i draw, i design, i do music, i cook
i 'wife' for hezry.
i 'mom' for hidayat-
but never anything involving
math equations & numbers.
Hidayat’s Eczema Expedition
i don’t know. i can’t really find the right words to explain how blissful my life has been, and how grateful i am to have been given such a way of living. Allah has truly been kind. i can say that i’ve got illustration and graphic works coming my way (filling in the SAHM void), and i’ve got time to manage my kid the way i want to. i’m quite content with how things are going for my baby and i- our routines, how he’s growing well and already walking (finally!).
so now that he’s growing (alhamdulillah), it’s high time i focus on myself- searching for what i should be focusing on, as a fulltime career. please pray for me.
as for now, enjoy some photos of my beautiful butterball :’-)
ah- baby’s asleep. finally. after what seemed like a hectic playtime, the little boy’s finally resting. now it’s time to clean up, bathe, cook and do every work i’ve got left to finish up before he wakes up”
and then i’d reach for my laptop, open the browser and begin typing out online stores’ websites, where i’d finally end up clicking the button, “check out”.
i’m guilty of this- shopping for clothes as a way to release stress. it’s actually nothing wrong, though. i need clothes for shows, for interviews, for appearances and basically for anything that requires me to look appropriate. however- it’s the storage that’s an issue!
our house is packed with clothes. i even have to keep them over at my mom’s place. my husband’s got tonnes of clothes since his youthful days, and here i am, during mine, collecting clothes myself.
i’ve been purchasing clothes, and feeling so satisfied once its arrived at my doorstep. i’d happily open the packages up, and have images of when to wear them, and what to wear them with.
i guess it’s not entirely something i should feel guilty about. after all the mothering i’m doing, i do think i deserve some time being myself, pursuing my career and walking my specific style while i’m at it, no?
what about you, what do you guys think?
hidayat drags himself around everywhere nowadays. that’s practically all he does whenever we place him anywhere around the house. of course we try our best to refrain him from crawling on carpets (basically because of his skin condition). he loves being pulled up to sit and stand, with support. i would sometimes hang his arms over my hands at knee-length, and walk him around the house- step by step. he absolutely loves it. however, he absolutely detests sitting down. still unsure whether it’s because he still has issues trying to balance himself while he’s sitting up, or whether he’s just too curious and active that he always ends up toppling as he tries to reach out for a toy (or anything he could grasp).
recently he’s started having rough spots close to his mouth and nose area. i’ve been rather paranoid about it, afraid it might flare up and end up becoming another eczema case but part of me says it might just be a little rash from all his drooling.
till next time!
after what seemed like a whole decade, he’s finally progressed. a whole lot. i’m feeling extremely thankful, for the fact that he’s no longer scratching his face, rubbing his face onto our clothes, finding every opportunity to take a quick-scratch whenever our hands are off his, and fighting his way out of his swaddle.
so here’s a recap of how to manage your kid’s eczema:
progressively as they grow in age i guess it’s best to expose them to germs/activities that would strengthen their immunity, but if they’re babies like hidayat, then better to take all the preventive measures and only post risk when they’ve got a stronger immune system (it strengthens with age). if things are getting worst and preventive measures have been taken- yet the red insists it stays; head over to the hospital. some infected eczema needs treatment. antibiotics, antifungals and whatnot, which could only be determined & prescribed by medical professionals. from my experience though, take note, the dosage of steroid (if prescribed topically or orally) given, whether it’s too strong of a steroid level for your kid’s eczema. learn how to properly apply it (apply it thinly! AS THIN AS POSSIBLE!), and how to taper it down. i understand and was once told to abruptly stop the usage of steroid once the flare has calmed down, but that was exactly my mistake: abruptly discontinuing the use of steroid. read up about ‘tapering down steroids’ or even better, ‘tapering down (insert specific name of steroid medicine)’. learn. don’t be lazy to read. when i stopped using steroids on hidayat abruptly, the next time he flared up it was twice as bad as the previous flare-up. turns out his skin was addicted to the steroid, hence, steroid dependency, and the need to taper it down.
