With all of Simmi’s allergies and sensitivities to different foods, sometimes it can be difficult coming up with new creative things to eat. I can’t venture into trying chicken and beef with her until we have further testing done and I don’t want to cause her unnecessary pain or suffering either. She still needs to drink a bottle (which I hate!) to get the extra nutrition she needs. She is on Neocate One Plus and it has really been a life saver. We have her enrolled in the WIC program and I don’t know what we would do if we didn’t have them to help us. We ran out once and had to order it at the pharmacy and it cost about $145.00 per case and we used about four cases per month. That was when we were using the regular Neocate and it came in cans. There are four cans in a case, and we used to go through so much of it. After Simmi turned 17 months old she was switched to Neocate One Plus because of the need for greater nutrition. Now that she is eating more consistantly I have been able to cut back on one of the 8oz. bottles out of four that she usually gets per day.
Simmi is highly allergic to peanuts, eggs, wheat, soy and milk. I won’t give her anything with seeds or tree nuts because I don’t know if she is allergic to those too as of yet. She will be going to see a new allergist next month and we will have her tested for other foods as well at that time. For now, these are the things that she can eat:
Fruits-Blueberries, pears, grapes, raisins
Vegetables-broccoli, cauliflower, carrots, corn, white potatoes, sweet potatoes, asparagus
Other things include-rice chex, rice bread, blueberry or grape jelly, rice and rice pasta, fresh coconut and coconut milk.
I figured I’d give the list of things that she can eat, since she has had reactions to almost everything else we have tried to give her.
This morning I wanted to mix things up a bit. The list of foods that she doesn’t break out from is so limited at the moment, and the last thing I want her to do is get bored of eating or find it unappealing after eating the same things over and over.
Ok, I threw some stuff together just to see if she would like it and oh-my-god! the child was in heaven! The look of pleasure and joy on her face was just priceless. I didn’t take any pictures or video tape it and I’m kicking myself in the pants now! I really didn’t think she was going to like it. Boy was I wrong! This is what I did and it was so simple (when I tweak the recipe, I’ll give the measurements, take a picture and add it to a new category “Recipes”)…I boiled up some rice pasta, and in a separate pan, heated up a mixture of rice milk and coconut milk, threw in some raisins and cinnamon and a little bit of confectioner sugar. I know, I know, bad grandma! But I didn’t want to add honey. It was only a little tiny bit of sugar, but it helped with the taste. The rice milk helped to cut down on the thickness of the coconut milk and once the pasta was done, I just added pasta to the milky sauce. I also took rice from the night before and made a separate dish with the same mixture. The one with the rice ended up tasting like rice pudding.
You should have seen the look on her face. She put the first bite in her mouth, and her eyes literally rolled into the back of her head. The she smiled, breathed a big deep breath in through her nose, put her head back and closed her eyes. Being the big baby that I am, I just started crying. She ate every last bit of it and every time she took another bite, she did the same thing. I was so distracted by her emotional reaction to it that I just sat there crying and smiling. I wish I would have filmed it.
Tags: Food Allergies, food sensitivities, Neocate, nutrition, WIC
March 4th, 2009 at 10:11 am
Hello Simmi’s grandma! When I saw the post about a blog just or Simmi it dawned on me you need to get connected with Ria Sharon. I know her personally and she too has a son with terrible allergies. Her website about children’s allergies is: http://www.checkmytag.com/
I wish you all well, as always!
March 4th, 2009 at 10:28 am
Hi Tara,
I have been over to Check My Tag…she has a great site. I added her to my blog roll because she is one of the sites that I visit concerning food allergic children.
Thank you for stopping by!
March 4th, 2009 at 8:48 pm
It is good you are dealing with her allergies now, not ignoring it. I grew up with food allergies and a lack of acknowledgment, despite the constant reactions. That recipe sounds delicious! I would try it myself if not for the coconut milk. (Allergic) Perhaps you will eventually create a cookbook!
