Stages of Grief?

I can't imagine what it must be like for Sophia to try a new food. I know she's only 11 months but I can tell she's nervous and yet hopeful, just as we are, when she gets something new to try.

I hate the constant worry, the dread of food trials and the list of possible reactions.

This morning wasn't the best.

I guess it's the stages of grief (if that makes sense) cycling again after our newest fail but right now I am MAD. I don't understand WHY Sophia has FPIES.

I watched my daughter scream in pain this morning. She was thrashing around so hard that I had to have Phillip help by holding her arms while I tried to get the blood and mucous filled poop off her. She screamed until I finally got the powder on. Even now, she doesn't want to sit down on her poor sore bottom.

Today, I hate FPIES.

Updating

So Sophia had an unusually rough night. Makes sense now because she woke up puffy faced and alllll stuffed up. Poor baby. We knew this was coming with her immune problems and the fact that I am sick again too. Still doesn’t make it any easier.

Last week we saw our ped GI, he def redeemed himself! He researched FPIES and had questions ready to ask us. He was great. He suspects she also has fructose intolerance caused by the FPIES, but at this point we don’t know. He also called over and got the results of the xrays to check on her rickets (that the pedi ordered). Good news is the rickets has improved!

On an FPIES front: She passed pears!  Now she has been trialing white potato. We started with mashed potatoes, which she didn’t want any part of until I mixed a little formula in with it and have worked up to diced steamed potatoes. I ordered a product called CheeCha puffs, it is potato puffs! As long as we continue on this road, potatoes will be an easy pass and she can have something to take along with us! If only CheeCha puffs were sold in the US…that’s the tricky part! $ 13.70 on ONE bag of CheeCha puffs. But the lovely people over at CheeCha are sending us a bag to trial. I am hopeful!

Next we will trial coconut because that opens up coconut milk, oil, manna, flour ETC! It will be a great thing to have  (IF she passes it!) and after coconut we will trial egg. Hopefully we will be able to squeeze these two in before her big first birthday! IT will be cutting it close so who knows J I am just happy she has 2 foods to eat!!!!!

We are making the trial food list work for us.

All in all, she is doing good (with the exception of some nightly reflux and this newest sickness)

Pears & Trials

We started trialing pears on Sunday. It is the first food that Dr B suggested.

So far so good, which doesn't mean much,but it DOES mean that no immediate reaction is a good sign. Still could turn sour though. I don't mean to be pessimistic but I think any parent with FPIES is leery of trialing a new food, especially if the child has no safe foods.

I really just want SOMETHING for her to eat. I would really want something like white potatoes or coconut that way so many options are opened for her like flours, oil, butter etc so we can MAKE something. We are working our way there though, one food at a time.

Currently our NO list is as follows:

Milk
Soy
Peas
Sweet Potatoes
Carrots
Squash
Bananas
Green Beans
Rice
Wheat
Avocado

Our "Plan of action" for trialing new foods is"

1. Pears
2. Apples (again, since we weren't sure if there was a reaction)
3. Quinoa
4. white potato
5. Egg yolk
6. Spinach
7. Lamb

Like I said, I want to try coconut, so I will be asking the allergist if we can move that up the list. It opens up so many opportunities for her! I would love to be able to "make" something for her! I know, I know...one step at a time! The last thing I want to do is take 5 steps back since we finally have a baseline (even though its no safe foods!) of neocate and neocate nutra.

To fully understand how important it is to go slowly with FPIES kiddos, here is how we trial a food:

Day 1: a taste

Day 2: a larger taste

Day 3: 1/2 tsp

Day 4: 1 tsp

Day 5: 1/2 tbsp

Day 6: 1 tbsp

Day 7: a serving

Then only that food (adding no new one) for 2 more weeks, noting any symptom and promptly stopping if any negative reactions occur.

Our Chicago/FPIES Trip (Yesterday)

When the alarm went off this morning at 4:45am I couldn’t believe it was finally time to go! We got everyone ready and started our 5+ hour to the allergist who was going to hopefullygive us a diagnosis for our little girl.

After a long trip and being slightly confused at the time difference we made it to our destination! We had an hour to spare again, time change messed us up and so we went shopping.

We were literally a block or so from the doctor’s office so when the time quickly approached, we piled back into the car and drove to Kaneland Allergy Clinic. My stomach was in knots.

We were immediately greeted by Dr. B and she was amazing from the get-go. SO impressed. She knew we were driving all that way, and had to pay out of pocket, so she cleared her whole morning and we sat in the waiting room and discussed everything while Sophia got to play.

