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Support Group

Update on Inaugural Eczema Support Group event – A huge success!

A successful Inaugural meeting of the Eczema Support Group!

The event was a huge success with the 150-person auditorium packed! This was despite the heavy downpour and the traffic jams along various expressways! And NSC staff were excellent – so many volunteered their Saturday, and all of them are earnest and positive! Hurray!

Some notes that I took, based on talks by doctors – Prof Giam and Dr Mark Tang.

Prof Giam’s speech – Eczema Made Simple

Shared on:

– The mind being very important to have the right attitude to managing eczema

– Genetic condition and linked to other conditions like sinus, asthma

– 2-3 times increase in eczema over last 30 years, affects 21% of Singapore school kids

– Related to filaggrin gene, read more in previous post here

– Usually starts with lower filaggrin gene, followed by exposure to environmental factors, allergen sensitization, staph bacteria colonization and sensitization to proteins.

– Also mentioned need to see doctor if infection due to herpes virus, not to self-medicate, see previous post here.

Dr Mark Tang’s Speech – What Works, What Doesn’t

What Dr Tang conveyed was the thought process and general guidelines that eczema patients can use to determine if they ought to explore another treatment.

– Chronic condition, so beware of ‘cures’ – sometimes, the pictures on the blog may not be of eczema, may be artificially altered or it could have got better cos eczema comes and goes (and the better picture is taken on a good day)

– Good thing is 70% outgrow – could improve to a localized, manageable eczema

– Assess treatment on whether it has been subject to clinical trials, or it is based on collective experience or personal experience (decreasing reliability, obviously!)

– Differentiate between safe vs no known side effects – esp. for TCM or magic pills (which may turn out to be steroid)

– Guard against severe diet restriction – foods are assumed safe, unless proven. A picture of a child in developed country having a nutrition equal to that in undeveloped country was shown, due to severe restriction to just rice milk

– Use steroid under supervision, not just buy and use at your own discretion

– Moisturizing has proven to reduce risk of eczema relapse by 1/3 – read more here on outside-in hypothesis

In Panel Q&A

– Question on differentiating heat rash from eczema – child’s sweat glands not fully developed, thus easier to have heat rash. Need to be confirmed by doctor.

– Phototherapy – for adults, cos need to stand in a box, wear goggles, thus more suitable for adults and teens; a specific spectrum of UV rays that is studied to reduce inflammation is shined onto the patient during therapy.

– Steroid cream not working sometimes could be due to not using the right strength, amount/frequency or if there’s infection. (I always clean my girl with chlorhexidine before applying steroid, particularly on bad days)

– On Protopic – Been in market for 10 years, thus far, no evidence on increasing cancer, read more here

So, above are the notes I took! And I’m so so happy (and a big phew!) my speech was delivered well (though my hubby commented it’s OK LAH cos Prof Giam and Dr Tang spoke so well!)

p.s. this blog post, as all blog posts, are written by me and not subject to vetting by any doctor. So there’s a chance I may not be 100% accurate in my note-taking, well, to be very sure you heard right, you’ve to attend the next event yourself!

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Support Group

Don’t Miss Inaugural Eczema Support Group Meeting at National Skin Centre

To all you wonderful parents in Singapore who has been supporting my blog or joined my support group, do turn up for this Saturday’s (14th July) inaugural meeting of the Eczema Support Group, a peer support network for eczema patients in Singapore supported by the National Skin Centre’s Health Endowment Fund.

I’m the co-chairperson for this group, and I look forward to meeting everyone because I know you will make it a meaningful session where we ‘band’ together with the benefit of esteemed doctors sharing eczema information and a supportive NSC team (nurses, medical social worker, HR, communications/publicity). Registration starts at 1.30pm and run from 2 to 4pm.

See further details below as RSVP is required!

Come for the Inaugural meeting of the Eczema Support Group!
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Support Group

Eczema Forum Notes – Good Overview on Child Eczema

Last Saturday’s Eczema Forum in Singapore presents a good overview on child eczema, explaining the various causes, factors and treatment options. It was well attended by over 100 people, and I’m amazed half of which looked like grandparents who were wanting to find out more information for their grandchildren (how proactive they are)! The other half were parents with eczema children and what I’m even more puzzled is how everyone except me and another family managed to find alternative childcare during the talk! Marcie was the only (sometimes noisy) toddler in the room!

So here are my notes for those who wanted to attend but missed it!

By Dr Mark Koh, Dermatologist at Changi General Hospital – Why Does my Child get eczema?

Emphasis was on eczema being a chronic condition, without a cure but possible to control.

Common skin condition – affecting 20% school-going kids with no gender bias

Common eczema areas – Flexural areas – behind knees, elbows and for the older patients, ankles (with lichenification), around the mouth for infants with saliva, face, hands

Appearance of eczema skin – pictures were shared, generally, red, patchy, inflamed (a point was mentioned about eczema skin being unable to tan, thus more likely to look whitish), read this post to learn more on eczema skin color.

Eczema Causes – Multi-factorial, genetic factors, environmental factors

1.  Defective skin barrier that is more susceptible to water loss and unable to form an effective natural barrier and  lacking in filaggrin, lipids and proteases (read post on cause-skin barrier) – point was made that no oral medication can improve skin barrier, but moisturizing remains as effective treatment. Best moisturizer? One that the child will use, can be used frequently and affordable, brands such as QV and Physiogel were mentioned. (Side note: Two parents feedback that Seba-med didn’t work for their child)

2. Inflammatory cells – Immune system incorrectly attacking the skin, triggered by allergens and leading to production of chemicals that trigger itch (read post on cause-auto-immunity). This can be treated by steroid cream in most cases. Relevant posts on steroid:

Is Steroid Cream Safe? (shows table with various steroid potency)

Are you Suffering from Steroid-Phobia? (a table was shared on what’s a safe amount to use, and on the face and neck, up to 10g is safe on a child in 10-day period, twice application. Striae (stretchmarks), skin thinning, elangiectasia, hair growth are some side-effects of steroid but generally reversible)

Friday Dr Q&A with Prof Hugo – Steroid Cream

3. Hygiene Hypothesis – Body is prepared as a defense against bacteria but with increased use of soap, anti-bacterial wash, the body mistook skin to attack (read more in post on cause-auto-immunity).

4. Environmental Factors Weather changes (individual will react differently in different weather), Sweat (irritant), strong soaps and chemicals (Dettol and Johnson & Johnson baby were mentioned), House Dust Mites (that can be trapped in carpets, pets, stuff toys), Insect bites

Read these relevant posts:

What Triggers Itch?

What and How Much Detergent to Use?

How to Shower your Child? (mentioned that can bathe twice a day in cool/lukewarm water, soak in bath oil for 15 minutes, can choose one with antiseptic if not open to bleach bath. Water loss after shower is high, so be sure to moisturize immediately after. Bath oil can help maintain moisture better than soap.)

Should you be worried about House Dust Mites?

Top 10 Cooling Places to go with your child in Singapore 

Swimming recommendation – Not longer than an hour, not from 10am to 4pm, use SPF50 sunscreen, try not to go once the pool has been chlorinated nor before the pool is due to be clean (too strong chlorine or too much bacteria), always shower immediately and moisturize thereafter! Also good to find out cleaning schedule and % of bacteria, amount of chlorine used.

Relevant posts:

Do not drink pool water!

