Feedback from MyHealth Portal: Pakar Perunding Pediatrik, HKL on Kawasaki Disease

 Assalamualaikum,

Setelah terbaca di forum OHUB ttg seorang lagi kanak2 mengalami Kawasaki Disease (KD), sy terpanggil utk continue entry sy yg lepas di sini:
http://mawihasni.blogspot.com/2013/03/my-request-to-moh-kawasaki-disease-kd.html

Actually, sy dah terima maklum balas dari MyHealth Portal pada 28/03/2013. Sy hampir terlupa utk post kembali maklumbalas ini yg dijawab oleh Dr Hung Liang Choo, Pakar Perunding Pediatrik & Pediatrik Cardiology, Jabatan Pediatrik, Hospital Kuala Lumpur.
Terima Kasih Dr Hung Liang Choo & pihak MoH kerana menjawab email sy.

Tujuan sy memaparkan maklum balas ini adalah untuk menyedarkan parents ttg bahayanya KD ini.

Daripada maklumbalas ini, sy rasa sedikit kesal, as from the 1st sentence...they said "We do not know the incidence or prevalence of Kawasaki Disease in Malaysia"...

Anyway, sy juga masih ada beberapa pertanyaan especially on Kawasaki web-based registry yg ditubuhkan oleh pihak MoH. 

& Pihak MoH juga menggalakkan kita menubuhkan KD Support Group..well, ada sesapa volunteer! angkat tangan ya!! 

MAKLUMBALAS


1. The statistics of Kawasaki Disease

We do not know the incidence or prevalence of Kawasaki Disease in Malaysia. In Japan, the incidence is about 200 per 100,000 children under 5, incresing over the years. Nearer home, in Singapore or Taiwan, the incidence is about 60 to 70 per 100, 000 children under 5.

Ministy of Health (MoH) has set up a web-based Kawasaki Disease registry in 2010. Paediatricians from 37 MoH hospitals, 8 private hospitals and 3 university hospitals were invited as users. In 2010, 143 cases were reported from 17 MoH hospitals and 1 private hospitals, and 140 cases in 2011.

Based on statistics compiled by Health Informatics Center, MoH, the percentage of admissions in MoH Hospitals due to Kawasaki disease among children under 5 years from 2007 to 2011 ranged from 0.06% to 0.08% of the total admissions of children in this age group.

2. Support from the Ministry of Health for Kawasaki Disease

MoH hospitals treat all Kawasaki Disease with minimal charges, especially treatment with intravenous Immunoglubulin (IVIG) which is expensive, and serial follow up and ECHO examination.

One of the aims of the Kawasaki Disease registry is to assist patients on their long term follow up.

The Ministry is also trying to encourage parents to set up a Kawasaki Disease support group as one of the effort to increase awareness of Kawasaki Disease in the community and also to promote healthy life-style.


Past history of Kawasaki Disease is now recognised as one of the cardiovascular risk factors. As such, the number of patients with Kawasaki Disease is cumulative and as the years go by when these children grow up into adulthood.

Disediakan oleh:

Dr. Hung Liang Choo

Pakar Perunding Pediatrik & Pediatrik Cardiology

Jabatan Pediatrik, Hospital Kuala Lumpur

dan

Pusat Informatik Kesihatan

Bahagian Perancangan

Kementerian Kesihatan Malaysia

 

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My Request to MoH: Kawasaki Disease (KD) Statistics

 I juz come to know this informative website, siap ada MyHEALTH APS lg. Tp click2 cam tak response. So, sy terus email persoalan yg dh lama bersarang dlm fikiran sy. W/pun bb Zahin dah recover, sy selalu bimbang + trauma pun ada. Mmg perit bila ini berlaku pada bb Zahin sy..Smg bb Zahin akan terus sembuh yg tidak meninggalkan sebarang penyakit lain. Next check-up 30/4.

Anyway, Thank You MyHEALTH for replying my email. Am looking forward for ur informative replied ya!

