Recently I had a doctor suggest that I would probably prefer to attend the closest specialist for BJ. I explained to him that we are used to travelling for therapy, school or the specialist who is considered to be ‘the best’ for BJ or AJ. We have always thought it was worthwhile going that extra mile, if at all possible. Before BJ went to school we attended a Conductive Education program twice a week which was about 50 minutes from home. Although not a big distance to travel, it was a commitment and it was just a part of our greater therapy program. At the time BJ was our only child which made it easier to focus on his needs and it definitely proved very worthwhile. It has always been about giving him the best possible chance to reach his potential.
We have been lucky to have great therapy options in Sydney so we haven’t travelled interstate or overseas for therapy but I was curious to know about other families experiences. Our generous facebook community once again have shared their stories which I have collated into this blog post.
Sandy shares her experience travelling to Hungary for Conductive Education – “My son and I, then 6 went to Hungary to the Conductive Education Institute for 3 months in 2001. Another family came with us. The trip was looong- 36 hours each way as we kept getting stuck in Zurich but relatively straightforward getting to our destination. We chose to stay at the hostel that the Institute had- more expensive than finding our own property but we had transport provided, English TV- before the days of YOutube- and mixed with other families from all over the world, which was a lot of fun. We lived in Buda, which doesn’t have a lot of English speakers, but that was half the fun. Bringing home a jar of tahini, only to discover that it was goose fat was one of the many funny moments we had. The country itself wasn’t very wheelchair accessible- imagine lifting a wheelchair above your head to get it onto a train- but the boys were only little and we managed. The therapy at the Institute was 5 days a week. We could choose from half day and full day. My son started at full but we changed to half days and had a private conductor in our rooms for each afternoon. I honestly can’t remember how much it cost but it must have been over $10 000 for everything. There were lots of English people in Josh’s class. While there was an Institute in England, apparently it was more cost effective to go to Hungary. Not sure whether this is still the case as this all predates Hungary being part of the EU.
Was it worth it? The intensive therapy made a difference to my son- some people couldn’t see the difference but they didn’t know what to look for. Those who had done Conductive Ed in Australia could see the difference though. It was a great experience for all of us and I don’t regret going at all.”
ANOTHER VIEW OF CONDUCTIVE EDUCATION
Thanks to Melanie for sharing her experience travelling for Conductive Education – “Since Fletcher was 2, we have been travelling from the Wide Bay Area to Brisbane (about 4 hours driving) every fortnight for Conductive Education with a lady from Hungary who did her CE degree in Hungary but has lived in Brisbane for many, many years now. My 8 year old son does 6-8 hours with her over two days every second week, and often come down to Brisbane on the school holidays for intensive programs. She also travels to Woodgate and Hervey Bay to holiday with her family and sees him while she is there. She is wonderful, and it is by far and away the best thing we’ve ever done with Fletcher. No other therapies we’ve tried are as intensive, and we’ve always had trouble getting Fletcher to comply when we try to do his exercises with him. There are no miracles, just slow forward and backward progress, but we definitely notice him getting tighter and less mobile when we don’t go for a while. Fletcher misses a lot of school as a result of this travelling and therapy, but he seems to keep up and we feel it’s been worth it up until now. I’m on the hunt to find some therapies to supplement the Conductive Education, in the hope that we can taper it down to 2 days every three weeks or month. We feel he’s starting to miss too much school, and to be honest, travelling an average of up to 1000km a week is pretty draining physically and financially. Of course it has all been worth it, and we would definitely recommend it to others.”
Thanks to Lenice for sharing her experience with taking her son to Conductive Education – “We travelled from Kiama on the south coast of NSW to Adelaide in June to do Conductive Education Therapy with Future Footprints. We did a three hour a day, four day a week program for four weeks. It was tough on our son at the start, he was very tired, but by the end we noticed a huge improvement in his stamina. He is three and has level 4/5 spastic dystonic quad cp. This is a recap of our time there from his blog” (it is a good read)
HYPERBARIC OXYGEN THERAPY
Thanks to Anne for sharing her experience with hyperbaric oxygen therapy. – “Here are some pictures of me and Arielle in 2010, for our first time in the hyperbaric chamber. Unfortunately, this clinic closed in 2012, but there is an other one in my area (http://www.centrehyperbare.com/en-faq.php); their site web contains interesting information. For my daughter, we saw some small improvements; nothing spectacular, but enough to influence significantly our life (better vision, improved concentration, less spasticity…). We had the chance to have it 20 minutes from home. We did 120 hours of therapy. Some kids we met there had many positive changes, some little or no, we were in the middle of these two extremes! Many children with us in the hyperbaric chamber travelled a lot to come (some were from France). There Is no danger with HBOT, but it’s not a miracle, and it is possible that it does noting significant for some children.”
Thanks to Lisa for sharing photos and information about her experience with Dolpin therapy – “I’m from the UK and took Joshua 3 years ago to Island Dolphin care. He gained so much and we worked on focusing and concentration, well he improved so much and we hope to return 2016 for some more therapy !!!”
