Thanksgiving at School

The night before the Thanksgiving feast at school, Keandre cried himself to sleep. I may have shed a few tears, too. It's heart-wrenching to watch your friends prepare all week for a special meal, and know you can't participate. Holidays that focus almost exclusively on food are especially hard for those with multiple severe food allergies, or Eosinophilic Gastrointestinal Disease (EGID), or both. 

Surprising Keandre at the school Thanksgiving feast.

When I shared how broken I felt over my little boy's pain, my lovely sister-in-law, Sarah, suggested a creative new way to prepare his safe foods.  That was just the sort of idea this tired Mama needed! (My creativity is a bit shot at the moment....stress will do that to ya! ;)

Andy stepped up to do the creating, and the end result was a fun surprise for Keandre.  He loved it!  I think he really appreciated the effort Daddy put into making his lunch special.

Can you guess what it is? ;)

It's great to be five!

    

Keandre is a big fan of Bill Cosby's 'Little Bill'. If you are familiar with the show, you'll recognize the saying, "It's great to be five!"  March 10th was Keandre's big day, and he shouted it with pride. :) 

His breakfast of choice was a plateful of hash browns.  Can you see his excitement?

Keandre asked for an easy-going party at a local park.  He requested that everyone wear his favorite color, green, and that we serve only foods that are safe for him to eat.  I gave all the parents a heads-up that this party would be a little unusual....

It worked out great!  The kids all had great attitudes about the food.  We called it an 'eat like me' party, and served fresh-sliced apples, rice cakes, roasted garbanzo beans, and green beans. 

There were meaningful conversations amongst the parents and kids about how these are foods that are safe for Keandre, and that he can't eat most of the foods that they eat.  Empathy grew. :)

 Face painting was the highlight of the party.  My creative sisters-in-law came up with some great ideas, and the kids were all impressed.

Artan and Lucas contributed to the animal theme that caught on well with the boys.  (Most of the girls were princesses.)

Dessert was rice crispies made with homemade marshmellows. Keandre ate at least five of them, and wants me to make them again soon.

We all went home tired and happy.  Our little tiger declared the day a huge success! :)

Oatmeal, glorious oatmeal

In May, we introduced organic, gluten-free oatmeal for Keandre's latest food trial.  That day, Keandre skipped around the house yelling at the top of his lungs, "Hooray!  Oat-a-meal!  I love oat-a-meal!"  Followed by, "It's yummy, right?  I think had it once a loooong time ago." :)

Because Eosinophilic Esophagitus and Eosinophilic Gastroenteritis (EE & EGE) are allergic conditions, every food has to be trialed separately until you know whether it's a 'safe food', meaning it doesn't trigger the growth of eosinophils, or white blood cells, in the digestive track.  The only way to know for sure if there are eosinophils is to schedule an endosocopy with biopsies, but you can also tell if the food is a problem from other symptoms. 

Within 1.5 weeks after we added 'oat-a-meal', Keandre was flaring.  Hiccups, stomach pain, reflux, and then vomiting returned.  Some families keep it up longer, and scope to be sure it's really 'a fail' (checking for evidence of eosinophils), but I just can't do that...it's too hard on him.  It's sign enough if I remove the food from his diet and he recovers. 

Oatmeal was a huge loss -- an emotional one for both of us.  My Mama heart breaks to see my son suffer, and I struggle with what to feed him with this limited diet.  He is grieving the loss of a food that he loved, and this loss is forcing him to face how different his life is from other 5-year-olds.

Please continue those prayers.  Keandre's body has rejected 7 of the last 8 foods we've trialed in the last 6 months, so I'm a little scared to introduce anything new for a while. 

For now, we're trying some new allergy treatments, in hopes that it will help his body tolerate more foods.  More on that later....

Foods that caused him to flare so far this year: lentils, cilantro, chives, green onion, leeks, celery, and now oatmeal.  (For the EOS moms who read here. :)

Please, please pray that pear continues to be safe for him.  He loves them!

The Results

I've been on pins and needles all week, waiting for Keandre's doctor to call with results from the biopsies.  To be honest, I didn't expect good news.  Keandre flares so easily.  The last five foods we tried to add to his diet were a fail.  And he's been affected by the wind and high pollen count in the last two weeks, too.  (For some people, EE and EGE have an environmental component.)

So it felt like a little miracle -- God's gift and encouragement to us and our son during a difficult season -- when Dr. S. called this afternoon and said Keandre SCOPED CLEAR!  Amazing.  Something to cry happy tears about! :)

For the EoE moms who read here, last July Keandre had 4 eos in his esophagus, and 37 in his stomach.  (At diagnosis in March '11, it was much worse than that!)  Now they found one eosinophil in his esophagus, and NONE in his stomach. 

