Thursday, April 28, 2011

Taking a break

Yesterday Allie met Dr. Brown (her GI doctor).  It was a follow up from January to discuss all the testing she has had the last 4 months.

Allie gained 1.2 pounds since January so I was very pleased with that.  Keep in mind that Allie hadn't gained any weight from August 2010 to January 2011.  So, I was very happy with this weight gain.  I'm not sure how she did height wise because according to their records she shrunk about an inch or so - which I know isn't right so they must have measured her incorrectly last time. 

Here is what we discussed: (I'll keep it short and sweet - or at least try to)

1) Blenderized Diet - Dr. Brown agrees it's working great for Allie and wants us to continue it (of course I was going to no matter what anyone says)

2) Hydrogen Breath Test Results - of course her results were normal - they always are!!!

3) Review her neuro-developmantal evaluation done by an outside source - Dr. Brown was happy with her results and confirmed she is developing normally.

4) Discussed AMT Mini (the button known as her feeding tube) - Dr. Brown has no preference between the Mic-key button or the AMT mini.  He supports us if we decide to try the mini.

5) Mito Disease - Dr. Brown has NOT ruled out the possibility of a very mild case of Mito Disease for Allie.  At this point, we are not doing any testing but Dr. Brown said he's not ruling it out just yet.

6) Allie's excessive sleeping - yup, that's still a problem.  Dr. Brown previously suggested we wake her up after 1 hour of napping.  That is not happening.  When you wake Allie up from her nap, 4 out of 5 times, she's extremely upset and will cry for 2 hours straight.  No I'm not exaggerating.  When I wake Allie up, she is not my sweet girl, she's difference.  I cannot touch her, talk to her, move at all, she kicks me and screams for me to get out, etc, etc.  It's like it's not her when she acts like this.  Anyway, both Matt and I told Dr. Brown how awful this is for us and we don't know what to do.  I hate to let her sleep so long especially because she needs an afternoon feeding, but if we wake her up, she's stressed to the max and so are we. Allie is sleeping from 9:00 pm till 8:00 am and also taking a 4 hour nap during the day.  I know many people don't think this is excessive sleeping but I do and I'm still worried about it (but not overly worried).

7) Dr. Brown thought Allie looked extremely tan yesterday and he said that worries him.  Allie's always been a bit darker skin than the rest of us but he said it was more evident now.  He is having Allie's blood checked for an "adrenal insufficiency".  After doing some research, I am finding an adrenal insufficiency can be serious.  I don't think anything with Allie is serious right now - she's doing great.  A couple symptoms of this adrenal insufficiency are the following (which Allie has) - tan skin (with no tan lines), excessive tiredness, mood and/or personality changes (like when we wake her up from her nap) and short stature (she currently has).  There are many symptoms but these are just a couple I noticed right away that she had.  Not sure if I feel like Allie has this or not but it's a good thing to get checked out.  Not sure when we will get results but hopefully sometime in the next 2 weeks.

8) Dr. Brown didn't agree or disagree with the fact that I decided to enroll Allie in feeding therapy.  This decision was my decision based on the fact that the doctors cannot figure out why she doesn't eat.  Allie will receive eating therapy twice a week.  At this point, we will not be reducing her tube feedings we are just going to work on getting Allie to take a bit more food orally. 

9) Dr. Brown agreed to our plan on the oral food challenges.  He said it sounded good to him and to make sure we follow up with him and Dr. Edmonson (ENT) so they stay in the loop with what's happening.  Dr. Brown suggested that if Allie has any symptoms at all during a food challenge, he would like to re-scope her. 

