bearing can Crystal do on her own? Does she have AFO's or even KAFO's? The three year old I'm seeing now is doing great with some custom designed lightweight KAFO's and a reverse walker. But I know he could not even bear weight through his legs with out the KAFO's. There's also devices called RGO's--reciprocal gait orthoses. This is something that goes from the waist down, and has a small mechanism on the back that assists the child in advancing the legs, when they don't have enough strength or control to do it. The other two children I've seen have had those, and had pretty good success with them. (Both type 2) One thing you should know, the PT is NOT in control of this process and you have EVERY right to question her decisions and go over her head if you don't agree. I have many families that deal directly with the durable medical equipment vendor. The vendor's usually have their own therapists to do the paperwork, and in my experience, have had good ideas and advice. You know Crystal better than anyone, and I'm sure you understand her needs and what she would benefit from better than someone who sees her much less frequently. Sorry this is so long and drawn out, but I wanted you to have the information. If you have any questions what so ever, PLEASE don't hesitate to ask me. I have developed a GREAT interest in SMA, and in doing everything I can to help each and every one I can. Take Care! Amy Hi again Brenda! I just read your second posting and wanted to share my comments about that one as well. . .hope you don't mind. I STRONGLY believe in aquatic therapy for these babies. I do home based therapy, and with one child, I worked with her in the bathtub for probably 30 minutes, and she was able to complete the rest of the "land" therapy much more effectively. That was when she was 2 1/2 to 3, I think. Two summers ago, I met her at the pool for therapy, and was DELIGHTED to see her WALKING in the pool completely by herself. There is no other place on earth that she can do that except the water. Aquatic therapy is VERY beneficial to SMA kids. I would definitely look into it if you can. I was wondering where your therapist was from. I get the feeling she is through some sort of an early intervention program? If Crystal has Medicaid, they should pay for therapy as well. All of my kids are home based, and Medicaid will pay for up to two visits per week (hour long.) They also pay for clinic based therapy, so you may want to look into a pediatric clinic or pediatric therapy company separate from the EI program. This one was much shorter! Look forward from hearing from you if you have any questions. Amy
I'm glad you played around with the stander adjustments--and I'm glad Crystal is getting good weight bearing with it now! And I'm ecstatic about the pool! I just love water! I just wanted to respond to the problems with the AFO's and the comment's about the RGO's.
I'm picturing pretty standard AFO's; a brace along the back of the calf, and under the foot, with velcro straps around the shin and ankle? Having that type of brace hinged would allow Crystal to actively pull her toes up, but would still prevent her from pointing her toes. If she has the strength to pull her toes up, dragging them on the ground while walking shouldn't be a problem. Unless of course her hip and knee strength isn't enough to support and lift her legs. How much weight bearing can she do with the AFO's on? What is her arm strength like to use a walker or something similar to support her?
About the RGO's--they are relatively heavy pieces of equipment, but Crystal won't be solely responsible for moving them. Her muscles contracting properly will activate the mechanism on the back of the RGO's, which moves the legs forward. With the little girl I saw who used them, it worked like this: She shifted her weight over to the left and the right leg swings forward with very little muscle action. Then she shifts to the right, and the left leg swings forward. (because of the mechanism.) The concern i have with the gait trainer is that it is VERY large and heavy, and there is no such mechanism--Crystal will have to move herself and the walker. So in order to walk in the gait trainer, she'll not only have to move her legs forward, but have enough strength to move the entire thing forward. I'd just be careful that she doesn't get too fatigued, or it might have the opposite effect than what we're hoping for.
I hope I'm helping and not making things any more confusing! I just want Crystal to be as independent as possible without getting more fatigued and losing more strength. I have read great things about the amino acid diet, but none of my kids have tried it. (For the two I don't see anymore, I know they weren't on it while I was their therapist.)
Take Care!
You're right, I don't have any of my own children with SMA. I'm a PTA who has treated 3 different children with SMA 2. Although they were all type 2, they are all sooo different. Since the first day that I met my first SMA angel, I knew that I had to be involved. I'm not sure what it is about SMA, but since that day, I've been a member of "Families", and I check the message boards almost daily. I have seen over 100 kids with just about as many disorders and diseases, but none touched me as much as SMA has. I can't do much to eradicate this disease, but I can lend my advice and knowledge and just maybe help someone's child experience life a little more independently. That is my sole goal. I donate money when I can, but God leads me to help in this other way as well.
You put Crystal in the stander 3 times a day for 45 minutes each time?? That is truly fantastic!! What dedication you must have to do this! I am truly impressed. And I'm delighted to hear that Crystal does so well in the gait trainer. I have a little girl I see with a different disorder (Rett's Syndrome) and we got her her own Rifton gait trainer, and she is now walking around the neighborhood with her mother and I once a week! She could only walk about 100 ft before. I love that piece of equipment--it's just fantastic, and I know Crystal will gain valuable strength and confidence working with it!
I'm not sure why your therapist didn't mention certain things. I have found that many many therapists don't do the research and leg work to find what works best for their patients. Some therapists find one piece of equipment that they like, and rarely stray from recommending it. I've learned that no piece of equipment works the same for any two children, and I have dedicated my self to researching a child's disease or disorder, and finding what will work best for THAT child. If I don't understand a disorder fully, I can't provide that child with the proper therapy. My goal for each child I work with is to achieve the absolute maximum level of independence and function that that child and her family can or wants to reach. That's all. . .simple as that.
It sounds like you guys have an excellent MDA clinic. If you guys are confident that the manual wheelchair is the way to go right now, then go for it! I know it will keep her arms stronger than a power wheelchair would. And I know that whatever is meant to be will always find a way--God's good at coming through in a rough spot. So if eventually, Crystal needs a power chair, she'll get one, and things will work out fine!
I may have some further questions for you about the amino acid diet. The little boy I see now with SMA 2 is very weak in his upper body. His legs are surprisingly strong! The family does not have any money, and WIC pays for most of the food that he eats. I don't know what is involved in the amino acid diet, and if WIC would pay for it, but I'd like to try it with him, if his parents are interested.
