The True Impact of Sodium Valproate

Ahead of the Back Bench Business Debate at Parliament on 19th October, we have been asked to collate parents stories of how taking Sodium Valproate in Pregnancy has impacted their children’s and their lives. Here is Caroline’s story : I … Continue reading 

Shoes To Fit Splints

One of the downfalls of having children with Cerebral Palsy, is finding adequate shoes that can fit over the splint. Both Lauren and Luke wear splints, Lauren 24 hours a day (with maybe 2 hours rest) and Luke wears day splints. We have been attending Orthotics clinics for years now with the kids and we have never been recommended of a place that actually sells shoes to go over splints……We have finally found somewhere. The day I found them I was over the moon, as any parent whose child has cerebral palsy will know how hard it is too find good supportive shoes to go over the splint.

Splints are commonly made out of plastics that can be heated and moulded directly onto the body. They can be produced quickly; however, the plastic is not very strong. As such, splints are usually recommended only when the device is needed for a short time, or when there is not much force placed on the material. So finding shoes that go over the splint , it was like winning the lottery

Laurens Splints and Trainers

Laurens Splints and Trainers

The other thing is that shoes that we do find and normally it is trainers, wear down very easily as sometimes when Lauren is on her frame she will get lazy and drag her legs, scrapping the shoe. We find ourself buying trainers every 6 weeks. So Im hoping these new shoes will last a bit longer.

It is a sport shoe, so its not like Lauren is finally in heels, but it’s a shoe that accommodates the splint. These shoes are called Tomcat Twisters. They are available in all sizes from a childs size 7 to adult size 5 ( in the UK). There is a winter and summer collection and they are available in 4 different colours…. We will be getting the pink :)
The company is called Tomcat and they don’t just do shoes they also do bikes, trikes, chairs and safeguards for beds.

Tomcat Twisters

Tomcat Twisters

Tomcat Website http://www.tomcatspecialneeds.co.uk/products

Cerebral Palsy and Splints

Cerebral palsy is Neurological condition that affect a child’s movement and coordination.
Neurological conditions affect the brain and nervous system.
Cerebral palsy is caused by damage to the brain, which normally occurs before, during or soon after birth. Known possible causes of cerebral palsy include:
• infection in early pregnancy
• a difficult or premature birth
• bleeding in the baby’s brain
• abnormal brain development in the baby

Symptoms of Cerebral Palsy

The symptoms of cerebral palsy vary greatly from child to child and depend on the type of cerebral palsy your child has . Some children have problems walking, while others are profoundly disabled and require lifelong care
Children with cerebral palsy often have other related conditions or problems, including:
• epilepsy
• learning difficulties
• incontinence
• visual impairment
• hearing impairment
• difficulties speaking or understanding other people speak
• delayed growth
• curved spine (scoliosis)
• drooling
How common is cerebral palsy?
It is estimated that 1 in every 400 children in the UK is affected by cerebral palsy. Approximately 1,800 babies are diagnosed with the condition each year.

Outlook

Cerebral palsy is not a progressive condition. This means it will not get worse as your child gets older. However, it can put a great deal of strain on the body, which can cause problems in later life.
There is no cure for cerebral palsy, but a range of treatments can help relieve symptoms and increase a child’s sense of independence and self-esteem. These include physiotherapy, occupational therapy and medication to relieve muscle stiffness and spasms.

What are Casts and Splints?

Casts, splints, and orthoses are all devices that are designed to maintain the body in a certain position. These devices are used to prevent or correct deformities and/or to help children overcome activity limitations, such as difficulties with standing and walking.
Casts are made of plaster or fiberglass, the same materials used to cast broken bones. They may be solid or removable (that is, cut in half down the length of the cast to allow removal for periods of time). Casts are usually applied for periods between 2 and 6 weeks. Sometimes they are removed and reapplied to increase the stretching effect on the muscles when improvement has been observed. This is referred to as serial casting.

Laurens Night Splints

Laurens Night Splints


Splints are commonly made out of plastics that can be heated and moulded directly onto the body. They can be produced quickly; however, the plastic is not very strong. As such, splints are usually recommended only when the device is needed for a short time, or when there is not much force placed on the material.
How do Casts and Splints Work?
Standing With Splints

Standing With Splints


Casts and splints work by applying forces to the body. By encompassing parts of the body and preventing movement, muscles and joints can be stretched. Many muscles cross two joints (for example, the calf muscles cross both the ankle and knee). To exert a stretching effect, either both joints must be held by the device or activities that stretch the joint that is not in the device should be encouraged. Casts and splints can also provide stability to help some children stand and walk. This is the biomechanical explanation for why these devices work.

