LIVING

With EoE, Allergies, Asthma and a G-Tube

Crying over spilt milk

Food allergies are no joke.

Here’s an example.

Tinleigh is anaphylactic to dairy. You might remember our Halloween episode. I have a tablet with a keyboard I let the kids play on. Yesterday Charlie got a few drops of milk on the keyboard. I thought i had cleaned it off well. This morning Tinleigh had the tablet. She announces to me her tongue is itchy. I was confused for a moment as to why it would be because she hadn’t eaten anything by mouth yet this morning. Then I realized she had touched the computer then put her hand in her mouth. wpid-20150116_101159.jpgHer whole mouth was breaking out. Her dairy allergy is very real.

If your family is allergy free you might not understand how careful allergic people have to really be. If there’s a child in school that’s allergic to nuts and the class is asked to wipe their hands after eating, this is a great example of why. Gage’s nut allergy is so bad if he touches someone that has eaten a nut he would go into asthmatic symptoms and require a breathing treatment.

Please try and understand how scary our big world of food can be to someone that could die from coming in contact with a food normal people would never blink an eye at.

January 16, 2015 Posted by | LIVING, Tinleigh's allergies | , , , , | Leave a comment

Doing great!

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Little miss turned 9 months recently. I’m feeding her every baby food available minus those with dairy or fish. Shes thriving! She met with GI this week and the decision is we will wait until she’s showing signs of the disease,  such as choking. We’re keeping our fingers crossed that Layton may escape the issues the other 3 carry.

December 12, 2014 Posted by | Layton's food exploration, LIVING | , , , | Leave a comment

The New “Hot Cocoa”

Milk with Hershey’s syrup warmed up to my boys is like Tinleigh needing her bottle first thing or me needing coffee first thing. Gage has gone a full week with out it. It’s been so hard for him fighting his addiction. Ever watch a 4-year-old go through withdraw?

I have tried and tried to make him something similar. Using coconut milk though the taste just can’t be the same.  I’ve been making his coconut milk myself instead of buying it. I don’t want to risk having it cross contaminated with almonds or coming from Thailand and them not having to label their can with anything potentially dangerous to Gage.

Here’s the coconut milk recipe I follow: homemade coconut milk

Ingredients

• 2 cups unsweetened coconut flakes ( I use sweetened)
• 2 cups hot (not boiling) water
• 2 cups water
• 1 teaspoon vanilla (I omit this)
• 2 tablespoons local honey (I omit this too)

Directions

1. In a large bowl, soak the coconut in hot (not boiling) water for about 20 minutes.

 

2. Pour soaked coconut with its water, the remaining water, vanilla, and honey into the blender.  Blend on high until mixed well.

 

 

 

3. In a large bowl, strain the liquid through a cheesecloth or nut milk bag. (I used a small wire strainer)

 

4.  Store milk in mason jars and place them in the refrigerator.  It should keep for about 3 days. (I just put mine in a plastic pitcher with lid.)

5. Serve and enjoy!

Basically I just use the water and sweetened coconut flakes. It’s sweet enough that way, you don’t need to add the vanilla or honey. I will try it with unsweetened at some point. I just had sweetened in the fridge. The first two small batches I made I did use the vanilla and honey and it was just way too sweet.

Onto the cocoa!  This was actually hard to figure out. A little cocoa with some sugar and BOOM hot cocoa!  Not the case. Because the coconut milk already has sweetness to it I kept over doing it with the sugar. Then I tried it with no sugar and it was bitter cocoa. I finally had to make an actual syrup for it to taste right. Thank you again to my friend Rachel for finding the perfect recipe. I had some other friends pass along recipes as well, thank you!

This specific recipe comes from Pennies on a Platter.

I followed this to a T.

  • 1 cup water
  • 1/2 cup unsweetened cocoa powder
  • 2 cups sugar
  • Pinch of salt
  • ¼ teaspoon vanilla

Combine the water and cocoa powder in a medium saucepan. Heat over medium while stirring to dissolve the cocoa. Stir in the sugar until dissolved. Bring to a boil and heat for 3 minutes. Make sure the baby on your hip doesn’t distract you from the 3 minute time limit like mine did! It almost boiled over. Remove from the heat and mix in the salt and vanilla. Let set to cool.

I mixed 1-1/2 tbsp into Gage’s coconut milk and warmed it up for the standard 30 seconds.

As you can see Gage didn’t like it at first. Then Charlie tasted it and started to finish the glass. Gage quickly grabbed it away from him and decided he liked it too. PHEW! Thank you big brother for saving the day. Gage finished the cup and successfully had some again this morning. He doesn’t love it but it will have to do for now. Imagine drinking mocha coffee everyday for 2 years then one day having to switch to coconut mocha coffee. It wouldn’t be the same but you have to accept it. 

Here’s to homemade coconut milk and chocolate syrup!