Am really eager to know the Kawasaki Statistics in Malaysia. Our paed, Dr Normi said this KD (Kawasaki Disease) is rarely happens, but it’s common in Malaysia. Frm my treasures reading, this KD is still unreported illnesses. Am not sure if the MoH is classified them as part of Heart Disease or Respiratory Problem stat’s. For me, it is good to consider as reported illnesses in Health Facts Stat’s produced by MoH. If Hand Foot Mouth Disease stat’s is reported, why not KD? It is even worse, if ur child infected by KD. Sgt menakutkan! Usually KD can be detected after 5 days long pain of fever, smp naik rashes the whole body..bibir pun cracked & berdarah..& Sorry to say, some doctor's boleh wrongly prescribed as measles/chicken pox. The longer u wait…the more riskier wud be for artery/vessels diseases. Sgt kesian dan bersalah kat anak. As the root cause of KD is unknown, not even becoz of genetics..more towards environment..I want to see the stat’s of KD & want MoH to include KD as reported illnesses in Malaysia Health Facts every year. Some awareness programmes need to be organized as I wud seen that negara-negara membangun is more prone to KD.

Pls consider my suggestions, as KD is unusual and serious illnesses of young children. Again, sgt kesian kat anak! The disease also causes damage of the coronary arteries of untreated children and may increase the risk of atherosclerosis in early adulthood. That’s why AM CONCERNED. Most importantly, we will be able to use these data to help us predict which children with KD are at most risks for heart disease from their KD. My reading saying that, KD is more common in Japanese children and those of Asian descent, but it is found in all ethnic groups, affecting around 1 in 10,000 children. It is 10 to 20 times more common in Japanese and Japanese American children than in children of European descent. I do hope MoH can do some initiatives on this.

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Treatment Kawasaki dgn IVIG

Hati ibu mana yg sanggup melihat anak dlm kesakitan.

Sepanjang masa tgn bb zahin pegang baju ibu..
Xder lansung senyuman..kalo tak, zahin ni la bb yg paling happy go lucky..
Tgk kakak mandi pun boleh ketawa terkekek2

Kawasaki ni xsama dgn coxsackie.
Kawasaki boleh sebabkan complication yg serius especially kat jantung.

Coxsackie akan demam jgk, tumbuh ruam di tapak tgn & kaki.
Juz continue dgn ubat demam, insyaallah Coxsackie akn sembuh.

Kawasaki ni nak detect amik masa yg lama utk kuar segala tanda.

Bb zahin sampai 2 kali tukar antibiotik, result darah pun xtunjukkan something yg abnormal.

4 tanda kt bwh ni mmg symptom yg jadi pd bb zahin pada hari ke 5 demam:

Ruam seluruh badan, mcm peta bertompok2..ingatkan alegic antibiotik.

Mata yg sgt merah

Demam yg xturun2..br je mandi, xlap pun..bdn panas balik.

BCG bengkak

Bibir & lidah pink terang..bibir merekah..n berdarah..

Setengah budak, kaki, tgn akan bengkak..pusat pun.

Bdn akan sentiasa lenguh & sakit bila dipegang.

Sbb tu Bb zahin lansung xnak diletak & cranky setiap masa.

Dr Nomee terangkan penyakit ni sgt common utk bdk bwh 5 thn. Punca, smp sekarang masih xdiketahui.

Juz general cause due to body reaction kat salur darah. Bla lambat dirawat, menyebabkan salur drh

ke jantung yg lembut itu boleh pecah.

Hati sgt risau sbb kami xtau keadaan jantung BB Zahin.

Dr. perlu masukkan 5 botol ubat khas, IVIG. Awl2 Dr dh bgtau kos perubatan sgt mahal
Syukur kami masih bekerja..jika sebaliknya..pasti buntu.

IVIG ni untuk turunkan suhu & kurangkan risiko masalah hati. Kalo dlm ms 36jam xturun jgk suhunya,
mmg kena masukkan 2nd dose IVIG.

Sepanjang ubat dimasukkan..bb zahin masih lemah & xnak diletak. Tdo pun sekejap2je.

5 botol ubat ni complete dlm ms 13jam, dlm pkl 3 pagi baru selesai.

Sy sgt risau penerimaan bdn zahin dgn ubat ni.

Alhamdulillah, xnampak tanda2 bdn zahin alergic dgn ubt ni.

