My worst fear. Well, at least one of them. I packed up our bags and headed out yesterday afternoon to a meeting. It was a half hour drive to get there, and about 45 minutes into the meeting Elianna starting signing her flappy finger gesture for a bottle.
That was when it happened. I realized I had forgotten one. No bottle. No bottle in the diaper bag or in the car. No way to feed her. Panic.
Borrow an alternative? No way. Not for Elianna. Are you kidding? She won't even let us feed her with a spoon. I tried changing the spout on her bottle this week one time at bedtime when she was half asleep. I changed it from an Avent bottle nipple to a silicone NUK bottle top that had more of a spout shape, and she screamed and tried to unscrew the top of the bottle. She can't swallow successfully from a cup, and she refuses to drink her 'soup' from a straw. In my panic I tried to feed her from a small regular cup which almost resulted in a huge mess. She tried to throw it and the screaming began.
Luckily the meeting was also a with a personal friend so it was a meeting-slash-playdate. I have to GO! We jumped in the car and headed to the nearby Safeway. Sounds fine except that Ellie goes from 0 to 900 in about 2 seconds. She has ALWAYS been that way. Personality? Maybe. But I am certain that broth goes right through her and she has never been too fond of feeling hungry. She always lets us know quite loudly.
I drug both kids into the store at a dead run because we had limited time to get there and to piano lessons. Moriah was screaming "I cant run that fast mommy!" and Ellie was just plain screaming. Lovely. Another opportunity to be 'that mom' in the grocery store.
Bottle purchased we loaded back up and I filled it for Ellie. In an unwashed, cross contaminated bottle. And all I kept thinking was 'major mommy fail'.
It doesn't matter that she is no longer on the restricted elemental formula. She is still sensitive. Extremely sensitive. All I could think about was the cardboard dust and adhesive dust (corn) that she was ingesting on this unwashed bottle.
I had times in the past that I thought I did not have a bottle packed or ran out of broth too soon, but I always found something stuck in the diaper bag or was not far from home. This time there was nothing. No spare packed in the trunk. Nothing. And it was an incredibly horrible feeling. When she was on formula I carried a box in the trunk with extra water, formula and water. I guess since I can not pre-pack her soup I took out that box and never restocked it. Clearly it is time to!
Holy crap....my heart is racing and I am tearing up just reading this. I know exactly what you mean about 0-900 in 2.2seconds flat (Sam did that yet again today- and we were only across the street at a neighbors!). But we've been further out. It's a nightmare! It puts me in a panic just thinking about it!ReplyDelete
Yikes! That must have been a terrible feeling!!! Any signs of reaction from the unwashed bottle?ReplyDelete
OK so part of me is thinking 'oh please Nichole why is this such drama? mellow out.' But you validate me! It is such mommy panic to not be able to feed them! And I know you understand. You have been at it longer than I!ReplyDelete
I am with Joy - my heart was racing to read this whole post - anxiety!!! This is also one of my biggest fears!!ReplyDelete
Yowzers! Time to leave a couple spare bottles in the trunk of your car.ReplyDelete
The panic is rising in me right now. We share the same fear. And I will let this be a lesson that I can learn from, it's time to stock up the car!! Hugs!ReplyDelete
I had no idea this happened yesterday :( I think for most of us it is a BIG fear. I keep their food and meds in the car just incase. Both kids are like that. They barely give any warning before they are screaming for their bottle ;) at night with both of them sleeping in our room it sometimes goes very wrong...lolReplyDelete
This is scary though, I know you can't wait for tomorrow!
Really?? YIKES!! :(ReplyDelete
And all you ate was CORN chips and Salsa with SODA??? Where was your tub of ice cream and chocolate bars to dip?!?!!
LOL I am so glad I went ahead and posted this. I feel so validated. :)ReplyDelete
What have you done to make sure your child is having a normal childhood? I'm reading mountains of pages of your hysterics and your child's habitual manifestations of 'refusing' to eat, and it's all being created by your obsession of her condition, which I've read usually lasts only until they're 4 years old. What long-standing consequences do you think this will have on her, when she's beyond this phase? I suggest trying to help her have a normal life, start seeing a therapist (because you're obsessing) and relax... not EVERY rash is FPIES, you know. Kids get rashes... your tunnel vision creates every situation to be a 'reaction' like the balloon? My niece does that to her string, and she gets the very same thing, it's called Impetigo, a reaction to her own saliva on her skin. It's like wind-burn, you can put some lotion on it, she'd be just fine.ReplyDelete
Delete this if you want, I don't care, but I am reacting honestly.