Swimming Q&A with Doctor Bridgett

Block Sun, Irritate Child’s Skin?

Other Triggers for Eczema – Eczema flares can also be caused by staph bacteria (read post on cause-staph bacteria), virus (including herpes simplex virus, read post on eczema herpeticum) and fungus. Stress (read interview with Dr Bridgett on stress, read post One more reason not to stress your child). Allergy (read post on cause-allergy where you’ll see the table of common allergens for infant, pre-schoolers and older children), food is mentioned as unlikely to play a major role in eczema and a skin prick test can be performed to check on common allergens.

Posts on Allergy tests:

Friday Dr Q&A with Dr Liew on Allergy Tests

Friday Dr Q&A with Dr Liew on Elimination Diet and Allergy Tests 

Friday Dr Q&A with Prof Hugo on Skin Prick Test

Taking the Fear out of Skin Prick Test

Is your child wrongly avoiding a tested-positive food in skin prick test?

To control eczema well, will allow the child to break the itch-scratch cycle; read this post on ‘Why Scratching Feels so Good but is so Bad for your child‘.

The second talk was by by Dr Ang Seng Bin, KKH ‘How do I manage my child’s eczema?’

The contents were somewhat similar to Dr Mark Koh’s talk, so I’d just focus on the more interesting points:

Eczema statistics: 25% get from 0-1 year old, 22.7% by 7 year old and 17.9% by 12 year old, thus there’s a likelihood of ‘outgrowing’ the eczema

Costs of Eczema: Financial costs – direct cost of consultation, treatment, moisturizers and indirect cost of taking leave; Stress – in family of severe eczema is higher than that with children of type1 Diabetes (read popular post – 10 reasons why parents with eczema child have a tougher time)

Characteristics of Eczema Skin – Some interesting points mentioned:

1. Unable to regulate temperature effectively, sometimes feeling too cold in air-con while feeling too hot in the sun.

2. Sensitive to Fever, eczema flares during fever with rashes resembling punched-out ulcers. See post on eczema herpeticum, generally if eczema get worse rapidly, with fever, lethargy and distress, should see doctor rather than continue to self-medicate/treatment. Antibiotics may be prescribed by doctor and can treat inflammation and thus, also reduces inflamed skin.

3. More susceptible to conditions such as viral wart and Molluscum

4. Some contact allergens include (from most common to least) nickel, thimersol, colophony and lanolin.

Treatment

In all cases, moisturizing is a must. Mild cases require mild potency steroid, and increasing potency for more severe cases but always under doctor’s prescription. Wet wraps and calcineurin inhibitors (which are immune moderators) can be used for moderates cases. Read this interview ’Easy to Use Wet Wrapping to Keep Child’s Skin Hydrated‘ on using Tubifast Garments for wet wraps. Azathioprine, cyclosporine and UV light therapy (for adults) may be prescribed in more severe cases.

More on moisturizing:

1. Moisturizing can reduce amount of steroid used and reduce frequency of eczema flares.

2. It may have some preventive measure, as an unpublished study that tracked 75 newborn being moisturized from birth showed none of them had eczema.

3. Moisturizing is to be used both during eczema flares and when there aren’t any, for the maintenance of the skin barrier.

So What Moisturizer?

Let’s cover the NOs – Fragrance, color, soap, protein, Seba-med mentioned by parents to worsen the skin and a patient was sensitized to aloe vera and started being allergic to it, Aqueous cream contain sodium lauryl sulphate that is an allergen. Nothing that the child will complain painful, itchy or sticky after application. For more posts on moisturizers:

Sensitive Skin Product Series – What Ingredients to Avoid?  

Sensitive Skin Product Series – Understanding Ingredients and Patch Test

How Much Moisturizing is Enough?

Help! What Moisturizer to Use on our Eczema Baby?

Managing the Scratching 

Various tips – Delay the scratching, Distract the child, Drink cool water seems to help some kids (read this post – Giving my Eczema Baby Cold Water), De-Stress and Divine intervention (meaning using religion, Marcie and I do pray every night using the prayer hand from church where each finger represents a category of people. So we pray for eczema babies often!) Not to say (or shout) stop scratching! to your child, read my post here.

Q&A Time

There were many questions and I do feel like declaring, ‘Read my ECZEMABLUES.COM for answers‘ as really all of the questions have been tackled in my blog. And if you haven’t realized, there’s a tag cloud on the bottom of right sidebar where you can choose the topics you want to find out more about.

Some Q&As below, others are collated with doctors’ talks summary above.

1. Can Moisturizer and steroid creams be kept in fridge? Yes, no issue with that if child likes it cooling. Also mentioned that steroid should be applied before moisturizer and if can be done at the same time. Moreover, inflammatory skin cells tend to be more widespread than the visible eczema patch, so not an issue to have steroid spread more than the original application area when moisturizing.

2. For scalp eczema, can try anti-inflammatory shampoo such as Coal Tar or SebiTar. Read this Dr Q&A with Dr Bridgett on cradle cap shampoo.

3. Is probiotics helpful? Answer was generally no effect, but can try if start taking pre-natal up to child is few months old. May delay eczema. Refer to posts:

Do you or your child take probiotics? Is it what you ate during pregnancy?

4. Is omega 3/6 helpful? Answer was no conclusive research. Read my posts on Kids’ Nutrition which I’m working with Toby Amidor, a registered dietitian. You’ll find links on antioxidants, fish, fluids and inflammatory foods to avoid.

5. What to do when air-con dry skin? Read this post on Keeping Cool with Air-Con and Moist with Humidifier.

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Support Group

Asthma and Allergy Awareness Day in Singapore 27 May (Sun) 830-1130am

There’s another exciting event for Singapore parents! Dr Liew Woei Kang, who is my current Doctor in Friday Q&A who also heads the Asthma and Allergy Association has just informed me of the Asthma and Allergy Awareness Day, see details below!

Date/Time: 27 May Sunday 8.30-11.30am

Venue: Hortpark, Multipurpose Hall and HortLawn, near Alexandra Road at 33 Hyderabad Road

Events: Leisure park walk with fun family events, such as bouncy castle, face painting, balloon sculptors and epipen training stall

Topics: Living with Childhood Asthma by Dr Ho Ling, KKH; Myths about living with Asthma by Dr Augustine Tee, CGH

For more details and the map, see pdf

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Support Group

Eczema Forum – May 19 (Sat) 2-4pm by Singapore Pediatric Society

A quick note to Singapore parents reading my blog, I’ve been informed by Mölnlycke Health Care Limited of a public forum on eczema this Saturday, May 19th, details below:

Forum – Take the Worry out of Eczema

Date/Time – 19 May (Sat) 2-4pm

Venue – York Hotel Singapore, near Mt Elizabeth

Topics – How does my child get eczema? By Dr Mark Koh, Dermatologist at Changi General Hospital; How do I manage my child’s eczema? By Dr Ang Seng Bin, KKH; A wet wrap demonstration by KKH nurse NC Lim Hwee Hoon (you can also read more about wet wrap here)

For more details on the event, see pdf .

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Support Group

Signing Time – Great for keeping fingers busy + Available on iPad

Picture taken from /www.signingtime.com/ondemand

I’ve blogged a few times on how signing has helped Marcie with her eczema, by distracting her from scratching. You can read my guest post on AtopicSkinDisease.com or refer to my post Distracting Little Fingers or my interview with Laura Berg, the founder of another sign language program MySmartHands. I love learning sign language with my baby Marcie, and Signing Time has kept us company for many months when I was a stay-at-home mom.

