first appointment with the rheumatologist

I am pleased with how the visit went at the doctor’s office (pediatric allergy, immunology clinic at UK). We were there for over 4 hours and I was physically and emotionally exhausted by the time we got home.

Jackson was so cooperative with everyone except the last doctor we saw. He let the nurses examine him and then a female doctor who works with the rheumatologist came and got a detailed history and Jackson cooperated with her and let her examine him from head to toe. Then that doctor came back in when the rheumatologist came in.

I don’t know if Jackson just didn’t like the doctor or if he was ready to go home but he was done letting people inspect him=) By the end of our visit, Jackson was crouched underneath my chair, facing the wall, with his pants pulled up, scratching his legs to death. Kind of cute in a way, but also very sad and pathetic. Poor little guy!

The doctor looked at him and went to get his camera and came back with 4 more people (students, other docs in the practice; I’m not sure) I guess he thought Jackson was an anomaly or he just wanted to document everything and use him as a teaching moment=) I also think he was getting pictures for insurance purposes.

The doctor would like to do skin treatment in the hospital for 3 days. Yes, for those of you who don’t see him regularly, my little guy looks terrible and he scratches himself more often than not. Wanting to admit him validates my concerns and I know that yes, he is really bad and that it isn’t just a little bit of eczema or rash! This outpatient treatment is something that needs to be pre-approved by insurance.

In the meantime, I am doing a process called wet-wrapping him at home. With only 2 treatments on his left arm and leg, Todd noticed a huge difference from his right side. I talked with the nurse and told her what a drastic improvement has been made and asked about doing it on his whole body at home and perhaps delaying the hospital admission until our next appointment to see if we can get his skin healed up at home and maybe avoid the hospital treatment altogether. The nurse agreed and thought that was a good course of action.

The doctor said he has severe atopic dermatitis or severe atopic eczema. This is not a new diagnosis. Every doctor he has ever seen has called it this. The doctor is leaning towards him having hyperimmunoglobin E syndrome (HIES or hyper IGE)  He also mentioned a few other auto immune disorders and has ordered several blood workups. We will not know for sure what’s going on until the results come back and maybe then, we still won’t know. You can read more at the link if you’re interested, but again this is just a guess and he may not have it.

This is the first doc who said he probably won’t outgrow the eczema. Everyone else has said, hopefully he will; most people do. But this doc said that because it started in the first month of life and because his rashes/redness are head to toe—and not just in patches, those are indicators that this is not going to go away.

I was dreading going to the lab for the blood draw. But Jackson did fabulous. He didn’t want to sit on my lap and was making a fuss but I pulled him up there and then he had quite the conversation with the lady. (with his 30 word vocabulary) He said ouch, but then he sat absolutely still and was fascinated by what the tech was doing to him. I’m glad because I was getting weak just thinking about the 7 vials of blood she was collecting.

wet wrapping saved my son’s skin; it’s a miracle

My son has had severe eczema since birth. Lately, it has gotten worse. His skin is red from head to toe, he is flaky all over, and he has cuts all over just from scratching himself so much. He is itchy more often than not.  He is raw and bleeding in places. His skin is thick all over and he’s swollen and inflamed. We’ve tried everthing that the allergist has suggested and although we have made some break throughs here and there, it has gotten really bad recently with almost constant itching.

This week, we had an appointment with a rheumatologist for the first time. One look at him and he left the room, and came back with his camera and four med students or other doctors from the clinic and he took many photos of Jackson’s skin.

The doctor wanted to admit him to the hospital for 3 days to do a process called wet-wrapping. Yes, his skin was that bad.

Because this would require a pre-authorization with insurance, the doctor explained how to do it at home. Well, let me tell you, we’ve had drastic results and I don’t think a hospitalization will be necessary.

We’re using an rX low dose steroid cream that’s called triamcinolone acetonide cream USP .1%. (yes, that’s point 1 percent not just 1 percent) It’s a big tub and it cost less than aquaphor=) In contrast, the copay for elidel I’ve gotten a couple times was more than $40 and I’ve read that it can cause cancer so I don’t want to use the elidel ever again, plus it didn’t really work very well.