So, what's my plan for Allie.  Plain and simple actually.  We are taking a break from testing for a while.  I told Dr. Brown that Allie needed a break and so did I.  It's time for Allie to start living her life doctor free (for a while).  She has gone through so many procedures, tests, blood draws, etc that we are just tired of it.  It would be different if we got answers but every time a test is ran, it comes back normal.  So, we are taking a break.    This is the first time in 3 years that I felt Allie was "stable enough" to avoid the doctors.  She is handling all of her feeds perfectly.  She has been vomit free since January and she is gaining weight.  There is nothing that could be more perfect right now (unless she would start eating).  Allie is doing great and since she is doing so well, I just want her to enjoy life the way she deserves.

Of course, taking a break doesn't mean a break from therapy or weight checks but those are easy for her.  Allie loves therapy because they have wonderful toys, books and games.  Actually she cries every time we have to leave therapy because she enjoys it so much.  As for weight checks, they take 5 minutes and we are out of there - so it's painless too.  Plus - Allie loves to get on the scale (silly girl).

Allie has her well child checkup scheduled for May 2nd - besides that, we plan to be avoiding the doctors for 3-4 months.  This is going to be a nice break for all of us and I'm very happy with my decision.  I'm grateful that I have this option because many families cannot make a decision like this, they simply have no choice but to continue life saving medical care for their child.    Don't get me wrong, we are not "giving up" on Allie.  I will never give up in finding a diagnosis and help for her, we are just going to live life for the moment and enjoy the simple things life has to offer.  Like I previously said, this is the first time in Allie's life where I feel she is thriving and actually stable.  I want to enjoy this time and celebrate how far we have come with her medical journey. 

Of course I will continue to keep her blog updated - just because there are no scheduled doctors visits doesn't mean nothing exciting is happening in her life :)

Here are some pictures of our silly family tenting in the basement (just for fun). The girls loved it - however, Matt and I didn't get much sleep.  Our tent was a 2 person tent so the 4 of us were quite cozy....

This is where we camped out

Daddy making smores over the gas stove

The girls enjoying their smores

Chloe and I love smores!

I'm still eating but of course Allie didn't eat hers

Girls excited to get all cozy

Allie and I right before mom fell asleep

Tuesday, April 26, 2011

Private Therapy

We met Allie's new private therapist this morning.  Her name is Ann and she seems great.  Ann and I spent a lot of time talking about Allie's medical history and the different things we have tried over the past 2 years to get her to eat orally. 

Starting next week already, Ann will work with Allie on her eating therapy and also work on some speech. Allie will be seen twice a week for 45 minutes each time.  Her schedule is set for Tuesdays and Thursday's at 11:15 am.

I'm happy we were able to get this therapist because she is the one everyone recommended for feeding issues.  Ann is looking at retiring in the future but for now, she was willing to take our case.

After going through Allie's medical history, Ann looked at me and said, "Allie's case is by far the most difficult one I've ever attempted.  I haven't worked with anyone like her before.  She is going to be the biggest challenge in my career so far".  Hmmmmm.....that wasn't exactly what I was hoping to hear but I appreciate that she is honest.  For once, I would love for someone to tell me they can get Allie to eat orally.  Seems like everyone, doctors, nurses, specialists, and therapist, are intimidated by Allie and they aren't exactly sure how to proceed with her.  I'm hoping Ann is our answer and she has some tricks to try with Allie's eating therapy.

I wasn't planning to spend so much of our summer time at therapy, however if it helps Allie, we will do it.  I am a strong believer in therapy as I have seen Allie master occupational therapy this past year.  In addition, speech therapy has really helped her and she is now talking in full sentences.  It's still hard to understand what she's saying, however she knows exactly what she is trying to say.  So, if therapy is what she needs to learn better, then therapy it is!!!!

If you have a child in eating therapy, I am interested to see how it works.  Allie's will be individual therapy and it sounds like they will start with play activities.  They will make Allie take a bite and then she can play for a minute then she has to come back and take another bite, etc.  I'm just wondering if anyone has tried this technique and if it worked.  So, if you have any experience to share, please leave me a message or email me at - thanks!!!

