Friday, December 31, 2010

Corn allergy testing done home style.......

Okay - not sure I even want to admit this but Matt and I have decided to test Allie for a corn allergy our style.  It's not that we don't believe her allergy test results (severe allergy to corn) but with any allergy test you always run the risk of getting a "false positive" result.  I talked to Dr. Edmonson about this and he said that due to the severity of her reaction to corn, it most likely isn't a false positive.  However, you never know for sure.  So, Matt and I have been thinking and we have decided to experiment with a little test ourselves. 

Go ahead and laugh at us, criticize us or think it's clever - it's okay and we can take it.  But desperate times sometimes calls for desperate measures.  So....if you cannot tell already, we are desperate!!!  Last night after Allie's bath, we decided to start our own version of "patch allergy testing".  I cannot even hold a straight face while I type this.  Our little experiment is so ridiculous it's funny.  Anyway, Matt got a bandage out and soaked it with corn syrup then we put it on her back.   Allie was all excited because she was getting a Princess and the Frog bandage. 

We have no idea if this little experiment will work or not but we figure it's worth a try.  Of course we are a little nervous because we don't know what type of "corn product" they used on Allie's back so maybe the corn syrup we used will be very strong or very weak - we have no idea.  Since we don't know, we have decided to remove Allie's bandage every 24 hours to check her skin.  So, at 9:00 tonight it was 24 hours - we removed the bandage and NOTHING!!  The only red on her skin was from the bandage itself.  The part that had the corn syrup on it showed absolutely nothing.  So.....I'm beginning to think our little experiment isn't working. My guess is the corn syrup isn't potent enough but you never know.  For the type of allergic reaction that Allie has (Type IV - hypersensitivity delayed reaction), it can take 24-72 hours for her body to react and start sending T-cells to the affected area.  We put the bandage back on Allie's back and we will wait another 24 hours and see what happens.

Stay tuned for results of our home style patch allergy testing. 

Here are a couple pictures of Allie with her bandage and what her back looked like tonight.

This is the start of Allie's home style allergy patch test.  Princess and the Frog bandage with corn syrup - corny I know. You can still see the mark to the left - that is where her first corn reaction was the other week.

Matt trying to take Allie's bandage off tonight - she didn't like that part.

No reaction yet - you can barely see where the bandage was.

Little miss Chloe loving her Hello Kitty pj's and slippers

Allie modeling her new tutu pajama's - these are her new favorite!

Wednesday, December 29, 2010

Test results are in

Received a call from our nurse this morning at 8:00 stating Allie's disacharides are all normal. now what?  Basically all of Allie's results from her endoscopy and colonoscopy came back completely NORMAL!  While Dr. Brown performed Allie's endoscopy and colonoscopy, he said that he could see inflammation throughout her whole system, however the biopsy result showed no inflammation.  I'm completely confused and not sure what to think about the whole "normal" results.  Dr. Edmonson (ENT) said Allie's corn allergy is severe and it's affecting her insides (because she doesn't have any skin issues) but he doesn't know how or what organ(s) it's affecting.  I figured the allergy would be affecting her GI track since she doesn't eat orally.  However, and this is my own thinking.....if Allie's GI track looks okay and the biopsies came back normal, then this corn allergy cannot be affecting her GI track to severely which in turn very lightly isn't her underlying problem causing her to avoid food.  I do not feel in my heart that this corn allergy and gluten sensitivity is the underlying problem for Allie but I don't know.  In talking with Dr. Brown and Dr. Edmonson, they said we may never know if these issues are her underlying problem or just a coincidental finding attributing to her refusal of food. 

Basically, I feel like we are back at square one - except for the fact that Allie will now be corn and gluten free.  I am hoping that once we remove corn and gluten from her diet, she will start feeling better and want to eat.  Problem is, right now we dont' know if Allie doesn't feel well - she never complains of pain or discomfort.  The only time we know something is wrong is when she vomits but right after vomiting she is back to her normal self.  So, I don't even think we are going to see a difference in Allie once she is corn and gluten free, however you never know - I just might be surprised.  I hate to be such a pessimist about this but it's just my true feelings and I was seriously hoping for answers with this round of tests.  We did get allergy answers but nobody can tell me if this is Allie's true problem or even how this allergy is affecting her little body.  This allergy result has just added one more complexity to Allie's eating and lot more hours of daily research for me. 

Of course you always have the possibility of getting a false positive allergy test.  I talked to Dr. Edmonson about this yesterday and he said that due to the severe reaction that Allie had to the skin test, it most likely was not a false positive results - however he cannot be 100% sure.  So, Matt and I were thinking of doing our own little test on her to see if we get the same results.  We are thinking of putting corn syrup on a bandage and check it ever 24 hours to see if she is having any type of reaction.  Of course I would not leave the bandage on for long because we don't want any type of reaction like she had before - she seriously had two holes burnt into her skin.  We have no idea if this would even work but it's something we are thinking about.  I'm sure our ENT would think we are crazy and just cringe at our idea but at this point it might just be reality that we are a bit crazy - lol.