Anyhow, I’ve used this particular cream as prescribed by the allergist  and didn’t get any results at all so the key here is how we’re using it with the wet wrapping. I’m so thankful for this doctor! You can probably do this with whatever ointment or cream you currently have on hand.  In other words, I think it’s the wet wrapping that is doing the trick, not the specific steroid cream we’re using.

Here’s what we’ve been doing:

1. Soak for 20 minutes in plain warm water. No oils or soaps necessary.
2. Pat dry, leaving a little moisture on the skin.
3. Rub the cream on the skin.
4. Cover with a warm wet cotton layer that is close fitting to the skin.
5. Cover the wet layer with a dry layer, also close fitting.
6. Leave on for 3 hours.
7. Do this twice a day.

These layers need to be close fitting to the skin. If it’s loose, it would be extremely uncomfortable. I am using Mary’s  socks on his arms and Alex’s socks on his legs and it’s working out really good size wise; I just cut the toes off the socks.

If you need to do the torso, you can use cotton pajamas or long johns that are a size too small for the wet layer because once wet, they would stretch out and not be close fitting. You don’t want to have any wrinkles that would irritate the skin.

We noticed a drastic difference after only 2 treatment but now after 4 days, his skin practically looks normal all over except where the worst spots had been–wrists, ankles, in the crevice of the arm, behind the knees and behind the ears.

Four days ago, his skin was angry red with cuts all over and bleeding and bumpy rashes. Now his skin is white and only the worst spots remain. His skin really does look “normal” now.

Plus, he is sleeping through the night. I think I can count on my two hands how many times he has slept through the night.  Usually, he woke up twice a night with extremely dry, flaky skin and scratched himself like crazy and crawled into bed with me for comfort.  I haven’t had a little boy next to me in 2 nights.

We’re supposed to do this wet wrapping twice a day for 2 weeks. Then not as often, but I do think the wet wrapping will be a long term therapy for him.

awesome turkey breakfast sausage plus Wed and Thur menus

I’ve never made homemade sausage before, but I was browsing Nourishing Traditions, one of my favorite cookbooks, and the recipe seemed easy enough.

Here’s my version that I made below which I adapted to serve the needs of my son with multiple allergies. Another son called the sausage, “awesome.”

one pound ground turkey
1 small onion, chopped
1/4 tsp cumin
1/4 tsp nutmeg
1/4 tsp oregano
1/4 tsp cayenne pepper
1/2 tsp basil
1/2 tsp thyme
1/2 tsp sage
2 tsp sea salt
1 T ground flax seed
2 T oats

Mix all ingredients very well. Chill. Form in to patties and cook.

I cooked about half of it for breakfast and then saved the other half to use in stuffing for the cornish game hens we had for lunch. Super duper delicious.

Wednesday meals

Breakfast
eggs (our family used 12 today)
english muffins
milk

Lunch
homemade chicken soup with carrots and peas
spelt bread
oyster crackers and rice cakes for J

Dinner
Todd took the leftover shepherd’s pie
the rest of us had leftover buffet

snacks
oatmeal cookies
bars for Jackson
apples

Thursday meals

breakfast
breakfast turkey sausage
eggs and english muffins
milk

lunch
“personal chickens”
sausage made with turkey sausage oats and rice cakes
salad with carrots

dinner
cheese roll-ups
soup for J
Todd took leftover potatoes and chicken to work

snacks
oatmeal cookies
apples
raisins

Do you want to do the $100 grocery challenge with me?  Read more about it.

2nd batch of grocery receipts

If you’ve been following by blog for the past couple days, you know that I’ve challenged myself to see if I can feed my family of 6 on just $400 for the month of November. Below are two more grocery receipts bringing my running total for the month to $135.41. Yesterday’s receipts plus a whole lot more explanation of what I’m is here.

I just looked more carefully at my receipt, and the “drink” on there is oat milk and the shelf said it was $2.00 but I see I got charged $3.79.

Tuesday menu

This is what we ate on day 3 of my feed my family of six on $400 in November challenge.  You can read the details here.

Breakfast

Oatmeal, plus the kids finished off a box of Total. As an fyi, when the kids are eating something else, I need 3 cups of dry oatmeal to feed the six of us. Four cups if all we’re having is oatmeal. Todd and I had coffee.