In October 2009, Allie went through a feeding clinic at the Children's Hospital of Wisconsin.  Allie did not accept that way of feeding and the week long feeding intervention pushed her in the wrong direction - she left there eating less than before.  So, I'm happy to hear that this therapist will not be using that technique :-)

Allie continues to do great with her feedings and I am now real comfortable making her blends.  Allie continues to be vomit free which a wonderful thing!!  Tomorrow we meet her GI doctor for a follow-up.  I'm thinking our plan for the summer is going to be......AVOIDING THE DOCTORS!

Monday, April 25, 2011

ENT Results

Allie had a follow up appointment with her ENT (Dr. Edmonson) this morning.  We discussed the fact that we got a second opinion on her allergies and I showed him the results that Dr. Thompson shared with me on the phone last week.  According to Dr. Edmonson, the only allergy which might be a "true allergy" is milk.  Her IgE numbers for that was 2.63 and anything above 0.34 could be an allergy to that item. 

We talked about the fact that Allie is eating corn products again and we haven't seen any change in her behavior or vomiting.  We have seen an increase in her oral intake but not a significant increase.

Last week Allie went to get blood drawn at the clinic to check her chem panels however they couldn't get her vein and after two pokes, I made them stop.  Since Allie needed to get blood drawn again, Dr. Edmonson suggested we do a RAST allergy test to double check her IgE levels.  This is the same test that Dr. Thompson ran.  Keep in mind, Dr. Edmonson tested Allie for a milk allergy twice and it came back negative (he did a skin prick test and a patch test).  Dr. Thompson did a RAST test and it came back positive.  So, I don't know which test to believe and since she was getting blood drawn anyway, it was a good idea to just re-run the RAST test and compare the results to Dr. Thompson.  So, that's what we are doing.  We should get the results in 1-2 weeks.

If her RAST test comes back with a positive milk allergy, this will be the plan:

1) Continue to let Allie eat corn products for 1 week

2) After that 1 week, start adding corn products to Allie's blends - do this for 3 weeks and watch for reactions.

3) If Allie doesn't have any reaction for 3 weeks, consider her not allergic to corn

4) Remove all milk from her diet for 3 weeks and watch her for any changes

5) If there are no changes after 3 weeks, start giving her milk again.

6) Start giving Allie gluten again for 3 weeks and watch for any changes (she is currently gluten free)

7) If there are no changes with having gluten, continue to allow her to eat gluten.  We think Allie is gluten sensitive but we aren't sure - plus there is so many different ranges of being gluten sensitive.  Since taking Allie off gluten in December, we haven't seen any changes in her - so now the doctors are questioning whether she's really gluten sensitive or not.  The one true way to find out is to do an oral challenge with it.

I am happy with this plan.  Keep in mind if her new RAST test comes back as negative to milk, we will not be removing milk from her diet.  Milk will be a tough one right now because the two things Allie is actually eating is yogurt and chocolate pudding.  However the good thing about a milk allergy, most kids outgrow it by the age of 5.

After this appointment we headed right back over to the clinic where Allie needed to get her blood drawn.  At this point, I still hadn't told her what we were going there for.  Once we entered the building and she heard me tell the receptionist we needed lab, Allie freaked out.  She cried until they were done with her blood draw.  On a positive note, there was a different girl there today and she got a vein on the first poke.  Allie and I were both very relieved.  It never gets easier seeing your little one go through some of this!

So, Allie has a couple more appointments coming up this week:

Tuesday - 11:15 - meet her new private therapist that will work on her speech and eating therapy.  Tomorrow is an evaluation to figure out how much therapy Allie will need and how we are going to approach everything.

Wednesday - 9:30 - meet with her new therapist through the school system.  This is a first time evaluation.  We already know that Allie will receive speech therapy once a week for a half hour.

Wednesday - 2:15 - meet with Dr. Brown.  This is a follow-up to determine what is next and discuss how well Allie's been doing since January.