So when Signing Time is made available on iPad and offers me a free video download of my choice and blog about it, I’m happy to do a blog review (something which I don’t normally do because Marcie is not available for testing and we simply can’t incorporate ad-hoc products into her skincare routine).

My video download choice?

Sing & Sign – A compilation of songs from some of the signing time DVDs; and this is only available as a digital download. The video is saved on the computer and can be viewed whenever the parent and child are free, without the need to have internet connection (once downloaded). I view it on a Mac with my toddler, Marcie and we had a fun hour learning signs and I’m reminded once again why I love Signing Time:

1. Real people – the founders are in the video, with her daughter and nephew! There is one animated character, Hopkins the Frog, who I assure you is a fun animal who doesn’t transform into anything nor poke-any-mon!

2. Easy to follow signs with colored tapes on fingers – this makes it easier to view the signs

3. Heart-warming songs – some songs are upbeat with a very catchy tune, some are emotional and can bring me to tears. The lyrics are meaningful, fun, rhyme and even parents like to sing them!

4. Expand vocabulary while learning lessons – With songs such as saying thank you, please, sharing and learning vegetables and fruits (besides ABC and 123), children can learn meaningful lessons while signing (in fact, I use it to reinforce what my toddler learns in preschool!)

So, it’s clear I love Signing Time and I think because I watch it during my most struggle-with-eczema time being a stay at home mom, it always has a special place in my heart. What I have to make special mention, is that Signing Time is offering a chance to win iPad3 when you download their video, including one of their FREE videos! This iPad sweepstake is open till May 18th, so hurry!

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Support Group

4th Support Group Meeting comes with Snuggle Paws Giveaway! 28 April 930am

It’s time for our 4th support group meeting and it’s scheduled on 28 April (Saturday), 9.30-10.30am at Long John Silvers, 1st floor of Tiong Bahru Plaza (see pictures below). I’ll be there with my hubby and baby and this time, there is a special giveaway!

Giveaway Details

One (1) Tiger Travel Top (as per picture above) worth UK pounds 16.99! (Color is white with pink seams and size is suitable for 2-3 year old)

To be eligible for the giveaway:

1st – You must have filled up the contact form here and be invited to join the support group mail.

2nd – You must RSVP for the meeting by 26 April to [email protected], stating ‘I’m interested in getting your Snuggle Paws giveaway – a travel tiger top for 2-3 year old”

3rd – You must turn up for the support group meeting for the lucky draw – everyone who RSVP will be given a number and I’ll just randomly draw a number during the meeting!

More about Snuggle Paws

Snuggle Paws is a company based in Kent, UK that designs and sells clothing suited for eczema children, protecting their precious skin and allowing the skin to heal. You can learn more about Nikki, the mom who founded the company, designing clothes for her child with eczema here.

If you are making an online purchase at SnugglePaws.com, 10% of the price (excluding delivery) you paid will be donated to the Singapore’s Eczema Fund, the very first fund that pays for treatment for low income eczema patients. Remember to indicate in the “Source” at checkout – Mei or MarcieMom

A Note on MarcieMom’s Independence

The giveaway is paid for by MarcieMom, and not given free by Snuggle Paws. Our support group meeting is not sponsored by any company and in no way, has your details been given to Snuggle Paws or any other company. Simply put, I own a new Snuggle Paws and Marcie doesn’t like long sleeves, so I’m giving it away, esp. when it’s so precious and not cheap!

Meeting Details! (Don’t get too excited with the giveaway and forget about our meeting!)

Long John Silvers Breakfast Meeting:

Date – 28 April (Saturday); Time –9.30 to 10.30am

Click this link if you want to see the breakfast menu

Venue – Tiong Bahru Plaza 302 Tiong Bahru Road, #01-31, Singapore 168732

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#4Eczema Twitter Party – A Successful Sharing of What Works!

Wow! It was such a fun and quick-paced sharing and our experts shared so much with the participants! I’d hate for such useful advice to go to waste, so I’m putting up the selected transcript in this post. If you have further questions for our experts, you can tweet OneSpot_Allergy or DoctorClaudia or SJApaliski or EczemaSupport or simply ask in the comments and I’ll ask in Friday Q&A (if appropriate) and get an answer for you! (Phew! There’s so many ORs, meaning so many helping hands for eczema families!)

@MarcieMom: Welcome everyone to #4Eczema Twitter Party! Thank you so much for joining @MarcieMom @ScratchMeNot @EczemaCompany @EczemaSupport

@MarcieMom: Let’s get started sharing What Works for Child’s #Eczema – I’ll be asking Qs but anyone can ask our experts/panelists anytime!

@MarcieMom: Q1 – What’s the BEST thing that has helped your child’s eczema? Moisturizing or Steroid or Swimming or Food Elimination/ others?

@TammySigond: Moisturizing, using shea butter; @YoreOrganics: For my daughter, we have to stay away from artificial fragrances, SLS, dairy etc; We love coconut oil, jojoba oil, calendula, shea butter for moisturizing. We also take probiotics for eczema; @AllergyMentor: We love apricot oil for mild flare ups, it doesn’t sting!

@EczemaSupport: Eczema is multifactorial – often quite a few things work together to make improvements

@EczemaCompany: Identifying triggers, homeopathy, immune balancers, scratch protective clothing like @ScratchMeNot and @KumfyCotton

@SJApaliski: My approach is to find out what parents know, then go from there! Avoidance, if we can determine the triggers, is the cornerstone of care.

@OneSpot_Allergy: Some people report that the quality of their water makes a difference. Wrote about it here; softened water or just chlorine removed with carbon filter

@SJApaliski: How helpful are antihistamines for all of you? Suprisingly many physicians do not consider antihistamines or dose too low…..

@EczemaSupport: Here in UK, antihistamines tend to be used for their calming effect (sleeptime) rather than to help eczema

@SJApaliski: Sometimes I think that the calming effect is part of it. I hate to see little one so itchy! @TammySigond: Not helpful; @mycrazybusylife: Antihistamines are life changing here

@DoctorClaudia: Worst thing to do for eczema is scratch that itch! Reason being…the barrier is already delicate and any scratching will make it worse, allowing penetration of irritants.

@ADRescueWear: Wet wraps worked the best for my son; @Sweetmatcha: We used aquaphor! @Fayrahim: SMN Sleeves, MooGoo, Olivenol Plus worked for me & majority of moms on my support group

@OneSpot_Allergy: My readers report that CeraVe helps eczema, also Vanicream, renew from Melaleuca. Do you agree?

@SJApaliski: Wow, I agree with CeraVe, replaces some missing components in eczema skin! @TammySigond: Just started cerave…seems to be good for daughter so far; @Homawoodrum: Vanicream is one that has been safe for us; @EczemaCompany: Of the three, Vanicream is least toxic; @ADRescueWear: We use Vanicream under wet wrap, is there a natural option? Does coconut oil rub in easily and will it work under wet wraps? @Yoreorganics: It’s very important that the coconut oil is raw, virgin unprocessed + organic!

@MarcieMom: Q2: It’s also our 3rd Prize Q! How many times a day do you moisturize your child and how long it take to use 500ml/16ounce bottle?

