Dec 10, 2009

What can you expect when your child is a cerebral palsy?

Photo source is from Burke & Eisner.

This is a long due entry. However, I must thank sue79 for asking me "why must meet with speech therapist". The answer is simple. One of the causes is cerebral palsy.

Nor paed, neither her neurologist, nor therapist has classified Syafiah's condition of cerebral palsy. Whether it is mild, or falls into which category. It's still unknown. But I red about it and asked Dr. RI (DEMC) and she confirmed that every hydrocephalic shall be a cerebral palsy patient too as hydrocephalus itself involving the brain. Anything to do with neurological damage, may leads to cerebral palsy. Anyway, Dr RI is a kid specialist. More towards family specialist.

You can also read my entry here to relate it with this entry.

I will jump here and there into an article (sources here). First:

What are the symptoms?

Everyone with cerebral palsy has problems with body movement and posture. But the physical problems are worse for some people than for others. Some people with cerebral palsy have only a slight limp or a hard time walking. Other people have little or no control over their arms and legs or other parts of the body, such as the mouth and tongue, which can cause problems with eating and speaking. People with severe forms of cerebral palsy are more likely to have other problems, such as seizures or mental retardation.

Babies with severe cerebral palsy often have problems with their posture. Their bodies may be either very floppy or very stiff. Birth defects, such as a spine that doesn't have the normal shape, a small jawbone, or a small head, sometimes occur along with cerebral palsy.

The brain injury or problem that causes cerebral palsy does not get worse over time. But new symptoms may appear, or symptoms may change or get worse as your child gets older. This is why some babies born with cerebral palsy do not show clear signs of it right away.

As far as we know and have been experiencing ourselves, this is where the following appointments with the clinics are needed:

(1) Occupational therapy (OT) - an occupational therapist specializes in improving the development of the small muscles of the body, such as the hands, feet, face, fingers and toes. These therapists also teach daily living skills such as dressing and eating, as well as making sure children are properly positioned in wheelchairs. They may teach your child better or easier ways to write, draw, cut with scissors, brush their teeth, dress, and feed themselves. Occupational therapists will also help your child find the right special equipment to make everyday jobs a little easier.

~ This appointment is on fortnightly basis (twice a month).

(2) Physical therapy - a physical therapist specializes in improving the development of the large muscles of the body, such as those in the legs, arms and abdomen (gross motor skills). Physical therapists help children with cerebral palsy learn better ways to move and balance. They may help children with cerebral palsy learn to walk, use a wheelchair, stand by themselves, or go up and down stairs safely. Physical therapists will also work on fun skills such as running, kicking and throwing, or learning to ride a bike. Physical therapy usually begins in the first few years of life, or soon after the diagnosis of cerebral palsy is made. These therapists use specific sets of exercises to work toward the prevention of musculoskeletal complications. An example of this is preventing the weakening or deterioration of muscles that can result from lack of use. Also, physical therapy will help avoid contractures, in which muscles become fixed in a rigid, abnormal position. Physical therapy will help prevent musculoskeletal problems, as well as helping your child perform common everyday activities.

(3) Speech & language therapy - a speech and language therapist helps develop better control of the jaw and mouth muscles, which can improve speech and language skills and eating abilities of children with cerebral palsy. They also help develop creative communication methods for those who can not speak. A speech and language therapist will work with your child on communication skills. This means talking, using sign language, or using a communication aid. Children who are able to talk may work with a speech therapist on making their speech clearer, or on building their language skills by learning new words, learning to speak in sentences, or improving their listening skills. Children who can not talk may learn sign language, or how to use special equipment such as a computer that actually talks for them.

She has previously been examined for both of her ears too. This is called audiology examination. The 1st two examinations showed that her left ear was unclear. Came the 3rd, she is clear for both sides.

~ This appointment would be assessed on per month basis.

(4) Neurology - to monitor from time to time whether the shunt is working well or not. To monitor any other symptoms occur. If the child may have a seizure symptom (most of cerebral palsy might experience this), they shall advise for EEG to determine the level of seizure and what treatment is suitable for that particular child.

~ This appointment is on 4 months basis.

(5) Pediatric - to co-ordinate with other departments, monitor the development of the kids. Usually, they will issue the referral letter to other clinics.

~ This appointment is on 2-3 months basis.

(6) Eye clinic - depending on which areas of the brain have been damaged, people with cerebral palsy may experience impairment of sight, hearing or speech. Like Syafiah's case, it is affected the eyes. The eyes are in good shape. However, previously she couldn't process the object, not sure whether the nerves/part of the brain. Thus, she couldn't focus. Now, this improves a lot. She could even smile when you're near and touch your face.

~ This appointment is on 6 months basis.

[Reference for point 1-3 can be sourced here].

I shall add on if there's more information on this. And I still owe you an entry about Sensory Processing Disorder.

The experience is indeed like a roller coaster ride but it is so valuable. And more valuable if we can share it with the world. So that, it will increase our awareness on this particular condition. Some might find it as a hard experience. However for us, it is such a bless that only some people will be chosen to feel it, to add more sense to our life, to see things from the different perspectives and to make us better human beings as everyone is a leader/khalifah in their own ways.

Hospital Sungai Buloh contact numbers for related departments:
General - 03 - 6145 4333
ENT counter (extension) - 1150
Speech Therapist (extension) - 1148 (Puan Anita)
OT counter (extension) - 5122/5123
Paed counter (extension) - 1138
Neuro counter (extension) - 1260


sue79 said...

owh.. camtu.. anak sy tak dirujuk pun kesana... tu yg sy tanya.. :)

sue79 said...

anak sy check telinga skali je pastu takde follow up lg sbb telinga dia xde masalah.. mata pun setakat ni ok,tp last appoiment ari tu sy tak pegi pun.. anak sy pegi terapi je 2 minggu skali, gerakerja belum pegi, dietician pun tak bnyak membantu la.. sy br jumpa paed 2 minggu lepas, setakat ni takde masalah cuma anak sy ni kurang berat badan je..

suealeen said...

Then kena tanya paed la. Kekadang dia orang ni pun tak ambil masa lama untuk terangkan sesuatu keadaan tu pada kita. Kita kena berinisiatif sendiri.

Sesetengah budak cerebral palsy ni nak telan makanan pun susah. Tu sebab penting jumpa speech therapy. Dan untuk sesetengah tinggal di NICU lama dan kena intubate memang ada masalah sket, especially untuk bercakap.

Dalam article tu tulis, 'The brain injury or problem that causes cerebral palsy does not get worse over time. But new symptoms may appear... as your child gets older'. Tu sebab baby begini perlukan monitor dari kita sebagai ibu bapa dan juga paed bagi pihak yang pakar sampai mereka dewasa.

KELLY910 said...

sis.. thanx 4 sharing the good info..

suealeen said...

Alhamdulillah. Moga kita sama² dapat manfaatnya.

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