That about sums up what has been happening here.  We had a great Easter in Escanaba with family - it was wonderful to see everyone.  Here are a couple pictures from Easter.....

Our gang coloring Easter eggs - it was fun!!!

We celebrated Aunt Shannon's birthday

We found Easter eggs

Chloe being silly

We got all dressed up for church and brunch

Seriously mom - we don't want to smile!

Okay - then strike a pose

Our happy family of 4

girls enjoying the nice weather after church

We met the Easter bunny.  The girls were too scared to go to him so mom & dad had to go too.

Chloe with her giant Easter egg cookie

Allie with her Easter egg cookie - guess who's eating it all???? mom???

Thursday, April 21, 2011

Weight check update

Just a quick update to let you know that Allie had her weight check and blood draw today.  Her weight was 25.4 lbs - same as 3 weeks ago.  I was a bit bummed that she didn't gain weight but also very happy that she didn't lose.  Allie has been extremely active lately so I'm thinking I may have to increase her calories a little.  I'm not comfortable increasing her volume yet - simply because of our corn trial.  I don't want to do more than one change at a time.  So, I will either keep her calorie intake the same for a while or I might add a tsp or two of extra oil to her blend to increase the calories and fat.

They tried taking Allie's blood today to check her chem panels but after two pokes and lots of screaming by Allie, I told them to stop.  It never gets easier watching her be in pain.  I felt awful for her too because I didn't tell her before hand that she was getting blood drawn.  I know how scared she is of it and she won't sleep or anything because she gets too scared.  So, this time, I didn't warn her.  I felt bad about it but I wanted to spare her the worry about it.  Either way - it was absolutely awful and just knowing we have to go back Monday so they can try and get blood again, is making me nervous.  I hate the things she has to go through - I hate that she has been through more blood draws, tests, procedures, etc than the average adult.  I don't blame Allie for being stubborn and strong willed, after all, she has no option when it comes to her health.  Matt and I make every decision for her and if she doesn't want to go through something, she doesn't have a choice.  I should understand why she's a control freak and wants to control so many aspects of her life - it's because she cannot control anything that involves her medical issues.

As for Allie's corn trial, things continue to go great.  Allie's oral intake has been increasing since we are allowing her to eat corn again.  We haven't seen any type of reaction yet so that is wonderful.

We hope you all have a blessed Easter.  We are heading to Esky and spending the weekend with family.  We are very excited to see everyone!

Here are a couple more pictures from Florida.......

Berndt Family

Us with Mr. Potato Head

Our group - Us, Grandpa Ray, Grandma Mary, Aunt Shannon & Uncle Mike

With Mickey & Minnie

Allie swimming without help

Our girls :)

Celebrating Chloe's 5th birthday in Florida

Wednesday, April 20, 2011

Birth to 3 Completed and Corn Update

Yesterday was a sad day for Allie and I.  She completed her enrollment in the Wisconsin Birth to 3 program. Yesterday was her last day for in-home speech and occupational therapy.  Her therapist have been great and they have helped Allie a lot these past 6 months.  Since Allie is turning 3 the end of the month, she is being transitioned into the school system and will start receiving speech therapy at our local elementary school.  She will get therapy once a week for a half hour.  In addition to that, we are hiring private therapy for her in regards to her oral eating and speech articulation. 

Here are a couple pictures of Allie and her therapist.  Allie loved them both and she is really going to miss them :(

Allie & Sheena - her OT (Sheena brought finger paints for an extra fun last therapy session)

Allie & Arlene (left, her main PT) and Colleen (right, a student PT)

Thank you to Sheena & Arlene and everyone in the Wisconsin Birth to 3 program that was involved with Allie's care plan.  You have helped Allie so much these past 6 months and her progress has been amazing.  Also, thank you for being my sounding board and listening to my concerns and helping me along the way.  We all know Allie can be a challenge but with your help, we have made some great progress.  So - thank you again and please know we appreciate everything you did for/with us!!!

