Our Unhealthy Past

Many of you know that we have struggled with LJ's health since her birth in 2009.

Here is a little recap of what has happened with her health:

a couple days old

At Birth
LJ, our firstborn, was born at 5 lbs. 14 1/2 oz. and 19" long. I had been induced at what they said was 38 weeks even though it was full term according to my cycle dates. I had been contracting for over 3 weeks. After I was induced, I still had a 3-4 hour labor. I had back problems during pregnancy and could barely walk, hence the induction. At birth her hips were loose, but that resolved within her first day. We waited a little while for her first bowel movement and wet diapers were not frequent initially. At 48 hours, LJ spiked a temperature and was sent to the NICU. Immediately she got a spinal tap and an IV with antibiotics for 24 hrs. From the very beginning she wasn't very good at latching and so we struggled with nursing. (Looking back I think the fever was due to poor eating and I wish I would have told them to supplement a little formula to get us started.) She also wanted to feed 45-60 minutes, which soon wore down my back and sent me into emergency back surgery when she was 4 weeks old.

NICU

 
NOTE: all vaccinations were given on time!

Early On
At 3 weeks old, she transitioned to the bottle. Unable to keep regular formula down, she went right to a soy formula. We had to watch her weight constantly as she was labeled with Failure to Thrive. (Oh if I could just talk to earlier self to help with this diagnosis.) She had baby acne right away and that lasted for a while. She also developed bad diaper rashes and eczema. She also could not eat a normal volume of milk. Projectile vomiting and arching was common at feeds. We had to try to keep her calm.

3 months old and just out of NB clothes

Even at 7 mos she could only take 3 oz of milk at a time. We charted everything she took in. We would do a happy dance if we got in 18-19 oz. in ONE DAY! (If this had not been my firstborn, I would have been a sore mess knowing that a normal baby gets 28-32 oz. a day! ) Often, LJ would refuse to eat any of her bottle. I would force it, offer it every 10 min, and often rock her as I wept. I tried to stay calm. I prayed and sang as much as I could. When she wasn't eating, she was gnawing her fist in hunger, but knowing that her tummy would hurt she would still refuse.

One nurse would ask if she had Down's. I tried to be gracious but my heart hurt. Not only was feeding my new baby so stressful, but my back kept me in constant increasing pain. One orthopedic doctor would tell me... "ehh, she'll eat when she's hungry". My pediatrician was very helpful but she didn't have answers. She kept ruling out things... but looking back a lot is so clear if only someone would have known what to look for.

I finally got a brain around 5-6 mos and took a video of a normal feed. I was so frustrated and overwhelmed that I thought... let's make these people see how difficult it is! What a brilliant idea! She was immediately diagnosed with silent reflux. (Clue: If a baby refuses to eat, cries, gnaws their fist, and eats better when they are asleep... REFLUX! Boy do I wish I would have known that. ALSO... wet burps... yep not normal! That's reflux too!) The answer they gave was Prevacid! It didn't work at all so we went off at 10 mos. (Honestly many other parents I have met with that have tried it have not had any success with it!)

Rice cereal was given in each bottle to try to weigh down the milk to keep it in her tummy. This did help her eat more regularly and kept the milk down more... but it still didn't fix anything.

7 mos old. Happy Valentine's Day!

Starting Solids 
The norm was to start solids at 4 mos, but we waited until 7 mos. and kept the bottle until age 2. We started with proteins right away. At age 10 mos she had an MRI done. Around age 11 mos, we went to a pediatric specialist in Indy and even consulted a dietician. It finally felt like we would get some help. They ordered her a Pediasure equivalent in soy form called Bright Beginnings and a powdered fatten-er called Duocal.They also ordered a Feed Study at this point because of her bad gag reflex. All came back normal.

The dietician actually made things worse :( She at first wanted us to push dairy even though she was off dairy. We had to remind her no dairy... Then, she said well push margarine or butter in everything to beef up calories... DUH that's dairy... but not thinking we did that for a little while until I got a clue and I just went back to plain food.

Thankfully LJ showed great development! In fact, she was checked out by 2 First Steps therapists at 2 separate times and passed with flying colors. They were a huge encouragement! I still remember one of them saying, "your job is to offer the food and her job is to eat it". This really helped me to have more peace at eating times! What great advice.

16 mos.

