Sunday, 9 June 2013

Infantile Eczema - June 2013

What beautiful weather! Amazing! Its great to have it for a while. Rain won't be unwelcome when it does come as the garden and orchard would be thankful :) Lets enjoy it while we can eh? 

As I said in my last post, I have learnt a lot again in the last few weeks. It's a constant study this eczema when you're little one has it. There's no way one can sit and bear it until it has been conquered. I'm sure any other parents out there in the same situation feel the same. As well as the lady on www.solveeczema.org, I also believe it is not random, there is a cause. I can see that in the improvement we've had over the last month. Mr. T has gone from an infected weeping baby with sores to a baby with soft skin on most of his body. We have still not reached our goal though. His face, head, and neck are still flared up everyday (any exposed areas). His itchiness also hasn't lessened. Which of course means that myself and Tom still aren't getting any sleep. A typical night consists of the following:

We give Mr. T a bath every day or every second day, depending on how many allergens he has been exposed to and how flared up he is. Following a suggestion that the itching may be due to a yeast infection we bathe him in an apple cider vinegar solution. (Apple cider vinegar with 'the mother' -Bragg Organic). Apparently steroids make the skin more susceptible to yeast infections. It usually takes two people to bathe him. One to wash him, and one to hold his hands so he doesn't scratch. He has now discovered splashing so it can get messy :) Then we dab him as dry as possible as damp skin makes eczema worse. I then lay him on clean sheets, and one person holds his hands while the other greases him up with first cold press olive/sunflower oil, and Hope's relief intensive moisturiser, and at the same time stops him scratching one leg off the other by putting yourself or your elbows between his legs. Sometimes this is easy and he is happy and relaxed, other times  he gets irritated, impatient, and angry and he screams and roars and wrestles and tries to scratch. 
When we finally have him dressed as cool as possible, but still all covered up so he can't get at himself it's time for his bottle of Neocate at around 8/9pm. It's ideal if one of us goes to bed with him as he falls asleep on top of us, and if you try move him he gets upset and tries scratching. For the rest of the night it is then a cycle of bottles, burping, and stopping him scratching. One of us is usually in the bed with him, while the other person sleeps on the couch to get some respite as the next night is their turn. You have to try catch Mr. T's hunger at night before he gets properly hungry, or else he gets irritated. We have scratchsleeves on him at night, but the friction burns still upset his cheeks which are already irritated from the previous day. While feeding him his bottle I have to use my elbow from the arm holding the bottle between his legs so they don't scratch off each other, and the hand from the arm he's resting on holds his outside hand so that can't scratch. His inside hand is usually tucked in so he can't use that. 
Once his bottle is finished, we burp him. I usually do it with him facing away from me, sitting on one leg with his legs separated over mine to make it safe. I then gently support him by putting my arm around his torso and arms so he can't scratch and so he can lean his head on my arm, and I use my other hand to pat and rub his back. When he has wind he seems to get a lot more irritated and itchy than a usual baby. He tenses up so much it's like he's standing upright, he arches his back, cries, and throws his head around violently in an attempt to scratch it off anything in its reach. All you can do it to keep burping him and talking to him gently and try to stop him throwing himself around too much. Most of the time once he burps he settles down again and goes to sleep. He goes to sleep on top of me again, or very close to me so he's touching me. You then have to position yourself so you're (kinda) comfy, he's comfy and you can stop him scratching in his sleep. In between feeds it's like sleeping with your alarm clock on snooze, as you always have to wake up to stop him itching. If you move away he cries and scratches. It is such a relief when he does actually relax and not get the urge to scratch as the idea of having to restrain an infant is not comforting. In an ideal world he would be sleeping in his own bed by now, but we cannot take the risk. As soon as he's alone at night he would just attack himself. Then at 7am Miss J wakes up, and whoever was sleeping on the couch gets up and takes Mr. T and minds Miss J while whoever was on night duty gets an hour of unbroken sleep until they have to get up. Myself and Tom haven't slept properly or in the same bed in 7 months. It's hard, and exhausting and we both deserve a pat on the back. When Mr. T smiles or giggles or does his cheeky charm it makes it all worthwhile and I live in hope we will find something so all of us can have peaceful nights sleep, most of the time. I'm being realistic here :)

I know this is a detailed description, but I recently read a blog from a lady who was in the same situation as us and she went into detail about what she goes through in her night time routine, and it just helps. It helps you realise you aren't alone, and when a parent gets upset because they have to do this to their beautiful little angel it gives them strength, and calmness. You aren't alone, and you will get your baby through this. You have to be calm, loving and strong. 