In regards to Allie's oral challenge with corn......things are still going great.  We haven't seen any signs of a reaction yet.  She is even eating cheesy corn puffs and no reaction - I'm not holding my breath though - things could change quickly, you never know.

Tomorrow Allie will get blood drawn to check her chem panel for being on a blenderized diet.  I'm praying everything comes back good.  In addition, she has a weight check scheduled for tomorrow at 11:30. I always get excited for her weight checks because if she gained, it's like getting a high five for giving her the proper nutrition.  Of course I'm always praying she grows in height because her projected height is 4 ft 11 inches.  There is no other way to put it besides......that's short!  It's okay though - as long as she's healthy and happy who cares how short/tall or chubby/skinny she is.  She will always be perfect in my eyes :)

I will continue to update on her corn progress. 

Monday, April 18, 2011

Allie's Hydrogen Breath Test

Allie survived her Hydrogen Breath Test this morning.  The test took 3.25 hours.  Basically Allie had to blow in a balloon type device every half hour and it measured the hydrogen in her breath.  When we first got there, Allie needed to blow in this device.  It took a long time to convince her to do it but she eventually did.  After that, she was suppose to drink a sugary liquid - 5.5 oz of it.  I laughed because of course Allie would never drink it.  I'm happy I took her feeding supplies.  I warned the nurses that I couldn't give Allie more than 4 oz of the liquid because I was pretty sure she would vomit.  They had to check with the doctor at this point because they didn't know if the test could still be performed if she didn't take all the liquid. 

I started tube feeding her the liquid and at 3 oz, she started gagging.  I managed to get 3.5 oz into her but that was the limit.  If she vomited, the test had to be postponed.  Poor Allie gagged and gagged but never threw up.  With Allie being on a blenderized diet, we haven't given her just pure liquid since January.  I'm not surprised that she was getting sick with 3.5 oz - yet she can handle 5.25 oz of the blenderized food just fine.  This is just one more example of proof that Allie's tolerance for pure liquids is very low.

After she kept the liquid down, the test proceeded.  Allie was a pro and cooperated very well with blowing into the device.  She continually said she was thirsty and was requesting chocolate milk.  Of course I didn't have any chocolate milk but even if I did, she wasn't aloud to eat or drink anything until after the test.  We finished the test at 12:00 and Allie was very happy to be done.

She was a trooper through the whole thing and behaved very well.  According to the GI nurses, Allie is the youngest person they know that has performed this test and they were very impressed with how well she handled it.  I'm so proud of my little girl!

We should get test results within a week or so.  We meet with Dr. Brown next Tuesday so he might just give us the results at that time.  It's a huge relief to have this test done with.  It was non-invasive, however a 3.25 hour test is a long time to keep a little one cooped up with limited toys.

After we got home, it was time for Allie's feeding.  I gave her 5.25 oz of her BD and she handled it great.  She is plum tuckered out tonight and is actually sleeping on the couch right now.  I think it's going to be a long night :)

We continue to see no reactions to the corn yet.  We are watching her closely for any signs at all.  I'll keep you updated!

Here is Allie licking frosting from her cake this afternoon. We made this cake for her because she was nice to the nurses today for her procedure.  Not sure why I reward her with food because she doesn't eat it anyway!!!

Allie licking the frosting from her cake

Sunday, April 17, 2011

Update on Allie's corn trial

Today is the 5th day that we have allowed Allie to eat corn products. As you know, Allie doesn't consume a lot of food however there is no doubt that her oral intake has increased the last couple of days.  I'm assuming it's because she is aloud to eat some of the foods she enjoyed before her corn allergy diagnosis.  Her two new favorite foods are:

1) Gogurts - which the 3rd ingredient is modified corn starch
2) Snack Pack chocolate pudding - 3rd, 4th & 5th ingredients: sugar, modified corn starch & vegetable oil

So, there is no doubt that these two foods are corny.  Allie has been eating 3 Gogurts a day - she is loving them.  Allie has always enjoyed yogurt but since her corn allergy, she was only allowed the full fat Dannon vanilla kind so this variety of Gogurts is great for her.  In addition to these foods, Allie is enjoying cinnamon apple sauce, gluten free animal crackers, french fries and blue moon ice cream.  Of course, she is also enjoying the many fruits and vegetables that are corn free. 

