What My Son’s Eczema Has Taught Me About Parenting a Child with Unique Needs

(NOTE: This is a duplicate blog post originally published on http://www.SacramentoParent.com in October 2013. I am sharing it here to reach a broader audience.)

My nine-year old has faced many health challenges in his life, including failure-to-thrive as an infant, seizures through age 4, and food intolerance. However, more recently he has acquired chronic and severe eczema. The last flare-up lasted over six-months due to unknown environmental and food allergies.

My husband and I often ask ourselves why Parker–with the heart and attitude of an angel–must suffer so much. He just wants to be a normal kid and do the things normal kids do.

When his rash began to spread up his neck and onto his face, he also had to endure stares from his classmates and constant comments from strangers such as “Ooo…bad sunburn!” or “What’d he get into?” I even caught a grocery bagger coming up behind us to “sanitize the aisle” after a shopping trip where he was particularly irritated and scratching non-stop as we stood in line.

Thankfully, I was able to pinpoint a few major triggers and after a lot of research, discovered the perfect and individualized combination of natural and prescription remedies to help him heal both inside and out.

After making the difficult and challenging choice to homeschool him for the remainder of the school year, we began finally seeing his condition improve. Today, I am happy to announce my 9-year-old looks great and is back to his old goofy self. He sings and dances in the bathroom as I apply all his creams and ointments post-shower. He can’t wait to be Hawkeye for Halloween and told me earlier this week, “Mom, I do NOT want to be that house that doesn’t give out candy just because I can’t have any!” As soon as he is up for a break from his schoolwork, he is running around the house practicing shooting his arrows.

So what I have learned from all of this?

1. Maybe it’s obvious, but children are resilient. No matter how awful he felt or looked, Parker would still tag along with me on errands, and even to work when needed. Sure, there was a point where he watched a lot of T.V. and didn’t do much. But as soon as his energy returned he was up and ready to face the world. A day doesn’t pass without several hugs and smiles. He knows intuitively I have done all I have in my power to help him get better.

2. People will stare but we don’t have to care. Parker seemed completely oblivious to the looks he got when we were out in public. He didn’t try to “hide” himself and on his good days, actually drew attention singing along to the radio, or making sure I understood exactly which sports car he liked in the parking lot.

3. There is only so much we can do as parents; the rest we have to let go. There is a part of me that wants Parker to get better for good. I am tired of micro-managing every piece of food that touches his mouth and being concerned about his exposure to dust or hair or chemicals in the air. But stressing about all of it just puts everyone in a bad mood. I have my arsenal of remedies at hand, and have resolved to take action as soon as I see a problem arise–instead of going crazy trying to prevent a flare-up in the first place.

4. Normal is a state of mind. What is “normal” anyway? Normal isn’t always a good thing, or even a great thing. As parents of children with unique needs, our normal may look different, but it is still normal to us. So what if we can’t participate in gorging all the Halloween candy next week. At this point, Parker is too excited about trading in his candy for tickets to see Thor to care!

Advertisements

New Enzymes with Sucrase!

My sister came across these while doing research for her nutrition class. We are giving them a try now that Parker’s eczema is under control. Although he still showing some symptoms, we believe it’s mostly environmental. As of yesterday this will be the only digestive support he will take until the bottle is gone.

I will continue to give Parker his antihistamine at night, and apply the prescription ointment for topical treatment. For the record here is a picture I took of him yesterday when we were baking gingerbread cookies gluten free of course.

They are available through various Amazon sellers. Simply search: “Klaire Labs Vital-Zymes chewable”

As you can see he still has some irritation around his eye and some spots on his neck…but huge improvement over all.

Paleo, Eczema and CSID Update

This past month has been overwhelming to say the least. A move, an ill grandparent, continued management of Parker’s symptoms and still working 40 hours per week is not easy!

But I have a few minutes before I am off to my day job to update everyone.

Parker is doing really well at the moment. As you can see, he is ready to take on on new neighborhood tonight–and perfectly fine with our deal that he exchanges all candy for tickets to see the movie Thor in November.

After finally getting in to see an allergist, a serious group prayer intervention (for God is in all of this no matter how I look at it), and completing our move into a healthier home, Parker appears to be on the mend.

One thing I have learned in all this, is I absolutely do not have all the answers and hope that nothing I have posted to this blog indicates as such. I am and have always simply shared what I learn, what works (or doesn’t) work for us, and what I feel could help others in understanding CSID.

This journey with CSID and associated health issues is a CONSTANT LEARNING PROCESS!

Each of us must approach our needs or that of our child’s on an individual basis. New research pops up every day… and honestly I am not in the position to be keeping the world apprised of it at this moment. For example (and if I had time I would site sources)—more research is coming out to discourage the excessive use of fructose in any form aside from its natural form in fruit. But even large amounts of fruit or honey could potentially cause problems for sensitive individuals. I posted a link a while back regarding a finding that I believed at the time was more related to the consumption of highly processed foods.