Eosinophilic Esophagitis (EE) is an uncommon and difficult condition to treat.  Eosinophilic Gastroenteritis (EGE) is far more rare, and harder to treat.  Our little guy has both conditions.  Both are, physically at least, controlled right now!  He is not consuming elemental formula or steroid slurries to coat his esophagus.

Although this news made my day, Keandre's response was less than I hoped for.  And yet he was right on.  A first, he smiled, pleased with the news that his tummy looked good.  And then, for the next hour, he was grouchy and needy.  Finally, I figured it out. 

It's great to hear that you're doing better.  But when you still experience daily pain, it's a small comfort.  And when you sometimes struggle to swallow the few foods you're allowed to eat, it's a scary feeling.

Thank you, THANK YOU, for your prayers and support over the last few years.  You have blessed us greatly! 

Please continue to pray for wisdom for Andy and I and Keandre's doctors as we continue down this path.  Please pray for pain relief for Keandre, and healing for his heart as he daily faces the reality that he cannot live like other kids his age.

We know the Lord loves our little guy deeply, and has all his days planned out before him.  He has sustained us through many struggles, and we are hopeful for the future.

'My Hospital'

 

a goofy grin on our way to check-in

Keandre has a very positive view of our local children's hospital.  In fact, every time we pass it, he yells out, "Mom, there's my hospital!" :)  I have no doubt this contributes to his mostly easy-going approach to the testing we must do regularly to track how he's doing. This morning was his big day -- his fourth endoscopy (third in less than a year). 

My Aunt arrived at 6:30am to take over kid care so I could focus on getting Keandre and I out the door.  Keandre started his morning with a bear hug for me and a sweet snuggle for Aunt Maggie, so I could tell we were off to a good start.  Despite having no food or drink since bedtime the night before, he was all smiles, and so silly it was hard to get him ready! 

Keandre named his little goose Duck Duck Goose, or 'Ducky', for short. :)

His check-in nurse enjoyed his goofy demeaner, and gave him a little stuffed animal to play with.  After dressing in his 'pjs', we were off to play in a nearby playroom.  It was a mecca to plastic 'noisy toys'....a little overwhelming!  Daddy arrived to hang out with us, which helped pass the time.

Before they called us back, we met with the anesthesiologist and his GI doctor.  Keandre gave his doctor a huge smile and enthusiastic hug, which was super sweet to see.  Dr. S. has cared for him since he was an infant struggling to thrive, and although he's not considered a top doc in regards to treating Eosinophilic Esophatigitis and Eosinophilic Gastroenteritis, he has been a huge blessing to our family and we've been happy with his care.

Shortly before we got started, I had my first Mommy regret.  I told the anesthesiologist about the extreme agitation and confusion Keandre experiences after waking up from his previous endoscopies.  He suggested a dose of Versed, which would hopefully help.  When they brought out the bright pink, icky smelling fluid, I *almost* said, "Nevermind, we'll pass."  (We avoid food dye and unneccesary meds as a general rule.)  I still wish I had spoken up.  There was a delay as we waited for Keandre's turn, and for the next 30 minutes we held our sweetie as he zoned out and was barely functional.  I prayed over him a ton, asking the Lord to alleviate any negative side effects and help me be more assertive in the future.

Another sad effect of the Versed was missing out on the much-awaited Hummer ride.  I could have cried!  We took a picture of him with the Hummer before we entered the OR, but he doesn't remember that at all.  He was so out of it that Andy had to hold him upright, but he sure looks cute!

Afterward, Keandre experienced the same agitation and confusion as the last few times.  He was flailing, yelling at everyone, and it was very hard to remove his IV.  Confirmation that the Versed was not worth it! :(  He was also terribly distraught when he woke up enough to realize he hadn't been able to drive the Hummer.

When he calmed down just a little, the nurses were kind enough to bring the Hummer to the recovery room and let him drive it even though he was angry and couldn't even walk straight.  They were so kind to us!  The other families and staff were also very understanding as we left the hospital with our screaming kiddo.  I was afraid we'd have to prove we weren't kidnapping him, but instead they gave us looks of sympathy as they saw he was obviously going through a lot.  About 30 minutes later, he was much calmer.  So much for the Versed!  Not making that mistake again....

