Malaysian Rare Disorders Society (MRDS) & Incontinentia Pigmenti

We are planning to register Husna with Malaysian Rare Disorders Society (MRDS). Since in here there no specific support group for IP (Incontinentia Pigmenti). At least, we can get information from the seminars/activities organized by the society.

In summary, Husna was diagnosed having IP after 3-weeks of being born. She developed the symptoms (the skin problem) after 3rd day of her life. along the way, the diagnosis is done based on the physical symptoms on her hair, skins, nails, eyes and tooth. So far, other than being a hyperactive child and a seizure around 1 1/2 years ago, no mental disorder is seen. Thus, there is no special medical care is given, however, we need to monitor her milestones from time to time. We also have to bring her to her dermatologist paed/ophthalmologist at least once/twice a year.

Wish us luck & we're very thankful for the special gift given which I cherish every moment with it.

Below are previous entries which written a bit of her IP's story.

N-1 (Diagnosis)

N-2 (Skin problem faded-all 4 stages). More info of skin problem stages, refer here.

N-3 (Her milestones)

N-4 (Seen Dermatologist/Ophthalmologist)

N-5 (Single episode of seizure)

Epi 9-months-old my little heroin

Pic taken selepas Husna baik demam tapi masih batuk-batuk.

Sabtu lepas (15hb) Husna jumpe dgn Dr Mardziah (her paed dermatologist), kulit Husna dah takde la merah2 since 3m.o lagi tapi sekang memang tinggal parut2 la. Dr soh sapu pelembab kat kulit, jgn kasik kering sgt.

Then, Dr kate as pesakit IP nie memang kene closely monitor her milestone. Utk Husna yang dah masuk 9m.o, Dr categorised her as a bit delay ,but not so worry as long as her can catch-up. Husna masih belum boley merangkak lagi tapi nie aksi2 yg dibuatnye dlm within this week.

Husna kene nebulizer sbb batuk kahak nie. Suke pulak die ala-ala nak makan asap-asap tue.

Aksi belajar merangkak

Dalam pada nak belajar merangkak nie, tup-tup hari Khamis tengah hari, Hubby call kate Husna asyik b*r*k jer & stool pon cair jer. Keluar awal sket dr opis terus amik Husna kat umah pengasuh. Masa nie nampak mcm biase jer die. Then, esoknye kami terus bawak Husna jumpe paed kat An-Nur. Konpom Husna kene diarrheoa, dptlah obat-obatan utk dimkn. Kene kasik Husna bnyk liquid utk elak dehydrate. Stop kan juga solid food & bnykkan BF Husna, itu pesan Dr. Then, kene tukar formula kpd lactose free milk. Oleh sbb kerap sgt b*r*k (lebih 15 kali sehari ok!), sampaikan dah melecet! Part nie yg tak tahan tgk Husna menangis2 time cuci. Kene jugak cuci bersih2...sampaikan Husna akan start nangis even baru jer stripe off pampers die. Kalo lah bole transfer rasa sakit tue kat mak, 120% mak rela. Tapi nie la org kate pengalaman kehidupan yg perlu setiap org alami,so, Husna caiyo!caiyo, anak mak memang kuat!

Ringkasnye within this 2 weeks; bermula dgn demam+batuk2 plus kahak, diteruskan pula dgn selsema+diarrheoa = mak dgn jayanya UL lagik. Moga anak mak cepat sembuh okay.