i guess that’s about it. i’m no medical advisor or professional, but i sure as hell went through a lot to understand what eczema basically is, and how to basically treat it. i hope my experience as a mother of an eczema kid would help other mothers (who may have stumbled upon this blog during their 3-4am eczema-cure-research) out there treat their kid’s eczema.
below are a list of local groups i’d suggest joining for you to get more information about eczema and how to deal with it:
i’ve got to thank all the doctors, mothers and sufferers in the above groups, for sharing all their knowledge and experiences in treating/overcoming eczema inside out. go check the groups out, be diligent enough to read their documents, and search for keywords like “QV” or “weepy eczema”, “0.9% saline solution” or “klinik dr noh”, if you need to understand anything you may have trouble understanding from articles, or even post up questions, if needed. everyone there are suffering from the same thing, so imagine how supportive they are and how resourceful they could be!
to top it all off, keep up the prayers & believe that in any way, God’s always watching & helping you through it ❤
as i’d mention previously, hidayat hasn’t fully healed from his eczema, basically because the boy won’t fully heal from it until his immunity strengthens.
i’ve been meaning to continue with my studies or start a full-time job, but i don’t seem to see any improvement in his eczema everytime i leave him to run my errands. don’t think i should start anything that’d take 12 hours of my time away from him while he desperately needs me in this phase of his life.
hidayat’s getting stronger though. he wakes himself up in the middle of the night, trying to roll around. i can’t let him out of his swaddle because he takes every opportunity he can to scratch his face whenever his limbs are free. i still get people questioning my decision to swaddle him, but in my place, i’d rather a slow physical development than continuously trying to calm him down when he wakes up, screaming & all covered in blood in the middle of the night.
it’s been quite a challenge, trying to manage his eczema even when it seems to be gradually recovering. i’ve tried my best, and i’m still trying my best to decide what to and not to do when it comes to healing him inside out; but i guess He’s telling me that it’s just not time for him to heal just yet.
i also think it’s pretty normal that a mother starts comparing her baby’s development with other babies & the general milestones, but in hidayat’s case, i’m glad that i’d successfully psychologically convinced myself that he’ll develop in time, however long it may take. besides, it’s just eczema, kan?
i know other mothers who struggle with worst conditions, and as i’ve mentioned before, you mothers out there definitely deserve all the love you could get to keep you going, so here’s some tough love for you mommies out there: ❤
no doubt, i occasionally shed a tear or two whenever hidayat seems restless and fussy from all the swaddling when in fact, all he wants at the moment is to be free, rolling around, trying to sit up and whatnot. poor boy wishes he could practise & be like other kids but then i’m lucky enough to have family members who continuously remind me that it’s okay to swaddle him up so long as he doesn’t hurt himself even more from all the scratching. not that i swaddle him 24/7 though, i only swaddle him for naps & for his night’s sleep..
to those of you praying for us, thank you so much, and i hope you keep praying for us! till next time-
when people ask me, “what can your son do now?” my mind automatically makes a cartwheel, trying to recollect the things he can do in a sequential manner. what can he do now?
he’s about to enter his seventh month, and other babies should already be sitting unassisted for at least 30 or few seconds. hidayat can’t seem to sit unassisted for even ten seconds yet.
he can be on his tummy for quite a long while, fifteen to twenty minutes tops- until he starts attempting to scratch his face. he tries his best to push himself up, not really there yet but his butt’s up occasionally.
his grip is
pretty extremely strong. you can’t get him out of the bath without having another person muster all their strength to open his grip, gently enough as to not cause any pain to him because i tell you, his grip is extremely strong.
he blabs. he babbles, and shrieks, but he doesn’t really talk as much. he jumps when have his feet on the ground, and i can say that he’s pretty much physically a tough baby.
i guess i can’t say his development is above average, but he’s prolly on track. alhamdulillah for that! not surprised if he starts crawling in no time.