Making Some Progress
At 16 mos, LJ finally made the chart! She was 3% of the national average! I did a happy dance because she gained 3 lbs in 3 months! That was like super awesome for her! I definitely think most of her progress was from the Duocal. She continued with the recommended vaccinations and ended up with chicken pox around this time.  She also had antibiotics for slight pneumonia a few months later. 

20 mos old

At 20 mos, I finally started making a correlation to food allergies! Not sure what took so long... no one had even suggested it. I had given her Benadryl off and on for what I thought was seasonal allergies... but NEVER THOUGHT OF FOOD ALLERGIES! Geesh! Anyways, I saw a clear reaction (runny, itchy nose, sneezing right after eating at a restaurant) on our way to see a Pediatric GI Specialist and I gave her Benadryl which helped immediately. The GI specialist helped us confirm a suspicion of allergies. She also informed us that reflux is eczema on the inside of the body so it made sense that she had both. (IF ONLY SOMEONE WOULD HAVE SAID THE WORDS AUTOIMMUNE!)

At 23 mos, she had an endoscopy. She had some irritation, but other than that, nothing came back abnormal. She did suggest an allergist at this point, but being that she was so young we didn't want to do the prick tests. Instead we eliminated foods and watched that no dairy or eggs got into her diet. She made VAST IMPROVEMENTS AT THIS POINT!

2 years old--- starting to plump up for sure!

More Progress
LJ continued to have progress. Taking away the bottle was soooo hard at 2 years old. She would only take milk in a bottle and water or juice in a cup. There was no forcing her to take soy milk at this point. When she dropped the bottle, she was done! I remember our pediatrician saying... she is the most strong willed child she had ever witnessed in her practice; strong willed like her own daughter :) We tried soy milk Popsicles, chocolate flavored, and even smoothies... eventually we gave up and just offered it to her several times a week and sneaking it her oatmeal, which was a staple of hers. Instead we pushed V8 fusion juice to at least boost her calcium in take. At about age 2 1/2 she finally started drinking it on her own.

over 2 years old signing "cat" in ASL

 
Recent Struggles
She was growing very well... still a little short in stature, but the food allergies were definitely a major factor in her growth. As soon as we eliminated them, she did so much better. She also developed Urticaria at some point. Basically you break out in hives from extreme cold or heat. Thank you google! She had always complained of her bath being too warm and had broken out in hives here and there. But now it was more pronounced. 

Summer she turned 4

At age 4 1/2 she suddenly started major diarrhea. We eliminated all of the top 8 allergens to try to work it out. She got better, but no true resolve. After blood work and stool samples, we were off to the allergist at age 5. After prick testing we found that she has sooo many environmental allergies, but only one food allergy showed positive, walnuts. So... we tried introducing foods again. Wheat... not good. Peanuts... fine. Soy... fine. They called wheat an intolerance. Such a foreign word to me made me go researching again.

Several friends threw around a new word to me... leaky gut. That led me to GAPS. So that's where we are now. Suddenly so much is making sense, which is great because our third born has developed a dairy allergy and eczema! 

THIS MOMMA WANTED ANSWERS... 5 years was too long to wait! Hopefully our journey can give you answers that you may be searching for!

Are long time prayers being answered? Come join our journey... hopefully a journey to healing for our family...

The Results

I know a lot of you have been asking about the results.  I am going to do my best to simplify and explain what I have figured out the results to mean.

Biopsy Results
-negative for Helicobacter Phylori (bacteria infection)
-no signs of celiac's disease
-rare EOS (eosinophils) count of 2 in esophagus; results must be higher to diagnose as Esophagitis; could be caused by GERD (reflux) or allergies

Lab Work Results
-CBC panel showed elevated MCV (mean corpuscular volume) which measure the avg. size of your red blood cells; larger in size; probably resulting from a deficiency in vitamin B12
-CBC panel showed elevated EOS (eosinophils); type of white blood cell that react to allergic responses and resist some infections; this may be caused by parasites, blood disorders, immunologic disorders, allergic drug interactions, & endocrine disorders; not sure if any of these are likely to be causes in children
-CBC panel showed elevated HGB (hemoglobin) & HCT (hematocrit); HGB measure the amt. of oxygen carrying proteins in blood; HCT measures the % of red blood cells in a given volume; this could be caused by fluid loss due to diarrhea or dehydration
-Celiac panel showed decreased IgA (immunoglobulin gamma A) proteins that act like antibodies from secretions from respiratory & intestinal mucosa;
-RAST panel showed food allergies: moderate for eggs; low for milk and walnuts

The doctor reordered the CBC panel and ordered a quantitative panel for the IgA, IgG, IgM & IgE.  We have begun the process of getting into an allergist to get a more extensive opinion and testing.  I am suspecting we are going to find a lot more allergies and that the blood work is just pointing to that. The RAST panel was only for eggs, milk, shellfish, nuts, corn, and a few others.