I have a Sophia binder: a whole binder devoted to all her labs, hospital notes, test results and food symptoms. Dr. B looked over it all and said, “This is classic fpies, and this is classic fpies and this…and this….” She went into great detail about FPIES and asked some pretty amazing questions about things I wouldn’t have thought about.

We went over all her food fails and made a plan of what foods to trial next and exactly HOW to trial them. It’s definitely a process! I will get into that more after I go over the notes again.

So now (and kinda again, since we knew but didn’t know for SURE she had this) I want to introduce y’all to:

 FPIES - Food Protein Induced Enterocolitis Syndrome

FPIES is a type of food allergy affecting the GI tract; it is understood to be a T-cell mediated response in which food is considered a foreign invader.

Everyone that loves Sophia needs to understand that even a bite of food (not on her safe list) can send her to the hospital. In addition to the dangerous foods we are going to have to be careful to not keep playdough in the house and make sure that the books we have aren’t printed with soy ink. Things we never have had to think of, we have to think of now.

I have a lot to learn. I wouldn’t have thought of the playdough, until Dr. B mentioned it today.

Now that we know for sure that Sophia has FPIES we will have lots to trial, investigate and learn!

There are a couple sites devoted to FPIES:

http://www.fpiesfoundation.org/

http://www.iaffpe.org/

wa-BAM!

It's that amazing moment when something has been sitting in front of you for 9 months and then it smacks you in the face! wa-BAM!

The more I think of Sophia's nasstttyyy reflux, the more I can't believe we didn't see that all these foods were causing it. With her only on neocate, her reflux has pretty much disappeared. How did I not see this?

She went from reacting horribly to milk formula and soy formula, to neocate formula thickened with rice. We've changed the dosing every 2-4 weeks to make sure she has the most reflux meds she can because it was so horrible! She slept upright, changed upright, ate upright...it's been horrible, as most of you know. She has slept only in the nap nanny for the last several months. When she got very sick a little over a month ago they took away all foods (including rice cereal) and she was to eat only neocate and neocate nutra. Within a week we saw an improvement (no refluxing through her nose ans screaming) and a little over a month later...she is now 90% MED FREE! She is off prevacid and mylanta and only needs zantac every once in a while for night reflux. You can't say that it was just her finally outgrowing it.

How didn't we see that? :/ How did the doctors not see that?

I can't wait to get to the doctors this Friday near Chicago and get to the bottom of this! I feel extremely guilty she had such bad reflux and we didn't know why and that taking away everything led to her getting better. Now that I think about it the only other time she was not having her bottles thickened with rice cereal was when she was hospitalized,,, she got better then too! but we thought it was the med change and got discouraged when it started right back up when she got home.

Really, I can't wait to get this mess straightened out. I am thankful her reflux didn't get cause any permanent damage.

Going to Chicago

I am debating where to start explaining the events of the past week. Let me start off by proclaiming, “I am SO glad it’s Friday!”

Sophia started solids again. She failed them miserably, again. As of today we have no safe foods besides Neocate Nutra, don’t get me wrong I am so thankful for that! But she loves to eat.

I called the GI’s office and gave them the update, per their request. After speaking with the dr, the nurse returned my call and told me that he’s not worried about her not liking solids at this point. She needs to have 40 oz daily of formula and neocate nutra to meet her nutritional needs. After hearing this all I could say was, “WAIT did you say ‘not liking solids’…no no…she loves foods. It’s the throwing up, bleeding butt, reflux and not sleeping she doesn't like” aaaaaaaaannnnnnnnnnnddddddd she ignored me and continued on as I said nothing. She said that the dr wants her to see an allergist. I explained he already referred us and we saw him twice over the last month. When I explained what the allergist said, she had the nerve to tell me it was hearsay and she needed written statement from the allergist. I was about to blow.  I calmly said goodbye to process.

I asked all of my lovely ladies on my forum boards about GI issues and FPIES on what to say/do next.

The next morning I woke up to a voicemail from the GI’s office and the nurse explained that all the notes from the allergist was in her file and the dr looked over them. Nothing more, nothing less.

I called the allergist/immunologist’s office to let them know that the GI wants her to be seen again and they were nice about it, even though he said that the allergy part is GI’s problem because it’s not an actual IgE allergy and he is treating the immunology part.

At this point, I was again, frustrated. Each doctor was pointing their finger telling me to go to the other.

There is only 1 FPIES knowledgeable doctor in the state of MI. I wanted Sophia to see him, even though the wait is months to get in. Even if she doesn't have FPIES, she has SOMETHING and they need to figure it out.