September 4, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , | 1 Comment

Tinleigh

Tinleigh is something else. Her one month check up was great she was 50% on everything and growing fine. The screaming though was horrible. It wasn’t like colic where it was some hours one time a day, it was 24/7. When we would have her in public people would make comments on how cute she was and the boys would respond “she cries all the time”. It was weighing on all of us. If she would have been my first baby I would have been done! The doctor started her on zantac. She was spitting up and you could actually smell the acid. So we hoped that would help. Two weeks went by and there was a little less screaming but not much. The doctor then added prevacid. Tinleigh was also covered in a rash. It came with her baby acne. Started on her face and head and got really bad. It then started spreading down her back and chest. Then finally went down her arms and legs. Once it started on her arms and legs her face and head was starting to clear up. So then I thought maybe she had some sort of virus and it was just exiting her body through her extremities. Made sense in my head.
At her 2 month appointment I was shocked to learn she had only gained 7oz instead of the expected 2 pounds. The doctor was very upset about this and mentioned seeing the GI doctor. I didn’t want to go there yet. The pediatrician also wanted to get her on a prescription formula. I had gone round with the insurance when we tried to get the boys the prescription formula two years ago. I told her I didn’t want to do that so she said she wanted to see Tinleigh in two weeks for a weight check. If she didn’t gain an oz a day then we were going to the next steps of the GI doctor and prescription formula. I left that appointment determined to fatten this baby up. I was going to nurse her every 3 hours even if she wasn’t acting hungry round the clock. Then a good friend reminded me to try rice cereal in her bottle. How could I have forgotten about that with reflux babies? I had done it with both of the boys. I also removed diary from my diet. By the time it was time to weigh her again she was a different baby. The crying became less and the spit up was now minimal as long as she had the rice in her bottle. When I took her in for her weight check she had gained 12oz in 14 days. Good enough! My next problem was that I wasn’t making enough breast milk to keep up with her at this point. I tried alimentum for allergy babies. She screamed and vomited it right up after only having 2oz. The doctor said she needs the prescription formula. I asked about trying soy. The doctor said no way, she feared Tinleigh would have allergies like the boys and didn’t even want me to try soy. We were getting no where with getting coverage for the prescription formula and I couldn’t even get a sample of it to see if it agreed with her. So I bought prosobee. I only gave her an ounce at first. Nothing happened. So as she wanted more I gave her more. She is still on soy! No issues.
During this time I had also cut wheat out of my diet to see if her rash would clear up. Low and behold it did! Why wheat? Just a gut feeling. So I have now joined the rest of my family with a restricted diet. Darn is it hard. Nathan did make a point one evening about it. He told me it’s actually harder for me because I’ve been eating wheat and dairy my entire life. He’s never had chicken and has no idea what he’s missing so he never craves it. I accepted his pity.
Tinleigh is now a happy baby and steadily gaining weight. I nurse her on one side while pumping the other. I add rice to the pumped and feed her that after she’s done nursing. If she’s still hungry after that then she gets soy formula mixed with rice. Somedays she wants 4oz of soy after breast milk some days she only wants an ounce. I believe I only produce a little around 3 ounces a feeding for her. She’s on a combo of zantac and prilosec and it works for her. Her skin looks great. She does get the occasional pimple on her face but nothing like she had before.

January 18, 2012 Posted by | LIVING | , , , , , , | Leave a comment

EoE, It’s in the family

I had mentioned not too long ago my niece Ellie was recently diagnosed with Eoe. Here is her story written by her mom.

My daughter, Ellie, was diagnesed in mid-July, at age 2, with EoE.  Her diagnosis suprised me because she does not suffer from the “typical” EoE symptoms.  Ellie was born with a cleft soft palate.  Early on she was on reflux medicine because she constantly spit up; however, once she had her repair surgery, the spitting up stopped.  Ellie has always been a good eater, especially compared to my older daughter.  At 14 months, , Ellie had her first, and only, “true” allergic reaction.  After one lick of cake batter, the area around her mouth broke out with hives.  I had her allergy tested for the top eight.  She reacted to eggs and peanuts. For reasons, I cannot remember, I felt like she also had a milk allergy; however the skin test came back negative.  By testing time, Ellie had already started soy milk and liked it so much, I never switched her back. 
Ellie has never had a solid bowel movement.  Her butt is and always has been red, had sores, and irritable.  Though she was always a 12 hour night time sleeper, starting around Februrary of this year, she began waking several times a night.  Around this time, too, Ellie’s eczema, which we have battled since infancy, became a permanent fixture.  I have tried four steroid topical creams but none have worked.  Ellie has asthma, but it is only noticeable when she is sick.  She is a thriving child that does not choke, vomit, or ever appear to be in pain. 
So why have her go through an endoscopy and colonoscopy?  I had been telling her ENT that I believed, as a mom, that she has more allergies because of her constant diarrhea, sores, etc.  Of course, I mentioned that my brother and two nephews have EoE.  My concern was that she had EG, EGE, or EC, but not EoE.  After being referred to a local GI and being scoped, I learned that I was wrong, Ellie does have EoE.
After her diagnosis, she went egg, peanut, nut, wheat and milk free.  Blood work indicated a wheat and milk allergy, but the skin test did not confirm.  No other allergies were confirmed with a skin test.  Since taking her off wheat and milk did not clear her eczema, last week I removed soy from her diet.  To my excitement, her eczema has improved tremendously. 
I am still confused since she is not testing positive for many food allergies, but I am hoping to get a greater clarification when I meet with the doctors at Cincinnati’s Center for Eosinophilic Disorders (CCED) in September.
When Tina called me with Ellie’s news I was so upset for them. It angers me that kids are dealing with this and there is no cure or clear answers for anyone yet. We definitely know that EoE is in our genes. Leads me to wonder what will this disease do when my boys have kids. Tina doesn’t have EoE but could she be a carrier of the gene like women do for colorblindness. Will Tina’s other daughter carry the gene? There are a thousand questions and I hope someday soon we get some answers.
Thank you Ellie, and Tina, for sharing.

August 16, 2011 Posted by | LIVING | , , , , , , , , , , , , , , , , | Leave a comment

   

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