Allergic - Urticaria

Kesian pulak kat blog Syafiah ni kan. Terbiar je tanpa kemaskini. Mak asyik update di FB, boleh share ilmu dengan cara yang lebih pantas, feedback dapat lebih cepat. Selain itu, projek masak, wedding (sempena cuti sekolah) dan gambar sama² mencanak naik. Menaip bukan lagi pilihan utama. Tapi dalam masa yang sama kesian kat kawan² *ade lagi ke yang baca blog ni? Hihi*

This is what happened to Syafiah on 17th June 2010 - allergic known as urticaria (Malay called it "sopak garam"):

My husband brought her to DEMC immediately on the same day. The pediatric has prescribed her hydrocortisone (external use) & chlorpheniramine (internal). Sempat bagi sekali je chlorpheniramine. Itupun 1.5ml. Alhamdulillah next day dah terus baik. Kalau tak, kesian... She kept scratching her face all over again. Dah la tu, muka pun dah jadi cam anak Cina gayanya.

Saya pernah merasa kena sopak garam ni seminggu. Serik... mandi kena dengan air suam. Sabun kena pakai Dettol. Tapi tanpa ubat la. Akhirnya baik sendiri, alhamdulillah. Kat mana yang kita garu, kita situlah yang akan bengkak. Azab! *belum azab di akhirat lagi, na'uzubillah.

Urticaria:

Urticaria (from the Latin urtica, nettle (whence It. ortica, Sp. ortiga, Pg. urtiga) urere, to burn)[1] (or hives) are a kind of skin rash notable for dark red, raised, itchy bumps. Hives are frequently caused by allergic reactions; however, there are many non-allergic causes. For example, most cases of hives lasting less than six weeks (acute urticaria) are the result of an allergic trigger. Chronic urticaria (hives lasting longer than six weeks) are rarely due to an allergy. The majority of patients with chronic hives have an unknown (idiopathic) cause. Perhaps as many as 30-40% of patients with chronic idiopathic urticaria will, in fact, have an autoimmune cause. Acute viral infection is another common cause of acute urticaria (viral exanthem). Less common causes of hives include friction, pressure, temperature extremes, exercise, and sunlight.

Wheals (raised areas surrounded by a red base) from urticaria can appear anywhere on the surface of the skin. Whether the trigger is allergic or non-allergic, there is a complex release of inflammatory mediators, including histamine from cutaneous mast cells, resulting in fluid leakage from superficial blood vessels. Wheals may be pinpoint in size, or several inches in diameter. Angioedema is a related condition (also from allergic and non-allergic causes), though fluid leakage is from much deeper blood vessels. Individual hives that are painful, last more than 24 hours, or leave a bruise as they heal are more likely to be a more serious condition called urticarial vasculitis. Hives caused by stroking the skin (often linear in appearance) are due to a benign condition called dermographism.

Chlorphenamine:

Chlorphenamine (chlorpheniramine), commonly marketed in the form of chlorphenamine maleate (Chlor-Trimeton, Piriton, Chlor-Tripolon, HISTA-12), is a first-generation alkylamine antihistamine used in the prevention of the symptoms of allergic conditions such as rhinitis and urticaria. Its sedative effects are relatively weak compared to other first-generation antihistamines. Chlorpheniramine is one of the most commonly used antihistamines in small-animal veterinary practice as well. Although not generally approved as an antidepressant or anti-anxiety medication, chlorpheniramine appears to have these properties as well (see below).

Sumber kesemuanya dari Wiki.

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

Hari Ahad di hospital..

Maaflah.. tak update semalam. Tak sempat. Lagi pun telefon karat ni buat hal. Asyik tak bagi hantar gambar ke PC. Sudahnya saya hantar sekitar 2 pagi selepas saya ada mood untuk membetulkan blog i.e. 'read more' seorang sahabat jadi bercelaru disebabkan kesilapan kod html. Kadangkala kod html ni boleh jadi celaru kerana salah duduk. Saya betulkan tak lama. Yang lama menunggu mood baik telefon bimbit saya untuk menghantar gambar. Aduh.. bercinta dibuatnya!

Saya tak ingat saya tidur pukul berapa. Suami saya pun tak dapat tidur penangan air kopi. Sudahnya kami berborak. Borak pun dah ala² meroyan, merapik tak sudah. Maklum sajalah dah pukul 3-4 pagi. Saya katakan padanya, "Nanti esok mengantuk". "Saya cuti bersalin," katanya sambil gelak². Tapi dalam dok meroyan tu, sempat pula ajar dia menggunakan Facebook.