On the forums I was referred to a Dr just outside Chicago. I prayed about it. I felt this was right and decided to give the office a call. It would mean driving 5 hours  and paying out of pocket to see this Dr (but if she helps Sophia I would pay 100x that). When I called, I actually SPOKE to the Dr. She was amazing. She talked to me, made payment arrangements and she said she will speak to Sophia’s Dr’s up here for us! WOW. I made the appointment a week from today! It is so amazing to know that we should have some answers 1 week from today!!!!!!

I don’t think this next week can go by fast enough. Seriously.

So I pray that this is exactly what Sophia needs, that we were guided correctly and we will FINALLY get SOME answers. 

Quick-ish Update

Sophia has been very, very sick the last few days. Between screaming, refluxing, not eating, having such watery diarrhea that it just runs out of her diaper and not sleeping because of all of the above we are all exhausted.

The doctor ordered some stool sample tests, which we handed in today, to test for rotovirus, giardia, another parasite, and some more things that I cannot remember.

Tuesday the GI decided to take her off all food besides her Neocate formula and rice cereal and we talked about direct admitting her to the hospital if her dehydration persisted. He explained that he thinks that this is all part of her non existent immune system. They gave me a list of things to get: sanitizing hand wipes, pacifier wipes (in case it drops on the floor), clorox/lysol wipes for the house.

I also made the appointment with the immunologist: october 10th.

Yesterday morning, Sophia was still in bad shape so the GI's office told me to come down and we will try this product by the same people who make Neocate. It's called Neocate Nutra. It is a semi solid, cereal like substance, that is completely hypoallergenic like her formula. Lemme tell ya, it is EXPENSIVE! A normal box of baby cereal costs somewhere around $2.99. The neocate nutra costs $35 a can. Luckily our GI's office is AMAZING and they gave us 4 cans!!!!!!!!!

Sophia ate the nutra twice yesterday and so far once today. She slept pretty good last night and so far today is less lethargic and fussy and is actually eating small portions of nutra and her bottle!

While the no food besides neocate & neocate nutra is by no means a solution, I am hoping that in-the-mean-time-in-between-time this is something that will help her stay as healthy as possible until we see the immunologist.

Bubble Girl

Our struggles with Sophia are getting, for lack of a better word, interesting.

It’s always nice scary when the nurse tells you that they are going to wait to discuss it any further because they don’t want to scare us with the possibilities.

Well the blood test came back last night and we received the results. The RAST test came back normal (DUH! We knew she had non-IgE mediated food allergies) and her CBC is normal. The trouble began when I flipped the page and saw that there were 3 highlighted portions letting us know she is low in her IgG, IgA and on the threshold for her IgM.

First thing this morning I called the GI’s office to see if they had gotten the results and if they needed to be forwarded to the doc at the conference. She said yes they got them and yes she was sending them to him and when he responded she would call me. She expected it to be after lunch before we heard from him.

I received a phone call 20 some minutes later. She explained that the Doc looked over the results and that Sophia is immunocompromised, meaning her immune system isn’t working properly. They explained that she is being referred to an immunologist and they will have a better idea of the why’s but for now she said that we needed to see our primary doctor to have Sophia looked over. She told us that when we get to the family doc that we needed to tell them that she can’t wait in the waiting room because she has a compromised immune system. We would also check in with them again after that appointment.

The appointment was useless but we did get medicine because Sophia has a yeast rash (again). They just told us that the immune system works like this and don’t take her to public places where she can get sick….oh and wash our hands a lot. <- I knew that! And we went home.

I am so glad that the nurses (and the GI) took the time to really explain what we should/shouldn’t be doing right now; last thing I wanna do is screw this up and end up getting her sick!

For now we have to:

Not take her to public places.

Frequent hand washing and hand sanitizer for everyone in the house.

Keep common areas of the home wiped down with Clorox wipes.

No sick visitors (or recently sick)

No church, daycare, school etc

Stay away from common allergens, smoke and keep water out of her ears.

When I asked (Yes I know I probably shouldn’t have!) more of why they thought she had such test results. She told me that it could be auto immune diseases…something about bone marrow and then said that it’s best not to scare me and just wait for the immunologist. Well consider myself scared!

I know that besides the really bad yeast rash (which came out of nowhere and went from nothing to really bad in a matter of hours) and her normal food/reflux issues she seems to be currently healthy.

Praying we can get in quick with the immunologist and get some answers!

Labs: IgG and IgA

With all the problems this past few weeks the pediatric GI ordered a full blood workup.

Yesterday night we picked them up and I turned to the RAST test results (because thats all I wanted to know) and as we though, they came back negative. As we spoke to the GI last he agreed she has non IgE mediated allergies.

Anyway I flipped through casually and noticed some things highlighted. IgA and IgG were very low. I didn't even know what that meant but knew it had something to do with the immune system.