(source)

When we got home, it was just the two of us.  We snuggled, watched a new Little Bill movie I had bought on ebay, and his appetite returned *really* fast.  In the first three hours, he ate a couple servings each of homemade apple jello, grassfed beef, organic green beans, and rice cooked in homemade bone broth.  Amazing.  So much for the liquid diet they recommend for the first few hours. :) I'm so thankful he is such a great eater, and that it didn't make him sick!

Some mixed feelings came out in a little rebellion about an hour after we settled in.  I was on the phone for a few minutes, and he got to work cutting the ribbon and tags off Ducky, and ridding himself of those hospital bands.  I don't blame him.  I'd have some mixed feelings about it, too!  After that, he seemed to feel better again.

Did I mention that Keandre's doctor was happy with how the endoscopy went, and that, visually, everything looked good?  We are so thankful!  The labs will tell the true story, though, and we hope to hear results by Friday.  Thank you for your prayers.

I LOVE this kiddo.  I am so blessed to be his Mama!

Time to ride that Hummer again

 

Keandre riding a Hummer at the children's hospital, on the way to the OR in July '11.

We heard from Keandre's gastroenterologist (GI) on Friday, and they have his next endoscopy scheduled for Monday morning.  How's that for notice? LOL  Before that, we knew they were hoping to schedule him for "sometime next week". 

Andy's office is closed on Friday, so he could not ask for Monday morning off.  I was just a little panicked yesterday afternoon, trying to figure out sitters, rides to school, etc. for the other three kids.  It's not easy to find a sitter who's up and at 'em and ready for extra kiddos at 6:40am!  Not surprisingly, God provided.  My Aunt has Monday off, and she will fill in the gaps, caring for Brooklyn and taking Lucas and Nichole to school.  What a relief. :)

And then a co-worker, who is also our neighbor, surprised us by contacting Andy's boss and arranging for him to have a couple hours off to join us at the hospital.  Keandre and I will be so glad to have him there with us!  He handles the 'before' really well, but the 'after'... not so much.  Waking up from the anesthesia is very hard for him.  A little extra support will be nice.

This endoscopy feels like a big deal.  I admit it -- I'm nervous about what we'll find.

Keandre's most recent scopes were March 2011 (diagnosis) and July 2011.  He is definitely due for another one -- it is the ONLY way to know if his treatment plan has been effective enough.

At his March '11 scope, he was in bad shape.  He was vomiting regularly, and had terrible reflux and chronic stomach pain.  He didn't know what it was like to NOT be in pain.  At his July '11 scope, we found his EE had cleared, and the EGE had improved some. Unfortunately, EGE is rarer and much harder to treat than EE.  We removed more foods and he had less pain and symptoms.  But it was not enough.  He is still dependant on 15 mg of Prevacid daily.

Since Keandre's diagnosis almost one year ago, he has gone from eating all but 5 or 6 foods (due to food allergies), to having only 10 safe foods total.  The good news is that he appears to be handling these foods well, and he has been able to stay off the elemental formula and feeding tube that becomes the only effective treatment plan for many children with this condition.  I hope the endoscopy shows that we're on the right path. 

This condition is so complicated and overwhelming to treat.  Sometimes I have to look hard to find the positives in the journey.  But the reality is that he was so ill for so long, and there are definite improvements in his health during the last year.  I am so happy to say that, between the diet changes and a few supplements he is on, like daily Vitamin D3 and very high-quality probiotics, his body is healing.

Keandre's environmental allergies have been terrible his whole life.  Only a combination of Benadryl and Zyrtec would control them enough for him to be functional and able to play outside like other children.  Even then, he lived with a runny nose day in and day out, and his eczema was terrible.  As we changed his diet and added important supplements to his daily routines, his environmental allergies began to heal.  First we removed the Benadryl and Zyrtec and replaced it with D-Hist, a natural allergy supplement that he would take twice daily to control symptoms.  (We started with children's chewables, then switched to the adult capsules.)  We could always tell when the supplement was wearing off and it was time for the next dose.  A few months ago, we realized he didn't need the D-Hist daily anymore.

That's right, folks.  My super allergic kiddo is off all allergy medications!  He has healed to the degree that a mild allergic reaction or an environmental allergy flare can be treated with D-Hist instead of Benedryl.  In the past, those same reactions required lots of allergy medication.  We still keep allergy medications and his Epi-Pen Jr. close by for those scary anaphylactic allergies.  But we have not needed them for a long time. 

Please pray with us that we have good initial results after the procedure on Monday, and good news when the labwork comes back a few days later.  To be honest, if things look bad, I'm not even sure what we'll do.  It would be a very difficult place to be.