now let’s see.. where do mommies get objects for babyproofing? hmm..
during raya last year, my aunties were going all, “you should sleep now before your baby’s born! after that, there’s no full-night of sleep for you until he goes to school!”. i believed in it, and the night hidayat came into this world, i knew what i had to expect from then onwards.
with him having eczema though, it’s prolly a tad bit e x t r a in comparison to having a normal baby.
despite having eczema, my baby’s pretty active. he’d jump from one person to another, try his best to reach out for everything within his grasp, and attempt to pull it into his mouth for a little taste (or gumless bite): practically marking his territory on every single item in the house (you name it, the tip of chairs, mirrors, the floor, pillows, everything). all in all, he’s been getting on pretty well, being a baby.
his development may not be as quick as i’d expected it to be. he started turning/rolling over, both sides, at 3 months. when the eczema kicked in though, everything became slow.
up until today, i still bundle him up with a swaddle (up to his knees) so that he wouldn’t end up bleeding in the morning from all the scratching in his sleep. i still have to monitor him during tummy time incase he gets frustrated, then, resulting in another scratching fit. he practically scratches his face whenever he gets frustrated, angry, hungry or sad.
it’s really tough, having to watch his development being slightly stunted due to all these restrictions. he can’t be left on the floor for tummy time more than two minutes, he still has to put his mittens on occasionally too, hence, the fact that he still looks at his hands and fingers in awe whenever we remove his mittens.
to all the mothers of babies without eczema, be grateful. however cranky, demanding or quiet your baby may be, just be grateful you’ve got a normal baby. to those who are in the same place as i am (and even those with tougher conditions), i suppose all we need is faith and a lot of perseverance. we can do this 🙂
as for hidayat’s current routine, i’m on a roll. being a desperate mom, i joined tonnes of facebook groups for mothers with eczema babies, read up a whole lot about eczema and its causes, the types, the remedies and thank goodness, i found a ‘remedy’.
it’s called: remdii. you can read up about it by clicking the link. formulated by local researches, specifically ideated by Dr Lai OiMing whose son had terrible eczema. initially, when i’d stumble upon it while conducting my research at 4am, i was a bit skeptical about trying it out- but when i glanced over to all the creams i had lined up on my table, fact was: none of them are actually working. the moogoo msm? funny story. my probably-still-pregnant-brain went an left it in the breastfeeding room at kpj damansara whilst changing and reapplying the creams on hidayat’s face. so i scrapped the moogoo routine.
i thought to myself: all, or nothing.
so i went ahead with it. bought it through one of their agents and decided to try it out. the moment the remdii arrived at our doorstep, i immediately tried it out.
patch tested it on his ankle and saw no negative reaction to it after 24 hours, so i proceeded with his routine. with remdii, my routine on hidayat’s face would be as so:
as to my surprise, hidayat’s skin miraculously improved within one month over! of course, it comes with other preventive measures such as my extra-discipline gluten-free, wheat-free, dairy-free, sugar-free, soy-free diet with tonnes of greens and omega3. i started taking more vitamins and supplements, took probiotic supplements to help with hidayat’s gut and tried my best to keep his bedsheets (or where i lay him for bed) clean by having it changed often (1-2 days).
i admit, it’s been excruciatingly tough for me, but i guess with all that’s happened, i could say that i gained a whole lot of experience in handling an eczema baby. he’s still not fully healed, and he still has red spots and patches all over his face when i don’t moisturize him in time, and when he scratches his face, but what’s most important is: i know how to have it controlled.
there’s no true shortcut to managing eczema (especially when a super active baby’s having eczema, not only on the knooks and crannies of his body, but his face), so i’ve managed to learn how to stay calm whenever an outbreak or a flare up occurs.
i don’t mind being physically challenged by eczema, but what’s been heartbreaking for me is the fact that i can’t even plant a kiss on my own son’s cheeks. all my life i’ve been imagining, planting a kiss on my baby’s cheeks every morning, afternoon, evening, night, and whenever necessary (this imagination pretty much faded away when i was going through the takmo kawen phase though ehe). other mothers can easily kiss their children’s soft, supple and normal cheeks, but here i am, wishing i can plant a kiss on my son’s red cheeks without him wanting to scratch it right after.
