Ailsa lives in WA and has five daughters aged between eight and 23. Ailsa’s 17 year old daughter Jasmin has been diagnosed with paradoxical vocal cord movement and left brain stem lesion causing dystonias. Jasmin’s condition can make it difficult for her to speak so she primarily communicates using Australian Sign Language. She has also struggled with asthma and severe allergies her whole life. Another of Ailsa’s daughters also lives with a congenital heart disorder.
Jasmin’s condition is a strain on Ailsa who is under constant emotional and time pressures bringing up five girls. However, Ailsa has found help through Livewire Parents. Jasmin is also a member of Livewire’s community for sick children and also finds support from peers in a similar situation to her. Livewire Parents is an online community where parents and carers of someone living with a serious illness, chronic health condition or disability can support and connect with one another.
1. What is the name of the condition your child has? How did you find out - in utero, at birth - later on?
The name of Jasmin’s disorder is Paradoxial Vocal Cord Movement, Blephrospasm and Dystonia caused by a soft brain stem lesion. Jasmin has had severe asthma and allergies since birth but was only diagnosed in 2008 after a severe flu sent her to hospital with suspected asthma. After a week of intensive asthma treatment and no improvement she was transferred to the Children’s Hospital where they put a camera down her throat and found her vocal cords spasming shut on inspiration, causing extreme difficulty breathing and making her unable to talk.
2. What kind of treatment is required for your child’s condition?
There is no treatment for Dystonia and after seeing 33 doctors and being told her condition is very rare and usually only in adults so there is little known about it her prognosis was unknown. We saw ear nose and throat doctors, neurologists, speech therapists, psychiatrists, psychologists, physios, 4 GPs and acupuncturists. She is on Baclofen for spasms and Ondansatron for vomiting both have minimal effect.
We finally stumbled across a neuroplastologist who properly diagnosed Jasmin after an hr and a half of testing and has been treating her with chiropractic work and brain exercises, like a personalised brain gym to try to strengthen and rewire her brain. This is working although very slowly. The biggest hurdle is that Jasmin has stomach spasms which make her vomit everyday and this has caused her to lose a lot of weight and strength. She is now very weak and tired and physically run down.
3. What impact does the condition and subsequent treatment have on your family? Has it is some way allowed them to perhaps grow in ways they may not have (good) or perhaps give up things as well?
Jasmin is 17 and the condition has had a huge impact on Jasmin physically, emotionally and socially. She is now so low in energy she is only out of bed for 3-4 hrs a day and needs a wheelchair to go out of the house as she faints from dehydration and exhaustion. She cannot attend school and finds home school too much as her eye sight has deteriorated so much reading is hard. The Blephrospasm causes her eye lids to spasm continuously often not shutting all the way, she needs eye drops as her eyes get dry and sore.
She had a huge group of friends and attended a local youth group for 5 years and all but 1 friend has drifted away as they are busy with school and uni. Jasmin can only see them for short periods on good days and most teenagers cannot be so flexible. Before this started she was very outgoing, gregarious child with so many friends we had to limit her parties to 40 kids. She was head girl at primary school after only attending that school for 1 year. If she does see her friends it often makes it harder for her as she then hears about all the things she cannot do.
I was working as a nurse and have had to go on indefinite leave as Jasmin needs care 24/7 with the fainting and vomiting. This coupled with the medical bills has meant tightening our belt. I am lucky I have 4 other children aged 24, 22, 20, and 9 all girls! My older children help with looking after Jasmin so I can go shopping and the younger one helps to keep things fun.
My husband works very long hours and is on call 24-7. This makes planning family time hard. We used to go out a lot to picnics, the beach, movies etc but to do this now we now have to wait and see what sort of day Jasmin is having and only go for 1 hr. If she goes to the shop in her wheelchair the movement makes her feel dizzy and nauseous so we have to limit the time, if we stay too long she will vomit and her next day will be worse. This makes it hard to get her out and stop the isolation.
I rarely go out with friends and most of the people I thought were friends have simply stopped talking to me as they are too busy with their own lives and if you say no often enough to coffee they just stop asking. You really do find out who your real friends are in a hurry! We were always a close family and enjoyed each other’s company so playing the wii, board games, and family movie nights were part of our routine but now they have become more precious and we make sure we do them often. My oldest daughter is married and she and her husband come over at least once a week for dinner and this really helps.