Mr. T seems to be so much worse at night and when he's tired. During the day when he's bright and awake he could be considered a normal baby now as long as he's kept away from detergents and his allergens. 

After the last week I have decided that Mr.T's visits to the local shops or to friends houses will have to be stopped for a while. Whenever he's out and about he flares up again. We are trying to work towards not having a flare up for two months as then his skin will have a chance to heal and he will be more resilient. I have been reducing them, but I think they will just have to be stopped altogether. Maybe the beach will be OK, but I think home and garden will have to be entertaining enough for a little while. 

I'm still keeping up with the cleaning thanks to Astrids help :) but there is still a missing link. After a month and a half of getting rid of detergents and supercleaning I know there is still some time to go before I have the house detergent free for him, but I think something else is a factor too. Is it emotional or physical? I'm not sure but I think apart from the itchiness Mr.T is a happy boy. Last week he had a reaction to my coconut oil so I have now removed that from his environment too. I am aware we need to destress more, but with household schedules, and trying to fit in a little more playtime I'm hoping that will happen too. I've been trying to read up and learn more about it all whenever I get a chance and in doing so I came across this page : http://itchylittleworld.com/. 
Along with http://sammysskin.blogspot.ie/, and www.solveeczema.org and general googling I might stumble on something. I have also bought "Healing Psoriasis", a book by John O.A. Pagano which also has advice on how to eat to heal eczema. There I have learnt that a thinning of the intestinal walls happens to eczema sufferers. He advises several teas and foods and also goes through an elimination process. I'll have to have a look how much of it is suitable for a baby of Mr.T's age. For now he's on his usual solids I described in the last post as well as his formula and also dairy free probiotics.  

I have also received emails and phone calls from several people offering advice and suggestions. Thank you so much. We really appreciate it. Maybe you can provide the missing link. I may not have answered you straight away, but I will definitely check out all suggestions made. My only chance to research is at night between feeds so I'll get there eventually :) Once again, thank you, and if anyone has any more ideas or experience as to why night times, and tired times are so bad please send them my way or comment below. Having a look at my previous posts may help as I may have already tried your suggestion in the past.I may not reply straight away, but I am very grateful and will check out every possibility suggested. On top of that I know patience is also the key. I have heard it takes at least 4 months of hard work and change to properly get detergents out of the home. We are only one and a half months in. 

On a trip to the shops two weeks ago I saw a little boy run past myself and Mr.T. I then overheard him say to his mum; "Mum, whats wrong with that baby?" "He looks like that because he's a bit itchy, you were like that too when you were a baby" she said. My brain hit a sort of pause. It's a strange feeling. I totally forgot to ask the lady what helped her help her little boy. All I thought was 'Whats' wrong with him? What's wrong with him? There's nothing wrong with him, he's my perfect little boy. He's just a bit sick." Myself and Tom just want a happy little healthy boy. Little Miss J now has teddies with 'bad eczema' that need to be moisturised all the time, and that are really 'scratchy'. It would be such a relief for her too to overcome this hurdle that she too is a member of. As well as that Tom and I really miss each other and though we are a strong couple, its exhausting. Finding strength to be positive is sometimes hard, I am just lucky to have found someone like him as a partner and as a father to my children. We must remember though that Mr. T is the important person in this. And if you have a baby in the same situation, - it is not his fault. He needs you to do the detective work to help him, and he needs your love and comfort to be able to deal with the suffering he has to go through. We need to change it so that they know what life is like to not be itchy, uncomfortable, and be someone with something 'wrong' with them. 

Saturday, 25 May 2013

Infantile Eczema - May 2013

Mr. T on a good day. Looking generally much better.

Since the last blog entry I tried Hopes relief moisturiser as their dry skin treatment cream was so good. Silly me never read the ingredients, just assumed all was good. Poor Mr.T turned out in a red rash and got very itchy. I checked the ingredients and yup, Shea butter. Bummer. I'd tried Shea butter on him before and he got a reaction, which makes me believe he has a nut allergy too.  We promptly put him in a bath and washed him off and have now resorted back to Salcura Zeoderm for non broken skin and Hopes Relief dry skin rescue for broken skin.
The Zeoderm is nice and greasy but is sore for him if you put it on the open areas, whereas the Hopes Relief seems to give him some immediate relief.

