Monday, December 28, 2009

My Child's Pain

This is the girl who used to be my daughter. She was beautiful and happy and perfect. This was at the end of July.






By August her skin started to change. It was just in a few places. You can see it on her inner arms. She still looks like a beautiful, happy girl.




By October her skin looked horrible. This is part of why I stopped blogging. My daugter doesn't look like herself anymore. Her skin is a mess. I had stopped taking photos of her. In time I started getting used to the way she looked and took lots of photos, trying to get one that looked okay enough to post. If you look at the December photos I posted here you will see and you'll notice in almost every photo she is scratching.



You see a very different little girl here. My daughter now looks ill, like something is wrong with her. Everyone around us sees it. It hurts my heart to see her like this. She is not the happy, beautiful, perfect little girl that she used to be. She is itchy and scratches all the time. She is stressed. She tells me that the eczema is the worst thing that has ever happened to her.

Through the last few months I have tried homeopathy alone to deal with this. We have tried removing possible allergens. We apply jojoba oil twice a day. Still there are countless flakes of skin everywhere. The homeopath says it could take six months or more to heal with homeopathy. Princess' skin has improved in some ways. There are no more painful and seeping wounds. But it is now covering her entire body head to toe. Her skin is so dry it is scaly and rough. Her hands look older than my hands. She has scabs from scratching. I can't keep watching her suffer this way. I wish that I could take this onto my own body. I don't know what the right answer is. Steroids scare me. There are a few more things to try and we have an appointment today with someone. I also plan to call a pediatric dermatologist, but am a little hesitant. I will call and see what they have to offer.
Being a mom is so hard, especially with something like this. Am I doing the right thing? Is naturopathy the right thing? Is homeopathy the right thing? Are there other solutions? Do I use a combination of things? Do I turn to icky, horrible steroids? I know how awful steriods are. I've used them before and I avoid them now because of my experience. And steroids will only mask the problem by treating the symptom. We need to find the cause.

I'm getting advice, so that's not what I'm looking for here. I have friends who care so much and are trying to be helpful and supportive. I am so grateful for them. I guess I just needed to put it out there.

Thank you for listening.

17 comments:

Secret Mom Thoughts said...

She is beautiful. Sorry she is going through this. Hope you find some answers.

Aliceson said...

Oh Shady Lady, I'm sorry both you and Princess are having to deal with this.

My Mae used to get weird skin things between the ages of 3 and 5. Finally she outgrew it but not before scaring the crap out of us and having a skin biopsy.

Hopefully Princess will get some relief soon! Keeping my fingers crossed for you both!

Kelly said...

Poor baby.

It's so hard to deal with an illness that is caused (in part) by stress.

Cosmic hugs and kisses to you and Princess.

*P.S. You've probably already tried this, but I have a friend whose eczema is relieved by eliminating dairy. Maybe?

5orangepotatoes said...

Oh my goodness Shady....she is a worrier isn't she? I'm so sorry for the poor little thing (and you). Sounds to me that you are going to all the experts, which is what I would do too. Try them all and go with your gut with what you feel is best. Thinking of you both.
lisa

ps- dry skin or no, that little girl is beautiful(in & out). Those eyes just sparkle!

Shady Lady said...

Thank you, ladies...

I know she is beautiful. It's just hard to watch her suffer. She seems to have lost herself.

We have tried removing dairy and it didn't seem to help. Today we went down a new road.

We saw someone who specializes in allergies, but not the traditional way. This woman does muscle testing and has a technique for clearing allergies (as in getting rid of allergies). Princess tested allergic to wheat/gluten, dairy, prune juice, water, and her own fluids (saliva/sweat).

We are currently working to clear wheat/gluten. It takes about 24 hours. This is so bizarre, but this woman has excellent results.

I will keep you all posted!

Erica said...

(((HUGS))) I have dealt with eczema with 2 of my boys. It's not fun and it is painful and frustrating for them. Oliver would scratch his head, legs, and arms until they would bleed and ooze. So I understand where you are coming from.

When it comes to eliminating foods, like dairy, it can take weeks for them to get out of her system. Also gluten is another biggie for eczema. We are not 100% gluten free, but I certainly notice when Oliver has eaten it. So that may be an option. He seems to be "growing out of it".

