Wheat & Puffs

It is incredibly hard to find baby finger food puffs without milk or soy and isn't sweet potatoes or banana flavored! In all the brands we have found ONE: HappyBaby organic apple flavored puffs. They are diary, corn and soy free!

We have to however trial wheat by trying these.

As I type my little girl has just a couple of these little puffs and thinks she is in heaven feeding herself! It is truly nerve wrecking to watch to see if she has a reaction to wheat.


Wait and see....

FPIES

Since Sophia was born I have learned more than my fair share about milk intolerance, soy intolerance, MSPI  (milk soy protein intolerance), food allergies...the list seems to go on and on. Because some of the wonderful ladies on babycenter.com have provided me with some extensive literature  and not so subtle nudges, I have been researching FPIES.

 Food Protein Induced Enterocolitis Syndrome

Described as this (taken directly from http://www.thefpiesfoundation.org/)

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.



It pretty much fits Sophia to a T.  The weird allergies (bananas, peas and sweet potatoes) as well as the more common ones (milk and soy). 

I forgot to mention in my earlier post that when presenting our pediatric gastroenterologist with the basic information on non- IgE allergies/FPIES he agreed 100% because of the severity of Sophia's reactions and the negative RAST testing. He said without a doubt that it IS allergies. 

There is a pediatric allergist who specializes in FPIES right here in Michigan, albeit 1.5 hours away but no way am I putting a limit on the care she receives! Just hoping the insurance will cover it! 

3rd GI Visit: August 14, 12

Sophie’s 3^rd time at the pediatric gastroenterologist was today.

First: He is very impressed with her GERD progress but is still worried about the amount of meds she is on to keep it under control so he has ordered her to go to the hospital on Sept 19^th to get a 24hr PH probe put in, basically they stick a tube (the probe) up her nose, down her throat and placed right at the top of her stomach. We will have to record her every cry, hiccup and nap for the 24 hour period it is in. The BAD part is, she cannot have ANY of her meds for 2 days prior to the procedure. He said that will be fun. <-seriously he said we will be in for a fun 2 days… I can just hear his voice dripping with sarcasm as I type this…

Once we get the results (2 to 3 business days after the PH probe is complete) we will know the severity of her reflux and know 1. How to better handle it and 2. Any further testing to be done.

Second: He reviewed her latest tests and decided that the severity of her colitis and shedding of the lining couldn’t be “just” intolerance. Even though her RAST testing came back within normal range (at 3 months old) he said it is an actual immune response. He will be prescribing an epi pen for severe cases once she turns 1yr old. Also he told us that she will be on formula (but graduating to toddler formula at 14 months) until age 2 but wants to test periodically with Nutramigen formula between the months of 10 & 12 and 16 & 18 to see if she can handle the broken down proteins in Nutramigen and we can better scale her allergies.

On a good note he is glad that she has finally gained all the weight back that she lost when she was so sick and is perfect! He said the Neocate has done wonders the last 5 months and we won’t take her off until we both feel she is ready.

He did say that her allergies to bananas, peas and sweet potatoes should be outgrown by age 5. He emphasized on the word should. As for new foods he gave us a tip to cause the least amount of GI upset. He said to place a swipe of the new food in her left cheek as well as a swipe on the outside and wait for a reaction. If no reaction (he said obviously the food on the outside will be wiped off) we can try half a teaspoon the next afternoon and increase from there. No more than 1 new food every week and give it a week after the “fail” of a food to move on <- which we knew.

Overall it was an exhausting trip. I am grateful for this doctor though, he is extremely thorough and he actually listens!

Photo Book

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Photo books are the perfect gift for any occasion.

Post Hospital Stay 3/30/12

After many tests:

• blood work
• abdominal ultrasound
• head CT
• upper GI
• more blood work & cultures
• echo
• complete skeletal scan
• physical therapy 2x

The doctors decided that Sophia has colitis, an inflammation of the colon (and shedding of its protective inner layer), due to milk and soy protein allergies.  They are keeping her on Neocate formula for this and they don't expect her to outgrow it by 1yr like they thought. 

She has bad GERD (reflux). They watched her GI and on her "bad" reflux times she refluxed all the way to her ears! So they added a 2nd medicine and so far, SO GOOD! It has been helping. She is on 1 acid reducer 2x a day and 1 acid neutralizer 2x a day.

She also has a kidney & UT infection. They were worried it was sepsis but said they got it under control in time. She was on IV antibiotics for 48 hours and will be on oral antibiotics for 14 days. At the 14 day mark they will do an ultrasound to check for scarring and to make sure the infection is gone. She has to lay low for 2 weeks to heal, and to ensure she doesn't get a secondary infection. 

Because Sophia is on such special formula, which doesn't have vitamins (like vitamin d from milk), she is deficient. So she has to be on vitamins 2x daily for the next 8 months. 