I appreciate your passion for the well being of my child, and the fact that you have read pages of my posts. Ellie has never had an infection such as Impetigo, we believe because her condition is one of extreme over-reactivity of the immune system. In fact, she did not have any type of virus or infection requiring attention until she was 18 months old due to her fantastically effective immune system - which causes FPIES. Reflecting now on the balloon and string, I could see how the edges of the string amplified the effects by cutting her skin and increasing exposure. Similar to the balloon and corn starch incident, she has a permanent scar on her back from the APT done by her allergist for corn, illustrating her extreme and rare intolerance. Thank you for bringing that up because I am not sure if I ever blogged effectively about that. We were quite devastated when that additional diagnosis occurred and it is a very important piece for other FPIES families to know - that the corn intolerance can be there and so extremely severe. If you would like more medically sound information on FPIES I would suggest beginning with the medical research studies and publications compiled by The FPIES Foundation. This non-profit has a fantastic medical advisory board who are some of the leading specialists in the country. As for outgrowing FPIES by 4(I believe most studies say 2), it is much more complicated than that, particularly for Ellie. Since you have read through May, I assume you also read the information on how she had no safe food and nothing to eat since she reacts to corn. Please feel free to keep reading if you have made it this far. We have seen some incredible progress and healing with her and are excited to see more!ReplyDelete
I would say she is doing a wonderful job at making sure her child is having a "normal" childhood. It is now being found that most likely FPIES or non-Ige allergies actually are never outgrown (but could be in a dormant state if gut homeostasis is temporarily achieved). This information is coming to light with the research of a great allergist on the east coast. She is finding adults with FPIES in her research. A lot is unknown about FPIES, EGID's and other illnesses on the non-Ige allergy/ immunology spectrum. So I would say get up to date on all the research out there and keep your eyes open for a lot more to come in the following years. Think out side the box and give this mom a break. She is doing everything to care for a child with an illness that very little is known about. She is doing what nature intended: caring for and trying to feed her child.ReplyDelete
P.S. There are adults 50 and 60 years old coming back to Drs only to be diagnosed with things such as EGID's and non-Ige allergies. They are then placed on the same elemental formulas such as these sick children. So no it doesn't go away unless you help the body heal and even then you have to be very careful.
The truth is that all of these FPIES mommas try desperatly to make sure that their child has a "normal" childhood. We may not all do it in the same way and we may not all do it "right," but that is our number 2 goal. Number one at present is keeping our children healthy.ReplyDelete
It is difficult to tell what your motivation is for leaving a comment at all. You say you are simply responding honestly, but your honesty reveals your own issues - not those of Ellie Belly's mom. You reveal some sort of offense to this woman doing the best she knows how.
You woulds have to LIVE this syndrome to truly know what it is like. As much as each of us tries to give our children a normal life - THEY DO NOT HAVE a normal life.
Please do more research on "Atypical FPIES" - you will find that not much research exisits on it right now. Start out doing some research on typical FPIES and you will find that it is mostly out-dated and for the most part based on a very small number of children. The most commonly quoted study is 2 full years old (compare that to the age of FPIES in general!) and based on a whopping 31 children. The good news is that there is a lot of research going on now and in the next couple of years you will find a lot more information and some of it will not look the same as what you see now. And PLEASE don't read random websites to learn about it - go to the medical literature and educate yourself.
Here is a quote from a newer study (March 2011) that sampled over 13,000 children (only 44 actually had FPIES - THIS CONDITION IS RARE!):
"All patients had FPIES within the first 6 months of life. By the age of 3 years, 90% of the patients had recovered."
CONSIDER THIS - there are still 10% of those children who DID NOT outgrow their FPIES.
Even IF Ellie were to grow out of FPIES by age 3, ages 1 and 2 would still have been difficult at best. AND with a case as extreme as Ellie's (and many other FPIES kids I could list but won't) it is unlikely. But read on - because this kid is finding HEALING!
You may understand FPIES to be a reaction to a couple of trigger foods. Most commonly milk, soy, and rice (according to studies). I personally know of children who had 1 or 2 trigger foods and that was it. Still, I know quite a number of children/families who have only 1 or 2 SAFE foods at this point. Are there more safe foods out there for them? Probably...but FINDING them is no easy task. It is a daunting and frightening task to undertake a food trial. Will that trial end in a reaction? a rash? a belly ache? vommiting? diarrhea? fever? crying? bloating? mucus in the diaper...blood? or will my child end up in the ER with hypovolemic shock from the worst kind of FPIES reaction?
OR will this be one of the few foods that is safe? We pray every time that it is, but imagine the journey. Imagine having to police your child to keep them from finding even a crumb that may land them in the ER. JUST IMAGINE what it must be like. NO, it is not the end of the world. YES, there are SO MANY people out there who have a harder road or a more devastating condition to deal with. There is no doubt about that. No one is pretending there is nothing worse than FPIES. It just is what it is, and THIS is Ellie Belly's story - her mom's story.
Instead of so much that I would LIKE to say to you, I will offer you GRACE and say - God Bless you - truly I say a prayer to you becuase you must be going through something to take such offense to this blog.