Semalam kami ke Hospital Kuala Lumpur. Oh, Syafiah tak sakit. Cuma tergerak hati melawat sahabatnya semasa di NICU, Hospital Sg Buloh di sana. Sahabat Syafiah ni namanya Sridar Rao berpenyakit congenital hydrocephalus dan spina bifida:

Mama Sridar : "Sel otak Sridar dah tinggal sikit kata doktor"
Sridar : "Tak pe la, Mama. Tuhan itu berkuasa. Janji saya masih boleh senyum dan ketawa"


Entah apalah yang dibahasakan oleh 2 orang kanak² ni? Mungkin:
Syafiah : "Macam kenal je kawan sorang ni?"
Sridar : "Syafiah, tengok la kepala kita ni ada duit syiling 50 sen"

Untuk mengenali spina bifida:

Sumber gambar dari sini.

Pembedahan Sridar kali ini adalah untuk meletakkan ommaya shunt, mengeluarkan VP shunt sediaada dan melakukan prosedur ETV (ia melibatkan satu pembedahan di mana satu lubang kecil dihasilkan di dalam ventrikel otak untuk membolehkan aliran CSF yang bebas).

Contoh gambar ommaya shunt:

Sumber gambar dari sini.

Rupanya anak rakan sekerja suami pun ada di situ. Anaknya juga pesakit hydrocephalus. Bukan congenital. Dia dilahirkan normal, akan tetapi telah mendapat demam yang amat panas ketika ibunya masih berpantang. Pakar membuat pemeriksaan dan mendapati bahawa kuman tersebut telah menjangkiti bahagian otaknya.

Dia juga baru selesai dibuat pembedahan lagi pada 4 Julai 2009.

Selesai menziarah, kami mencari tempat untuk solat Zuhur dan juga makan:


Gambar budak 2 orang ni je. Gambar makan tak de. Kami makan di Kg Baru. Terserempak dengan rakan lama yang kini berkerja di Petronas bersama dengan girl dia dan kawan² dia yang lain. Kami terserempak juga dengan Sasha Elite.

Selesai makan, mencari tempat membeli-belah pula. Sasaran - Giant KD:

Dalam segala kebisingan tu che' mek ni boleh pula layan mata.

Sampai di rumah kira² jam 7.30 malam. Rehat sekejap. Cuba hantar gambar (tapi tak berjaya). Sehinggalah melarut-larut ke pukul 3-4 pagi. Sekarang ni mata masih kelat. Terasa sangat mengantuk sekali.







p.s. : Thanks Mr Hubby for being such an understanding person!

Have you ever seen HO?

We're so familiar with AFO - ankle foot orthosis/orthoses. But have you ever heard or looked at HO - hand orthosis/orthoses?

This is how it looks like:

Hers is light blue

The purpose to wear this HO is to straighten her left hand & fingers. Suka nau bagi bengkok dan genggam tangan. This HO could be adjusted and could be pulled out of her hand. She started to wear HO this morning after returning from her therapy. Her daddy told me the procedure. Sounds interesting, unfortunately, I've always missed new knowledges as I wasn't around.

Another mom to a hydrocephalic, SMS-ed me this morning, telling me that her son is hospitalized again due to the leakage at the distal end. I'm not sure how many revisions he had so far but I've met them several times when we're in and out of the HSB. There's one time they stayed in the ward for more than a month!

Her son is a spina bifida patient too. He always smiles like Ian, Jiey's sweetheart, especially when he meets Malays, nurses and doctors. Syafiah ni 'sombong' beno... nak senyum pun pilih² orang. Nak stay pun memilih jugak. Even with her own daddy. Kalau dengan orang yang dia tak kenal/nak, mesti merungut sepanjang dia ditinggalkan. Frankly, I'm waiting for the moment she'll laugh at me!

2 things will happen tomorrow...

First - Syafiah

Syafiah will have her eye exam tomorrow morning. Her appointment card stated 'cyclo ra'.

Syafiah has her 1st eye screening at NICU as she was born premature. At first, it was just an ROP screening but her result turned out to be Stage II, Zone III on which she didn't have to undergo any treatment as her eyes will regressive from time to time. They did. Her retinal vascular maturity is complete. Now the problem is she sometimes focus on object, sometimes not.

What is a cycloplegic eye exam?

Answer :
A complete eye exam by an eye doctor has many components. It generally begins with the doctor talking to you to get a full history, which includes finding out the reason for your visit, learning about your overall health, getting a list of the medications you are taking (both oral and drops) and discussing any previous eye conditions or surgeries.