In the meantime, Keandre is looking forward to barreling down the hospital hallways in a bright yellow Hummer.  And he is telling everyone we see that his doctor is going to take pictures of his tummy on Monday.  He is so brave! :)

 

*BIG* feelings

 

We've had some big feelings come out in the last few weeks.  It has not been pretty.  And it is *hard* to respond in appropriate ways when my kiddos are taking those big feelings out on me.  I know I'm a safe person in my children's lives, so they're trusting me to be able handle it.  And in turn, it's my job to help them learn another way of handling their emotions.  This is a huge responsibility!

One of the ways I help my children process their big emotions after a blow-out is through coloring.  (It's important to also color during happier times, so it doesn't feel like a reward -- extra time to together after a blow-out.)  We sit down together and get it all out on paper.  Then I add whatever words they want.  I encourage them to identify the feelings they were having when they were so upset.  Sometimes it is very insightful!  

Here, Keandre shares that his tummy is hurting.  He deals with chronic pain and a VERY limited diet, due to his EE & EGE.  He is starting to grieve the way he can't eat like other children.

It has also been a very tough adjustment for him now that Daddy has a full time job.  Andy was unemployed, and working occasional contract jobs from home, for the last 3 years.  Now he works long hours M - Th, plus finishing up some contract work on the weekends.  Praise God my sweetie can tell me what is upsetting him so we can help him work through it!

Nichole, age 7, is dealing with adoption losses.  Her birthmother (also Nichole) has been out of state for a while, and she really misses being in contact with her.  These are normal ups and downs in an open adoption.  I'm thankful she loves her birthmom and that she is willing to talk to me about it.

I'm feeling worn out by all the craziness and acting out.  So I needed to draw also.  As I put it on paper, not censoring how I think it 'should' look, I found myself calming down.  I was reminded of the Cross, and Christ's gift of forgiveness when I don't respond the way I want to.  I'm so thankful for His peace and comfort, too!



Lucas doesn't spill his emotions in the same intense way, but this approach is still very helpful for him.  Here is a picture he drew last year after he and I discussed a problem he faces regularly.  He was frustrated and tired of sharing a room with his brother.  Lucas can spend a couple hours cleaning his room, and within a two days (or is it hours?), it is a disaster again.  After working through it on paper, we talked about some solutions.

If you are caring for spirited or wounded children, I hope you'll consider a little informal art therapy.  I'd love to hear how it works out for you your kids! :)

It's really hard to pretend you're angry when you're no longer angry. :)

(Pictures and info shared with my children's permission.)

CURED - please vote daily!

UPDATE: We did it! CURED was in 2nd place for the Central region when the contest ended, and won the $100,000 grant! Thank you SO much for your help!

Are you on Facebook?  Do you have a spare 30 seconds a day to vote for a good cause? 

If so, we need your help!  Vivint is giving away LOTS of money to a select few charities.  And we, the general public, get to decide who gets the money! 

There are MANY great charities on the list, but we hope you'll choose CURED.  This non-profit organization working toward a cure for Eosinophilic diseases. 

Keandre has this serious and painful disease.  It has been life-altering for him.  It has changed who he is as a person.  If you have followed our journey at all, you know that he has had a rough go of it.  We are so very thankful to say he is finally on the path to healing, but we have a long way to go still.  It has taken daily medication and strict avoidance of 21 different foods (dairy, eggs, nuts, wheat, soy, fish, chicken,....you get the picture?) to even start him on the right path.  And he will continue to need regular endoscopies, medications, and this very strict diet indefinitely.

If you know Keandre (or another child with an Eosinophilic disease), we'd appreciate you voting in his honor. 
Here is the link to vote. (And here is where Vivint explains how to vote.)

GI appointment & nutritionist

  

Today we had an appointment with Keandre's GI doctor and a nutritionist at the children's hospital.  Our time there wasn't as helpful as I had hoped, but it never hurts to check in.  Basically it comes down to this:

Keep doing what we're doing until July. 
(Pretty profound, huh? ;)

His stomach hurts daily, and he still coughs and gags -- especially when he is throwing a tantrum.  And we have just a few of those every day.  Four-year-olds aren't particularly adept at dealing with life-altering medical conditions.  Especially when they are dealing with pain and have to avoid some of their most favorite foods ever. 