You are probably wondering if we have seen any type of reaction yet to the corn.  The answer is NO.  So far there has been "0" signs of a reaction to the corn.  I am watching her very closely and her behavior is staying steady (sweet yet full of sass), she is handling all of her feeds great, and her skin is still perfect. 

Of course just because we haven't seen a reaction yet doesn't mean she isn't allergic to corn.  We have to give it some time in case she isn't eating enough to cause a reaction yet.  We'll give it a bit more time and see what happens.   But so far, it's going great and Allie is not having any type of reaction at all.

Tomorrow is a big day for Allie because she will be having her hydrogen breath test.  She is on a strict diet for this afternoon which consists of nothing she likes.  Her breath test is scheduled for 8:30 am on Monday.  The test can last anywhere from 1 - 5 hours.  I'm thinking this isn't going to be fun.  The test is not invasive, however any test that lasts longer than a half hour is hard on the little one's.  We haven't been through this before so I'm not exactly sure what to expect.  Allie is getting this test done to check for a bacterial intestinal overgrowth.  This goes along with her breath issue always smelling like poo.  I do have to say that her breath has been better lately but it does still smell every once in a while.  I'm hoping this test provides us some answers but I'm not getting my hopes up.  Seems like with every test that is done, we either get no answers or just more questions.  Please keep Allie in your prayers tomorrow as she endures another long test.

Here are a couple more pictures from Florida.....

Allie on her new bike from Grandpa Ray & Grandma Mary

Chloe on her new bike from Grandpa Ray & Grandma Mary - lucky girls!

Allie playing in the water

Let's just say Allie's VitaMix got a lot of use that week - and it wasn't only for Allie's blends - lol

Chloe relaxing in the pool

Allie loved the water - could hardly get her out of it :)

Thursday, April 14, 2011

More decisions made on Allies Allergies

So, I left a message for Dr. Edmonson (our original Allergist) to call me in regards to the conflicting allergy results.  Keep in mind that at this point, we hadn't told Dr. Edmonson we were getting a second opinion.  We weren't hiding it from him, but we hadn't had an appointment with him lately so the opportunity to tell him never came up.

Dr. Edmonson called me back quickly and we had a nice long informative discussion.  One thing I love about Dr. Edmonson is he never rushed me on the phone - he takes time and answers all of my questions. I really appreciate that because I know he's busy seeing lots of patients during the day. 

So, what is Dr. Edmon's take on the allergy results.  He said that RAST testing (the blood testing that Allie had with Dr. Thompson) is known to have a 50% accuracy rate.  Dr. Edmonson thinks that since Allie is tolerating the eggs and milk just fine now, then it was probably a false positive result.  He recommends we keep Allie on the milk and eggs since we are not seeing any reactions to those.

Dr. Edmonson was happy we got a second opinion, however he stated that Dr. Thompson is not a Board Certified Allergist.  He said that with Allie's medical complexity, if we want to get another opinion, we need to make sure to see a Board Certified Allergist.  Dr. Edmonson made it very clear that Allie should not take the allergy drops which Dr. Thompson is recommending for her.  He said that the worst thing you can do for someone with GI issues is give them the actual allergen daily, even if it's in extremely low doses.  He said the results of taking the allergy drops would not be good and could actually harm Allie more.  So, with that information, we will most definitely be avoiding the allergy drops!