So please, please take what works for you and do—DO—more research to find what is best for you situation.

Right now, I have my hands full in caring for my son and attempting to complete my many other responsibilities. There are many other blogs and books out there written by experts and professionals that focus on dietary and digestive health for a living. I am not one of those people! In the time since I started this blog, there is much more information available. In a sense, I no longer feel obligated to share everything since much of it is becoming common knowledge. Some of my assumptions and interpretations from a few years ago have come to pass as truth. Others, not so much. For example, I have learned that dairy is probably best to be avoided in all forms. Every member of my family has experienced feeling better by not having milk, cheese, etc. When I have allowed dairy back in the house after we all went without for a while–boy did we all notice a difference!

Again–this is our personal experience I only share to offer a possibility and to encourage whoever reads this to look into the issue for themselves.

Anyway my time is up. I will continue to be available my email to answer specific questions. Please allow a week or so for me to respond. In the meantime, take care and I hope to continue to offer hope if nothing else, to those that come across our public journey of learning how to manage CSID through various means.

CSID, Eczema and Additional Food Allergies

I have some frustrating news. After over six months of Parker’s eczema flaring up, I finally took him to the doctor and requested a food allergy screening. Something else had to be irritating his system since he hadn’t been in school for an entire month, I was watching his diet very closely, and trying to keep his skin moist with a variety of creams and lotions. (See the bottom of the post for photos.) I did not want to continue the steroid cream, especially when the rash had spread to his neck and face. And I wasn’t going to give him another dose of antibiotics no matter what she said. But, the only way to know for sure if he was still eating something that was aggravating his system, was to get the allergy screening ordered through his doctor.

While waiting for the results, I asked our chiropractor if the colloidal silver he had mentioned a few weeks back could help with the infection, so I didn’t have to put Parker back on antibiotics again. He said it most definitely would. Within 48 hours, most of the oozing and irritated areas were drying up nicely. Read more about how I have addressed the topical healing HERE. I wrote a brief product review through my work blog last week on this topic alone.

Within a few days, the allergy results came back. To my dismay, he is now allergic to the following:

  • egg whites (a look at my recipes and you will know why this one made me cry!)
  • milk (sorry buddy, no more cheese or sour cream)
  • wheat (not a surprise)
  • shrimp
  • cockroaches (um…what? you say… guess what cockroaches are used for? FOOD DYE!)
  • penicillin (yah, so my hesitation about antibiotics will no longer be challenged!)
  • cat and dog hair and dander
  • timothy grass
  • cedar
The good news? The Paleo diet support the omission of most of these foods, so I was on the right track. The challenge: not using eggs. After attempting to feed our entire family according to these limitations over the past couple of weeks, I realized this is not possible with my limited time and resources.
My compromise? I purchased some gluten-free, dairy-free, egg-free baking mixes (despite having high-starch content)… for the purpose of baking Parker a variety of “treats” he can have in place of the bread, milk, etc. that the rest of the family can eat.
I just can’t bear for him to be starving all the time. We are all pretty small people to begin with and we have lost far too much weight consuming Paleo foods alone. I realize quantity is a factor, but I need to find a happy medium. Costco is now selling many products that are organic and gluten-free. A relief (kind of ) to my food budget. So, I will be including non-gmo brown rice, Bob’s Red Mill gluten-free baking mix with Ener-G egg-substitute into our weekly menu plan. 
Parker will continue to take his Sucraid and Food Enzymes to assist with sugar and starch digestion.
As far as his eczema, we have been experiencing triple-digit heat here in the Sacramento Valley. I am trying to keep him indoors and we are swimming in fresh water to avoid lake contaminants and chlorine. He is also drinking 22 ounces of Chlorophyll Cocktail and a cup of Dandelion Root tea each day. There are parts of his body where the rash is clearing up, but other parts (primarily the ones he keeps scratching) keep getting irritated again.
I know it’s a process and it could take months to flush out whatever is stressing out his system. My hope though, is that we can get the rash under control before school starts again. And that his new teacher is willing to help make him comfortable and encourage him to make wise choices.
PHOTOS (for comparison purposes)

