How often do you feel like tearing your hair out? Pretty often for me, especially when Marcie was between one to ten months old. Her eczema was all over her body, scalp and face and she didn’t know how to distract herself from scatching.
Having been both a stay-at-home and a working mom, I fully understand the additional demands of taking care of children with eczema, whether or not you’re working. I didn’t have a helper or another adult to help out during the day. I was alone at home, trying my best to stay calm taking care of my baby and to be a good home maker. The stress level was sky high, knowing that any attention lapse could result in scars/broken skin on my baby.
If your spouse/ family member is taking care of a child with eczema, do emphatise with them as you can see below it’s a lot tougher to care for an eczema kid.
1. Not even a minute’s break. A child with eczema will scratch when the skin is ‘triggered’, tired, sleepy, hungry or for no reason at all. Marcie scratches whenever she’s not occupied or when left alone. At one point, I couldn’t go to pee or poo or bathe until my hubby return from work.
2. Fatigue from lack of sleep. A child with eczema tends to wake up in the middle of the night and scratch. I am still co-sleeping with Marcie so that I can hold her hands whenever she scratches. Lack of sleep leads to fatigue which also raises the stress level. Since Marcie was born, I haven’t slept throughout the night (but I’ve got used to it).
3. No time to eat! If the restaurant is not cool enough or contains allergens that a child is sensitive too, the child will start scratching soon enough. I lost more weight than my weight gain during pregnancy plus, I’ve got into a habit of gobbling down my food as I know I only got a few minutes before Marcie starts to scratch.
4. No time for exercise! It is extremely difficult to gather the energy to exercise when (and that is a BIG WHEN) there is a little free time. When I do have the chance to jog, the exercise routine only last for 2 weeks before my baby changes her routine. Most days, I choose to chill with my hubby ‘cos we have so little time to ourselves.
It’s no wonder why you or a parent with an eczema child is so high-strung. The basic needs of sleep, eat, exercise, pee & poo can’t even be met properly. There is this study that concludes the stress levels in mothers caring for young children with eczema are equivalent to those mothers of children with severe disabilities. Below are some other emotional issues that you or the parent may face.
5. Guilt. It is easy to feel guilty when you are the only care giver and your baby ends the day with blood. I remembered feeling guilty when I dozed off for a minute and heard my baby scratching her neck. I remembered checking on her when I finished cooking and saw that she woke from her nap and scratched till blood from her ears run down to her face. I remembered checking on her when she was in a baby chair and realized she scratched her neck against the metal frame till bleeding. I remembered questioning myself if it was right to tie her up for a few minutes when I prepared her milk. It took me some time but I know now that I’m the best mom for Marcie and there’s no reason for guilt.
6. Isolation. A stay-at-home mom has no one to share your day and you lost your work status. For parents with eczema kids, it is very difficult to share with people who have not gone through the same. Worse, you tend to get suggestions that somehow point to you ‘mis-caring’ for your child.
7. Anger and blame. Eczema is an immunology disorder and it is half the time inherited. It took quite a few months before I stopped accusing my hubby about him passing on his ‘bad gene’. It does no good and doesn’t help our relationship.
8. Almost no time with spouse. That’s a big issue when the child takes so much attention, from both parents. I have yet to learn to enjoy the moment with my hubby when our baby is with us.
9. More housework. If the trigger for your child’s eczema is dust mite dropping, then you may spend more time vacuuming the house, changing bed sheets and cleaning the toys. More housework again means less time with spouse (and seldom both agree on how much housework to do!)
10. Less money. Moisturisers, bath oils, steroid, specialist appointments all don’t come cheap. Financial burden may place additional stress on the couple relationship.
One thing I’m glad to report though, it is possible to manage all of these better overtime. One good that comes out of taking care of Marcie for the past 15 months is that I’m proud of myself, my hubby for managing it so well and is more confident of our ability to weather difficulties together…
& always believe that You are the Best Parent for your eczema child
37 replies on “10 reasons why parents with eczema child have a tougher time”
Thank you so much for putting into words what my life is like right now. This is something you really have to experience to fully understand how difficult it is. My son is only 6 months and right now I am desperately trying to comprehend that we will be dealing with this for years. That is so very overwhelming. Thank you again for sharing.
Hi Megan,
6 months is a difficult period.. it was very tough for me then. It’s the time when we have almost depleted our energy after child birth, breast feeding, and then the scratching started real bad.. This blog has much info you’d need and hang in there, also family support helps, hugs!
Take care,
Mei
Its so good to be able to relate to others.here in the uk in west Yorkshire I cannot find any obvious eczema group wherr parent could come together to exchange notes.