As for the corn, Dr. Edmonson is holding steady on his decision to not re-test her.  I asked him again today if he would consider it and he said flat out, "no". He said he's been talking with other allergist and they have seen lately a couple cases come through where the patch testing indicated a severe corn allergy (like Allie's) yet the person was not allergic to corn.  Based on this, Dr. Edmonson is suggesting the following:

We do a food trial with corn and see how Allie does with it.  While we allow her to eat products with corn, we have to watch her closely for any behavior changes, stool changes, sleeping pattern changes, eating changes, vomiting and basically anything else that could change. 

I pointed out to Dr. Edmonson that when Allie was a baby, she was fed infant formula which contains corn and she ate corn products in her daily food until she was 20 months old.  She never vomited or had behavior problems until she received her feeding tube.  So, my initial thinking is that if Allie is truly allergic to corn, she would have vomited or had behavior problems as an infant & early toddler.  Her vomiting and behavior problems didn't arise until after her feeding tube and we were controlling how much food went into her little belly.  Maybe her vomiting truly was all due to volume intolerance and her behavior was so awful because she was constantly miserable from throwing up after every feeding.  I don't know and nobody else knows either.  I know one thing - if we did know, it would make life a whole lot easier.

So, where does this lead me?  I have several option that I can think of:

1) Get a 3rd opinion on Allie's allergies
2) In addition to corn, take her off eggs, milk & wheat
3) Dont' change anything and continue to keep her corn free
4) Do a food trial with corn and see how she reacts.

Since getting a second opinion on her allergies has done nothing but make me more confused, I am going to proceed with my gut feeling.  My motherly instinct is telling me to do the following:

Do a food trial with corn and see how she reacts. I will keep Allie's blends corn free but let her eat food with corn.  I will continue to keep her gluten free because obviously I don't want to change more than one variable at a time.  If I see any changes in Allie with being fed corn products, I will stop it immediately and consider the food trial a fail.  As for the milk & eggs, I will continue to keep her on those since she shows no signs of an allergy to them.  If something changes, of course I will take her off of them.

Again, nothing is for sure but my instinct is telling me this is the best option for now.  Assuming Allie eats enough orally, within days we will know if Allie is having any type of reaction to corn.

Here are a couple more pictures from our Florida vacation.....

The girls at the park in Florida

My little peanut busting a move

The Berndts at Look Out Mountain (on our way to Florida)

Allie relaxing in Grandpa Ray's chair

So I gained a little weight on vacation - Matt still loves me!

Wednesday, April 13, 2011

Allergy Results - not what I expected

I have been impatiently waiting for Allie's allergy test results (her second opinion testing).  I called the office on Monday afternoon to see if any results were in and they told me to try back today.  I called this morning and they said no results were in yet and that Dr. Thompson wasn't in the office.  I asked nicely if he could return my call tomorrow if any results were in. 

Within 10 minutes, the phone rang and it was Dr. Thompson.  Didn't think he was in today, but anyway he said he just seen Allie's file and has some results.

Here they are:

Corn - negative
Eggs - positive
Milk - positive
Peanuts - negative
Soybean - negative
Wheat - positive
Candida Albicans - negative

So, the results show no corn allergy yet it shows she is allergic to eggs, milk and wheat. 

What do I think?????  I think I'm more confused than before and I don't know what to think.  I'm frustrated because both Allergist came up with two totally different answers and they are completely contradicting each other.   It simply doesn't make sense.

Allie is currently getting eggs and milk in her blenderized food and she has no reaction that I can tell.  She has been getting milk and eggs in her blends since day 1 so I don't know if I believe she has those allergies. 

So, what do we do?  Right now I'm not changing anything.  I'm keeping Allie's blends the same for now and I have a call into our original Allergist - Dr. Edmonson.  I'm hoping he can shed some light on these two results for me.

