New to our children’s page: We have a great range of Kids Safety Helmets. If your child is prone to having falls from unsteady gait or seizures and are looking for a helmet that takes the stigma out of having to wear a one, we have researched two companies that have fantastic designs from baby right through to teen designs. Just scroll down to find these companies and their great designs!

 

Welcome to our Children’s Page! We hope to make this an informative and fun page aimed just for you the Parent, Family Member or Carer and also for your child.

If you have a child that has been newly diagnosed with an Arachnoid Cyst and your child is having symptoms and is being treated or having surgery it can be an extremely worrying and stressful time. Trying to navigate all the medical terms used and all the words we have never heard of before can make it really challenging.

There are also many tests that need to be done and this may be frightening for your child and upsetting for you. If your child is only a newborn or very young and non verbal you could be worrying about how they are feeling or are they hurting somewhere and you are unable to tell where that pain is.

A school age child may have many days off school and fall behind and routines at home may become disrupted, also you may be feeling guilty because other children in the family are not receiving as much time and attention as you are giving your sick child.

If your child has brain or spinal surgery, recovering can vary in each patient, you may find your child will need quiet times away from a bright and noisy environment so as to not be overwhelmed in the first month or so, while everything is settling and healing from the surgery. They may appear very fatigued, or become easily emotional this is part of the recovery process so a rest period each day will be helpful. Also encouraging a sick child to eat can be a challenge.

We have been fortunate to be able to have a link to The Child Neurology Foundation and wish to thank them for welcoming us to use there resources here at: https://www.childneurologyfoundation.org/patient-organization-partnership-oportunities/

The Child Neurology Foundation offer a Family Support and Empowerment Program with peer support specialists available virtually to help parents walk the journey of living with a child with a neurogenic diagnosis. They have many other online resources as well eg: Peer Support, Transitioning from a child to an adult with a neurological disorder, Medikids comics designed to give information for children to understand.

We want to include some fun stuff too! so we hope some of our ideas are helpful and we welcome any ideas from you or your children. We very much welcome your child’s artwork and any stories they may contribute about life living with an Arachnoid Cyst or a family member who has one. Our aim is to make our children feel really good about themselves by sharing their experiences and finding support in other children’s stories of hospital or their everyday life and families with this condition.

We have included some recipes and although your child may be unwell, they may get some creative enjoyment out of helping to create their meal or a fun recipe. Even if they don’t eat it, don’t stress, its probably taken their mind off feeling unwell, even if it just for a fun memorable hour or so. Who knows maybe you could get them to come up with something creative themselves that they will eat, we’d love to see a photo and their recipe. You can post or email us with their creations!

 

Merry Christmas and Happy Holidays!

 

 

Grow a family member or yourself a healthy brain.

 

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How to make a Yummy Brain Cake!

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Arachnoid Cyst Awareness Loom Band Kits To Assemble.

If you would like to make one of these bracelets, the kit cost $20.00 this will include instructions and an engraving of your name and birth date or blood group on the disk provided with your bracelet and postage. You can email us for a kit.

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Comfy Caps Protective Head Wear for Children.

For those families that have been looking for suitable protective head designs for the safety of their child, we have found one a very talented mum who has taken it upon herself to design a soft and supportive cap that comes in fantastic prints and bright colours to help take the stigma out of your child needing to wear a protective cap. They come with easy buckle for parents but cannot be undone by your child. Leah Brundage of Comfy Caps now produces and provides many families with happy cute and kid friendly designs.

They come with two layer protection, uniform pressure upon impact and conform to each different head shape. They provide a custom fit with minimal movement and allow airflow and heat escape. They are made of medical grade urethane and are antimicrobial, latex and PVC free.

If you are wanting to purchase a comfy cap for your child and know of other families interested in one of these cute designs. she can bundle a few orders together to make shipping cheaper!

http://comfycaps.net

Dejay Medical supplies, stock Ribcap. their stylish designs are listed below.

https://dejay.com.au/product/all/ribcap-junior-baseball-cap-2

https://dejay.com.au/product/all/ribcap-kids-bieber-beanie

https://dejay.com.au/product/all/ribcap-kids-lenny-beanie

https://dejay.com.au/product/all/ribcap-hardy-navy-cap

 

 

Did you know? There are plants that look like Brains.

We here at HQ have discovered there are some succulents that look like brains! So we thought we would show you some of them.

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You can find where to purchase these succulents by looking up their names on google.

Above right is Mammillaria Elongata Cristata Cactus its called the Brain Cactus, the succulent on the left is called Echinobivia Cristata

 

We have some of our own handmade designs for children, made and road tested due to finding a need for items of comfort and familiarity while recovering from surgery or going into hospital.

One particular design is to help children to understand their brain and how it functions. This is a fun board game, it is handmade of bright colours and information to help children to understand the parts of their brain and which part may be affected by their diagnoses of an Arachnoid Cyst.

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The game is for two payers. Each player has a beanie and is given all their parts of the brain. Each player takes their turn to throw the dice. If the dice land on the board on a part of their brain there is explanation on that part of the brains function. They pace it on their beanie. The first player to finish the their brain wins. These are available in our online shop.

We have designed a crocheted pattern of our brains for this game for crafty mums or aunts or nana’s to create. Their is a downloadable pattern in our online resource page Support Literature and Information,

We have our support products for children displaying our logo to help to create awareness of our condition. These products are handmade and made in Australia and are designed to give support and comfort to our symptomatic children going into hospital and going through surgery and recovery.

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For those Australian Children these items will be provided free of charge along with other support needs and information for families and carers. if your child is going into hospital please email us and we will send one through for your child.

Unfortunately we can only offer this service to our Australian Patients, as we are only a minority compared to other countries and we do not have enough awareness of this condition and its ongoing symptoms when we are symptomatic in Australia. Compared to other countries we struggle to get a research trial going as there are just not enough of our patients compared to other neurological conditions. However these items are for sale in our on line shop. This will help us to create much needed funds to keep our Australian Support Group going.

It should be noted that we have sufferers of this condition all over the globe and their are facebook sites that are evident of all our patients also from other countries looking for ongoing support and care. The administrators of these sites are very helpfull with sharing their knowledge and information from their own experiences and welcome the journeys of others. With that in mind we welcome and support patients, family members or carer ‘s to our site and are happy to share our information and model of our support to other countries. So if you are interested in creating more support and awareness in your country and want to create a model to support patients in your country we are very happy to share.

If your family would like to show support and awareness of Condition, we have basic cotton tees available with our logo in sizes baby to adult, available in our online shop.

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Children’s Medication Charts

We noted many parents were having difficulties coming up with a good organizer for their child’s medication. With this in mind I set to work designing a bright suitable medication chart to help parents keep track of their child’s medication and help older children manage their medication throughout the day.

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These bright charts can be personalised with your child’s name and a choice of four different characters on their containers. They have smaller containers to carry your child’s required tablets for the morning noon and night dose. The lid holds firmly to prevent spillage and they are held firmly to the chart by velcro dots. The required tablet container can be removed for the day and put into the larger square container ready for an outing such as school, the babysitter or an excursion ect. There is also a whiteboard marker for reminder notes on the chart such as new scrips needed and a replaceable sticky note pad for notes to go in the tablet box for a teacher, carer or family member.

The chart has magnets on the back to hold it firmly in place on the refrigerator or holes to hang up high away from younger family members. By using the chart and filling it once a week it helps you and your child to keep track of their required daily medication.

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