3of my siblings had eczema and asthma. .dont know how my parents coped!
My son has suffered eczema and skin allergy since birth and now his 4years old. I have a younger daughter who is 18months younger. We both work full time, I work during the day and he works nights so we are never together when looking after kids..which poses a challenge in itself. We get 2-3hrs sleep due to my son itching with agonising discomfort. .some nights he walks down the stairs half asleep itching, or rubs his back against carpet or bangs his head out of frustration. .!! So one of us is constantly with him now. Some nights he just won’t settle despite antihistamine and moisturing and it wakes my daughter so we end up bathing him to wash off dead skin and blood to re apply fresh moisturing, which he physically refuses while hitting and shouting at us. .not his fault, how many of us fancy a bath at 3am while all we want is sleep. I have bursted into tears many times..sometimes at work. His so young and to go through such a torture. Just imagine an itch on your back you cant quite get hold off, just imagine its their for 4 years how frustrated you would be. Waking him for school is a challenge in itself huby faces by himself with me being at work, getting him ready kicking and shouting, moisturing him inside his tubifast garment..he hates it with a passion. All this is having an impact on his behaviour and education and social integration. Visits have to be madr to school to moisturise him. In total 5-6school runs are being made. Work have not allowed me any flexibility esp. When i had previously committed to overtime to the point I had to take somr stress leave. I justvcouldn’t take it anymore. I will be made redundant soon..maybe its a blessing in disguise I will spend time looking after him. I have used my time to carry out a food diary and on closer observation I am starting to see some patterns. No doubt we are spending 6hrs cleaning house daily, 2hrs washing his clothes bedding, 7hrs moisturing him and the list goes on. And yes even we have learnt to gobble down food snd theres no couple time.
Hi Aero,
So sorry to hear of the stress and the struggles both day and night. It is very difficult at night.. I’m still sleeping with my toddler, turning 4, and fortunately holding her hands a little bit is enough for her to stop scratching till she falls back asleep.
And yeah. gobbling food, I cook almost daily and most times wonder why I bother at all when I’m barely tasting them proper. (I’m cooking because it’s more nutritious and still trying at having family time at meals 🙂 )
A few things I can take of: allergy testing, chlorhexidine/swimming, keep bedroom cool and not too dry, wet wraps.. And I moderate at TalkEczema, UK-based, may want to check out there for a physical group. NSGCCE?
Take care, hugs,
Mei
This is exactly all the feelings I am going through with my little girl. It is so unbelievably difficult and stressful and consumes your whole life. Only other eczema parents can fully understand the torture. Glad I found your blog. Only honest blog I read about the things we parents have to sacrifice.
hey guys,from the UK, and i am the mama of a four and a bit little girl, and although she is my world. i am glad i found this blog! we have had problems since she was a few weeks old, and its developed into full blown Atopic Excema. We have had all of the above and beyond, so its good to see that i am not alone! She is allergic to wheat, egg white, peanuts, and milk, as well as a severe allergy to dust 🙁 so my life is either cleaning or being a mum 🙂 keep strong everybody, we are all in this together!!
Thanks Carrie for dropping by my blog and your encouragement! I totally understand about cleaning, and this cartoon kinda says it all! For your Monday blues (if any!)
http://eczemablues.com/2011/09/5-of-the-101-things-that-moms-with-eczema-child-do-differently-squeaky-cleaning/
Hugs! Mei
haha! i love it 🙂 we are on easter break atm, so taking my little one to the local playcentre, armed with more ointments and our excema bag 🙂 your cartoon made me giggle, so mission accomplished, hope you all have a lovely day/evening x
Enjoy your easter break! And thanks for checking my cartoon even when you’re having fun!
Hi Stephanie, hope you managed to have more sleep since!
Thank you. Just through a stressful day of little sleep after a night of no sleep, and now taking a breather after the gut clenching process of trying to get my daughter’s scratch wounds flushed with water. Needed to know there are others out there.
Hi Crystal,
Are you in Singapore? If yes, then look out (for blog update) for the support group that I host monthly at the National Skin Centre – the next one is target on 23 March.
As for financial assistance scheme, I’ve initiated one with my donation and it’s administered by the allergy association. If your child sees a doc at restructured hospital and NSC, and you request to speak to the medical social worker to discuss financial assistance, they will point you to the schemes available. Form for the selected appropriate scheme for you will be filled up, and your consultation/medical prescription will then be paid for. For more on the scheme I initiated, see this post
http://eczemablues.com/2012/01/first-eczema-fund-in-singapore/
(just a note that though I’ve donated the $, it’s administered by an independent non-profit, so I don’t have a say as to who the money should be given to though I’ve agreed to the criteria for fund disbursement)
So catch up soon, hopefully in March if you’re in Singapore?