4. What are the repercussions on your day-to-day activities? / How has it made the regular things more difficult? ***Perhaps one or two examples using simple chores we all do which are way harder given the situation.
Jasmin has always been anaphylactic to dairy but since her illness she has also has to cut gluten out of her diet. Due to the constant vomiting I have to try to make sure everything she eats is as full of nutrition as possible which means I have to cook everything and add extra eggs etc. I have only found one dairy free meal replacement which has a strong vanilla flavour so there are limited things you can add it to.
Jasmin will vomit after food most times so eating is not her favourite activity. She tries to eat our evening meal as we always eat together and share our day, this means she is often up all night vomiting and is in extreme pain. I therefore try to keep the noise down in the morning so she can sleep while her sister is at school so I do the vacuuming in the afternoon. I cook small muffins or biscuits to entice Jasmin to eat, but her little sister Katie is hypoglycaemic with insulin resistance so she cannot eat the same sugar filled things so I have to cook a separate diet for her.
5. How have you handled the difficult task of raising a teenager, which is hard enough with a child in good health, let alone with the added pressure of health problems?
I am very lucky to have been blessed with daughters who have strong wills and gentle spirits. They all put their strong wills to fighting for Jasmin and not each other. Jasmin inspires me every day to be a better person, she never complains, always gets up and tries her best to have a good day no matter what pain she is in.
I told her a year ago I would take her illness for her if I could and she said no I have learnt so much about myself by not being able to talk. Before I did all the talking and now I have learnt to listen I have been able to see the wonderful people around me for who they are. It has helped me grow as a person. When you are so ill the small things don’t matter anymore and fighting with your sisters seems stupid. Jasmin saves all her fighting for fighting the disease.
I am very proud every day of all my kids, not all Mums can say that so I feel very blessed. I have let some things slide like I didn't let the kids colour their hair until they were 18 but if Jasmin wants to colour it to boost herself esteem and have a little fun I figure why not. My kids don’t drink much maybe 1 or 2 glasses a couple of times a year or go clubbing, they prefer to go to a nice restaurant or friends houses. This is great for me as I don’t have to worry as much when they are out. I always had boundaries and had to know where they were and with whom. I made sure they could have friends at home whenever they liked and made it as fun to be at home as possible. Now all the hard work has payed off as my kids love being at home and are lovely respectful adults.
6. What specific things have been the most difficult, that others may take for granted?
It has been heartbreaking to see Jasmin go from an outgoing girl with top marks at school wanting to do medicine and having every chance to make it to a frail, pale, tired and in pain child, dependent on me again. Hope is a hard thing to keep when there is no medical cure or hope of help. One doctor told me to take her home and love her as we can’t help and I doubt she will be here in 5 years time.
I had no idea this was to be my future I would have taken more pictures and videos of everything not just school assemblies and sport but everyday dinners and games and just sitting watching t.v. I wish I had kept a journal of all the little things she said and did as life is precious and short but we forget so much.
7. In what ways have you sought to overcome these difficulties?
I rang everywhere I could think of in Perth to find a support group but as Jasmin's condition is so rare she did not fit in with anyone. After a year of persistent trying I was put onto a support group run through the Children’s Hospital Princess Margaret Hospital called Kallparin, that is for anyone with chronic illness or disability. It is run for parents support so I still haven't found anyone for Jasmin in person but she gets great support through Livewire.
Through this group I recently went to a respite weekend where I have met other Mums and had a wonderful relaxing and uplifting time. The one thing that was in the package that Kallparin sent me that has really helped Jasmin and I was a pamphlet on Live Wire. This is an internet site for kids with disabilities or chronic illness and Jasmin was able to talk with other kids and play games even win prizes. She really enjoys it and has found some wonderful friends. They opened up a siblings’ site and then a parents’ site where I have found wonderful understanding and supportive parents. I make sure I eat well and try to find something every day to be thankful for. I find this helps me to focus on other things and keep perspective.