The current plan is to remove Allie from all corn and gluten and see our doctors in a month.  We are scheduled to meet with Dr. Brown on January 26th and we will meet with Dr. Edmonson around that time also.  I'm not sure where to go from here or even what to really think.  I guess we are just going to focus on getting Allie corn and gluten free and hopefully we will see some type of "sign" that her insides are healing and she is feeling better.  I have many new questions for our doctors so I will start compiling them so I am completely prepared for January 26th.  One of my big questions is in regards to Allie's IgG and IgA results.  They were both high so Dr. Brown is assuming she is gluten sensitive, however I am wondering if these two indicators could mean something else is going on - or do they always represent a gluten issue?  Her B12 was high also, however Dr. Brown said he wasn't concerned about that.  When researching on-line about high B12, it talks about kidney function, etc.  I'm just beginning to wonder if it's worth looking into since Allie is such a "mystery" to the doctors. 

Overall Allie is doing pretty well.  She is still vomiting on the new Neocate formula though.  Today she vomited 2 of her 4 feedings.  Her vomiting episodes are random and not everyday so it's nothing too unmanageable - but just enough vomiting to not feel comfortable to feed her in public.  You just never know when the vomit is going to strike so we prefer to stick around home around her feeding times.  Her night time feeds are going great.  She is handling them very well and she is adjusting to being hooked back up at night.  Her daytime bolus feeds are also going well.  She doesn't fight the bolus feeds nearly as hard as the pump and backpack so that has been a huge relief for us.  She still doesn't like getting bolus feeds but she feels like she has more control because she gets to pick where (in the house) she wants her feedings.  Most of the time she picks her bed - no complaining there because it's a comfortable seat for both of us.

In case you forgot what we looked like (haha), here is our little family of 4.

Tuesday, December 28, 2010

Still waiting for results but this is what we know......

It was another long day of researching and talking to doctors.  I was finally able to touch base with Dr. Brown this morning.  He is still waiting to get her disaccharide results back - apparently that has something to do with how her enzymes help digest sugars.  I don't know much about it but Dr. Brown said it could be a key aspect if the results are not normal.  So we sit and wait.  All other endoscopy and colonoscopy results came back normal (of course).  No inflammation and no eosinophals in her GI track.  Both of those are hard to believe because Dr. Brown said there was inflammation from her esophagus through her intestines so I'm not sure exactly why nothing showed up on the biopsies.  Also, on all of Allie's previous endoscopy's she has eosinophils in her esophagus - that is why Dr. Brown was thinking she had EE.  So now there are no eosinophils???  Doesn't make sense to me but what do I know?

I also spoke to our ENT doctor today, Dr. Edmonson.  He told me very directly that Allie is to consume NO CORN OR PRODUCTS OF CORN.  He reminded me that Allie's corn allergy is severe and at this point, all corn needs to be removed from her diet.  Interesting because her new Neocate formula is 53% corny syrup.  I have mixed information about this.  Neocate is saying it's safe because the corn syrup is so refined, however Dr. Edmonson said it's not safe.  I don't know who to believe.  I did hear from a couple other tubie mom's who have a child with a corn allergy and they use a similar formula and so far their children have been okay - so is Dr. Edmonson just being on the super safe side????  Our Dietician is out of the office until Monday so I will have to wait and talk to her then.

Dr. Edmonson also confirmed this afternoon that Allie's severe corn allergy has nothing to do with her elevated IgG and IgA levels.  So, this means something else is going on inside Allie's body.  Her IgG and IgA are antibodies and they are obviously high and fighting something inside her body.  So, Dr. Brown is assuming her body is fighting gluten.  Her endoscopy doesn't show she has Celiac disease however her blood work is supporting a possible Celiac diagnosis.  So, for now, they are assuming she is gluten sensitive.  Unfortunately, this means Allie now needs to remove all gluten from her diet.  Basically she needs the diet of a Celiac patient plus no corn - this is going to be fun :-)  We went to the grocery store this evening to get Allie some new food to eat.  We bought her a bunch of corn free products last week but unfortunately, most of those products contained gluten. So, we got her a couple new items along with some fresh organic fruit, gluten free Bisquick and gluten free pasta.  All I can say is, "expensive".  Of course Allie is worth every penny of it though!

In talking with Dr. Edmonson today, he confirmed that Allie has a Type IV Hypersensitivity Reaction to corn.  Here are two websites that provide a little information about this type of reaction:

Allie doesn't have any of the skin issues so all of her reactions are happening on her insides.  Dr. Edmonson confirmed today that he honestly doesn't know how this corn allergy is affecting Allie.  He said that her allergy is most definitely severe and that it most likely is causing damage to her insides, however he doesn't know the exact damage that is being done.  So, it's absolutely necessary to get her off all corn at this point.  So, we are removing corn from Allie's diet and then it's just a waiting game to see if anything changes with her health.