We also discovered from a friend who is similarly allergic to things that the fact he was sleeping in a bed with feather duvets wasn't good. I had been cleaning the sheets at least once a week with either Dr. Bronners soap or  soapnuts and at the same time hoovering and steam cleaning the mattress but then we decided (to Toms dismay :) that we would switch to hollow fibre anti allergen duvet and pillows. We got them cheap enough from our local Heatons. We had hoped that maybe then we would get some sleep but no luck so far.

I have also made sure that Mr.T doesn't come in contact with any cuddly toys except for his two which we got as presents. They are made from organic materials, without chemicals, and have been super washed. 


All of us have ditched the usual hair products, conditioners, shampoos and also moisturisers and have detergent free soap, shampoo, and conditioner now. If I run out I've found bread soda works as shamoo aswell, and cider vinegar works well as conditioner. We now use organic coconut oil as a moisturiser for ourselves. I have found that now that Mr.T isn't exposed to detergents as much he starts getting irritated and itchy when a visitor holds him with 'normal washed' clothes and 'normal washed' hair and skin.


We have also discovered that the following foods are foods he needs to stay away from for the time being until his condition is more controlled:


- Oranges - any citrus

- Strawberries
- Tomatoes, peppers, potatoes - any nightshade family
- Soya
- and obviously the ones previousy discovered - dairy, goats milk,  eggs, fish.

At the moment he still has bottles of Neocate but he has about 2-3 solid meals a day consisting of dairy & egg free baby rice, and either apple or a mixture of sweet potato (not in nightshade family), carrot, kale, broccoli florets & leaves, cleavers, nettles and a pinch of oregano. He absolutely loves it. 


For ourselves, to try stay awake and with it, we trying to eat as healthy as we can as well as supplementing with complex B vitamins, zinc and magnesium as well as drinking my green smoothie and a mix of juiced garlic, ginger, honey and cider vinegar. Its hard to find the time to drink enough water in the day, but I try....


I have also realised that until we have reached a stage where Mr.T isn't going to break out all the time I have to limit trips away from home with him. On a normal trip somewhere the amount of detergent lint and allergens that surround him are insane. Even just being in the car aggravates his skin. I have tried pitting a car clean session into my weekly schedule but so far it has only happened once in the last 3 weeks. If we do go out somewhere, then we bathe him straight after and change our own clothes aswell.


I have some more things I have learned in the last few weeks in our quest against eczema but its getting late now and I'm on night duty so I will write a follow up on this post in the next few days. At least this way if anyone in the same predicament reads this they have some food for thought and ideas to try out. 

Thank you to everyone for reading and sharing this. I really appreciate it, and please, spread the word. We can only keep trying to combat this, and our little ones need our help. They need us to widen our perspectives past what doctors just diagnose as 'incurable infantile eczema'.



Wednesday, 22 May 2013

A little moment.....

I looked out the window tonight as the last daylight was fading and just stopped. I hadn't stopped like that in months. No one around me, nothing I had to do, just reality and I. I noticed things I hadn't had the time to notice over the last year; trees swaying, leaves green and vibrant, clouds moving, birds singing goodnight, a beautiful moon. 

Wow. It's like stress and being busy keeps you strong. Distraction and constant tasks build walls around you. It's a little scary how it all gets crumbly and starts falling away when you stop for a few minutes. It makes you weaker and the exhaustion seeps in. 


It's crazy though. How lucky am I? I walk past those trees everyday and mostly don't even acknowledge them. Yet they are amazing, we are lucky to live in a land so green and full of life and water. I feel very lucky. How did I get here? 5 years ago my life was very different, since then time has flown, and I haven't looked back. Whatever turn I took to get here in life, I'm bloody glad I took it! :)

From a childhood of turmoil and unease which I thought I couldn't break out of, to a life here in the beautiful remote countryside with an amazing family and amazing friends, a man like no other, and two children that have melted my heart. I feel like karma has given me a great big hug and said 'There you go. You deserve it. ' Well thank you. Thank you very much. The weight of my gratitude right now weighs even more than the weight of the hardship in finding my way here. 

We must not underestimate what we can achieve. The mind is an amazing tool of which we still know little about and our bodies are made of much more than we can comprehend. I'm glad I woke up a little just staring out the window. I'd hate to think life just passed me by. It's very short when you think about it. I appreciate everything and the people around me, and most of all I am thankful for the love and lessons my kids have taught me. There is no better way to learn true fear and unconditional love. 

Lets stop and listen to the wind in the trees every once in a while in our busy prioritised lives and think about the ones we love. Whatever the future holds, you have them - whether in spirit or in body. Shake off the disease that is negativity and take just one step at a time towards karma giving you a great big hug. :)