We are going to have to print off a schedule/checklist for every day!

We are praising God that she is doing so well now and that we have a diagnosis!

We want to thank each and every person for everything they did, even if it was "just" pray. We are thankful for such love & support. 

Hospital Stay 3/29/12

You know when you watch a movie or show and the person is receiving bad news…1 of two things happens….1. the phone slips out of their hand and bounces to the floor in slow motion or 2. They can’t hear anything after the initial shock of whatever it was they were told.

It’s true.

When I received the phone call that Sophie had direct admit orders to the hospital and they wanted for us to pack for a long stay… everything went into slow motion. I immediately tried to think of questions but when his answer was it was best to come in. I shut down. I started crying, really really crying. I could hardly breathe. I kept dry heaving. I told PJ as much as I could. My Mom & Sarah came over, Sarah stayed with Phillip & Hannah and my Mom, PJ, Sophie and I went up to the hospital and my Dad met us there.

Rewinding a little bit to Monday. We drove to UofM for Sophia’s GI appointment. We saw the nurse practitioner and she basically told us that she was fine and her family doctor could take care of everything.

Tuesday evening we received a phone call that they had an opening with Sparrow GI and asked if we wanted it. After much debate we decided a 2^nd opinion (4^th counting  family doctors) couldn’t hurt.

Wednesday afternoon at 2pm we arrived for her appointment. Within minutes of the doctor walking into the room he started spewing things like webbed intestine, neurological symptoms and surgery. He ordered LOTS of blood work, Upper GI and head CT for tumor and/or brain malformation. We did the blood work and were just waiting for insurance authorization for the other 2 tests. I left there in a slump, not knowing what was really going on. My heart hurt and I was angry that it took this long for "them" to listen. I was scared.

We got home about 4pm and got settled in. My Mom was watching Phillip & Hannah while we went to the GI doctor. She took Phillip home with her. It wasn’t a half hour later and the GI doctors number shown on my phone. I answered it and that’s when he said something was wrong.

It is still fuzzy. I was terrified, my stomach felt like it had fallen to my toes. He started talking about sepsis, metabolic disorders and that’s when he told us to head straight to the hospital.

When we got here there was a team waiting.

We don’t have many answers yet. As I write this she just getting done having her Upper GI. She had her head ct which came back normal, blood work showed infection so they started her on antibiotics, xray of her abdomen (still not sure what they said about that) and still have more scheduled.

I keep praying. That’s all I do every second. I am feeling lost, scared and hopeless. I finally figured it out though, why PJ (or I) haven’t gotten a job, we were supposed to be here for this. I am just angry that it took this long for someone to listen.

Keep praying for my baby girl. Pray for my other 2, who don’t understand. Pray for strength for PJ and I. Pray for guidance of the doctors to do the right tests to find out what’s wrong. Just pray.

3/22/12

As this week is coming to an end I am finding myself relieved. This has been one stressful week! Not that this week ending is going to be some magic solution, but I am hoping that this coming Monday will be the answer to our prayers!

It started getting bad on Saturday night. We had noticed her medication not working as well as it should have been. After researching online and talking to the pharmacist, I found out that because her medication is compounded that it loses effectiveness after 7-10 days and really needs to be filled every 2 weeks not once a month. Consequently her tummy was getting extra acid and causing her more and more discomfort.

By Sunday night it was unbearable, for her and us! She was screaming in pain and ceased eating because of it. What little we could get her to take she was projectile vomiting it right back up at us before she had time to absorb any nutrients. It was the worst feeling, seeing her in pain and not being able to help her in any way. By 3am she and I were both exhausted and crying. PJ took over and I went to bed.

By 9am Monday morning it had been 12 hours since Sophie had kept ANYTHING down and hadn’t had any wet diapers. PJ and I were at our wits end. I called the doctor’s office and spoke to the nurse, desperate for any help she could give. We had to take Sophie to the office at 2 to be seen. Luckily Jerri agreed to go with me. The doc decided to schedule an ultrasound of Sophie’s belly to see if she has pyloric stenosis. She also TRIPLED Sophie’s medication and ordered it to be filled biweekly. Which in a way is good, because it will STAY effective… but the insurance won’t cover the medication and $40 monthly was a lot and now that it is $40 biweekly, it’s almost undoable. But I can’t see my baby in pain!

Fast forward to this morning and Sophie had her ultrasound. She had to not eat 4 hours prior and they expected her to NOT cry while they performed it. Sigh.

Now all there is left to do is my FAVORITE thing…wait… We should know the results of the ultrasound tomorrow sometime. We are also waiting for Monday, for our trip to the GI doctor. I am losing what little patience I do have; I don’t know how much longer I can stand to see her miserable. I am terrified there is something seriously wrong and the doctors just aren’t catching it.

So for now we wait, and pray, and try to make her comfortable.