Hopefully Allie's disaccharide results are in tomorrow so we can proceed with what the next step needs to be.  Thanks again for all of your prayers and kind words - we really appreciate it!!

Monday, December 27, 2010

Sat by the phone all day - then missed the call.........

Since I wasn't able to get Allie's endoscopy and colonoscopy results last Thursday, today was suppose to be the day.  I called Dr. Brown's office first thing this morning and left a message that I wanted to talk to him (not his nurses) and I needed him to call me today with Allie's test results and to discuss her new diagnosis of having a severe corn allergy.  Well, I sat by the phone all day waiting for his call.  Finally at 5:00, I figured he wouldn't be calling so I was safe to leave.  Well......that wasn't the case.  Dr. Brown left a message on our answering machine at 6:30 tonight.  We arrived home at 6:45 so I called him back right away.  I got the GI clinic's night call person and she offered to page him for me.  I debated but then decided he should be able to have a quiet evening at home with his family too.  So, after waiting all day and waiting so patiently for her results, I never did get them.  I'm a bit disappointed but there is nothing I can do about it now.  I will call Dr. Brown's office again in the morning and wait patiently for his call.

I also talked to our ENT's nurse this afternoon.  After doing a lot of research on corn allergies, I discovered there are several different types hypersensitivity reactions and I need to know which type of reaction Allie had.  Also, now that I have research this whole corn allergy in depth and discovered corn is in a TON of food, I need to confirm with Dr. Edmonson that Allie cannot have any corn AT ALL.  I know he told me on Wednesday that we had to remove all corn and corn products out of her diet, however I guess I just need to hear it one more time.  Unfortunately, the nurse was not able to answer any of my questions and she said that Dr. Edmonson would call me hopefully tomorrow.

Removing corn from Allie's diet is harder than I originally thought.  Seriously corn is in almost everything besides fresh fruits, vegetables and meat.  Even chicken could be considered to have corn in it since chickens eat a corn feed a lot of times.  Our family of 4 took a trip to the health food stores here in Wausau and we got a couple snacky items for Allie.  The health food stores didn't have a ton of stuff but it's a place to start.  Seeing our family in a health food store was quite a site - as many of you know, I was brought up eating dessert first so healthy hasn't always been my style :-)  We are being as careful as possible not to give Allie anything with corn in it but she doesn't understand yet that it will make her feel sick.  Just today she had a melt down because I wouldn't let her have her gummy bears - it's one of her favorites.  I anticipate a lot of meltdowns until she is old enough to understand her corn allergy.  So now, we just plug along and try and keep Allie corn free.  We are trying to decide what to do with the rest of us....go corn free or not?  It's not really fair to Allie if I continue to cook with corn products because then she cannot eat them, however it's not fair to Chloe if we take corn away from her.  It's a tough decision and we haven't made any final decisions quite yet.  We are still treading water and trying to figure it all out.  I'm not convinced this severe allergy is Allie's underlying medical issue but who knows.  I guess time will tell but even then, I'm not sure if we will actually know.  Allie has started vomiting again, even on her new Neocate formula.  The vomiting isn't severe, it's only once a day but it's still not right.   I'm completely convinced that Allie's little tummy just cannot handle much food at a fast rate.  She can hardly handle 4 oz per bolus feed even if it's plain water.  Anyway, I guess what I'm trying to say is that I strongly believe Allie's eating issue has something to do with her stomach volume sensitivity / volume intolerance (and her corn allergy probably plays a roll in her eating also)   

We had a wonderful Christmas and the girls of course got spoiled by Santa and everyone else.  I am happy the hustle and bustle of Christmas is over and we can get back into routine and back focusing on Allie.  I also need to start focusing on Chloe and doing things alone with her.  I feel that since so much attention has been on Allie lately, Chloe could use a little extra attention.  One of my biggest fears is that Chloe will feel left out because so much attention is on Allie - Allie needing a feeding, Allie throwing a fit because she's fighting her feeding, Allie throwing up, Allie up all night, Allie going to the doctor, Allie going for another test and the list goes on and on.

Here are just a couple pictures from Christmas here in Wausau......
The girls with their new pajama's on Christmas Eve

Got cookies ready for Santa - Allie picked out the chocolate chip because she can no longer eat them, what a kid!

Allie playing with her new puzzle

Chloe loving her new Hello Kitty blanket

Me and the girls - Chloe chatting on the phone and me and Allie laughing at something

Allie Rae with her special pancakes made by Uncle Mike

Breakfast on Sunday - typical not to see Allie at the table eating.  We no longer try to make her eat (if she is refusing) so in turn, she is almost never at the table for long.

Grandpa Ray giving Allie a bolus feed for the first time ever.  It was nice for me because it gave me a little break - thanks dad!