Lunch

Rice and bean tortillas made with leftovers from Sunday night. I just added a bunch of cheese and a can of evaporated milk and sprinkled some spices in.  Turned out pretty well.  We had sour cream and salsa along with it.  I set aside some beans and rice for Jackson and melted a piece of his rice cheese on top.  Plus we had green beans.

Dinner

Whole wheat spaghetti.  Jackson had rice spaghetti with some creamy chicken and carrots leftover from Sunday on top of the noodles.  Caleb ate pizza at a friend’s house, and Todd took leftovers from today for work.

Snacks

apples, bananas, finished off a package of animal crackers, J had a little fruit snack, raisins

first receipts for my $100 a week grocery challenge

grand total so far $94.08

I told you yesterday that I challenged myself to feeding my family of six on an average of $100 a week or $400 for the entire month of November. I still have a few things to buy this week:

• coffee
• rice syrup
• coconut oil
• tomato paste
• tobasco sauce
• pie crust or already made pie to take to our homeschool co-op’s feast

Just a couple of things to note about my receipts above. The apples from Aldis were $1.19 for 3 pounds. My apples from Good Food were $3.99 for 3 pounds for little J who can’t have the apples from Aldi because he had an allergic reaction to the wax coating on them.   The nutty nuggets from Aldi is a cereal I haven’t tried before. Probably no one will like it plain, but I thought I could add it to granola, oatmeal or meatloaf. You get the idea.  I thought ninety-nine cents for 24 ounces of cereal with no fluff in it was pretty cheap so I grabbed a box.

tip of the day; buy spices in bulk

Did you notice my lemon pepper from Good Food?  That’s a spice that runs $20.99 pound.  That may sound like a lot, but it’s much less than buying the little spice jars from the grocery store.  I paid $1.26 for a yummy organic spice that would have cost 3 or 4 times that if I had bought a jar from the baking aisle at the grocery store.  Plus, buying in bulk makes them much fresher and there is no msg, fillers, preservatives or other junk.  Buying your spices from bulk bins is a great way to save money. So if you don’t already do this, keep your empty spice jars and just fill them up. If you’re local to me, go to Good Food (much bigger and wider selection than Whole Food when it comes to spices.)

on making menus and shopping lists

Several of the frugal sites online about cutting grocery bills recommend making a list, making a menu and sticking to it. I’ve tried this in the past, but this just doesn’t work for me.   When I menu plan, it takes extra time, then I’m buying ingredients at a non sale price just to fit my menu (I know you can plan menus with sales fliers in hand that help with this.)

What works for me is having a list of the staples that I’m running low on, and stocking up on them when they’re at a good price. For example, I might buy 3 jars of mayonnaise at $1.99 each instead of running out and then having to buy a jar for over $4 which is the normal price at my stores.  I keep a sharp eye out for the brightly colored yellow or orange  “manager markdown” stickers.   These aren’t advertised sales. These are clearance prices on meat and produce or discontinued items marked down to half price or less.  (some stores only mark down 20%)

You can read my tips for shopping at Aldi which I wrote before I started making my own laundry detergent.

shopping tips for a corn allergy

With the long list of foods my son is allergic to, corn is by far the hardest to avoid because it is in almost everything and the FDA does not require manufacturers to clearly list it on products.

Avoiding corn isn’t as simple as ruling out corn on the cob and cornbread and things sweetened with corn syrup. The problem is that corn is in almost every food manufactured in America today and the label doesn’t have to say corn on it.

I think the most important rule to follow is to assume something has corn in it unless it explicitly says, no corn or does not contain corn. If it doesn’t say that, then you won’t know whether it contains corn unless you understand what absolutely everything is or what it is derived from. Some labels are easy to read. Some have chemical names and are not easy to read unless you’re a chemist or a food scientist.

corn goes by a thousand different names

Read the label. If it has any ingredient ending in ose, assume that ingredient is derived from corn. Call the manufacturer or e-mail them and ask them if their product contains corn. (I have often called a company while standing in a store with package in hand.)   If they say no, then ask them the source of such and such an ingredient.  Often that mystery ose item is derived from cottonwood instead of corn, so you’re good to go.   Sometimes the answer is vegetable. This answer has been quite annoying, but sometimes that is the only answer readily available.  For a corn allergy, one must assume that vegetable really means corn, because usually it does.