This is mostly based on my studies from the internet and deciphering the dr's lovely penmanship. The lab work takes about 2 weeks, so I am sure I will have an update in the next few weeks.

Update on Leona
Leona had started the Prefacid soon after the endoscopy and had a terrible time with abdominal pains, vomitting, nausea, and diarreha, so we have taken her off.  She is doing much better now.  We are awaiting to try Nexium if she gets bad again.

Endoscopy pictures

Here is a copy of the pictures from Leona's endoscopy.

You can't really see it, but the bumps of irritation were around here.

You can kind of see the red spots of irriation.

The Endoscopy Experience

Well first of all...thank you for your prayers.  We know they were all at work leading up to and during today's procedure.

First of all, we want to publicly say thank you to Ed and Nancy Ferguson for providing a place for us to stay.  We were completely humbled by their welcoming attitude and servants spirit.  What a great godly family! We only wish we could have stayed longer to visit and get to know them more :)

So it was an early morning for us with an alarm at 6:30AM.  We arrived at the Surgery Center of Indianapolis, just north of Riley's Clarian North campus at about 8:30AM.  After about 10 minutes in the toy waiting room, we were headed in to get started.  At about 9:20 (10 min. AHEAD of schedule) they were starting the anesthesia and she was going under.  She was pretty scared with the mask on, but it only lasted about a minute before she was out.  The dr. started the scope and they had to put her under a little more because she has a really sensitive gag reflex. 

The scope took about 15 min. total.  They found some bumps at the back of her throat.  She said that the causes could be reflux, sinus drainage or allergies.  When she got to the stomach, she found some irritation.  She said this could be from several things...including not eating this morning or bacteria.  She took biopsies of the large intestine, stomach and the esophagus.  She said that they would not be able to diagnose anything until the results come back.  They also took some blood work for some main allergens (milk, egg whites, wheat, etc.).  We'll hopefully hear by next week.

The dr. did put Leona on prefacid, 15mg once daily.  It is the same amount that she was on from 5-12 mos. This was based on the bumps she saw and the fact that Leona has been vomiting again.

We went to the recovery room at about 9:40.  We waited until she woke up on her own because the nurse said that would help her to sleep off the anesthesia.  She woke up with just a little fuss and then acted totally normal...she wanted her DADDY!  We were in the car and leaving by a little after 10AM.  We were shocked to say the least! We kind of tested her out for about an hour with a trip to our favorite store...Trader Joe's and knew she would be fine to travel home. 

So...the whole experience went well.  Going into it we didn't know how we would be able to handle seeing her go through it, but we were actually thankful that the surgery center was tailored for parents to sit it on the procedure. WHAT A BLESSING!

Again...we will keep you updated!

God Provides Again

This Friday is Leona's endoscopy in Indy.  It will be just north of Riley's Children's Hospital at a pediatric surgery center which is specially made so parents can stay in the room. I am so glad!

God provided a place for us to stay through a friend's parents.  We are so thankful for His provision with a place to stay and lower gas prices! 

The Lord has also reassured us that we are making the right decision.  Suddenly out of nowhere Leona has been vomitting again.  She had a vomitting incident last Sunday that we thought was related to a possible allergy from a snack in the church nursery.  However, she did not eat anything that we know of.  The nursery workers are so careful with her allergies to milk. Then, she had 2 incidents, several times where her stomach has been upset, and bad bowel movements.

We would appreciate your prayers.  Honestly I am kind of excited about it.  Finally some more answers whether negative or a diagnosis!

I apologize if I/we have not kept in contact with some of you.  Life has just been so busy lately...well who am I kidding...life has been that way for the past 2 years.  We hope that reading this blog helps keep you up-to-date on everything here.  I will post anything we find out on Friday!

Here are some pictures I thought you might like to see:

Rachael around 2-3 years old

Rachael with her Mom (again around 2 years old)

Rachael (remind you of anyone?)