Our super silly girls

Thursday, December 23, 2010

Allergy Test Results

Allie got her allergy patch test removed this afternoon.  Her results were one SEVERE allergy to corn and all products related to corn.  Her allergy reaction is what they call a "delayed reaction" - meaning it takes her body 48 hours to react to the allergen.  Most people have allergies where their body reacts immediately, but in Allie's case her allergy is delayed and causing problems on her insides and not on her skin, etc. 

Dr. Edmonson was shocked when they removed the patch and seen her allergic reaction to corn.  The corn sample actually stuck to her back and when he peeled it off, there was an open wound on her back and it started to bleed.  Dr. Edmonson said he has only seen two other patients with severe reactions like Allie's.  He said that due to the severity of the reaction, this corn allergy could be her underlying issue as to why she doesn't eat.  We don't know this for sure but we will be digging deeper to figure out if that is the case.

So, after leaving Dr. Edmonson's office I felt pretty good - we actually didn't get a normal result for something.  I figured eliminating corn out of her diet would be a breeze.  The first thing I looked up when we got home was what foods we would have to avoid with her new allergy.  Well, to my surprise, a lot of foods contain a product of corn, corn syrup, corn starch, etc and etc.  Pretty much all processed foods contain a product of corn.  I called our new Dietician right away to check into her Boost Kid Essentials milk and Peptamen Jr. milk that she has been on for the past year.  Sure enough, both of those milks contain a significant amount of corn.  I immediately started to cry......this is what we have been feeding Allie through her tube for the past year and all along she has been allergic to it.  No wonder poor Allie hates being tube fed and she puts up such a fight.  Every time we feed her, she doesn't feel good.  It breaks my heart just thinking about it :-(

I tried contacting Dr. Brown this afternoon to get Allie's final results on her endoscopy and colonoscopy but he wasn't available.  His nurse said we would get results on Monday.  I was very upset about this because he promised me results before Christmas and he didn't pull through for me.  His nurse was very short with me and I was not in the mood to take any one's crap - I was a mom on a mission, unfortunately I still wasn't able to get any results.  I did talk to his nurse earlier in the day and she said that some results had come in and preliminarily they all looked "normal".  But Dr. Brown still had to look everything over and wait for the final biopsy results.  So, Monday it will be - I will be at their office asking for results if I have to!!!

So, what does this all mean????  Basically we are focusing on keeping Allie on her Neocate Junior formula - it's an elemental formula so it's safe in regards to her corn allergy.  Matt and I are of course researching which foods she has to avoid and which foods she can eat.  We will be focusing on giving her GI track a break and letting it heal.  Not sure exactly how much damage has been done to her insides since she has been receiving corn since she was born (infant formula has corn in it).  Brings me back to when she was born and I'm thinking this very well could be her ultimate problem.  Allie had severe eczema when she was an infant and we were seeing a Dermatologist.  After several months of seeing her, he couldn't get her skin to clear up so he referred us to a Pediatric Dermatologist.  Well, all of Allie's medical issues were coming to the surface so we never seen the Pediatric Dermatologist but eventually her skin cleared up.  Currently today she doesn't have any skin problems.  I don't know much about allergies but I'm wondering if maybe her corn allergy started out as a mild allergy causing skin issues but since we kept feeding her corn products, her allergy because severe?  I'm not sure if that is even possible but it makes me think anyway.

For now, we will continue to research corn allergies so we can get Allie healthy.  I am happy we found something "abnormal" but sad to get the news that her allergy is very severe.  Taking corn out of her diet is going to be challenging for us but with time and more research, we will do it.  Fortunately, with her not enjoying food, it will give us plenty of time to figure out our new eating lifestyle.  As for Allie, eliminating corn from her diet is not going to be her "quick fix".  It will take time for her GI track to heal and after that Allie will still need to learn how to eat like a normal toddler.  My last conversation with our Speech Therapist (on Wednesday), we both agreed that it is going to take a while and a lot of therapy for Allie to learn how to eat again.  So, even though we might have a diagnosis underlying Allie's medical issue - by no means are we even close to have a cured child.  Depending on the biopsy results, Allie's recovery will most likely take a very long time. If this even is her underlying issue - so many questions still remain unanswered!

Thank you to everyone that prayed for abnormal results today.  Our prayers have been answered.  Getting an actual diagnosis about your child is a bit more difficult to digest than I anticipated.  I feel bad for her because her diet is going to be a bit difficult to manage (when she starts eating).  She won't be able to eat boughten chocolate chip cookies, gummy snacks, pizza, crackers or breakfast cereal and the list goes on and on.  I know there are a lot of things she still can eat and they are healthier choices so maybe this won't be too bad.  Right now though - it's a bit overwhelming. 

Here are a couple pictures of Allie's back.  I noticed tonight that one more spot on her back was getting red and puffy so I will be taking a picture of that tomorrow if it's still red.  I read online that reactions can happen even after the patch is removed.  So, we'll see what tomorrow brings.