You can also try offering her a high quality cod liver oil such as Blue Ice Fermented CLO. It appears expensive, but if it helps, it is worth it's weight in gold. It is what we use. Adding those omegas into her diet, can help with eczema.

We also use cetaphil cream, almost every day. When itching gets out of control, we use an over the counter hydrocortisone cream. Just a plain jane one free of dyes and perfumes. You have to check them carefully.

I prefer the most natural ways possible to dealing with most things, but I ran out of ideas when it came to Oliver's eczema and this is what we use and I'm okay with that. I became scared of infections with having broken skin almost all the time.

The pediatric dermatologist will more than likely RX some creams, and if you use them it's up to you. It's very hard to watch your child suffer.

Good luck and keep us updated!

Zayna said...

A parent's nightmare...seeing your child in pain and feeling helpless.

Sending you both big hugs.

Sherry said...

hugs!

Shady Lady said...

Erica, thank you so much for your feedback. Most of the things you have suggested are things we have tried or are doing (like the CLO). I am doing all I can to avoid steroids.

We started working with an allergy specialist yesterday and I am feeling hopeful. It's so very confusing when you get such different answers from different professionals. The homeopath was certain that it isn't food allergies, the allergy specialist is 98% certain that it is. sigh

We have an appointment set up with the pediatric dermatologist, but if her solution is a Rx we will walk out and not go back.

I am feeling hopeful about our work with the allergy specialist. I will keep you posted.

And thanks so much for stopping by my blog!

Zayna and Sherry, thank you so much for the hugs. They are always appreciated.

Magic and Mayhem said...

Oh poor sweetie! I forwarded this link to a good friend who went through hell with similar stuff when her youngest was a baby. He had a terrible, terrible case that would bleed. She educated herself and tried many things and her son is so much better at this point. I thought she might have suggestions.

I have heard so much related to allergies and eczema. So many people have had good results with finding hidden allergens but I know it's such a frustrating mystery. Have you read "Is This Your Child?" and "Is This Your Child's World?" by Doris Rupp (I believe)? Those are excellent books at figuring out hidden sensitivities and working through elimination diets.

I hope the new appointments bring lots of information and help. Hugs to you both!
~Alicia

Dan said...

I would take her to see a doctor. Try what they are offering. if it works and the side effects are tollerable then stick with it. If it doesn't or they are not then got back to alternative medicine.

If she's that miserable then it's worth a shot.

Dan said...

You know what - you didn't really want me to write that. you are obviously concerned for your child and have a different viewpoint of alternative medicine from me. And I was rude to come into your comments and start suggesting stuff.

I apologise. I'm sure whatever you do will be right for you and your family.

Shady Lady said...

Alicia, thanks for your feedback. We are uncovering a lot of hidden allergies with the specialist we're seeing. She uses this technique http://naet.com/ which uncovered much more than the blood test. I will keep everyone posted about the outcome.

Dan, thanks for your thoughts. Yes, I do prefer the alternative route and will use a doctor as a last resort. I did some research on the side effects of Rx steroid creams. That is not a route I want to take unless nothing else works. Thanks for the apology. That was very kind.

Risa said...

Hi Shady Lady; I'm the friend of Alicia's she mentioned whose child as an infant had about the worst case of eczema you can imagine. You have my sympathy--eczema is a PITA, really hard to treat, poorly understood by others (so you don't get much sympathy or understanding) and can alter the entire family's lifestyle for a while. Here's our experience, and perhaps some of it will help you.

My son started developing a rash at about 4-6 weeks of age, but we thought little of it, assuming it was baby acne like his older brother had experienced. By the time we took him in to a doctor--about 2 months of age--it was clear something else was going on: it was an awful oozy, sticky, yellow / red rash that just wouldn't go away. We were sent to a mainstream pediatric dermatologist specialist, who looked at him for about 5 minutes, said his eczema was severe, and that we'd need to slather him in steroid cream, head to toe, probably more than once a day, for the rest of his life. I asked about the possibility of allergies, food sensitivities, etc. and was flatly told that they "had been shown to be unrelated to eczema." I also asked about other treatment options and was told "there are none."