March 4th, 2009 at 10:32 pm
Hi Kat,
It must be so difficult having so many allergies. I really feel for you. I don’t suffer from food allergies, although I do have an extensive list of other types of allergies. One of the things that I am curious about is whether it is painful when a person who is food allergic ingests something. Simmi can not speak and her only way to communicate with me is by screaming. She is slowly learning how to give me physical ques when something bothers her, but for the most part, I have no idea what it must feel like for her to go through an allergic reaction.
This evening I gave her green beans for the first time, and immediately her face turned bright pink…but being so hungry she just kept eating. I felt so bad, because she was crying and eating at the same time. I tried to take it from her and that made her cry even more, and the tone of her cry was so sorrowful. I am always so scared about trying to give her something new because she doesn’t quite understand when I need to remove something that she is reacting to. Now I know that if I am introducing a new food, I have to have a back up meal very similar to what she is eating.
I would love to create a cook book, but I wonder how many pages it actually would be! LOL She is so limited at this time in her life.
Thank you for sharing your story.
March 4th, 2009 at 11:20 pm
It doesn’t always hurt. It depends on the severity of my allergic reaction. Wheat always hurts. It burns going down and then in fifteen minutes I wish I had died instead of having accidental ingestion. The more severe the allergy the worse the pain.
Do you know the signs of Anaphalactic Shock? You mention at times her face turns pink and that is in some people a symptom for the potential. I do not mean to scare you of course but, you both need to know about it. Be aware too food allergies are culmulative in most people, which makes it harder with future accidents. They will happen.
I do not know how clearly she thinks, and of course neither do you but the back up meal is a fabulous idea. My Person (significant other) does that for me, as we find new allergies. Cook Books take years, but, eventually why not?
Oh have you considered a service animal in her future? She will need to be older of course and if she is allergic the idea is a failing but my service cat helps detect allergens for me. She has saved my life several times.
March 5th, 2009 at 12:05 am
Hi Kat,
I’m aware of anaphalaxis and we had two very scary close calls. The first time was before she was tested for allergies. At that time she was only about 7 months old…we had her on Nutramagin formula because she already had pretty bad reflux, anyway, we ran out and went to the store to get more…the store was out too. We had to get her regular milk based formula, and within two gulps she started screaming, writhing and then she turned bright red from head to toe with her feet and hands turning dark purple, then the coughing and wheezing started. We gave her a massive dose of Benadryl and I stayed by her crib through out the night as she struggled to breathe.
Why didn’t I take her to the hospital? Well, I had taken her to the hospital a few other times for similar reactions and they just poo-pooed me, gave me predinsone for the massive rash all over her body as well and told me to simply give her Benedryl for any further reactions. Nice right?
The second severe reaction she had was on an airplane coming back from Alabama. After telling the flight crew over and over that Simmi was highly allergic to peanuts and could they refrain from serving them on the flight (and they agreed), another flight attendant decided it would be just fine to serve them three rows behind us and three rows ahead! After all the peanuts were served I noticed Simmi starting to turn red, and although I had given her a dose before we took off (just in case) it wasn’t enough. The flight attendant looked at Simmi and said “Is everything ok?” Simmi was having one seizure after another, as well as being two shades of red. NO! I told the flight attendant. I told you she was allergic to peanuts, I am wearing signs on myself, on my child and still you don’t listen. Her reply to me was that usually people only get a reaction when they eat it. I know she was playing stupid at that point! How touchy is the peanuts on flights subject? There is such a big debate as to whether or not they should be served, and before I even took that flight, I had heard of people being discriminated against and refused a flight because they had a peanut allergy. They are very aware of not only ingesting peanuts, but also the peanut dust in a confined cabin. I had her epipen at that point and thank god I didn’t need to use it. I also had a doctor’s note that allowed me to take my own water on the flight. They gave me a hard time with that one at the gate! I asked them if they wanted to be responsible for her death because some flight attendant handed me a bottle of water so that I could prepare her formula, and there was peanut residue on it, contaminating it as well as the potential risk of me touching her after touching something contaminated. They let me through after that. LOL
What you mentioned about your throat burning is what I imagine Simmi must go through. Since she also has reflux, it has to hurt her stomach so bad also. That is what I want to avoid.