To top the cake......Dr. Thompson said that even though Allie's testing came back negative for corn, he recommends we continue to keep corn out of her diet since she previously had a positive test.  Seriously????  That was the whole reason we went there for a second opinion and I made that very clear to him and his staff.  If he would have told me up front that no matter what the test comes back as, he would still recommend she be corn free, I wouldn't have had to get a second opinion.  I'm a bit frustrated with that fact especially because right before the test, we had a lengthy conversation about if the test comes back negative, we could introduce corn products just not high fructose corn syrup.  So, now that the test was negative, he's still suggesting we keep her corn free - again, simply doesn't make sense.

Seems with Allie absoultely nothing can be black and white.  Not sure how I got so lucky to have a daughter with a medical mystery but I know one thing - it's always an exciting ride and I am dedicated to ride this ride for as long as we have to!

Wednesday, April 6, 2011

Allie's Allergy Appointment

We met with Dr. Thompson of Allergy Associates of LaCrosse yesterday.  Dr. Thompson was great and he spent a lot of time with us which was nice.  I had purposely not sent any records because I wanted him starting with a clean slate.  At the beginning of our appointment, I explained Allie's medical history and from there, told him what I would like her tested for.  We came up with a plan and proceeded.

Allie had never been tested for environmental allergies so Dr. Thompson thought it was good idea to check for a few of the common one's.  We agreed and Allie had skin testing done.  This was different skin testing than what our previous allergist performed.  With the testing Allie had yesterday, they injected the allergen under the first layer of skin on her arm and then checked it 15 minutes later.  Allie had 5 needles inserted and she hated it.  She was tested for the following:
Dust Mites
TCE - this is a yeast type of mold
Alternaria - mold
Aspergillus - mold

So far, we know she is moderately allergic to: TCE & Alternaria.  We have to watch her arm for 48 hours and document what the injection sites look like after that. 

As for food allergies, they drew her blood and will test that for any type of allergy (immediate and delayed reactions).  They are testing her blood for the following according to this breakdown:

Specific IgE's
corn, eggwhites, milk, peanuts, soybean, wheat, candida albicans

Specific IgG's
Corn, milk, wheat, candida albicans

We also ordered a total IgE blood test

She was prescribed a dose of Nystatin for a week in case her digestive track is inflamed due to the yeast allergy.  However, I am holding off on this medicine because Allie is scheduled to have her breath hydrogen test on April 18th.  This medication will interfere with those test results so we will hold off.  It's not like Allie has a yeast infection or thrush or anything so it's more used as a precaution in case she does have some type of yeast overgrowth going on. 

So, what do we know???  I know to remove the Brewer's Yeast out of her blenderized diet.  At this point, her yeast and mold allergies are moderate so they are not anything extreme - of course we know the final results until after 48 hours.

We will get the results of her blood test in about 2 weeks.  I'm praying for no corn allergy but I'm not getting my hopes up.  The doctor did confirm that it's very rare for someone to be allergic to corn and not have other food allergies.  So, we'll see - we are testing for a couple different things than what she was previously tested for. 

Dr. Thompson was very impressed with everything we have done for Allie so far.  He said that it sounds like we have had all the right testing done for her and we should continue on our search.  He even asked if I worked in the medical field because I knew so much about Allie's health issues and everything relating to it.  I just laughed and told him I have spent the last year researching everything about her and trying to find a diagnosis on my own, etc.  He was very impressed and it made me feel good because most doctors don't acknowledge (or accept) how knowledgeable the parents become about their own child's health issues when it's a chronic issue or simply not having a diagnosis yet. 

So, now we sit and wait for her blood test results.  I get very impatient waiting for results so I'm praying I can keep my mind busy for the next two weeks. 

Here are a couple pictures of her skin test.  I would say her reaction is increasing slightly with each test spot which would indicate she has a delayed reaction.  Each spot got a bit more red and raised slightly.  I don't think any allergy is significant though, we'll see what the doc says after we sent in our 24 & 48 hour reading on her skin.

This is 7 hours after the skin test

This is 18 hours after the skin test - you can see the spots are slightly bigger

This is just another picture of her spots 18 hours after her test