How to treat my baby 'normally'

[keresley]

My DS is 13 months with severe excema. I need some advice form other mums whose babies have excema. My ds has to stay in a babygrow as when we dress him- he pulls his trousers up and rips his skin to shreds. We tried to dress him for 1 week but he just did so much damage. He is strarting to look odd now as he is too old to get away with wearing a babygrow all the time. Also he still sleeps in our room (although I desperately want my own room back!) as he gets uncomfortable during the night and we have to carefully regulate the room temperature according to how uncomfortable he is. How can I put him into his own room when I can regulate his suffering so much better when he is in with us?? Any advice??

I dont have any heating on dd's room in the winter, i also use a humidfier. I find if she sleeps anywhere but her own bed (with all the anti dustmite bedding etc) she sleeps awful, especially with the heat from our bodies and our sheets.
We buy her pj's and clothes from cotton comfort.
What medication/creams/treatments are you using?

God heart goes out to you. I had very similar problems. Have you considered using Tubigrip bandages. I had to wet wrap DS but for ages after I used to use the tubigrip bandages dry. I have eczema and I found wraping it tightly in bandages helped with the itch.

Have to go baby crying.

Will post other ideas later.

Could you put a pair of dungarees over the babygrow, or would he get too hot?

Try this site for excema clothing. They do babygro type suits for underneath clothes aswell.
here

i used to put dd1 in dungerees with tights underneath.

have you check www.eczemaclothing.com for clothes?

My heart goes out to you. My DS1 had this as a baby up until about 2 years ago (he is 6) Do you have a water softener? My GP suggested we get one and this really helped my DS1 's excema. I also foud that giving fish oil has helped his skin. When he was really itchy in the summer I gave him piriton to reduce the itching and help him sleep but I would ask your doctor before you try this one. I also used to use the steroid cream every day to keep it under control and when it was really bad antibiotic cream also helped as often the raw skin carries infection which stops it healing

probiotics and a fish oil supplement worked wonders for my son, if you haven't tried it yet might help. We had a thermostatic radiator in the bedroom so the temperature of that room could be different to the rest of the house. Sorry no other ideas.

No experience of this sorry, and very sorry to hear of your problems

Just to say though that JoJo Maman Bebe had footed leggings in their winter catalogue, that might help? My DS wore these until 18 months.

excema is awful,I really feel for you.

My ds had quite bad excema and the only thing that

helped,and we did try most things(probiotics/fish

oil/all sorts of creams, but steroids and antihistamine helped control it when it got really bad.

I was lucky and was referred to the local hospital dermatology clinic which we could go to if we were having a flare up.That was a real godsend,both physically and emotionally.They reassured me that the steroids wouldn't harm ds or thin his skin. They didn't get rid of it completely but improved it a lot.

As for clothes ,we wet wrapped ds and just put loose clothes on the top.

Go and see your dr if it's getting too much!It is emotionally draining for the whole family and the more support you get the better.

as for sleeping I found a really light weight sleeping bag from tchibo that stopped him getting to his legs.His face was always bleeding in the morning during a flare up.

On a more positive note ds is now 3y5m and his excema has virtually gone!He's got asthma now instead

keresley

I dont have any advise, but I believe you can claim disibility for severe excema,(opoligies if you are already) to help with the costly things you need.

DD has terrible eczema. I'd second the suggestion for contacting eczemaclothing. Dd's eczema is getting better but she does rips herself to shreds. She had it really bad on her face and used to try and use any sort of 'weapon' to scratch- she used the pram straps and all sorts. I know that what I do seems severe but once you're in the swing then it isn't really.
We have a fairly strict routine of creaming her up several times a day and aveeno in the bath plus i put moisturiser on her BEFORE putting her in the bath as the water itself can be drying. At night if i notice her scratching (we co-sleep) then i try and get some cream on her before she wakes properly so she goes back to sleep much quicker.
We rehomed the dog(extreme I know but I believe it really helped and even though it nearly killed me to do it in the end I had to put dd's health first)
We moved house to a house with no double glazing (not as a result of the eczema btw- it just happened that way) I think this new house is really draughty and it helps that there's a draught running through. (If I had double glazing i'd be tempted to leave it on one bar open during the day.
I have the allergy quilts and mattress protector on her bed and my bed and change the sheets every 2 or 3 days. I leave the quilt folded back on the bed during the day and only cover the whole bed at night. This helps with dustmites and bed bugs apparently

Pixiefish - i totally agree.
We rehomed dog but dd has pretty severe allergic reactions to anything which is slightly furry and still breathing, even wool for godsake!
Her room is freezing, but a sniff of the central heating and the results are dreadful.
DD uses aveeno in the bath and aveeno moisturiser and steroids but has also started using a new non-steroid cream which has worked wonders.
Its about trying everything, not giving up and eventually you find something that works for you, good luck keresley, i sympathise with you, it isnt easy at all.

At 13 months you can do the following:

flax seed oil
probiotic powder
crushed up antihistamine tablet (such as zyrtec), if the itchy stops, the scratching stops and the skin improves.

Thank you so much for all your advice. I have already got disability allowance (highest level) for my son and this is a godsend. I do use the excema suits from cotton comfort. Brought a humidifier a week ago- unfortunately ds is in the middle of as flare up so don't know whether is is having a positive outcome yet. Currently looking into a water softner and am thinking of replacing all the carpets in out house with laminate flooring. Will go now and look for those leggings from JoJo Maman Bebe. Thanks again.

can anyone with a child with eczema claim disability allowance??

Millie34 - anyone can apply for DLA. You can down load the form and print it from the Internet. It is a VERY long form- about 30 pages. You need a drs statement (we used our GP) and a second statement from another person closely involved with the child ( i used the child minder). Once the form was sent off, we recieved a letter about a month later saying we had been given DLA at the highest level (there are 3 levels -from £15 to £60 per week)until my ds is three. They also back dated the money to the date that we applied. It has helped so much as we spend every penny on things to help him with his eczema - excema suits, creams, equipment etc. Hope this helps.

keresley - thanks for your reply. u say u get the highest level of allowance. how do they work it out? has your child got the most severe form of eczema, i.e, wet wrapping every day/night, hydrocortisone every day, etc.
thanks

Hi Millie34

We do not wet wrap my ds or use steroids on him. At the time of applying for DLA- he was not under a consultant either.

What we did was list all the costs of things we had brought for him in relation to excema needs- excema clothing, air conditioner units, creams (we use herbal at 15 pounds per pot) etc etc

We then explained on the form the care that he needed over and above an 'ordinary baby' e.g creaming several times a day- care during the night when he wakes up itching, 24 hour care so that he does not destroy his skin through itching.

The letter which said that we had been given DLA said 'you have been given the highest level becuase your son needs help with bodily functions several times during the day and more than once at night'.

I know that the GP said on his form that he thought our DS's excema was severe and re-iterated the care we needed to give him. He also wrote on it that it was impacting on family life and affecting the quality of the parents and baby's life.