Starch or food starch most likely means corn. You need to ask what the source is. Citric acid is often derived from corn (sounds like it would be from citrus, doesn’t it?)

corn is in many vitamins and medications

Look at all medications and vitamins. Most vitamins (except oils) are grown in corn. There are a few companies dedicated to making corn free vitamins.  Corn is used in both over the counter and prescription medications.  Depending on the severity of your corn allergy, perhaps taking the corn product outweighs your allergic reaction. For others who have severe breakouts, hives or anaphalactic shock, it’s necessary to avoid corn no matter what. Zyrtec, Claritin, ibuprofin, aspirin, etc. all contain corn.

corn is added to meats

Read your beef, pork and chicken labels. You need to look for contains up to 4% retained water (or similar percentage). Most chicken is enhanced with or contains 12% natural chicken broth.  This natural broth usually contains corn. Avoid it! Don’t go by the word “natural” on the label. Look for the teeny weeny fine print that says what has been added or retained.

You’ll probably need to stay away from deli meats and pickled items as these all could contain corn. Unless you verify with the manufacturer, you must assume that corn was used in the pickling or aging process. Here’s an interesting page all about curing agents.

corn is often added to fresh produce

That beautiful shiny apple at your grocery store could contain corn. Just yesterday, my son turned all red and splotchy from an apple he ate even though I scrubbed it like crazy to remove any waxy coating.  So watch your fresh fruits and vegetables. Sometimes buying organic is necessary (but don’t assume because something is organic that it is safe).

corn is in table salt

Yes — believe it not, corn is used in the iodization process in common table salt.  That means that anything that contains salt at the store could contain trace amounts of corn. Because my son’s corn allergy is so severe and he reacts to trace amounts of corn, I look for products that contain sea salt or that are salt free.  Use sea salt in your cooking. You can find this right next to the iodized salt at the grocery store, but read your label. Some sea salt contains anti-caking agents that (I’m not sure) could contain corn. I buy mine from the bulk bins at Whole Foods or the Good Foods Market.

so what can I buy and where do I shop?

• Whole Foods has removed products containing high fructose corn syrup from their shelves. That helps a lot: It doesn’t mean that all corn has been removed from the store, but it does mean that you can find more safe products. I buy a lot of their 365 store-brand products, especially oils (but I’m shopping to avoid a lot more allergens than just corn.)
• Trader Joe’s (I don’t have one) is a good place to shop.
• the natural foods section of your regular grocery store
• the perimeter of your regular grocery store.  Remember that all packaged food from most manufacturers — cereal, crackers, granola bars, etc. — likely contains corn, and those products are all in the aisles.
• look for organic on bottled, boxed, and canned food. Organic doesn’t guarantee corn free, but it does usually mean it’s sweetened with something other than corn syrup or HFCS. I buy things like organic ketchup.   Some stores are coming up with their own organic labels which are cheaper than other organic lines. Meijer has its own organic label, for example.
• Look in the markdown area of your store. I often find products that have been discontinued and drastically reduced (priced twice as much as other stores, so that’s why they haven’t sold).

This thorough website has extensive lists of corn ingredients and advice in living with a corn allergy. Check it out, you may find it helpful.

What are your tips for shopping and cooking corn free?

If you liked this article, please read tears for soy and corn and help, no wheat, no corn, no eggs allowed.

can I feed six on $100 a week?

I’m challenging myself to see if I can keep my grocery bills to an average of $100 a week during November.  I’m not going to limit myself to $100 a calendar week but do want to limit it to $400 for the month. Does that make sense?  In other words, I might spend $125 this week and $75 next week.  I’ll include toilet paper and anything else I might buy at the grocery store.

I have no idea if I can do this or not, but I’m going to try. Thankfully, my whole family gobbled up the beans and rice with tortilla chips and cheese we had last night (cheap cheap cheap.)

Do you want to start your own grocery challenge and do it along with me?