I have some other good ones that I'll have to post sometime.  When I look at pictures of me, all I can see is Leona!  So neat!

Endoscopy Is On

We met with Leona's pediatrician, Dr. Wendy, Monday and talked over the idea of the endoscopy.  She is 100% on board with the pediatric gastroenterologist, Dr. Maisel.  She puts a lot of trust into Dr. Maisel's opinion and stressed that she is one of the best in Indiana.  She also emphasized that with her experience with her other patients that have been to Dr. Maisel that she doesn't often request endoscopies.  In Dr. Wendy's opinion she feels that if Dr. Maisel warrants one, there is reason to go through with it. 

Of course, Dr. Wendy's own opinion is that it is time to find definite answers. To rule out all three possiblities, the endoscopy is needed for all 3.  The other option is to just put her on medication and see how she reacts to it, but she doesn't agree with putting her on medication for things that have not been determined or diagnosed.  She also feels that a set back could come later down the road and then we would not have any answers to go on.

SO...the Endoscopy is ON! 

It is scheduled in Indy for next Friday, May 27 at 8:30AM.

One more thing that added to our decision was the fact that Leona had a vomitting issue on Sunday right before nap time. The incident had the same characteristics of previous times, so it is definitely the same issue. She came out of our church nursery with some break out on her face, so we are suspecting some type of exposure to an allergen.

It will be interesting to see what shows on the allergy lab work they take during the endoscopy.  Of course, Dr. Wendy did say that only things that her body has had exposure to will show up so she might need further lab work later down the road.

We appreciate all of your prayers.  We are hoping to have some answers on Friday, but other results will come back on June 20.  We will keep you updated as we find out more.

Newest Update for Leona

Well, we just came back from a 2 day trip to Indianapolis.  Ben had a conference for work all day Thursday, while Leona and I went to St. Vincent's Hospital for her appointment with a Pediatric Gastroenterology appt. with Dr. Susan Maisel.

Dr. Maisel was great!  She has many awards on her wall including Patient's Choice award for 2009 & 2010.  Leona loved her and actually didn't fuss when she examined her! So I went through the last 2 years of everything and she came up with some ideas; 3 possiblities to be exact.

Esophagitis
Basically this is acid reflux.  The most likely cause would be from allergies.  The danger is that she could be getting used to it and it could be less severe now that her stomach is growing and the bands at the entrance and exit of her stomach are stretching, thus showing less symptoms.  This is prevalent in children with fair skin and red hair.  She said that this is actually a form of eczema inside the body.  One of the side effects that I had not known previously is congestion, which Leona has mostly everyday in some form. The dr. said that many adults are actually walking around with reflux assuming it is allergies b/c they have gotten used to the pain.  She suggested that I get tested if Leona tests positive. 

Leona has already had an upper GI and a feeding study which would also be used for this diagnosis and both came back fine.  Also, they had diagnosed this at 5 mos. and tried prefacid for 5 months or so.  She didn't show a huge difference on the meds.  Of course food allergies need to be tested for.

Helicobacter Phylori
Basically this is a bacteria inside the stomach.  It lives in the acid.  This would be treated with antibiotics.  Leona's previous specialist suggested this as a possibility and suggested to just treat with a particular antibiotic.  In January, she had been on some type of antibiotics, so I am wondering if that is why we are seeing less symptoms.  Who knows!??!

Celiac Disease
The last possiblity she suggested was Celiac Disease.  This is a gluten allergy and can be seen in the form of a milk allergy if left untreated.  This can lead to low weight and height growth.  This can also show in rashes which Leona gets frequently on her fair skin. We had brought this up several times to the 2 doctors, but they said that this was unlikely because she started having problems before she had solid foods.  With every bottle until 21 mos, she had it thickened with oatmeal, so she got a lot of gluten daily for a long time. This would require a biopsy of the large intestine during the endoscopy, I believe.

Ok...so that's the scoop from this doctor.  She will also take lab work and test for allergies during the endoscopy. We did schedule the endoscopy for Friday, May 27 in Indy, but are not sure if we are going to go through with it.  These 3 ideas have been on the table before, so we are making an appt. with her regular pediatrician to discuss what she thinks.  If you have any wisdom or experience to share with us, we would love to hear it.  We really want to figure this out but we don't want to put her through the endoscopy if we can avoid it.  Your prayers would be greatly appreciated too!