it’s alright. maybe one day, Godwilling, when he grows out of it. i know, now, to plant as many kisses as i can, every single time i get to.
ever felt so helpless, you just end up praying to Him nonstop for something to happen, and for time to move as fast as it could?
this was exactly what i’d felt the night my son couldn’t stop waking up every hour, screaming in pain. his face, flaring red, flaky, dry and all swelled up. his scream was one i’d never heard before- it was all too painful to bare.
at that point i felt like the worst mother anyone could ever have.
i would race to the sink and wet my hands, then dab his whole face with water. he’d then be smothered with virgin coconut oil, still screaming as i sob to myself, trying to calm him down. he only nurses back to sleep, for the comfort, i figured.
baby’s eczema requires the parents’ diligence in the maintenance of his or her skin. i was foolish enough not to notice the signs before it worsened.
what i could’ve done was to keep on moisturising him every hour, and to make sure his drool didn’t get all over his face (my son drools a whole lot- he’d probably fill the whole 1L of waterbottle if i could get it all; and with eczema, it worsens everything). he rubs his face when his skin is dry- i should’ve stopped him, and kept his skin moisturized.
fact is that i was initially extremely clueless, about eczema. i never had it as a baby, and grew up never really knowing what it was until my nephew had a bad case of it (and still, all i knew about it was the fact that eczema sufferers itch a crazy whole lot at the folds of their skin, and that it’s triggered by a few allergens, be it environmental or orally consumed).
i was not aware of the fact that eczema on babies could actually affect their faces too.
when he started having light red faded spots around his cheek, i was told that it was a case of “ruam susu”, like any typical person or mother would diagnose it as. so i did what i was told for it to mellow down- dab him with a damp cloth or wash his face after a feed, try my best not to nurse him while i lay down at night, and to apply things like bedak sejuk, baby oil and whatnot.
none of it worked. it just got worst.
so the night that it became so bad, i decided to bring him to the hospital as an ’emergency case’. i wasn’t aware of the fact that KPJ Damansara only brings you to meet GPs for emergency cases, and that there wasn’t even one single paed oncall on sundays.
the GP wanted to prescribe us aqueous cream for his face.
you see, we had aqueous cream. used it as told, and it worsened. of course, i then read up, only to find out that it contained some sort of detergent. mana la kulit budak tu tak jadi semakin teruk?
so we decided to pass the aqeuous cream and went back home, still, not knowing what to do whenever he screamed (and at that point of time it was in intervals of half an hour, with a lot of attempted-facerubbing and scratching in between).
tell me what creams have we not tried?
when we went to the paed derm, he was given a 1% hydrocortisone cream (obviously, any doctor would prescribe a steroid cream for his raging inflammation) and a fucidin h (antibacterial + steroid cream) for his raw weeping open wound (currently on his left cheek, after countless of scratching and rubbing).
thank goodness i’d read up about TSW (topical steroid withdrawal) and decided not to use it for a long time. i’m hoping that my method of tapering down the steroid usage would eventually lessen the impact of TSW on him, regardless of the fact that we only used steroids on him for about two weeks so far.
i wanted to totally stop the steroid usage but after reading so many cases of TSW happening after immediate stop, i decided that i should taper it down instead, and go for something natural to moisturise him during the TSW process.
even much earlier before his eczema got worst, i read up about moogoo and decided to buy their irritable skin balm & MSM soothing cream. therefore i thought that this would be the best time to try em out.
the irritable skin balm, when applied during his itchy-moments, kind of made him look redder & caused him to flare up. so i passed, and decided to only use the MSM soothing cream on him (because so far it’s been quite a big help. around a week of using it and he seems to be improving).
his red flares are slowly lessening, and whatever redness that started spreading during times of stress, also started to lessen.