Risa said...

Now understand hubby and I are very mainstream educated (him in science to boot), but even we felt we had little to lose (other than time or money) by looking into other "alternative" options, since steroid cream had known negative side effects. We did, however, use our son as a bit of a guinea pig, applying the cream to his right leg and arm only. And it did indeed clear up the eczema in those areas in a few days. We then stopped the cream, and within 3 days the rash was back. So now that it was clear to us that we were only suppressing symptoms, but not actually treating or solving the problem, we headed to a naturopath.

The naturopath had us do a whole variety of things; in the interest of our child, who was suffering, we followed all advice simultaneously instead of a "one thing at a time" like a controlled variable scientific experiment. We used homeopathy (graphites), made dietary changes (citrus and tomato proved in time to be big triggers), changed laundry soap (no perfumes or dye), dressed him in 100% cotton only, dusted and vacuumed his room more diligently, bought high quality air filters (he also has asthma), tried different creams (Aquaphor, designed originally for the oozy skin of burn victims, was the ONLY product that actually worked--nothing else even stayed on his skin), etc. We saw a HUGE improvement in time (saw some improvement within 3-5 days, and more after weeks and months). And most interestingly to us, the last place on his body to clear of rash was the right arm and leg--i.e., where we applied the steroid cream. Immune system suppressant, you say? :-)

At about 1 year of age, we had him tested for allergies (both conventional skin prick test and alternative muscle testing), and both tests agreed--he had TONS of food allergies / sensitivities. (I wouldn't tell the alternative tester the results of the skin prick test, wanting to do a little science experiment of my own ). From this we did NAET, which I see you found, and it also helped tremendously.

Risa said...

Today I have a nearly 5 year old boy who is pretty robust and healthy. The eczema (and allergies and asthma) can still flare, but life is now manageable: we can travel, eat in restaurants, visit friends with pets. He was 2 1/2 years old before he wore shorts and T-shirts in the summer: he now plays soccer and we go swimming! But I do have to watch to keep him in check. Now that his immune system is developed, I do use mainstream meds (Benadryl, steroid cream, asthma inhaler) at times: we came to the conclusion that we'd done what we could for him during the critical period when his immune system was forming (roughly til age 2) but the idea of everyone having a miserable vacation because of him crying from the itchies at night, or never going on nature walks due to his allergies, just wasn't fair to the rest of the family. But we use these VERY sparingly, and only to nip things in the bud (I have also learned that a small amount applied early saves a LOT of pain for him and/or more meds later on). Hopefully your daughter won't need that, but I thought I'd throw it out there. We're not an all-or-nothing family--but again, you gotta do what is in accordance with your own beliefs.

And that was the big lesson of the eczema: trust yourself. IME and IMHO, the reason mainstream med has such a hard time with this illness is that it is different for everyone: different triggers, different symptoms, it even presents differently on my son at different times of the year or in different contexts. He can now eat citrus and tomato in small amounts without problems, but if he does so while traveling (with other different foods, routines, laundry soap in bedding, more time outside, etc.) he often flares. It's like we have to keep his general system level of irritation below a certain point. So trust your own sense of what is causing your daughter problems, test it, and move on. You WILL figure out how to manage HER condition, in time...but what you learn in terms of specifics may not help your friend's child who also develops eczema.

Hope that helps. And good luck!

Shady Lady said...

Risa,
Thank you so much for sharing your experience. Hearing that you are doing a lot of what we are just starting to try and have been trying gives me hope. NAET is really kind of out there, even for me, but I have heard good things about it. The one thing that we must stick with is using oils for moisture. Princess freaks when we use creams because they make her feel cold. We even put them on with her sitting in front of a small space heater and she was miserable and crying because she was so cold. This is a girl who has always run warm. We use jojoba oil and the NAET specialist suggested we try sesame oil on one area (her tummy) because sesame oil can draw out toxins.

At first I was convinced that this was not related to allergies, but the stress of the Lizard King going to Afghanistan. I now believe that the stress brought out the allergies. Before this Princess was always a really healthy kid, rarely sick and she was full of energy. I know we will work through this. I just hope that it is sooner rather than later. Thank you again for taking the time to share your experience. It really does help.