Okay you get a second post today because I actually wrote most of my last post the day before, but I was just lazy and went to bed early before posting it.
My daughter has FPIES aka Food protein-induced enterocolitis syndrome, it is a rare food allergy. http://fpiesfoundation.org/ (for more information)
So far she reacts to Oats, Wheat, Rice, Broccoli, Pineapple, and Corn. Most of her reactions follow the typical FPIES reaction of severe vomiting after 2 hours of consumption, along with change in temperature, pale skin, restlessness, gassy, and diarrhea. She does not have any IGE reactions to foods yet (so no hives, or anaphylaxis).
We are doing food trials this month. That’s when I introduce new foods to her one at a time, and wait… I wait for her to get sick. So far with only a few foods on her list, we are pretty good, but the foods she has reacted to are generally found in almost everything. When I food shop for her, I have to read ALL of the ingredients, because I swear that the baby food companies hide things like RICE and OATs in EVERYTHING! (No seriously, go read a baby food package, on the outside it will likely say the fruits and veggies it has, and it will leave out the oats and rice that thicken it).
Here is a sample of what we buy for our little girl
Notice how certain foods have a giant T written on them? Those are new foods, with new ingredients we have not tested. The ones with out the black hand writing are safe foods. Quinoa has been a life saver for us since most baby foods have oats or rice in them to thicken them when your baby gets older. We also recently passed puffed millet. So now she can have some cereal that she can pick up herself.
I am lucky though. My baby has safe foods. There are other parents who have children who are literally allergic to everything. My daughter used to react to my breast milk, she spit up so much and I would tell the doctor about it but since she was not in any significant pain, they said she was okay. But once I stopped eating oats, wheat and rice, she stopped spitting up and gained a ton of weight. *listen to your gut instincts parents*
Why am I posting this? Well – when I first thought my daughter had a food allergy, the doctors seemed confused about the symptoms. It is considered a rare disease. I joined FB groups for it and did a lot of research. And like many parents of children with FPIES, my daughter’s doctors didn’t know how to handle this, or test for it (there is no test currently). So I am writing this to connect to others – if you have a child and you suspect a food allergy but the doctors won’t do anything, you are not alone.
I found a great support system on facebook groups. Just remember to not be afraid to speak up. You know what is best for your baby and you know what is normal and what is not normal.
Why is it so hard to make friends when we get older? I know it’s not just me. But I find it extremely hard to find people *offline that would like to actually hang out with me. I don’t find it hard to talk to people online. There is a difference.
I have been using the internet since 1996. I have made friends via the net, some even stretch back 15 years! I ended up meeting quite a few of them as well ! Heck I met my husband online via a free dating site. But as I have gotten older it’s gotten harder to meet non-creepers online and actually feel comfortable meeting up. I made it a rule to not just “meet” with someone randomly. I like to get to know them, form a relationship or friendship and then meet.
I think maybe it has to do with my location as well now a days? I used to live fairly close to NYC but now I live in New Mexico. How did I end up here? Well, my mother moved out here from Texas. And when my son’s father decided he wanted to be with some other woman, I told him I was moving out to be near family. I didn’t think this through, I should have thought about WHERE I would be moving. I mean, New Mexico is a beautiful state, but whats out here?
Anyways, I do have a good support system on Twitter, but I am just so frustrated with trying to find some friends in person. I would like to go out to lunch occasionally, maybe hang out by going for a walk. I have two kids so pretty much anyone that would want to be my friend has to accept that. And I am married, so …no romantic stuff. I am literally only looking for a friend. Maybe I can try one of those meet up things again sometime soon? I have social anxiety so.. getting the strength to go to one of those is tough.
People tell me to try a dog park with my dog Gwen… well Gwen is a great dog, she can be shy too. (I KNOW, she took after me with the social anxiety).
Where do you meet people? Let me know, maybe I am just doing something wrong?
If you’d like to connect, I am @MyOnlySecret on Twitter. You can @ me, I don’t really do the DM though, so public messages please.
Good Afternoon world,
I am in no way new to blogging. I have to warn you that I honestly am trying to find my way in life. I am a 33 year old mother of 2 beautiful, and very difficult children. Well, not the baby, she’s not difficult, she’s just a baby. But I do have a 10 year old with ADHD, a mood disorder, sensory processing disorder and possibly ASD (we are getting him tested very soon).
I have other blogs but I failed to keep them updated due to every day life, work, stress and just over all….I would say depression. Yes, I am one of the lucky ones, I have Major Depressive Disorder (Diagnosed back in 2003). I have lived with it through the years and sometimes I do okay. Other times, like today, I cry.
I don’t want to alienate anyone, but unless you have had depression, you likely will not understand it. And even when you have had it, if you are really happy right now, you sometimes cannot connect with others who have it really bad. It’s a really sucky thing to have. For those of you aware of what depression is and how it is treated here is my shake down so you can understand me better.
I have social anxiety, but I do not have the big “panic attacks” that some people have, I just stress about EVERYTHING. My body sometimes feels like its tied into a huge knot full of pain because of this. I have MDD (Major Depressive Disorder), and have had it since I was a teen.
I am not currently medicated for a few reasons. #1 : cost of medications, #2 : my psych doctor left his practice and I have not found a new doctor, #3 : I want to get pregnant again in the next year or two and am apprehensive about starting and stopping meds all over again (we just did this, I have a 1 year old), #4 : Depression lies, sometimes I just don’t feel like I deserve anything. Including help.
Why blog now if I have failed in the past? Well… I need to blog. I just went PRN at work (I am a medical coder and I work from home) – so I am no longer full time. I did this to take care of my kids and I need to also do some self help. Will I keep this up? I hope so. Join me in my journey. I don’t mind talking to people, you can also find me on Twitter (@MyOnlySecret) you can follow me there and I do follow back often. I also want to meet others who might connect via the differences and similarities in our lives.
So hello, and welcome to my blog. Follow me and keep up to date, and if you would like me to follow you, comment away 🙂 I love to read when I have time, and I love to listen to audio books with my kids.