@TammySigond: Q2 in the winter twice a day…other months just once is enough. 16 oz lasts 3-4 weeks or 6-7 depending

@OneSpot_Allergy: Careful about food allergens in eczema cream. Nut allergic users report Cetaphil burns due to these ingredients: http://blog.onespotallergy.com/2011/04/cetaphil-products-tree-nut-allergy-warning/

@OneSpot_Allergy: My readers also say that Lubriderm burns, by the way. Is coconut oil helpful to anyone? @Yoreganics: We LOVE coconut oil at our home.  Great to eat raw too! Anti-bacterial.

@Sweetmatcha: I moisturize twice a day (morn/night) it takes about a month to use it all up! @AllergyMentor: We found that a bath with a tablespoon or two of baking soda helps relieve the itch. Then oil up!

@DoctorClaudia: The active fraction of oat are the avenanthramides, that are anti-itch and anti-inflammatory. Great ingredient for eczema.

@EczemaCompany: Congrats to our winner for Q2 @TammySigond!

MarcieMom: Q3: What trigger have you avoided and your child’s eczema improved much thereafter?

@YoreOrganics: Laundry routine is a big trigger!; @amz4701: We have to avoid the tub.

@Fayrahim: Gluten Free Diet, Non Diary Diet, really to spring cleaning the bedroom (changing sheets everyday) pillows under the sun.

@EczemaCompany: Food allergies (dairy, gluten, soy, corn, walnuts, hazelnuts, almonds, tomatoes, red peppers), detergents, overheating

@OneSpot_Allergy: My son is highly allergic to peanuts & nuts. Fortunately no asthma or eczema, but I learn from my readers.

@KeenKidsatHome: We were in humid tropical climate for 2 weeks & my skin cleared right up. Soon as I got home it flared — maybe dryness is trigger

@EczemaSupport: Factors relating holiday remission of eczema could be reduced stress, sunshine, different clothes, no airborne allergens.

@EczemaCompany: Dryness is certaily a trigger. The sun and ocean water can be helpful for some eczema.

@MarcieMom: Q4: What’s the best trick you have to distract your child from scratching?

@MarcieMom: Sign language has helped to distract my girl from scratching! http://bit.ly/v8C6Fw

@Sweetmatcha: I give them their favorite game or have them do a craft project with me; @amz4701: Dress quickly! Air irritates her skin!

@EczemaCompany: TV 🙂 During wet wrapping it was the ONLY thing that would work. Other times going outside to walk or play worked well.

@DoctorClaudia: It is psychological to scratch so any other use for hands -activities for little ones- will help avoid scratching; Cold compresses alleviate itch without scratching. Cool, damp towels work.

@DoctorClaudia: It’s important to note that not all eczema is allergic dermatitis. There is also non-atopic eczema.

@DoctorClaudia: There is a gene defect that links peanut allergies, atopic eczema and very dry skin. http://www.youtube.com/watch?v=s9OWK6DPIq8

@MarcieMom: Q5: It’s also our 2nd Prize Q! Does your child scratch more at night? How do you protect him/her from scratches?

@Sweetmatcha: Yep, she scratched all night and then there were scars! I would put layers of lotion and protective clothing. @AllergyMentor: I have my little one sleep with cotton gloves or socks over hands to prevent night scratching. @EczemaCompany: When his skin was severe night time was horrible! Not much sleep in our house until we found ScratchMeNot and KumfyCotton. @PipMacdonald: Also found scratch reduced at night dressing in onesie & sleep bag not able to scratch & fan cooled on warmer nights.

@DoctorClaudia: Try using clinical colloidal oatmeal in the bath or as a mask; Silicones are also great for barrier repair, and protect skin from drying out.

@MarcieMom: I use oatmeal too! http://bit.ly/s2SWcf How I shower my kid

@MarcieMom: I use humidifer + aircon at night, seems to help http://bit.ly/wNVU44

@DoctorClaudia: Once humidity levels drop below 40%, atmosphere pulls moisture out of skin, drying it out. This is bad for eczema.

@Adebortoli: My daughter scratches more at night. We use organic cotton pj’s and sheets and it helps; @EczemaSupport: We found our boys got too hot at night – so they slept without pjs

@EczemaCompany: Congratulations to our Q5 winner! @Adebortoli!

@MarcieMom: Q6: Does your child have cradle cap? Share what works on removing cradle cap!

@ADRescueWear: Olive oil for cradle crap and a soft comb; @TammySigond: Baby oil worked semi-well also mineral oil; @Sweetmatcha: I used natural oil on her head, let it sit for awhile, then used a comb to gently brush it out. Do before bathing!

@MarcieMom: One of my first post on http://eczemablues.com http://bit.ly/v8bz2y On cradle cap and how I removed it

@amz4701: 13mo still has little bit. Is it associated with eczema?

@EczemaSupport: Cradle cap and eczema on scalp http://www.nottinghameczema.org.uk/downloads/35_Scalp_Eczema.pdf

@PipMacdonald: A bit of olive oil rubbed in 10 mins b4 bath then wiped off gently in bath; @Ghauer: Need to get creative on bath time – ice cream shop, tub toys, etc; @ADRescueWear: cradle cap is what we noticed first and horrible scratching – was hardest to get rid of

@DoctorClaudia: These are my go-to products for relieving itchy sensitive skin. Oils are great for soothing and hydrating skin. Try Borage, Evening primrose & Argan here

@MarcieMom: Q7 Do you use steroid for your child? Share your oral steroid/ topical steroid experience!

@AllergyMentor: We use topical steriods in 3 strenghts as needed. Avoid oral if at all possible, side effects are so harsh! @Sweetmtcha: We used the cortisone anti itch –  that seemed to work for eczema, we were desparate!

@MarcieMom: My tot has a one-time 3 weeks quickly reducing oral steroid at 7mo, worked very well!

@Endeczema: We use Dermasmoothe. Problem is our kid has eczema primarily on hands and we don’t want her to eat it and so we don’t use steroid on her hands, which is precisely the place that needs it most.

@EczemaCompany: Tried multiple times, but when stopped, eczema became worse than ever. We decided to treat from within instead; @ADRescuer: Sometimes wet wraps with vanicream can elimnate need for steroid but depends on severity; limited swimming in pools with chlorine can help; @amz4701: Have been rx betaderm, betamethasone and hydrocortisone with varying effectiveness; We were also rx oral meds and are not using them because of the side effects; @SJApaliski: Oral steroids are temporary, may get rebound after stop; @MarcieMom: Yup, oral steroid may not worked for everyone, glad it did for my tot; @EczemaCompany: We experienced rebound after stopping topical too.

@MarcieMom: Here’s my post on whether steroid cream r safe http://bit.ly/uYPmMu They are if use as prescribed.

@PipMacdonald: My friend had great success with cortisone asthma QVar puffer on skin, not inhaled.

@Endeczema: Anyone know anything that works for eczema caused by seasonal/pollen allergies?

@Laurenau: I’d say daily zyrtec for eczema caused by seasonal allergies. My daughter cannot sleep without it; @mycrazybusylife: We use Zyrtec daily.

@DoctorClaudia: Some research shows that Vitamin D supplementation can help with eczema.

@EndEczema: Generally only if your vitamin D level is 30ng/ml or less right? So you should get level tested; @SJApaliski: I am now measuring Vit D levels on atopic dermatitis and asthma patients. @EczemaSupport: What are your general finding over vitamin D measurement? @SJApaliski: Lots of kids and adults with levels less than 30, many less than 20.