Please note that Allie getting this severe corn allergy diagnosis may not be her final diagnosis and it may not be the cause of her refusing to eat orally.  This is just one step in the right direction in finding out what is medically wrong with Allie.  We still know that she has tolerance and volume issues with her stomach capacity so more research will be done on that when the timing is right.  For right now, we will await the biopsy results and focus on keeping Allie corn free.

I hope everyone has a very blessed Christmas.  Hard to believe it's Christmas Eve tomorrow!!!!

Allie's back immediately after rooming the patch - notice only 1 reaction

That is her reaction to corn

Allie Rae

Ouch - they just wiped off the blood and you can see several holes in her skin.  Dr. Edmonson couldn't believe Allie wasn't fussy while wearing the patch - he said she must have a VERY high tolerance for pain because this would have been very painful.

The girls peaking on the nurse while they are waiting for stickers

Daddy & Allie.  Allie happy she finally got a bath now that her patch is removed.

Wednesday, December 22, 2010

Update on Allie's patch testing

It's Wednesday night and we are 54 hours into her allergy patch testing.  According to Dr. Edmonson, if Allie is going to have a reaction to any of the food allergies they are testing for, it should happen 48 hours into the testing.  Since Allie's medical issues have never been according to the book and she has stumped every doctor so far, they are having her wear the patch for 72 hours instead of 48.  Dr. Edmonson said that in very rare cases, people won't react to the allergen until 72 hours.  So, tomorrow afternoon at 2:30, Allie will have the patch removed. 

So far, the patch has not affected Allie at all.  She never mentions the patch or asks for it to be removed.  This week is going along much better than I anticipated.  Sine Allie is not itching her back or complaining of the large patch on her back, I'm beginning to wonder if she's reacting or not.  Part of me was hoping she would show at least one sign that she is allergic to something but so far no reaction that I can tell.  She isn't acting differently or even trying to scratch her back.  Today I asked if her back was itchy and she said, "yes".  So, I scratched on the patch then on her side (where there is no patch) and I asked her where it was itchy.  She said, "on the side" - so I have no idea if she was actually itchy or not. 

It took me an hour this morning to build up enough courage to call Dr. Brown's office to check on her biopsy results.  I am so nervous for the results - not necessarily for what they will find but for the possibility of everything coming back "normal".  Our nurse wasn't available when I called but she called back quickly and said there were no results yet.  She thinks they will get results tomorrow.  So.....tomorrow is another big day - kind of a revealing day.  Allie will definitely get results from her allergy patch testing at 2:30 when they remove the patch and she should also get the results of her biopsies. 

I have been very impatient waiting for these test results - actually tonight I was secretly thinking of tearing off her allergy patch and checking to see what it looks like under there.  I just need answers and I'm getting desperate.  I'm so nervous that everything is going to come back normal or that the results will be inconclusive.  Not sure how I'll cope if they come back with normal results.  If everything comes back as normal, we are back at square one searching for answers again. 

With all this anxious waiting, I haven't even thought about Christmas.  I almost feel like I'm cheating my kids out of Christmas this year because it just doesn't feel like the holidays in our house.  Normally I'm baking cookies and playing Christmas music.  This year I just didn't have the energy to bake cookies.  My passion is baking and I love it but this year I just couldn't do it.  My Santa duties were sporadic and unorganized.  No doubt my kids are getting spoiled by Santa but it wasn't thought out or organized like normal.  I have been making mad dashes to the stores trying to figure out things the kids can use or want.  Allie has been asking for one specific thing (new cradle for her baby) for 3 weeks and finally Tuesday night it dawned on me that Santa hadn't bought it.  That is the one thing she is asking for and I haven't even taken the time to listen to her.  Well, once I realized it, I ran to Target and Walmart looking for a cradle for all of her new babies.  This is just one example of how "out of tune" I have actually been.  But hopefully tomorrow will provide answers and I can move on and get out of this slump!!

Here are a couple pictures to enjoy.......

Allie's back 54 hours into the testing - it looks the same as the first day.  Not sure if that is a good sign or a bad sign.

Chloe always ready to strike a pose!

Allie pausing for a quick second for a picture

My kids - my life!

Tuesday, December 21, 2010

Allergy patch testing has started........

After Allie's Dietician appointment on Monday, we met with the ENT Specialist in Wausau.  Allie's patch allergy testing has begun.  The appointment to get the patch on was quick - it only lasted about 45 minutes.  Allie was very nervous to get the patch but actually she behaved quite well when they put it on her.  She sat on my lap facing me and the nurse put the patch on.  They are testing her for the following items:
 - milk
 - soy
 - corn
 - beef
 - chicken
 - what
 - potato
 - egg
 - oat
 - rice
 - saline

This is what the patch looks like

After the patch was in place and Allie was doing well, we were free to leave.  Finally, we were done with appointments and ready to head home.  Allie will wear this patch for 72 hours.  We have an appointment on Thursday at 2:00 to get the patch removed.  Most children only have to wear the patch for 48 hours but Dr. Edmonson wants Allie to wear it for an extra day since some children don't react within 48 hours.  So, poor little Allie will be wearing the patch extra long. 