Mei
MY name is Crystal,my son Malik has been suffering from eczema from 3monhts to present ,he is now 3…..i am so happy i found this website and realize i am not alone dealing with ,my question is:are there any organization where i can talk to some one about this ?or if i am entitle to any financial assistant? .I went to sign my son up for kindergarten to and realize i have to pick him up when he become itchy or keep him home.This is very frustrating because after not working for 3 years i was really looking forward to working again because financially i cant afford to stay home.
Thanks Suzanne! Glad you like my website and cartoons! You are taking such good measures with your baby girl 🙂 Is she only child? If in Singapore, maybe we can form playgroup!
Join my support group and we can chat more over the group mail, just fill in the contact form
http://eczemablues.com/contact-me/
Thank you so much for your wonderful website- very helpful and inspiring! I want to be optimistic like you. My baby girl has had eczema since 4 weeks and is now almost nine months. We have tried every cream, doctors advice and elimination diet but nothing “cured” our baby’s eczema. Now we are managing it quite a bit better. Our routine is to cover Emma in almond oil and give her two lukewarm baths each day. We moisturize with Cetaphil while skin is still damp and use cortisone 1% ointment on very red patches. For her scalp we use organic coconut oil. We haven’t been great at identifying triggers but think that dairy might be one and of course heat. We also supplement with fish oil and probiotics and take homeopathic remedy graphite 30c. For scratch prevention, we use distractions during the day and at night we put scratchmenot mitts and swaddle her in muslin cotton blanket. All of these, combined with her possibly beginning to outgrow (? we hope) has made it more manageable. I sympathize with all parents of eczema babies and I thank you, Mei, for your fantastic website! I especially love the cartoons!
Thanks Ana, I’m so happy everytime someone sends me a nice comment that my blog has helped! Hope your baby boy’s skin gets better! If you’re in Singapore, do join my support group by filling in the contact form, thanks!
Wow, I’m so gald I came across your site. We’ve been so frustrated about our baby boy’s skin condition. Last night we were up till 4am b/c the baby (4 mos) was up scratching his face until we finally put him on our bed an he fell asleep. Tomorrow we are going to dermatologist for a f/u. Let’s see how it goes, I don’t want to keep using all the steriod oils and lotions on the baby.
This is such a helpful site. Thank you very much for putting it together. 🙂
[…] isolated and bearing the full burden of childcare before spouse returns from work. Furthermore, the stress of taking care of a child with eczema and its causes, treatment and triggers are often misunderstood by […]
Thanks Eric for your encouragement. It’s tough as always, just last nite I spent 2.5 hours being the anti-scratch device for Marcie and gave up. Everyone ended up wide awake by 4am and she snacked and drank milk with my hubby. Finally at 5.30am, she dozed off. Every night is still no good sleep nite, but at least Marcie looks happy and rashes not obvious. Hope winter isn’t affecting your child’s eczema too much! Take care 🙂
Complete empathy for what you’ve been through & are currently going through. I have nothing but respect for your efforts to help educate and support other caregivers and sufferers.
Another study I’ve found that concluded “families with moderate to severe eczema had a significantly higher impact on family score than families of diabetic children, and the financial cost of managing eczema both to the community and families was higher than managing asthma.”
From Journal of Investigative Dermatology (2005)
Parents with eczema children may not even have time to take care of their teeth! Lol
Today, my dentist for the first time in 20 years said that my teeth are dirty!
Thanks Brian, I have checked out the website you recommended. Seems like it can work for babies who don’t do much with their fingers yet (except scratching for those with eczema!)
Wow, my daughter has eczema and I wholeheartedly believe this study as we lost sleep for months trying to prevent our baby from scratching at night. My wife constantly worried about her scratching herself bloody. Thankfully we found ScratchMeNots to help us as we figured out what was causing those flare ups. We are so thankful for them! http://www.scratchmenot.com EVERYONE can sleep (and enjoy the day) knowing she cannot scratch and hurt herself. I highly recommend them as they provide some relief for the nonstop battle we are parents go through with eczema.
I read today that research shows mothers taking care of eczema child lose an average of 39 minutes of sleep per night and fathers lost 45 minutes of sleep per night. I think I lose like 2 hours! Any thoughts on this, anyone?
http://www.ncbi.nlm.nih.gov/pubmed/16445784