@MarcieMom: Q8: It’s also our 1st Price Q! Does your child suffer from allergy? Which allergy and how do you cope?

@AllergyMentor: We have too many allergies to list, which makes finding safe eczema creams harder; @TammySigond: She is allergic to seasonal molds…takes rx for it during fall; @ADRescueWear: Our son has peanut and sesame allergy; @EczemaCompany: Food allergies and some spring seasonal allergies. We avoid the foods, but don’t do anything for the mild seasonal allergies; @Laurenau: My dd has a tree nut allergy,  a “growing out of” egg allergy and lots of environmental & seasonal, amoxiciallan &  intolerances too.

@PipMacdonald: I also steer clear of wheat and excess fruit. I was allergic to lanolin and highly sensitive to creams. Sorbolene cream clogged skin. Best result sea water, light ointments + creams.

@amz4701: Not that we know of yet but were wondering when to have her tested because of her skin issues. She’s 13mo now; @OneSpot_Allergy: My son is peanut and nut allergic. 100% avoidance even in trace amounts, EpiPen at hand always.

@EndEczema: Kid allergic to wheat, eggs, dairy, legumes, beef etc. etc. We only let her eat about 12 things; @MarcieMom: Is your kid positively allergic to the food? Report warn of over-elimination, so do be careful. @EndEczema: Yes, according to skin prick test.

@Sweetmatcha: Allergy to cashews. We just need to avoid all foods that have been processed at a nut facility; @CorinneWrites: My son has mild eczema and allergies to milk, egg whites and peanuts. He’s still 13 mo so avoid all those foods now; @Fayrahim: My DD has done RAST ImmunoCAP. She is Class 4 Dustmites and Class 2 Casein.

@MarcieMom: While we’re still taking answers for Q8 on allergy, the floor is thrown open for experts to answer your questions!

@OneSpot_Allergy: I haven’t looked into cocoa, but I feel coconut & shea are safe. Explained here (on shea) and here (on coconut).

@DoctorClaudia: Avoid any harsh detergents, artificial fragrances and D&C colorants in products.

@EczemaSupport: If you think laundry detergent makes eczema worse – don’t forget to use extra rinse cycle on washing machine.

@DoctorClaudia: Atopic eczema affects 1-3% of adults & 10-20% of children and the numbers are growing, see link  Usually children outgrow eczema by puberty; @EczemaSupport: 10% carry eczema to adulthood.

@MarcieMom: On the question of filaggrin leading to asthma, refer to this post on outside-in hypothesis relating to defective skin barrier.

@DoctorClaudia: Filaggrin mutations are linked with asthma, hay fever, peanut allergies, ichthyosis vulgaris & eczema http://bit.ly/wMcit1; How hormones as in pregnancy can trigger eczema here; Info on eczema and gene here and here; Low-down on Vitamin D here  

@OneSpot_Allergy: I give you all the highest praise, for your resourcefulness and the extent you go to comfort your kids.

@EczemaCompany: @Laurenau Congrats to our Q8 winner!

@MarcieMom: Thank you everyone for joining! Selected tweets will be posted on eczemablues.com for benefit of all, keep following and tweeting us

@MarcieMom: Yikes! I forgot, for everyone who wants my A to Z Animals book because you joined the party, em [email protected]

Categories
Support Group

Eucerin’s Facebook Sales Fund Raising for Singapore Eczema Fund

Eucerin is running a fund raising for Singapore Eczema Fund where 20% of the total sales proceeds from the sales of their set of Eucerin Aquaporin UVA (40ml) + Aquaporin Eye (15ml) products will be donated to the eczema fund!

What’s even better is that they are selling it over their very active Facebook page, of over 13,000 fans, and it’s at the price of $50 instead of the usual $75!

What’s even even better is that I will be matching their donation with advertising space on this blog, since all proceeds from advertising on my blog goes to this eczema fund anyway!

Personally, I think this is very neat harmony of charity and social media for the promotion of skincare products/brand that’s relevant to eczema patients. Thank you to the brand manager of Eucerin for contacting me and being proactive in helping the needy eczema community in Singapore!

note: MarcieMom did not receive any money for this post or for participation in this charity drive, which last till 20 April 2012.

Categories
Support Group

#4Eczema Twitter Party – Connect with our Experts!

It’s less than a week to our #4Eczema Twitter Party on 16 March 9pm EST! We can’t wait to chat on What Works for your Child’s Eczema! Do start following our panelists @MarcieMom @ScratchMeNot @EczemaCompany @EczemaSupport and also our Eczema Experts who will be joining in to help!

To help to get you know our experts better, here’s a little more about them!

Elizabeth Goldenberg is the founder of Onespot™Allergy, a Canadian lawyer and the mother of two sons, one of whom is severely allergic to peanuts and tree nuts. Elizabeth has a gift for communicating about allergy law and allergy safety and reaches one million people per month through her blog, her retail site, newsletter, Facebook and Twitter. She has been interviewed on CBC News, Rogers Daytime and contributed to TheMarkNews.com, which feeds to major news outlets such as The Globe and Mail and Today’s Parent magazine. She is a powerful and trusted voice speaking to food allergic and gluten free consumers, and is the Brand Advocate for a very select group of partners. Follow Elizabeth Goldenberg at twitter.com/onespot_allergy

 

Dr. Claudia Aguirre

Dr Claudia Aguirre is the neuro-scientist turned skincare professional who is an industry expert at  The International Dermal Institute that trains over 75,000 professional skin therapists annually.

She is passionate about skincare and has given talks nationwide in United States, including the recent “Brain-Skin Connection” and writes on skincare at dermalinstitute.com. Follow Dr. Claudia Aguirre at twitter.com/doctorclaudia

And not forgetting to introduce you to one of our panelists @EczemaSupport, who has contributed much to the support of eczema patients and carers of eczema children over Twitter.

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Amanda Roberts, the lady twittering for @EczemaSupport

Amanda Roberts is the lady who listens and writes to over 3,000 followers over Twitter for the Nottingham Support Group for Carers of Children with Eczema (NSGCCE) under the name @EczemaSupport. Nottingham Support Group for Carers of Children with Eczema has direct access to some very skilled people who have devoted their lives to the cause. Click here to see profiles on the people behind the NSGCCE, which provides information leaflets and notices, and supports the eczema community through amongst others, twitter and facebook.

All our panelists and experts will be giving their own unbiased opinion during the party, do start sending in your questions through the comments!

Once again, check out the #4Eczema Twitter Party post and take note of the party details!

Eczema Twitter Party Details:

Topic – What Works! for Child’s Eczema

Time – Friday, March 16, 2012 at 9-10 PM Eastern (8-9 PM Central, 7-8 PM Mountain, 6-7 PM Pacific, 2 AM 17 Mar GMT, check your timezone here)

Hashtag#4Eczema

Custom Tweetgrid – http://bit.ly/Aui9se

Help to Retweet this to your followers to spread the word, thank you and chat with you on 16 March!

[tweetbox width=”550″ height=”60″ label=”Tell Your Followers about #4Eczema Twitter Party!” content=”Join #4Eczema Twitter Party 16 March 9-10pm EST as we chat What Works for Eczema! RSVP at http://bit.ly/AAJcuE Pls RT @MarcieMom”]

Update on 15 March – Our latest Allergy and Asthma Expert

Dr Stephen J Apaliski

Dr. Stephen Apaliski is a Board Certified in Allergy & Immunology as well as Pediatrics. In addition, he is a Fellow of the American College of Allergy and Immunology and a Board Member of the Allergy and Asthma Foundation of America—North Texas chapter. He is also certified by the Association of Clinical Research Professionals as a Certified Physician Investigator.