Then, the doctor usually measures your visual acuity, followed by an examination of your pupils, visual fields and eye movements. For people who report difficulty with their vision, a refraction is performed. A refraction is a test to determine the strength of glasses needed to optimize one's vision.

If the patient is under 16, the doctor may then repeat the refraction using "cycloplegic" drops to temporarily paralyze the ciliary muscles used to focus the eyes. This procedure, called a cycloplegic refraction, can be an important tool in helping eye doctors obtain accurate vision readings in frightened or squirming children. The results of the cycloplegic refraction are compared with the results from the initial refraction to arrive at the lens prescription needed to correct the patient's vision.

Read more on Glossary of Eye Terminology and here.

In medicine, particularly optometry and ophthalmology, refraction (also known as refractometry) is a clinical test in which a phoropter may used by an optometrist to determine the eye's refractive error and the best corrective lenses to be prescribed. A series of test lenses in graded optical powers or focal lengths are presented to determine which provide the sharpest, clearest vision.

In Illinois, USA, the state law requires eye exams for children enrolling for the first time in Illinois schools went into effect on January 1, 2008.

Quoted from the site:

There are four critical periods in the growth of a child’s vision: (1) preterm, (2) perinatal or infantile period, (3) preschool years, and (4) elementary.

Preterm infants are at risk of developing retinopathy of prematurity (ROP) and pediatricians are aware of the guidelines for referral to an ophthalmologist for ROP screening. Preterm babies with ROP should be screened by an ophthalmologist at regular intervals until retinal vascular maturity is complete. Laser treatment should be instituted when indicated. It is not safe to assume that babies born full term will not develop eye problems such as cataract, glaucoma, strabismus, and anterior segment dysgenesis. These are the conditions that should be looked for when screening healthy infants.

Preschoolers are likewise not safe from developing eye problems because it is during this stage that conditions such as strabismus, high error of refractions, anisometropia, and amblyopia start to manifest. Amblyopia treatment should be instituted right away.

Lastly, children in grade school or elementary should be screened for refractive errors like hyperopia, myopia, astigmatism, or any combination of these. Children are not small adults; they cannot verbalize what they feel (or see) most of the time. Parents only notice the change in behavior or head posture when the child is already symptomatic.

Dr. Wexler recommends the following guidelines for suggested eye exam schedules for children:

* At 6 months
* At 3 years
* At 5 years or just prior to entering Kindergarten
* Then, every 2 years

Unfortunately, there's no such program in Malaysia. Syafiah is lucky as she was born premature, so that we could check her eyes frequently. I just hope that the result will be on our sides, even though it is mean that she will have to wear spectacles in future! (all my nieces and nephews do! Genetic? *sigh*)

Dilating drops tu pun ada effeknya.. baca sini. Hish.. mana la pakcik Jingga ni... pakcik Jingga kan eye resident! Mungkin pakcik Jingga tak tahu cerita Syafiah dah pindah sini kot!


Second - Mastura

Mastura will have her trip to National Zoo tomorrow morning too. This trip is scheduled by her kinder. She has to be in school as early as always i.e. 7.30am and only will be back around 3.00 pm. We need to arrange for her transportation to return home as the pakcik usually fetch her home around 11.30am. She's excited! Talking about it non-stop.

I remember my kinder trip to Taiping Zoo, sitting on the stone crocs at the lake garden. Main gelongsor.. I still have the photos. When we returned, there's something happened to our coaster. There was not any flame but the water tank exploded. Luckily I was sitting at the back. My friends who were sitting in front got blistered by hot water. Terus singgah di klinik kesihatan nearby. Tapi tulah orang dulu.. mana reti nak saman² sekolah ni. Semua selamat. Awis, one of my friends in the photos is now resting in peace. He died young, around 24 due to an accident in his work place.

I hope she'll remember the trip the way I do!

Lumbar Puncture (LP) vs Bone Marrow Transplantation (Pemindahan Sum² Tulang)

Posting ini asalnya dari blog saya yang lagi satu - Tangan Yang Menghayun Buaian. Entah bagaimana masa proses penyalinan blog pada bulan November lepas, saya terlepas pandang pada entry yang satu ini. Saya salin tempek sekali lagi di sini.

Ini cerita mendidik masyarakat bagi membezakan Lumbar Puncture (LP) dengan Bone Marrow Transplantation (Pemindahan Sum-Sum Tulang) (BMT). Saya tergerak hati untuk berbicara tentang hal ini apabila ada seorang forumer bertanya tentang LP di SU. LP juga dikenali sebagai spinal tap.