Once home, Allie did very well with the patch on her back.  She didn't mention it until it was time to get her pajama's on.  She was scared to death to get undressed.  It took both Matt and I to convince her it would be okay.  She kept crying and saying, "patch off, doctor hurt".  After struggling with her for 30 minutes, she finally gave in and let us take her shirt off.  We showed her the patch in the mirror and explained that she didn't have to be scared of it.  She continued to cry until we put her pajama's on.  I asked her if the patch hurt or itchy and she said, "itchy".  My guess is that's a sign of having a reaction but I'm not sure.  Dr. Edmonson said we wouldn't be able to see the reaction until we took the patch off so I really don't know if she is reacting yet or not.  I hate the waiting game and I'm becoming less and less patient with it!

So, overall Allie's patch testing started out pretty well.  Here are some pictures of Allie getting her patch yesterday.  I'll let you know how things are going.

Thanks so much for following our story and praying for our little Allie.  We are blessed to have such wonderful family and friends!

Daddy & Allie waiting for the doctor

Allie's back with the patch to test for food allergies

Allie's back with patch

Allie is mad at the nurse

Allie still not happy

This is what her back now looks like.  She has a huge piece of tape over the actual patch.  It's going to be painful when they pull the take off :(

Allie annoying daddy by pulling her eyes down.  She's so cute - she pulls her eyes down and says, "Daddy don't like".  For some reason this freaks Matt out - lol

Allie back to normal for daddy

Monday, December 20, 2010

More changes for little Allie

What a busy day again.  We met Allie's new Dietician (Tammi) this morning at the Marshfield Clinic.  Tammi was very nice and very to the point about Allie and her feeding.  Tammi had previous conversations with Dr. Brown (GI) and Dr. Edmonson (ENT) and they were all in agreement that Allie should be taken off her milk based food and put on a hypoallergenic amino acid based medical food.  We had the option of Neocate Junior or Elecare.  We decided on the Neocate Junior for really no good reason - just had to pick one to try.  Tammi gave us the option of starting the formula right away or waiting until we got the results from her biopsies and allergy patch testing.  After Matt and I discussed it, we decided to start Allie on the new formula right away.  The new formula isn't going to hurt her even if she doesn't have any food allergies. According to Tammi, being on this new formula might actually help improve Allie's GI track no matter what - so we decided to give it a shot.

In addition to completely changing the formula "food" she gets, it was also determined that Allie needs to be put back on the night time pump.  Without the night time pump, we are simply not able to get in all the calories that Allie needs to grow.  Due to her tolerance or volume issue, if we feed her too much formula OR to fast, she vomits it out.  Apparently her stomach is very small and cannot handle anything over 4-5 ounces in a half hour period.  Doctors haven't been able to figure out what's wrong with her stomach either.  Anyway, the new plan is that Allie now needs 1000 - 1100 calories a day.  Our previous goal was 900 calories a day but due to her volume issues and not having enough hours during the day to get the formula into her, she was only getting about 675 calories.  So, this is a huge increase in calorie intake.  Not sure if Allie can handle it but we will give it a try.  Since starting the backpack feeding regime, Allie hasn't gained any weight, she actually lost a couple ounces.  So, we are hoping with pumping more calories into her, Allie can plump up a little bit so we have a tad bit more wiggle room to start on her oral eating skills.  Right now Allie is 31 months old and weighs 24 pounds with cloths.  She is below the 3rd percentile for weight - however at least she is finally on the charts.

Allie's new formula is in powder form so I feel like I'm back to having an infant in the house with having to mix her formula at each feeding.  We were spoiled with having her previous medical food be in liquid form already.  There is a liquid form out there and our Dietician is trying to get us some samples to try.  My biggest concern is that Allie loves her Boost Kid Essentials.  It's basically the only thing she takes orally.  Since that is milk based, she is no longer able to have it.  The Neocate Junior formula doesn't taste anything like Boost and Allie wouldn't even drink it tonight.  We got a sample in tropical flavor and honestly I tasted it and I didn't like it either.  Tammi said that we can also order it in chocolate flavor but I'm thinking that's not going to be the best either.  For any of you tubie mom's out there, does your child drink Neocate Junior orally or do you just tube feed it to him/her. 

We spend an hour and a half with the Dietician and we came up with the following plan:
 - Allie is fed at night with her feeding pump
 - Allie will receive 4 bolus feeds a day with each feed being approximately 5 ounces
 - Allie will receive only Neocate Junior in her tube and will drink it orally

Am I happy with this??????  To be completely honest, NO!!  If anything, I feel like we are taking a huge step backwards.  Allie is now on a less normal formula.  Most people (unless you have a tube fed child) haven't heard of this formula and it's even more expensive than our previous formula.  We are back to counting scoops and mixing powder with water.  We are back to using the night time pump which is another step backwards.  We worked so hard at getting her off the night time pump and it obviously wasn't successful.  I understand we might need to take these steps backwards in order to move forward one day but this wasn't exactly what I was hoping for from this visit with our Dietician.  To be honest, I don't think I would have been happy with whatever the outcome unless the Dietician said, "let's stop all tube feeds and see what happens".  I always have very high expectations for the doctors visits and each time I get disappointed.

