Wednesday, March 2, 2011

Before you start a therapy

When we started our home based therapy program we did not know how it would exactly look like in all details. I also didn't know which challenging obstacles the Rett syndrome would bring us that we had to solve. There was nobody that ever did something like this before and that could help us with advice. We started with a Brain Traingroup led by Keith Pennock and later on with BIBIC. This is a classical NDT therapy program that I still consider as the best one for the Classical Rett syndrome. Before I explain why that is, I like first to summarize preparation steps that are necessary to be done before you start any intensive therapy program.

1. Such a home training program is impossible to do on your own. Therefore you need a big team of people around you. For example: we have two persons for each day (for 5 days a week). They work 3 hours each; on one to one basic. It should be enough but because I like so much to work with Dejana I added 3 hours extra to her daily program. This because 6 intensive hours of daily activity is the optimal need for fighting with all Rett syndrome challenges.

2. People integrated in your team can be students, sport amateurs, relatives, friends or neighbors. Of course you can pay them for their effort in your program, but you don't need to spend as much money as for the high educated professionals. And believe me this people are more motivated and enthusiastic than any professional I have ever met. They perform excellent. And professionals may be asked only for the consult and evaluation from time to time.

3. People that you will choose have to be highly motivated and able to stay in program at least one year. They should be: dedicated, responsible (to come on time), open-minded, flexible and able to take feedback on their performance. And the most important, they have to be aware of the FACT that the condition of Rett syndrome can only improve if you chose correct exercise. Déze zin snap ik niet helemáál.
· Only persons that pass that “psychological” test can become a respectable members of your team.
· Never take family members and friends that will do it for sentimental reasons and never be sentimental in decision to keep somebody that can not do the program in the correct way because it will work against all of you on the end.

4. Of course: the best solution for all of us should be a good special school where the girl can get daily amount of physical activity and movements or correct positioning. But as far as I know there is not ANY school like that in the country where I live. So we had to do it on our own at home. Special education is not yet ready to give that what is necessary for the girls with Rett syndrome. They are not qualified nor paid for this complex task and therefore all the work lies on parents.

5. If you can offer her a home therapy: intensive and individual, you have to choose one existing program and to learn it on your one. You will be the coach of your team. Therefore it is essential to stay in touch with the authors of that program and to discus all questions with them. We are very satisfied with the Neuro-developmental approach. I can recommend 4 of them:
Growing Mind

6. If you don't want to choose one international program, you can ask two/tree local professionals (speech-therapist, physiotherapist and occupational-therapist) to design a program for your daughter and to work on the program with your team. Consultations with professionals can be done once a month. It is cheaper and more effective that way.

7. Therapy for the girls with Rett has to be intensive and daily done otherwise it will not help. Rett syndrome is a very-very serious neurological dysfunction and working on it can be compared with training for the Olympic Games. People that train for a professional sport can NOT make it by 30 minutes a week. They have to train daily. The same: for the girls with Rett syndrome therapy of 30 minutes a week will mean NOTHING for her condition. Rett syndrome cannot be treated with a 30 min of physiotherapy, 30 min of swimming and 30 min of horseback riding each 7 days. That means 6 hours a month!!!!! It is completely useless and the choice is simple: full work or nothing.

8. If you choose for “nothing” your daughter does not have to be lost. She may not do the exercise BUT instead you can make sure she is in a good positioned at least 20 hours a day. It is the only way to safe her from skeletal deformities, bone operations and pain of the general spasticity. Positioning is not difficult to arrange and achieve in this technological time. All you need are good and flexible splints/braces that should be combined in the most effective way for her body. And you also need responsible people that will keep their eyes on her from time to time and correct her position if necessary. That is minimal intervention that each girl with Classical Rett syndrome should get.

9. It is important to have one separate room for her training program. The room has to be large enough for necessary equipment. Equipment that you will possible use is: big gym-ball, swing (to sit, lay or stand), gym-rings hanging on the sailing, walking systems special designed for her problems, stairs or blocks for challenging walking, balance beam, table and 2 long ‘seats’ behind each other.... etc. The most important is the floor: that has to be warm, large and easy to clean (not a carpet) because the most important exercise will be done on the ground in the laying or sitting position. The room has to be friendly decorated so that working in it will be pleasant for the therapists.
- In the same time it has to be as empty as possible with a large closet where you can storage equipment that you do not use at a time.

10. And the last and the most important: You have to believe in yourself, in the power of therapy and in the possibility of your daughter. You have also to realize that it will take time before you can see any result. We have to be extreme patient and persistent. It is not an easy effort. This program will not only encourage your child to change. It will change you and your life as well.

Whatever you decide I wish you a success.

Tuesday, March 1, 2011

Useful tips

On the European Conference on Rett Syndrome, held in October 2010 in EDINBURGH Dr. Sarojini Budden (Portland, Oregon) had some tips for parents and caregivers. She has worked with many Rett girls over many years. Her presentation provided the following tips:
- There has been increased identification of reflux, gallstones, and fractures as the reason for pain and discomfort in girls.
- If there is obvious pain around meal time, it may indicate reflux or gallstones. 11% of all girls had gallstones (between 8 and 22 years of age). Girls should have ultrasound scan for gallstones, but, even if this shows negative, parents should pursue a HIDA scan, which can evaluate whether the gallbladder is diseased. Alan Percy, Prof. of Paediatric Neurology at Alabama, USA, confirmed that this is essential, and has been required in a number of cases.
- Standing should be extended to at least 30 minutes to 1 hour daily – beneficial in the fight against scoliosis (together with calcium and vitamin D in the diet), excessive wind, constipation (together with fibre / vegetable diet)
- Sitting - methods of sitting should be explored that could be beneficial to the spine
- Physiotherapy is vital. Daily stretches should maintain the range of movements of the muscles and joints. Local physio should suggest types of stretches and for how long.
- There is incidence of leg length discrepancy, which should be checked, in case correction is required for standing or walking
- Girls have shown potential for improving skills, e.g. hand function
- Siblings reactions are very important
- PLEASE keep talking to the girls