Prosedur Lumbar Puncture

Pembedahan Pemindahan Sum-Sum Tulang

Ketika Syafiah masih berada di HSB, banyak cerita ibu-ibu dan bayi-bayi kedengaran di bilik menunggu (kata Mastura - bilik 2). Ada satu ketika.. ada satu keluarga yang bayinya mengalami peningkatan suhu badan yang amat tinggi pada umur tak sampai seminggu. Bayi tu sawan kalau tak silap saya.

Cerita opahnya (gaya macam mak-mak datin) pada anak yang lain, malam tu keadaan sungguh kelam-kabut. Ibu pada si bayi terlalu panik sehinggakan dia sendiri tak sedarkan diri. Alhamdulillah opah si bayi pandai memandu kereta. Dia yang memandu terus ke sebuah pusat perubatan swasta. Namun, pusat perubatan tadi tidak mahu menerima pesakit mungkin disebabkan peralatan tidak mencukupi. Lalu referral letter diberikan kepada HSB.

Cucunya ditahan di NICU. Pakar iaitu Dr IH menyarankan agar bayi itu menjalani satu prosedur iaitu LP yang bertujuan untuk mengesan penyakit bayi itu kerana adalah amat jarang sekali kejadian tersebut berlaku kepada bayi yang baru lahir. Si ibu ragu-ragu tetapi akhirnya memberikan kebenaran. Menurutnya kalau dia tak benarkan nanti tak tahu pula apa penyakit anaknya. Dia serba-salah.

Sambil bercerita bab LP, anak-anaknya yang lain berkata kenapa diberikan kebenaran? Nanti bakal jadi lumpuh la dan sebagainya.

Mungkin keluarga ini pun sama seperti saya mula-mula dulu. Tidak dididik untuk membezakan LP dengan BMT. LP hanyalah merupakan satu prosedur untuk mengesan penyakit sedangkan BMT adalah salah satu rawatan untuk penyakit darah. Dalam prosedur LP, CSF (cecair putih jernih dihasilkan di otak) yang diambil untuk dibuat ujian, manakala untuk BMT, ujian darah diperlukan untuk mengesan penjenisan tisu. Ia juga melibatkan penderma dan penerima (pesakit).

Saya rasa ramai juga diluar sana masih keliru tentang kedua-dua term perubatan yang amat berbeza ini. Malah risikonya juga berlainan.

Cuba teliti apa yang dikatakan oleh Saifulislam di bawah:

KEPELIKAN MASYARAKAT

Sehingga kini, masyarakat masih lagi mengamalkan beberapa kepelikan yang menyusahkan. Misalnya, apabila berlaku kemalangan yang serius, masih menjadi kecenderungan majoriti masyarakat untuk membawa mangsa ke klinik, dan bukannya terus ke hospital. Manakala ramai pula pesakit yang selepas beberapa hari sukar membuang air besar, atau demam panas semalaman, datang ke jabatan kemalangan dan kecemasan sedangkan kes yang dirujuk bukan kemalangan dan langsung tidak mencemaskan.

Masih ramai lagi masyarakat kita yang percaya bahawa tindakan mengambil ‘air tulang belakang’ menandakan yang pesakit itu sudah terlalu teruk dan menunggu masa untuk mati. Maka biasalah kedengaran, saudara mara berpesan, bila masuk ke hospital jangan sekali-kali benarkan doktor mengambil air tulang belakang! Sedangkan ia hanyalah prosedur Lumbar Puncture yang sepatutnya tidak memberikan apa-apa kesan negatif kepada pesakit.

Malangnya, pertimbangan itu sukar untuk diperbetulkan.

Mengapa hal ini berlaku? Ia berkait rapat dengan pendidikan.

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Sebenarnya janganlah dipercayai kata-kata orang. Baca terlebih dahulu apa sahaja yang berkaitan dengan kesihatan & perubatan. Dengar nasihat daripada pakar. Orang-orang sekeliling kita mungkin akan 'meracun' kita dengan pelbagai perkara yang belum tentu benar. Jika kebaikan yang banyak mengatasi risiko yang sedikit, kenapa kita perlu menolaknya?

Contohnya x-ray... x-ray itu memberikan impak radiasi kepada pesakit tetapi sumbangannya adalah lebih besar dari risiko tersebut memandangkan melaluinya kita dapat mengetahui penyakit dalaman kita. Mana satu bakal dipilih? Sakit & izinkan diri untuk rawatan atau biarkan diri terus sakit?