ag’s friend suggested using ceradan because his baby cleared up after using ceradan. helped us get one for hidayat & i’m applying it at spots aside from the wounded areas.
as for the wounded weepy areas, i would dab it dry using a napkin, then i’d use a cotton pad, dip it into 0.9% saline solution and religiously dab on em as often as i could, so that the germs & bacteria infecting the area would just buzz off (ye ah sibuk kot nak infect ey kalau aku boleh tukar size jadi mini mini macam depa aku dah pi cepuk sekoq sekoq) – also for the wound to close up & heal much faster.
i also joined a few facebook groups for eczema sufferers. the best decision i’d ever made in the history of hidayat’s eczema.
there are just so many stories & advices over there! also, it made me feel really grateful for the fact that my baby’s still, alhamdulillah, sort of manageable, in comparison to what other mommies are going through (you go, girls! be strong! we can do this!).
from these groups, i figured out a few more moisturizers that they were using, and the proper way to treat wounds, weeping oozing eczemas & how to heal eczema inside out.
apparently eczema’s caused by a leaky gut (?), therefore i went over to my mom’s neighbourhood pharmacy to get myself some probiotics to help hidayat with his gut (and even mine). i’ve also been on a super strict eczema diet, excluding anything that may be causing my baby to flare up or causing his eczema to spread.
so far i’ve been avoiding:
wheat, excessive sugar & salt, eggs, cow’s milk, gluten, nuts, bananas, heaty spicy food, noodles, chicken, beef, tomatoes, shellfish, seafood that are common triggers like prawns and whatnot, also certain fish that aren’t advisable.
i’m basically having just rice, fried dory/salmon/tenggiri, and vegetables for every single meal (thank goodness i’m staying over at my mom’s temporarily while i try to heal hidayat inside-out).
not complaining though. anything for him to recover- and with this diet, i’ve gone down 6kgs :’)
just purchased a bottle of renew intensive therapy lotion after bumping into a lady at the pharmacy, whose son had also, a terrible case of eczema on his cheeks. she claimed to have had a tough time finding the right product for her son and said that the renew lotion worked wonders on him.
so far i’ve had these products on hidayat, that didn’t really do much:
buds (doesn’t work at all)
tropika baby vco (worked in the earlier months when his eczema wasn’t bad and flaring)
medetop vco (which mama bought, but i decided to stop using it because i started on moogoo)
physiogel (stopped using it……. don’t know why?)
cetaphil (didn’t work on him)
moogoo irritable skin balm (worsened his itch)
ceradan (ongoing, lets see how)
moogoo msm soothing cream (super slow, but showing signs of improvement)
the saline solution is a wonderful aid by the way. desperate mommies with wounded eczema babies should definitely dry their wounds up with this.
at the mo my routine for hidayat’s face is as so:
– ceradan on red areas (excluding wounded areas)
– saline solution wherever required (sometimes new wounds come up because he scratches his face)
– fucidin h on wound
– wait twenty minutes to half an hour before re-dampening his face
– apply moogoo msm cream
whenever required throughout the day, i’d just dampen his skin (either with a towel or simply with a clean damp hand), and reapply the moogoo msm cream. he’d look all fresh, still red and saddening, but he’s all happy, free from his itch (until he starts rubbing his face again after two hours zz).
i’ve also been drinking rooibos tea three times in a day, just so that he gets it in his milk. google up the benefits of this non-caffeinated tea and you’ll understand (also, yay i get to drink tea again!).
having a baby with a rather moderate-severe case of eczema is tough. of course, anyone without a baby who’s experiencing such pain and agony, wouldn’t understand how tough it is, but i hope everyone would pray for hidayat’s recovery.
to everybody (mommies, daddies with experience in eczema babies) who suggested us creams, ointments & lotions for him, thank you so so so very much. when one doesn’t work, we’ll try out another. Godbless you all!
lets see how things go from now onwards. ikhtiar, usaha, doa, tawakkaltualAllah.