Going Paleo {Paleo + CSID Part 1}

Sausage, Egg, and Sweet Potato Breakfast Skillet{EveryDayPaleo.com}
Within a few weeks of finalizing A Place to Start Without Sugar or Starch for printing, I started noticing the word “paleo” popping up on my favorite food blogs and on cookbook covers in the health food stores. After researching dozens of other diets that involved a low-carb approach, I honestly did not feel like looking into one more. In the long run I did want to refine my CSID approach, but time and other resources were lacking.
Knowing I was close to eating as healthy as possible with my CSID diet plan, I figured I needed to master the meal planning for my family first. Then I would look into this paleo thing in time and see if it would work in light of CSID.
In my last post I mentioned that I needed to focus on my own health and well-being, which I am still working on. However, with Parker’s eczema worse than ever and my migraines lasting more than 5 days, I was feeling desperate for a natural, long-term approach to our health. We had compromised our diet due to time and money constraints. But I was feeling so lousy, it made it hard to utilize what resources I did have in the best way possible. By this time I had made a note to take a closer look at the paleo diet. After all the compromising of processed foods into our diet, I figured we didn’t have much to lose. Something had to change.
First, though, I had to kick the migraines. I decided to see a chiropractor since the last thing I wanted was to add another medication to my nightstand. I had worked hard to remove most of them over the past 18 months. And I knew pills were not the answer to repairing the imbalance in my body. They were just giving me temporary relief.
I was fortunate enough to visit a chiropractor who uses a whole body approach to healing. From what I gather, he sees his care as just a part of the overall lifestyle change anyone needs to feel well. I had long believed in the theory of chiropractic care, but had not sought treatment since the onset of my Fibromyalgia symptoms back in 2011. I was in too much pain back then to consider getting adjusted.
After a week of treatment and a few tests, the Doctor concluded several things about my state of health.
1. My “normal” was so far from actually feeling well, I couldn’t comprehend what well felt like.
2. I have moderate scoliosis, and impairments in the top and bottom of my spine.
3. With an aggressive treatment plan, plus diet and exercise changes, I actually have a chance to feel great for probably the first time in over 20 years.
Parker was also assessed and the Doctor believes his eczema and his headaches are due to issues in his skeletal system. He doesn’t claim to be able to reverse the CSID, but does believe once Parker is aligned properly, it is possible his overall health will improve drastically.
The chiropractor also fully believes the paleo diet is part of the solution.
That was my tipping point. I needed to set aside my own theories and trust that someone with over 20 years of experience treating people successfully could have the answers I had been searching for.
My first step would be to look into paleo and see if it would work for us in light of CSID. It only took a few minutes for me to see how similar the diet is to CSID-friendly foods. Though Parker and I are in a state of distress, we are not presenting major digestive symptoms. Considering this confession, this is my plan for our family:
1. Since we have already been compromising with starches and grains, I am not going to be concerned with included higher-starch foods from the paleo menu such as cashews, pecans, and winter squashes.
2. I am going to wean us off of most of our digestive enzymes. The paleo diet includes mostly digestive friendly foods, so as long as we include a plentiful amount of raw fruits and vegetables, we should not need help digesting most of the foods. The exception will be to include Sucraid with the sweeter fruits allowed, such as papayas and melons, or dried fruits.
3. We will all be removing some of our most favorite foods over time. The idea is that if we eat 80-90% paleo most of the time, we can occasionally “cheat” with few ill affect. On the other hand, literature on paleo suggests the longer we comply with the permissible foods, the less we will want to eat the forbidden ones. For our family this will mean:
  • No more chips. Even organic corn which is a staple.
  • No more peanut butter. I don’t eat this as I prefer almond butter, but the hubby and kids are going to find this a hard one to completely eliminate.
  • Cutting back virtually all dairy products. Ouch! I really love my butter,cheese, and half&half!
  • No more sprouted grain bread. All grains, including corn are off the table.
Essentially Paleo includes all vegetables (except potatoes), all fruit, nuts and seeds, and animal protein such as eggs, chicken, turkey, pork, and beef raised in a healthy environment with a grain-free diet.
Paleo excludes grains (including corn), legumes (peanuts, peas, and green beans included), beans of all kinds, and dairy products. The books I reference below go into much more detail about why. Since I am a novice at this, I will not attempt to explain it myself.
4. The great thing, however, is we are already 80% there with my CSID diet approach. It will require planning and always having quick snacks on hand such as nuts, fruits, hard-boiled eggs and sliced-up veggies. My food dehydrator will probably be working overtime between drying fruit and making beef jerky.
5. By not purchasing organic dairy products, sprouted grain baked goods, gluten-free cereals, and organic peanut butter, I will save a lot of money that will go to purchasing grass-fed beef, and fresh fish and poultry.
Here are a few of the family-friendly Paleo resources I have found so far. I will be purchasing the electronic versions of the cookbooks soon and can’t wait to get started!
If, as a CSID family, you see the potential in applying the paleo diet to your household, please let me know! I will be posting recipe testimonies and linking to recipes or other resources as we find success.

If you are new to the CSID diet, or you or your child have been recently diagnosed with CSID, visit the brand new website www.CSIDcares.org for a complete description and direction for managing CSID.