This morning at 8:02am I called the GI's office and spoke to the nurse. She sent the results to our GI (who is out of town at a conference) and said it would prob be 4pm before we heard anything back.

At 8:46am I got a phone call back from the office. He took a look at the results and said that they are def abnormal and because of the IgG and IgA results she is considered immunocompromised and he is sending her to a pediatric immunologist as well as getting repeat labs with subclass to pinpoint the low IgG subclass.

So now we wait for a phone call sometime this afternoon to tell us exactly what we can/can't and should/shouldn't do until we wait for the appointment with the pediatric immunologist.

The nurse was trying to be helpful with information but really ended up confusing me more.

Doing my FAVORITE thing ever...waiting....

Flares, Blood Test and Upper GI

Sophia's reflux starting flaring last week. It felt as though we weren't giving her meds at all! She screamed the horrible, ear piercing scream that we haven't heard since she was put in the hospital at 3 months old.

Several phone calls to the on call doctor this past weekend and we added yet another medication, Reglan, to the mix. I had mixed feelings about it, but as the doctor said it would help with motility and "in theory" push food along instead of allowing it back up, I was willing to try anything. But then in the back of my mind, my "mommy voice" kept telling me not to give her that medication.

Good thing too. She was prescribed the incorrect dosage, which COULD have caused involuntary, seizure like movements.

Concurrent with adding the reglan (which she never took) he upped her prevacid (again!) to her current weight and that seemed to do the trick!

We also decided to cancel her PH probe. We couldn't justify taking her off all her meds for 2 full days prior to the probe, having the probe put in at POPS (pediatric outpatient surgery), making her wear arm no no's and have the probe in for another 24 hours. Especially when the end result would not help her treatment plan in any way.

We have talked with the doctor (through the nurse, because he is away at conference) and he decided that she needs to have a full blood panel done again, which she is currently having done right now thanks to daddy (yep, I didn't wanna see my baby being poked again!) ...Doc ordered a regular blood panel, an immune system response (something or another) panel and a RAST blood test <- again. Which is pointless in my opinion, because she has non-IgE mediated food allergies (which is a fancy way of saying they won't show up on the RAST testing)

So now we wait for the blood test results, and an appointment with the GI to plan our next move, which will most likely be an upper gi/ endoscopy.

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

Click here to view this photo book larger

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. 

3/3/12

Sophie has continued to have a raw bleeding butt, mucous blood tinged stools, projectile vomiting and FUSSSSSSY.

I finally had enough. I was at the breaking point. I couldn't stand to watch my 2 month old go through such pain! I spent one WHOLE day on the phone trying to stay polite while not crying from frustration. We got Sophie an appointment at a GI doc March 26th. We also saw our pedi and got her 2 prescriptions for her butt and a prescription for a new formula.

We also have a tentative diagnosis (tentative because the GI doc has to agree) MSPI with reflux.

 MSPI: milk soy protein intolerance

It's a whole world that I haven't been in since I was little, too little to know how involved it is. My sister Emily had issues with soy, dairy, egg and gluten etc

The neocate formula is an amino acid formula for babies with allergies. We are currently on day 2 and we have already seen an improvement! Although I didn't realize that the rice cereal we use to thicken the formula for her reflux, contains soy!! So we are switching to a new milk & soy free brand.

So hopefully Sophie is on the mend. I'm looking forward to the GI doc to have some final answers and a diagnosis on paper. But as long as she continues to get better, I don't care how it works out!

Feb 15, 12

Well Sophie has thrown us for a loop!

 She started off exclusively breastfeeding. She developed a mild case of jaundice (my milk hadn't fully come in yet) and they told me to supplement with formula to get rid of her jaundice. She had horrible diarrhea causing a raw, bleeding butt at 1 week old. She also arches her back and screams while eating, stopping to be burped every ounce. We stopped the formula and I continued breastfeeding until 3 weeks old when we switched to Gentlease formula for possible protein sensitivity. Still nothing. Then we switched to soy for lactose intolerance...the diarrhea went away and her butt healed!! But she is still screaming while eating.

We made a doctor appointment and they switched her to the hypoallergenic formula Nutramigen. Now she is spitting up...a lot! She is on a waiting list to be seen by a Pediatric Gastro Dr to figure out the next step because our dr admits she's puzzled...but we are thinking it was silent reflux that turned into full blown reflux with a bout of lactose intolerance thrown in.

I called and talked to our regular doc today and cancelled Sophie's appointment for friday.  Also I called and begged for an appointment for Sophie to see the gastro doc...I am waiting for them to call me back. Plus I'm reading all I can online about reflux and what to do to help.