So tonight, we had to hook Allie up to her pump and it was a battle.  She didn't want to be hooked up and I don't blame her.  When I told her she had to use her pump at night, her first words were, "I can't get up when I wake up".  She's absolutely right - she is restricted to her bed in the morning until I go and unhook her from the pump.  I tried to reassure her that all she needs to do is say, "mommy I'm awake" and I will be right there to unhook her.  Now we are back to using the monitors because I'm always so scared she is going to get tangled in her cord or start vomiting, etc.  The worries of night time feeds are endless.......

On a positive note.....Allie no longer has to wear her pump and backpack during the day.  I asked her where she wanted to put her backpack since she doesn't have to wear it anymore and she said, "outside".  Chloe said "but it will get cold" and Allie responded with "that's okay".  Allie was very happy to get rid of her backpack.  I'm just praying she handles the bolus feeds okay so we don't have go back, to using the pump and backpack during the day!!!

Allie also started her patch allergy testing this afternoon.  I will update on that tomorrow.  I'm tired and need to get some rest.  I'm sure it's going to be a long night with Allie.  She never sleeps well when she is hooked up to her pump. 

Overall today was a successful day and we are making progress.  I cannot wait to get results from her biopsies and the allergy testing.  We should have answers to those tests by Thursday!

Daddy and his girls counting cars going bye at the Marshfield Clinic.

Sunday, December 19, 2010

More doctors for Allie tomorrow

Allie bounced right back to her normal self after her surgery on Friday.  By Friday evening, Allie was happy and playing like normal.  Allie was more tired than normal but besides that, you would never have knows she just had a endoscopy and colonoscopy.  Kids sure bounce back quickly.

Since Allie was feeling so good, we decided to head to our hometown (Escanaba) and start celebrating Christmas with the family.  We celebrated with Grandpa Dave and Grandma Dori on Saturday night then Great Grandma Saari on Sunday morning and finally the whole Delmont group (30 of us) on Sunday afternoon.  It was a quick trip home but it was great to see everyone again.  We got back into Wausau tonight around 8:00 or so - we are all settled back in and the girls are snuggled up in bed. 

Tomorrow is another big day for little Allie.  We are leaving for Marshfield in the morning because Allie has an appointment with her new Dietician at 11:00 am.  I'm very anxious to meet the Dietician and see if she has seen anyone like Allie before.  I cannot wait to discuss Allie's needs and see if she has any suggestions on her tube feeding schedule that might make life easier for all of us.  Like Matt and I discussed tonight, we cannot continue on with Allie like this.  She hates her tube feeds so much and her fighting each feeding is draining us.  I told him that I cannot do this much longer.  I know she needs her tube feeds to survive and OF COURSE I will do what I have to for her but we need to get to a point where she doesn't fight us so much when it's time for a feeding.  The emotional aspect of it is draining for me and I know it's draining for her too.  At this point, Allie prefers bolus feeds over her pump and backpack but she just cannot handle the volume of milk required at for each bolus feed.  Today for example, she drank some of her Boost Kid Essentials milk orally so she only needed 4 oz of Compleat Pediatric food.  Matt bolused in 4 oz and she threw up 2 ounces 5 minutes after her feeding.  Her little tummy just cannot handle 5 oz of liquid at one time.  Anyway, I'm hoping the new Dietician can help us come up with a new feeding plan - something that will work a little bit better for our family.

After Allie's Dietician appointment, we are heading back to Wausau and going to meet the ENT doctor.  Allie starts her allergy patch testing tomorrow afternoon.  I'm praying this patch testing going okay for Allie.  I have talked to several people and each one of them indicated the test was traumatic for their child.  I have actually thought about cancelling the testing because I'm not sure if Allie (or me) can handle much more , but the drive in me keeps pushing.  You just never know when "that one test" is going to provide the answers we need.  So, we will continue on with the testing and pray for the best.  Pray that the 4 days of wearing the patch does not traumatise Allie, however we also pray that it helps us find some answers.