8. How has Livewire Parents helped you to better cope with the challenges you face?
Being able to post a journal on Livewire about anything allows you to say if you are having a bad day, good day or anything you like. I found that even though no one has the same disorder as Jasmin the struggles are very similar for example how to cook nutritious food or motivate a teenager to go out or do school work, being so tired from a night of vomiting you don’t think you can cope with anymore but have to push on. No one says" oh it will be ok" or "just pull yourself together", they have all been there and send hugs and prays, they know they can’t fix things but knowing someone is thinking of you and empathising has been a wonderful thing for me.
On my good days I can be there for others and it is a great way to share any medical information or just ideas for food! I have won prizes just for talking in my journal, it is a great boost to have a parcel arrive just for talking!! The live 24 hr chat is great and when no one is on I also enjoy playing games. LW has helped Jasmin feel less isolated and showed her there are others with worse illnesses than her. There are other girls her age with similar school and friendship issues and it really helps to be able to talk about it to someone who really gets it.
9. How has your child adjusted to the changes in their life?
Jasmin has adjusted with dignity and courage. She gets up every day and does as much school work as she can and eats dinner with the family. This is a very important part of our day where we laugh, talk about our day, and plans for the next day etc. Her sisters play a huge role in keeping this "normal" for her never commenting on her different food or when she disappears to vomit.
Every day is a struggle, she is in terrible pain 24/7 and this added to an inability to be able to sleep from muscle spasm, pain and vomiting for 2 years would give anyone an excuse to complain but she never does. She has unfortunately become very quiet as talking is very difficult, where before she was always bubbly and talkative and giggly. She has never given up hope and still wants to be a doctor one day.
10. In what ways have you been able to assist them in doing this?
I have never said to Jasmin I don’t think you can do medicine as I don’t know what the future holds and I think it is important for her to hold onto her dream. I also let her decide when to eat and sleep as she knows when she feels bad and it gives her a sense of control of her day. I always ask her what she wants to do whether it be the doctor or go shopping and try to be her advocate to help her achieve the best possible outcome. I have had to take her to hospital 3 times for dehydration when she didn't want to go and she ended up staying for a week but she realises I have the last say when it comes to her medical care.
We are a team fighting her disease not a mum telling a teenager what to do. I am lucky she is willing to try everything anyone has asked of her. Some days she is not up to her friends coming over and I have respected her wishes and had to tell them no. Most teenagers don’t understand as they have not been this sick. I think it is vital for her to know I am on her side no matter what.
11. Do you have any tricks that have helped you get through the added pressure?
The only trick I have found that helps me get through this is to be really honest with everyone around you .This helps as it allows everyone to be on the same page and they can help when you are having a bad day and rejoice with you on good days. The support group on Livewire and Kallparrin has helped me enormously to ease the loneliness and keep things in perspective. I have found I am able to look forward knowing I can do anything as other mums have been there done that and know I am not alone.
I found crying in the shower alone very therapeutic as I had been holding my grief of losing my daughter as she was in pain and being strong for everyone else for too long. I was able to let it out and refocus on the daughter I have now and rejoice in her. I have found writing a journal to be not only a good way to let go of your day but also a great way to see how far you have come when you look back. I try to do the things I hold important like dinner together and let go of the little things. I try to laugh as much as I can and even bought a puppy to keep me focused on the good, bring joy and keep me fit!
12. Can you provide any advice for other parents out there who may be experiencing similar difficult times?
I recommend reading as much as you can about your child’s illness and getting as many doctors opinions as it takes, if you are not happy with your doctor or their opinion get another one, another 10! You are fighting for your child not against doctors. It is vital that you and your doctor are on the same page and you have a caring one (yes they are out there) as this can be a long hard journey and you will need them on your side. Listen to your instincts they are right, there are so many stories of doctors misdiagnosing kids from lack of knowledge or caring.
Your child needs you at your best so get every bit of help you can and find ways to keep happy and connected to the outside world. If that means you use respite to get a break do it as we are only human and need recharging so we can be better parents. Most importantly listen to your child and never give up.
Cuddle more fight less, love every second you have with everyone you love like it could be your last.
Livewire Parents is an online community where parents and carers of someone living with a serious illness, chronic health condition or disability can support and connect with one another.