After 30 years practicing medicine, more than 20 as an asthma specialist, Dr. Apaliski decided to write a book sharing the seven principles he has seen help his asthma patients time and again. Follow Dr Stephen @SJApaliski

 

Categories
Support Group

Eczema Twitter Party! Friday, 16 March 2012 9pm EST #4Eczema

Join Us for a Eczema Twitter Party that comes with gifts proudly sponsored by ScratchMeNot and EczemaCompany

Both ScratchMeNot and Eczema Company are set up by passionate moms, whose children have eczema. ScratchMeNot is a PTPA product, clothing that can minimize damage caused by children scratching. Eczema Company is an online store stocked with products that have worked, such as eczema clothing, creams and bath oils.

Join us to share What Works for your child’s eczema!

The Eczema Twitter Party is on Friday, March 16th at 9:00pm EST using #4Eczema

We’ll also be giving away 3 prizes suited for eczema children and winners (from US or Canada) will be selected and contacted by our sponsors.

1st Prize: US$30 store credit at EczemaCompany.com

2nd Prize: 1 ScratchMeNot Classic 3m-3T (Winner specifies whether for a boy or girl)

3rd Prize: ZeeSpot – 100% Organic Onesie (Winner specifies whether for a boy or girl, may be short or long sleeve depending on the size)

 

 

 

 

 

 

 

 

 

 

 

 

Winners will be contacted by email, so do RSVP so that we’ll have your email (but you don’t have to RSVP to join the party). For everyone who participated in the chat, email me after the twitter party at [email protected] for your free picture ebook ‘A to Z Animals are not Scratching!‘ worth US$1.99, a picture book for you to read with your child and encourage him/her not to scratch!

Eczema Twitter Party Details:

Topic – What Works! for Child’s Eczema

Time – Friday, March 16, 2012 at 9-10 PM Eastern (8-9 PM Central, 7-8 PM Mountain, 6-7 PM Pacific,1 2 AM 17 Mar GMT, check your timezone here)

Hashtag#4Eczema

Custom Tweetgrid – http://bit.ly/Aui9se

Panelists – @ScratchMeNot, @EczemaCompany, @MarcieMom, @EczemaSupport (Start following the panelists before the party, who always have great advice on eczema! A note to all participants – each panelist will be giving her own unbias view during the twitter party and did not receive any compensation from each other for this party.)

RSVP – by adding in ‘link title’ your twittle handle (i.e. @MarcieMom), email, and state in ‘your url’ your twitter web address  (i.e. http://twitter.com/MarcieMom) below! A note on your email: You may be contacted by our sponsors on the latest in their stores and will definitely be notified by them if you win their prize!

RT – You can help to make the party merrier by spreading word to your followers on twitter, we really look forward to sharing about eczema to more people! We take child’s eczema seriously and start asking your questions in comments below or tweet @MarcieMom #4Eczema
[tweetbox width=”550″ height=”60″ label=”Tell Your Followers about #4Eczema Twitter Party!” content=”Join #4Eczema Twitter Party 16 March 9-10pm EST as we chat What Works for Eczema! RSVP at http://bit.ly/AAJcuE Pls RT @MarcieMom”]

 

Categories
Support Group

New to Twitter Party?

I’m hosting a #4Eczema Twitter Party and I thought I’d write a short post so that no one will be intimidated to join (esp. parents of eczema children, who may just be too busy to catch up on the twitter party scene).

What’s a Twitter Party?
Simply put, it’s a gathering of people using twitter to discuss a common topic at the designated time. So, the most important two things are to know 1) the hashtag for the party, e.g #4Eczema and 2) the date & time (and do get the timezone right!)

What’s the Customized TweetGrid?
An example of a customized tweetgrid is in the picture above. It’s really for your convenience where the hashtag for the party is already keyed into the 1st column, the panelists in the 2nd column and you key in your own twitter name in the 3rd column. It’s the same thing if you log onto Tweet Grid directly, and key in the info on their party page. The most primitive way is to see the #hashtag tweets on twitter, but then you have to refresh it every time and key in the hashtag manually -versus it’s already keyed in right at the top.

Steps to Take:

1. 1st – Open a Twitter Account
This is basic, if you don’t have a twitter account, you can’t join a twitter party.
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2. 2nd – Use aTweeter Platform
As explained above, this will save you time to refresh and key in hashtag everytime, plus you can see the tweets more easily in a multi-column layout. If the tweets are moving so fast off your screen, you can click the ‘Stop’ button to catch a breather and compose your tweet. Recommend using TweetGrid and feel free to use the customized tweetgrid. Remember to log in!
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3. 3rd – Tweet
Participate, jump in and tweet! Twitter itself is a friendly platform and a twitter party with an objective to share and learn is a fun and safe place to tweet. Follow the panelists before the party and feel free to start asking questions such as “@MarcieMom I like to learn which cradlecap shampoo works! #4Eczema”
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4. Last but not Least – Prize
If you’re contacted for a prize you’ve won from the sponsors of the event, be happy and nice to work with them on receiving your prize. May need your address if they’re sending prizes to you.
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5. Before you forget – RSVP for the event
It’s super easy to insert your twitter handle (e.g. @MarcieMom), email and url (e.g. http://twitter.com/MarcieMom). RSVP will let the panelists know you before the party, feature your name in the twitter party blog post and sometimes, even entitle you to free gifts!
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Have fun and no worries, you’ll be an expert in this in no time.
Categories
Support Group

Join me for Long John Silvers Breakfast on 11 Feb, 930am

Tiong Bahru Plaza

It’s time for our 3rd support group meeting and it’s scheduled on 11 Feb (Saturday), 9.30-10.30am at Long John Silvers, 1st floor of Tiong Bahru Plaza (see pictures on left). I’ll be there with my hubby and baby and as always, have sticker packs ready to occupy your child. Appreciate if you RSVP by 9 Feb to mommarcie[at]gmail.com. See you!

Long John Silvers Breakfast Meeting:

Date – 11 Feb (Saturday); Time –9.30 to 10.30am

Venue – Tiong Bahru Plaza 302 Tiong Bahru Road, #01-31, Singapore 168732

Categories
Support Group

Eczema meets Chickenpox

My girl, two year old, just passed the 14 days medical certificate required for chickenpox. With some sanity finally restored in the house, I could post a short account of what happened.

Before the 1st Day of Chickenpox

Actually, her pre-school already had a round of toddlers getting chickenpox and the teachers thought Marcie’s tiny red spots somewhat resembled what the other kids got. I took her to the doctor and he said it’s eczema and not chickenpox. To me, she normally didn’t have so many tiny red spots but it clearly didn’t look like chickenpox. Here’s her picture during this period.

Marcie posing under a christmas tree in a mall (and I’m surprised she knew how to pose!)

First 3 Days of Chickenpox

About 15 days later, we noticed her high fever and red spots clearly didn’t look normal. Brought her to doctor and confirmed chickenpox. Though she had fever, felt very hot at night, she managed to retain her good spirits and appetite. The chickenpox started on her face and neck.