I was reminded today of how abnormal Allie's appetite really is.  Matt and I are to the point that if Allie chooses not to eat, it's okay because she gets her tube feedings.  We know she is getting all of her nutrients through her tube.  My dad on the other hand is still trying to get Allie to eat.  Bless his heart for not giving up but he's not making any progress either.  Actually, Allie is eating less than she did 6 months ago or even a year ago.  She goes through spurts of eating a little more but then slowly goes back to not eating.  Anyway, my dad tried so hard to make Allie eat breakfast with him.  Then he tried again for lunch.  He didn't understand how she didn't want my mom's homemade pot roast with potato's and carrots.  He tried everything to make her take a bite and she just simply refused each time.  Finally my dad gave up and ate Allie's portion of the roast.  For supper, we were celebrating Christmas with the Delmont's and my dad is sitting next to Allie.  I fixed Allie's plate and she got a heaping blob of cool whip and 1 pickle (and her feeding pump).  Again, my dad tried feeding Allie.  He tried sneaking beans or pieces of meat dipped in the cool whip but Allie knew better.  She could tell each bite that wasn't just cool whip and she refused it.  In the end, Allie did eat one little bite of a baked bean and then all of her cool whip and the pickle.  That was a good meal for her.  My point though is that I thought I was basically numb to Allie not eating but seeing all of this today just reminded me that it really does still affect me.  It makes me sad to see everyone else eating and Allie not enjoying food.  She has absolutely no interest in it and it just doesn't make sense to me.  I get upset because I'm mad at the doctors for not being able to figure this out for her.  With all the medical technology available these days, how can they not figure out why a little girl won't eat.  Why can't they figure out why her little tummy cannot handle 5 oz of liquid food at a time.  Why, why, why - I could go on forever!!!

With the patch testing alone, this is a big week for Allie.  At least her big week will end with a big boom - Santa coming!!!  The girls are getting very excited for Christmas and so are we.  With all the medical drama happening in the Berndt house these past couple weeks, my Christmas spirit has disappeared dramatically.  I have a lot to be thankful for so I'm counting my blessings and putting a smile on my face. 

Our life may not be perfect but it's the perfect life for us!

Saturday, December 18, 2010

Allie's Procedures Done

Just a quick update to let everyone know that Allie is doing well.  Thursday her prep day went much better than expected.  Allie started pooping around 5:00 or so and she went through about 15-20 diapers. She didn't complain of a sore butt but did spend a fair amount of time in the bathtub.  She had her last big blowout at 7:00 Friday morning - so she was all good to go.

She was so scared when we got to the hospital.  She knew what was going on and when they wheeled her bed into the room, she totally freaked out.  She would scream every time a medical professional walked into the room.  We of course requested verset and she got that eventually but even with that, she was very aware of who was around her and who was in her room.  She did fine until they took her away from us - she was so scared and you could see it in her eyes and her expressions. 

Dr. Brown said that she went to sleep well and they got her IV in pretty good.  The endoscopy and colonoscopy lasted an hour and 15 minutes.  Dr. Brown said he took a lot of biopsies.  He did say that almost all of her upper GI is inflamed and some of her lower GI is also.  He said from what he could tell on the inside, it doesn't look like it represents Celiac disease.  He said that her villi are enlarged and not shrunken as a normal Celiac patient could have.  However, he said we wouldn't have any definite results until after the biopsies are evaluated.  Dr. Brown feels very confident that we will get some answers from these biopsies.  We should get results before Christmas - hopefully. 

For once, the hospital let me go into recovery with Allie before she started waking up.  So, her wake up from the anesthesia went very smoothly.  That was such a relief because every other time she was put under, her wake up was awful.  So, we sat and cuddled for a good hour while she slept soundly.  Eventually we woke her up because I was starting to get nervous she wasn't going to wake up.  We spend another half hour in the hospital and then were home around 3:00. 

Once home, Allie did great.  She laid around for about a half hour and then she got up and started playing.  She had one bowel movement which did contain some blood so I have to watch that.  Dr. Brown said it's normal to have a little blood in her stool but not a lot - this was a bit more than I thought should be there so I'll watch it closely. 

Monday morning we are heading to Marshfield for an appointment with Allie's news Dietician.  We were not able to find a Dietican in Wausau that works with toddlers with feeding tubes.  After her appointment with the Dietician, we are heading over to her ENT doctor to start the allergy patch testing.  I'm really not looking forward to the allergy testing.  We got back to the ENT doctor on Thursday to have the patch removed and discover what she is allergic too.  We know she is allergic to something but just do not know what yet.  According to Dr. Brown yesterday, he's thinking she may be allergic to milk.....hmmmmm that is what we have been pumping into her tube for the last year.  So, I guess I cannot jump to conclusions and I just have to wait for the results of her biopsies and allergy testing.  I feel like we are finally getting close to some answers  I just pray I'm right!!!

Thank you to everyone for your thoughts and prayers yesterday.  It was a very hard day watching Allie go through yet another procedure/test.  As she gets older, it seems as if it gets harder and harder for her.  No matter how silly this sounds, please pray for "abnormal" test results so we can get some definite answers on our little Allie.  Thank you!

Here are some pictures from Allie's big day.......

Allie doing some serious sticker work

Allie still being cheesy

Allie supporting the "infant" gown - the toddler gown was way to big for her

Allie & mom doing stickers

Daddy & Allie relaxing

Say cheese

Allie right after her verset

Me and Allie

Playing peek a boo with daddy's hat


Silly girl

Allie being taken away

Allie not wanting to wake up

Allie starting to wake up

Finally a smile and we are ready to head home