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.