Next 7 Days of Chickenpox

These were the days when it got worse – the chickenpox itch and the eczema itch. Parts of her skin which normally were fine started becoming dry, peeling and turning reddish – brought back memories when her eczema was severe. The chickenpox spread to the whole body and we had to cool her down by letting her play in the indoor playpool. I think most people don’t bathe and limit spreading lotion/water from one part of the body to the other, but with Marcie, we bathed and moisturized her as usual. We did apply calamine lotion and gave her anti-itch syrup from doctor.

Frog Play Pool

After 14 Days

This is a picture of her, finally able to go out, happily playing with a number-block book while waiting for her noodles!

Finally! There’re pox scars everywhere but as long as it’s not itchy, I’m glad.
Categories
Support Group

First Eczema Fund in Singapore

Asthma and Allergy Association of Singapore

I’ve always been passionate about helping children with eczema, particularly those from low income families. For the low income, they may not be active online and thus, may not benefit from my blog, my children book or my support group mailing group. Thus, I’ve specially designed 2012 calendars for distribution in hospitals and also make sure that I’m available to meet every two months at convenient and inexpensive locations. NOW, finally, the eczema fund has started and can directly help the low income with their eczema treatment!

FAQ on Eczema Financial Assistance Scheme

1. How did it get started?

There’s no eczema fund in Singapore and in July 2011, I got to know Dr Liew, President of Asthma Association (AA), through Chris who’s running a blog for parents with allergy kids.  I indicated to Dr Liew that I’d like to subsidize the cost of moisturizers for low income children with eczema but I haven’t found a suitable organization to administer the money. The AA is founded in 1993 by doctors and has in place a fund to help low income asthma patients. Dr Liew sought approval from the executive committee and got approval in September 2011 for the go-ahead of the eczema fund.

2. How can it help Eczema patients?

The fund will subsidize treatment for low income eczema patients, and is currently extended to include adults. From January 2012, patients who are Singapore citizen/permanent resident with eczema (only) confirmed by dermatologist can work with the hospital’s medical social worker to apply for the fund. The patient must be seeking treatment at public hospitals and has explored government medical assistance schemes before applying for the fund.

The fund can help subsidize the cost of treatment that includes topical creams and moisturizers. I imagine this will be a great relief for low income, particularly when moisturizers are not cheap (and not paid for by government). Whenever I think of a child who itches so much, scratches so much yet unable to get the treatment he/she needs, my heart aches. Morevoer, if the parent is uneducated, it’s unlikely to know that the child is really suffering and not scratching cos naughty.

3. When does it start?

It already started! I’ve donated the seed money for the fund and anyone interested to do so can email cheque to:

“Asthma and Allergy Association” (also payable to)

14 Robinson Road
# 13-00 Far East Finance Building
Singapore 048545

Indicate Eczema Fund at back of cheque, as the association has another fund for asthma.

If you’ve done so, will you drop a comment here so that I’ll know or email me at mommarcie[at]gmail.com; a BIG THANK YOU from Marcie & me!

Categories
Support Group

One more reason not to Stress your Child

Stress can be a trigger of eczema

Stress is one of the more common triggers of an eczema flare-up. Studies revealed that babies, young children and teenagers all suffer from stress, and usually go unnoticed by the parents.  Stress can come from many sources, such as separation from parents in preschool, academic pressure, peer pressure, knowledge of financial or work difficulties faced by parents, divorce, illness or death in the family and (depressing) world news.

Chronic stress, such as from divorce or death, affects the child more; and note this, stressed parents can pass on the stress to their children.

For an eczema child, stress may trigger a flare-up because

– Stress results in more hormones release, which in turn lead to over-production of cytokines that cause immune cells to release inflammatory substances which sensitive skin is allergic to.

– Stress suppresses the immune system, through the increased level of cortisol produced by the adrenal gland. The skin is less able to produce sufficient defense proteins, making it vulnerable.

–  Stress leads to lower skin cell growth and weakening of the fat/lipid skin barrier, resulting in drier skin. Dry skin is vulnerable to irritant.

Apart from triggering eczema, stress has other negative effects such as

– Impair the connection of brain circuits, resulting in smaller brain, slower learning and poorer memory

– Over-reactive to small problems, resulting in an inability to handle stress

So, how can you tell if your child is stressed?

– Behavioural/Emotional – acting out, refusing to go out, complaining, mood swings/outburst, withdrawn, too shy, fear of failure, worrying all the time, spent time alone, sucking thumb, twirling hair, biting nails, nightmares, clingy/fear being alone, anxiety, irritability, rocking, freezing up, obsessive about objects/food, constantly asking what’s next

– Physical – bed wetting, problem sleeping/eating, stomach ache, headache, regression in toileting, excessive crying, trembling, accident prone, over-react to sudden loud noise, sweaty palms

– Intellectual – Lack of concentration, inability to complete homework

And how do you help your stressed child?

– Establish a routine

– Ensure your child gets plenty of rest, and not ‘hurried’ to too many activities

– Give your child proper nutrition

– Spend time, listening and being there

– Exercise/ share activity with your child

– Encourage your child to keep a journal

2012 update: Read my interview with Stress Free Kids founder Lori Lite on how to reduce stress for kids; Lori has built a business helping kids to be stress free, inspired by her own journey with her children. She was a featured contestant on first season of Shark Tank.

2012 update: Read my interview with psychiatrist with interest in dermatology Dr Christopher Bridgett on his take on stress management for children.

2013 update: Read my interview with neuro-scientist & TEDx speaker Dr Claudia Aguirre on how the brain communicates with the skin.

Categories
Support Group

Is it OK to have Only One Child?

My hubby, Marcie & Me

I’ve struggled with this issue and like to end 2011 with a ‘preliminary’ conclusion. So, as I always do, I research. And based on recent studies, there is no evidence supporting that the only child will fare worse than children with siblings, in fact fare better in areas of achievement and intelligence. Here’s my pros and cons list.

Since, we’re already on the topic of social development; this research shows that eczema child has more behavioral problems (23% vs 5%), shows signs of fearfulness to strangers (40% vs 10%), more dependent on parents (50% vs 10%) and have sleep difficulty (this, we all know, see this post). 25% of eczema children aged 2-13 years old, 39% aged 14-17 years old and 28% aged above 18 years old are teased or bulled due to eczema. Issues usually arise if the eczema is severe, such as bandages are required or the rash looks quite bad that other children avoid the eczema child. The good news is that behavior issues are temporary, usually cease when the eczema got better. Moms of eczema children, although much more stressed, are more empathetic to their children which help to reduce behavioral issues.

And yes, back to my preliminary conclusion – I think I will have only one child, Marcie. I’m not crazy about kids, and the only reason I’d have another child is for fear of Marcie being lonely and orphaned. I’ll make more effort to foster friendships for her and be happy that we can look forward to a close relationship, early retirement and better quality of life (phew! no struggling with incessant scratching for 2nd child)

Categories
Guest Interview Support Group

Building a Vibrant Support Group in Today’s Society

Amanda Roberts, the lady twittering for @EczemaSupport

@MarcieMom met Amanda Roberts, the lady who listens and writes to close to 3,000 followers over Twitter for the Nottingham Support Group for Carers of Children with Eczema (NSGCCE) under the name @EczemaSupport. As MarcieMom has just started the support group for parents, and seeing that @EczemaSupport is so effective in engaging its followers, MarcieMom invited Amanda for a blog interview, so that both support group organizers and members can learn how to partner and build their support groups.