Teringat anak2 kat umah..kesian diorang kena tinggal..Dahla Thaqif masih demam lg.

Esok pg, hasben bgn awl, balik umah amik anak2.

Bb perlu wat Xray, ECG & ECHO..

Kesian, kecik sgt dh kena Xray..Ikutkan wkt ECG & ECHO doc akn bg ubt tido..tp tgk bb zahin

nampak tenang je..so kiter proceed je..

Lega, bb zahin xmcm semalam..wkt cek jantung dia diamje, xberkelip2 tgk Dr. Nomee.

Sy mmg risau result ECO ni..alhamdulillah, Dr gtau yg jantung & salur darah Bb Zahin normal.

Xder bengkak.Lega sangat...SYUKUR ALHAMDULILLAH

Mata masih lagi bengkak & merah..Kelopak mata dah lebam..

Ruam bdn dah kurang lps complete 5 botol IVIG..

Baru blh letak & Bb Zahin nampak cool balik..alhamdulillah

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Lepas Chicken Pox, Kawasaki pulak

Penghujung tahun 2012 yg penuh dugaan. Inilah Ujian ALLAH.

26/12, sy post status di fb ttg bcg yg bengkak kat bb zahin. Mostly comment, yg bcg tu ader infection. Tp kenapa lps 6bln br nak infection??

Suhu bb zahin masih tinggi 39.0c..lps mandi pun msh demam. Uzma & Thaqif pun demam panas.

Ptg, bdn zahin naik tompok2 merah..mcm peta..mata pun merah..kulit dh nampak urat..

Mlm tu tiga2 ank menangis dlm bilik Dr.khairul..lega staff sana sgt memahami, terpaksa potong que sumer org…yg badan bb zahin merah terbakar, uzma & aqif pulak lemah, suhu 39.6c..Lps sorang2 kn msk ubat montot. BB Zahin kn amik darah sbb dh 4hari demam. Result darah ok, cuma bacteria tinggi. Kesian tgk anak2 ibu…

Hati sy cam beku, tahan sebak..

27/12, bb zahin masih xok..dh bagi ibu profen pun xjalan jugak..mata semakin merah. Bibir pulak, merekah, berdarah.Mlm tu entah berapa kali nangis tgk zahin..lap air sentiasa..tp masih xturun. Hati sentiasa resah…Thaqif pun demam teruk..smp kena msk ubt montot..Kami xtdo sepanjang mlm.

28/12, dah siap nak p kerja dah..tapi hati resah. Planning hasben shj yg bwk zahin jmp paed..At last, sy decide EL lg..buat apa kerja, jika hati resah. Alhamdulillah, staff an-nur bagi kami direct jumpa Dr Arbaiyah terus… maaf perlu ptg que lagi.

Dr Ar, sekali tengok..i suspect ur baby has symptom of Kawasaki. Berderau darah, sy tau penyakit tu bahaya..sy rasa beku lagi..4 tanda sudah complete utk symptom Kawasaki. Syukur, Dr sgt2 menolong kami, lps contact Hospital Serdang…dr sana reject. Not all hospital hv the facilities to treat this disease. KPJ Kajang pun xboleh…wpun ubatnya ada..My bb need to go for ECG jantung. Finally, Dr Ar arranged kat KPJ Ampang Puteri.

Sy peluk bb zahin..berat dugaan ni..hanya ALLAH tempat kami bergantung harap.

Menangis xtau nak ke berapa kali dah..suami pesan..sabar,ibu..ini dugaan.

@KPJ AMPANG PUTERI

Sementara tggu Dr Nomee, pakar paed echologist..BB zahin kena masuk ubt montot. Then, masuk air..hati cam tersiat2, bila tgk bb yg baru 6 bulan kena cucuk kat tgn..bb zahin dah kenal org, sape yg pegang dia pasti dia akn menangis. Bibir dia sgt teruk..berdarah bila menangis, berdarah bila menyusu, berdarah bila bangun tidur.

Sy tau Bb zahin bb yg bersemangat kuat..masih menyusu seperti biasa wpun bibir pedih berdarah. Bila dipeluk, bb zahin rasa selamat…selesa..Tak mau diletak, sgt cranky..all the time tido ats bahu ibu.

TBC

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