The forces that casts and splints usually apply are reactive (that is, they prevent movement by resisting the forces generated by the body). However, muscles lengthen more efficiently in response to active forces. New developments in orthotic design are using compressed gas pistons or coiled springs to generate active forces.

Achievements of FACS Children

This post is dedicated to achievements children with FACS . We want to hear from parents whose children have FACS, and what they have achieved, it can be from the smallest achievement to the biggest or just showing how proud you are of your child. You can send the info to office.infactfacsa@yahoo.com or send via inbox on our FACSA Facebook page. They will be put on this page with pictures and you can nominate them at any time for anything …..even little things are achievemnets….. Lets see our FACS children

Monday 28th April

Joshua

Joshua

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Here we have a picture of Joshua last year at his foundation stage Graduation. On his Certificate of Achievement he has been awarded for always trying hard in his subjects, making improvements in literacy and for being a confident little boy.
All fabulous traits to have :)

Sunday 27th April

Congratulations to Ashley who has just signed a contract at Quirky Kids Agency for the Pauline Quirk Academy of Performing Arts.
This is Ashley pictured with his mum Christine 1149291_10201981239751828_41704661_o

Download and Watch Movie Happy Death Day (2017)

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What Is Glue Ear?

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Hearing problems are one of the symptoms of FACS and affects a lot of the children diagnosed with it.  It is also one of the most common childhood illnesses.

Most children under the age of 5 are the largest group affected, and for some children, particularly with FACS children can persist into their teenage years and beyond.  Glue ear can cause temporary Deafness, Delayed speech development in young children and affect the child’s behaviour and their educational progress.

Glue ear is often linked with ear infections and can sometimes go unnoticed.  It can affect a child’s behaviour with them becoming tired and frustrated, have lack of concentration, preferring to play alone and sometimes not responding when you talk to the child.  Unfortunately these signs can also be mistaken for stubbornness, the child being rude or “naughty”.  As a result the child may sometimes be labelled as “different”.

If a child’s hearing loss goes on for a while, like it did with Erin, it can affect their speech and even the way they write words down (which you can see hugely)

For ears to work the middle ear needs to be kept full of air.  A tube in the ear called the Eustachian Tube runs from the middle ear to the back of the throat and air travels through this.  If this tube becomes blocked, air cannot enter the middle ear and when this happens the middle ear will begin to produce fluid.  This is basically a liquid but over time will develop thickly.  As the fluid is blocking the ear it obviously becomes harder for sound to pass through the inner ear.  Quite sounds become harder to hear, outside world noises are muffled , try it yourself it’s like having 2 fingers stuck inside your ear.

Many things Can Contribute to Glue Ear 

  • Colds and flu
  • Fetal Anti Convulsant Syndrome  (FACS)
  • Children with Cleft Lip and Palate
  • Genetic Conditions
  • Downs Syndrome

The reason for this being that the Eustachian Tubes that the children have are smaller

There Are Many Ways to Treat Glue Ear

The most common therapy is for the child to have Grommets placed into their eardrum.  These are little plastic tubes and would be carried out as a short operation under general anaesthetic.  After the surgeon has drained away the fluid, grommets will be inserted to allow the air to circulate and to stop the build up of fluid.  Grommets normally stay in until the ear has healed and will push out themselves.  If when they have fell out and a build up appears again, it may be decided that Grommets have to be fitted again.  Sometimes also Adenoids can be affected.  Adenoids are glands within the ear and sometimes they can become swollen and infected too.  Treatment will be decided by your surgeon to treat these too.

Hearing aids are another way of treating Glue Ear.  They can be used for any level of deafness and come in a variety of colours and sizes and basically they amplify (make louder) the sounds going into the ear.  Hearing aids for children are free of charge on the NHS.

Does My Child Have Glue Ear?

If you suspect your child has hearing issues your first port of call is your GP.  The child’s ear will be examined by the GP there and then.  If an infection is present in the ear, a course of anti biotics will be given  and is they feel a further appointment is necessary you will be then referred to ENT (Ears Nose and Throat)

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