I’m not starting with an empty freezer or pantry so I do have a few things on hand.  Everyone’s family is different in food preferences and needs. We have a family of six, one girl whose appetite is modest compared to her older brothers who both eat more than me and their dad.  Most notably, I have a 3 year old son who is allergic to many foods.  I mainly cook and bake from scratch (but you will see me popping a few Freschetta pizzas in the oven on occasion or opening a can of prego when I need something quick.)  We do not eat canned veggies or fruits.  Frozen, yes, when fresh isn’t cost effective. I avoid high fructose corn syrup which is in most packaged foods (not that I have completely eliminated it yet–see above prego:)

I also shop at Whole Foods, Good Foods and occasionally at Aldis.  How I wish I had a Trader Joe’s close!  What I buy the most at Aldis is dairy. $1.49 gallon milk and pound of butter, for example.

finding my deals

I discovered about a year ago that my Kroger store marks down meat and produce a little bit before noon on Tuesdays and Thursday so that’s when I plan to shop.  I try to buy chicken for no more than 99 cents a pound. Maybe that doesn’t sound very low, but it is when you realize that I MUST read labels very carefully and only buy chicken with retained water and not chicken that is enhanced with a natural chicken broth.  The little J is allergic to pork and it seems he’s allergic to beef too. I haven’t tried any organic, free range beef for him, but I have experimented here and there and read labels very carefully to make sure what I buy is just beef with no “enhancements.”  Sometimes he reacts and sometimes he doesn’t.

I used to shop at Meijer’s every week. But they seemed to raise their prices, stopped carrying two of my favorite items and changed their check policy; all of which caused me to start shopping around:)  But what I absolutely love about Meijers is their clearance rack in the back of the store by the milk and I usually stop there on my way home from kroger. Sometimes, there is nothing. Other times, I’ll see an item that I stock up on.  This happened a couple weeks ago when I bought hemp dream for 53 cents a quart. I must have bought more than a dozen; actually, I bought all they had in original.  I left the vanilla sitting on the rack since J is allergic to vanilla.  I know. Who’s allergic  to vanilla?   Their mark down said 90% off; no wonder it didn’t sell at full price. I had never bought the hemp milk before because it is pricier than rice or oat (J can’t have dairy.)  I’m thrilled that my little J does not like to drink it because then I have it for making his pancakes and muffins.

I’ll post my shopping trips and our menus of what we actually ate. Stay tuned til tomorrow when I tell you what  I bought at Aldis and Good Foods today.

my menus

Sunday breakfast: oatmeal sweetened with molasses, rice syrup and raisins

Sunday lunch: cooked a whole chicken and used about half the meat in a cream sauce made with rice milk and thickened with tapioca flour.  Added probably about 2 lbs of carrots ( I had bought 15 lbs at a deep discount at Kroger last week and speaking of carrots, Todd picked a couple pounds from our garden today) and some leftover peas.  Served all this over mashed potatoes. Leftover communion bread. (saved the rest of the chicken and plus made 2 qts of stock for later.)

Sunday dinner: previously mentioned beans and rice, etc with homemade donuts for dessert.   Before the little J came along with his long list of allergies, I would’ve put the salsa in the crockpot and corn too with everything else, but now I have to keep tomatoes separate and didn’t do corn. I also have some rice “cheese” for the top of his beans.

Monday breakfast: kids cold cereal and leftover donuts,  J leftover oatmeal, me a granola bar.  Todd made his own sausage and eggs and coffee.

Monday lunch: shepherd’s pie which consisted of  bag of frozen beans, small can of tomato paste, can of evaporated milk, shredded cheese, spices, leftover cubed steak and then on top of that leftover mashed potatoes with an egg in it. Caleb especially liked this.  homemade spelt bread toasted with parmesan.

snacks throughout the day: apples, bananas, grapes. note about the apples: I bought three 3 pound bags of apples today at Aldi for $1.19 each. Wow.  But, they have a waxy coating (most do)  I tried to wash it off really well, but J’s little face broke all out so I went to Good Food and got him his own bag of apples which no one else is allowed to touch. 3lbs for $3.99 which actually isn’t too bad a price at all for organic apples.

Monday dinner:  Todd packed his own dinner and I don’t know what he took.  The kids and I had pb&J on spelt bread, and cheese roll-ups with sour cream, J ate a couple chicken hot dogs and several of the dessert bars I made especially for him yesterday (which is the healthiest thing in the house probably, lol.)