Marcie Mom: Hi Amanda, thank you for taking time to answer my questions. First, tell us a little more about yourself and how you got into twittering for NSGCCE in 2009?

Amanda: Our group, Nottingham Support Groups for Carers of Children with Eczema, was started nearly twenty years ago.  It is a joint initiative between carers of children and health care professionals.  These healthcare professionals have so much knowledge and experience, and have made an impact on eczema services locally and nationally.  Everyone involved works on a voluntary basis. This is lucky because it means we have never had to raise funds from commercial sources, so our information is demonstrably uninfluenced by corporate concerns.

I am just a parent of two boys with eczema.  There is, as you might expect, a family history of atopy – I have eczema, so does my mother: we have asthma, hay fever and anaphylaxis to contend with too.

The group used to meet face to face every other month and we had carers attend from all over the region.  But we knew there was a big need further afield which the meetings were not addressing.  We developed our website and started to move toward providing support and information through web based applications.  Twitter is so appropriate for reaching out to those within the Twitter community who are managing eczema within their family.  It allows us to share and to learn.  Fabulous.

Marcie Mom: In today’s society where nuclear and double-income families are the norm, parents usually find it difficult to find time to meet other parents. Personally, I feel that it’s even more difficult to find secondary caregivers for eczema children because they require more care and attention. Do you think this is a factor that contributes to support groups being difficult to take off?

Amanda: That is a good point.  It has to be a factor.  Meeting a need for eczema support in a time and a location convenient for the carer is one of the advantages we have found with moving to Twitter.

Marcie Mom: Do you think parents prefer to participate in private group mails where only other members of the same support group can view or do you think they prefer public forums?

Amanda: Parents and carers will have different feelings about this, and it will depend in part on what they want to discuss.  There has to be a place for both scenarios. It is not necessary for a support group to provide both but if a person responds in a private group setting, they should be able to trust that their response will not be broadcast outside the group.

Marcie Mom: What advice would you give to someone like me who is trying to grow a support group?

Amanda: Growing a support group takes time and dedication; ideally you need a team to share the burden.  Your situation will be different to ours, but we have been really lucky to have a group of people who have put long hours on an ongoing basis, into a variety of tasks and the group has grown and adapted to things.

Marcie Mom: From your experience, what do you think a support group member can do to contribute to the support group he/she is in?

Amanda: Support group members contribute by just being part of the group.  Everyone is different, with different experiences and family needs.  Sharing and learning from everyone else’s experiences has to be the value of support groups.  Some may have skills they wish to contribute (which is great but not something that should be expected).

Marcie Mom: Here’s the last question that I’m very passionate about. I organize face-to-face meetings and usually at affordable places near to public train stations because I want families that can’t afford cars to also be part of the group. It’s the same reason why I print the calendars to be distributed free in hospitals – Lower income parents may not have the time/resource to connect online. What do you think support group organizers can do to reach out to this group?

Amanda: Undoubtedly hard to reach groups will need support.  Personally I am very wary of solutions being imposed from outside, however.  It is important that we are alert to opportunities to help, support and facilitate such solutions – but the start has to come from within.

Marcie Mom: Thanks Amanda for this interview and supporting me with encouragements over twitter.

Categories
Support Group

Do Low Income Eczema Children Suffer More?

Prevalence of Eczema in Singapore SchoolchildrenWe all know the cost that goes into managing our children’s eczema, it’s not only expensive, it is also stressful for the parents. Have you wondered how much worse off you would cope if you can’t afford moisturizers, can’t afford specialist treatment, can’t afford bath oils and have to take two jobs to make ends meet? This has been a burden in my heart ever since my baby has eczema, I’m thinking “How do low income eczema children cope? Do they end up overusing steroid cream? Do they even seek a treatment or even know that their children are suffering from eczema?”

In a study conducted as part of Phase 1 of the International Study of Asthma and Allergies in Childhood (ISAAC), it is observed that “children in lower socioeconomic groups tended to have more severe atopic disease”. Phase 1 was conducted in 1994, so $1k is considered as low income, and children in this income group experienced the highest incidence of persistent rash without clearing. (I wish I could find Phase 3 study online but I couldn’t get any information except that eczema increased from 1994 to 2001). In a study conducted in US, it was also noted a higher prevalence of eczema for low-income individuals, coupled with a low rate of physician diagnosis.

I am working with a non-profit in Singapore to set up an eczema fund to pay for the cost of moisturizers for low income eczema children. Will update everyone when the fund is ready, target sometime early 2012; if you are interested in contributing (even your two cents) to the fund, do email me, thanks!

January 2012 update: Singapore eczema fund set up here

Side note: Although there are many moisturizers that are super expensive, as they contain ceramides, lipids, anti-inflammatory properties, there are also basic ones that trap and retain moisture. Refer to this post series on moisturizer selection, and the most important choice for moisturizer (other than one which does not irritate your skin) is one that you can use comfortably (in the context of being affordable and feels comfortable on your child’s skin)

Categories
Support Group

Will daycare help protect your eczema child from allergy and asthma?

Allergic March – Starting with Eczema

I believe all parents with eczema children struggled with sending their children to daycare. I know I did, when I sent my baby girl Marcie to daycare when she’s 11 months old. Apart from worrying that daycare teachers can’t take care of her, given the constant scratching and attention required, I also worry that she will fall sick more often, resulting in asthma. Are these worries valid?

There is no conclusive research on daycare’s protection against nor causing allergy and asthma. As far as I gather, various studies’ conclusion are mixed as below:

1. A German study reviewed 3,097 children from birth to 6 years old and noted that children who attended daycare in the first two years also had more chances of eczema. This was from tracking children in East versus West Germany, as 52% of children attended daycare in the East versus only 6% in the West.

2. Another study showed that children who attended daycare early (between 6 to 12 months) had lower allergy antibodies, meaning less likely to develop food or nasal allergy. However, there was a higher incidence of respiratory tract infection, i.e. more wheezing.

3. Another study showed that children who attended daycare early were 75% less likely to develop asthma by 5 years old. However, if daycare was started after the child turned 2 years old, there were 3 times more allergy problems.

4. Another study showed that by 8 years old, daycare or no daycare had no impact on allergy/asthma.

How do we decide on daycare’s impact on allergic march when we still don’t know the cause? Based on the 4-part series, you’ll see that there is no one clear cause of eczema. If it’s the skin barrier, then you may decide to take care of your child yourself to make 100% sure that her skin is protected by moisturizing. If it’s the immune system, you may hope that sending your child to daycare will strengthen her immunity (though as you see above, there’s no conclusion). Moreover, eczema is a skin condition with multiple factors influencing the outcome, so it is hard to isolate a single cause to focus on.

So what do you base the daycare decision on? Personally, I don’t base it on impact on allergy/asthma. I base it on other factors, like whether she’s taken care of at the daycare, whether they pay attention to moisturizing and disinfecting her skin, whether I want or need to go back to work. The allergic march, which is the progression from eczema, to allergy and asthma, is also dependent on the severity of eczema (the more severe, the more likely to have allergy/asthma) and the whether the child has both eczema and allergy (then more likely to have asthma).

I know.. tough letting someone else take care of our eczema children, wondering if she scratches more, stresses more (which trigger more scratching) because someone else is taking care of them.