AND ANOTHER VIEW ON DOLPHIN THERAPY
Thank you Jessie for sharing your experience – “We have traveled out of US to receive dolphin therapy for our 4 year old daughter 2 years in a row- through the upledger institute . We highly recommend this program for several reasons. First and foremost they have integrative therapy, therapy ratio, family incorporation is far Superior to any US program. The therapy has been moved from US to freeport Bahamas due to US law prohibiting interaction with free to go dolphins. All US programs only used caged/trapped dolphins. All daughter has several serious medical issues and I did not and will not just leave her with out a skilled nurse trained in her care or her dad and all the other programs require you to leave child and not participate. UI program is a wonderful integration for families and the patient/client typically enjoy and needs this! As for the benefits it is so many to list… we just returned home nearly a month ago and I have not had time write up our experience from this year to see a brief story from last years trip go to ilagroup.org. From what I understand UI is starting a program in Turkey.”
Thanks to Julie for sharing her experience with Therasuit therapy (picture above is representative and taken from google images) Julie says, “My son has been to intensive therapy since he was three and he is currently 12 years old. Intensive is usually a 3-4 weeks program between 3-4 hours daily, 5 days a week. They work on every muscle and they have a special cage to do all their exercises and also a special suit that make their muscle work harder. My friends’ son who first started intensive suit therapy had amazing result. From not being able to walk at all to walking few steps independently. Of course everybody is different. My son has come a long way and of course his result are not as great as some of the people I know because of his seizure disorder. But after doing stem cell, my sons motor has become much more stable and the results for intensive therapy was much better that in the past. You can also check out “Angel Sosa” facebook. His page is open for people to see and they are currently doing intensive therapy for the second time this year. The mom has been updating the page on all her son progress. This child is doing great!!!”
ANOTHER VIEW ON THERASUIT THERAPY
Ana also shares her experience with therasuit therapy, – “My son has done 7 intensive therasuit treatments ….for the first one we travelled to Michigan and did it with the physio who invented it all …our son is currently doing his 8th intensive right now …he’s gained strength , better alignment, better trunk and head control …we are focusing on training him on his gait trainer and his tricycle so that he can be more autonomous ”
Mandy shares a little about her daughter’s therapy – “We have taken our daughter twice from the Isle of Wight south uk to St. Louis in America for operations ( selective dorsal rhizotomy ) and treatment and are just about to leave for our 3rd trip in 4 weeks she has cerebral palsy we also spent 2 years travelling to Oxford and back for 3 weeks of therapy at a time very 6 -10 weeks as well as going to Scotland, and London all to get her to walk after being told she never would”
TRAVELLING FOR MEDICAL TREATMENT
Thanks to Nicola for sharing information about why she travels to another state for treatment – “I have to travel for medical appointments very frequently unfortunately. The reason is that I live in Canberra. Whilst there are more medical services here than smaller towns and more remote areas we are still a very small city and considered rural by most tests. It is fine if you have an illness or condition that is quite basic, but I do not. My illnesses are not actually rare, but I do have a rare form of one of them. Very few doctors and specialists are aware about my illnesses, and even fewer understand them or know how to treat them. I tried going to specialists in Canberra and was simply misdiagnosed, told I was lying or told that there is nothing they can do. Since there is no one in Canberra who understands my illnesses and knows how to treat them I have been forced to travel approximately four hours interstate several times a year. I go to Sydney because it is the closest place where there are specialists who know about my condition. There are better treatments available further afield, like in Melbourne, but it is too far for me to go. Long travel is very hard and painful for me, and I am on a disability pension with very little money to spare.Another reason I have to travel interstate, besides for consultation and disease management is for some of my treatments. One of my procedures in particular that I have approximately twice a year is not offered by anyone in Canberra.
It is very costly to travel interstate for treatment. My illnesses are sadly poorly understood and there is no one available for me in the public sector, so I have to go privately. The travel costs, such as petrol and tolls, are also quite high. We have to fill the tank of the car before leaving Canberra, and fill it again on our way back. Accommodation costs are a big problem. Since we can’t afford to pay for accommodation we can only go to Sydney where we have relatives, but as the one we stay with is over 90 now we have to look at the future and wonder what we will do when we can no longer stay with her. Additional costs are from my husband or parents having to take work off to take me interstate. I can’t drive myself. Even if I had a modified car I could only drive a very short distance. We can get a medical certificate to apply for sick leave as a carer, but the sick leave runs out very quickly.
We don’t have children at the moment but I know that would be a big problem in the future. When I need to go to medical appointments they would have to come too unless we can find someone kind enough to take care of them while we are away; meaning they would miss school, increasing the cost and potentially making them feel unhappy that they are forced to travel for hours for medical appointments not even for them.
In the end it might not seem from what I wrote that it is worth it, but I can tell you it definitely is. Whilst my diseases can’t be cured, or even minimised significantly, they can be minimised a little and some problems can be addressed to make everyday life a little easier. When you are sick and disabled even the smallest difference means a lot. I know that it would be worth it for our future children, and my husband. It hurts them to see me suffering, and hurts them when I can’t do something with them because of the illnesses. Taking me interstate to manage at least some of the problems helps my husband feel less helpless. It may cost a lot of money even when we have little, but we survive, and just being able to do little things like go to the toilet without needing so much assistance is priceless.”
A big thank you to our generous facebook community for sharing your experiences. Travelling for therapy or treatment will not be necessary, or even beneficial, for all but I have found it interesting to hear more about it. If you liked this blog please consider subscribing to our blogs via email (head to the top right of the page to subscribe) and there are always interesting discussions happening on our facebook page so why not head over and join in the fun.
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