So....now we wait, and pray that his body continues to heal.  There is not much more we can do for him until his endoscopy, aside from trying to help him cope with it all.  Prayers are always appreciated. 

another quick update

 

Apparently we've started a new tradition -- taking pics with the rabbit at the hospital whenever we stop in.  Kinda fun!  I like the silhouettes, so I'm quite happy to oblige. :)

And now for the update....  (Did I actually write that I won't be posting about this for a while?!  Ha!  Wishful thinking.)  On Thursday, we started Keandre on Prevacid, and quit the Zantac.  Within 4 days, he was starting to feel better.  It is so wonderful to see him relax sometimes and just be a kid.  The doctors think he has probably been in pain most of his life (sadly, we agree), so it's like a new side of him is emerging as he starts to heal. 

The Prevacid did not help him in the past, so hopefully this means we are on the right track and have removed foods that are triggers for his EGID.  (Now we just need to wonder which foods, and are there more to remove???)

We also have to decide if we'll avoid the 15 new allergens that showed up on the skin prick test (SPT) right after his diagnosis, or just the Top 8.  The SPT can have a lot of false positives.  And if we remove too many foods, and change too many variables, it will be next to impossible to know which change(s) helped him heal. 

If you are interested in learning more about the world of EGIDs, check out my friend Jenny's blog.  Her post on choosing a treatment approach is here, and allergy triggers here.  God has blessed her with a way with words, so I won't even bother trying to say what she has already explained perfectly. :) 

Tomorrow night Jenny and I are attending a support group for parents of children with this disease.  I'm excited to meet other AZ Mamas who are walking this journey also!

a quick update

It is not our intent to make this 'the-blog-about-Keandre's-health-issues'.  But I do want to quickly update on how he's doing, since many of you are praying and checking in regularly.  Then we'll move on to other things. :)

I just got off the phone with Keandre's GI doctor.  He called after hours, and was in no rush to get off the phone, so I was able to ask him lots of questions.  (What a blessing!)  After much research, prayer, talking with a few moms of EGID kids (we all know they are the real experts!), and this conversation with his doctor tonight, we have decided on our treatment approach until our next endoscopy.

1.  Avoid all foods Keandre appears to be allergic to. 
2.  Continue the supplements we feel are important for his overall health: vitamin D, flax seed oil (Omega-3s, etc.), a good quality multi-vitamin, lots of probiotics, digestive enzymes w/ every meal, kombucha tea (probiotics, enzymes, etc.), a homeopathic remedy, and slippery elm (for his esophagus). 
3.  Feed him good quality organic foods, grass-fed beef, and bone broth soups.  
4.  This week we will add in a high dose of Prevacid (30 mg.) in preparation for his next endoscopy, and drop the Zantac.  (Regular endoscopies after 6 - 8 weeks of Prevacid are the ONLY way to see if treatment has been effective.) 

Thank you for your continued support and prayers. :)

deep breaths

 

Keandre loves this rabbit statue at the Children's Hospital. 

I love this picture of their silhouette. :)

I admit it.  This has been hard.  Our son is hurting.  He may hide it well sometimes, but he is not okay.  And it is impossible to settle for that.

I am doing research like there is no tomorrow, and skipping sleep in order to do so.  Keandre has both EE and EGE (both are types of EGIDs).  EE is rare, but is the most commonly diagnosed of the several types of EGIDs.  EGE is even more rare. 

Keandre's GI doctor treats this disease on occasion, but it is not his specialty.  And since we're not traveling out-of-state to a clinic that specializes in the treatment of EE and EGE, I can't assume his doctor is up-to-date on the more recent treatment plans.  That means I have to research and advocate for the treatment we hope to use, then approach his doctor for input and hopefully approval to proceed.

Today I met with Keandre's GI nurse.  I had a whole sheet of questions for her!  Now, after an awful weekend where I was seriously stressed over all of this, I finally feel more confident that we're going in the right direction, even if it may not be the approach that ultimately heals Keandre.  

We are trying a more natural approach right now, and I'll admit it is not working very well so far.  But we will feel much more comfortable approaching the use of heavy steroids and an elemental formula diet after we know we've tried the alternatives first.  It is a big deal to go no-food for a couple months.  It is an even bigger deal having a g-tube for feedings.  We don't want to skip ahead to that point if we don't have to.

Update on Keandre

 

www.kidswithfoodallergies.org

This is the best description of Eosinophilic Esophagitus that I have seen!  If you want to understand our journey more, this is a good starting point -- much easier to understand than other links I've given. 

Please, please pray for Keandre.  We saw so much improvement when we first took out the additional 15 foods (+ the orig. 4).  A week later we realized he was also reacting to wheat and honey, so we removed those as well.  Incredible.  Apparently our son is allergic to 21 foods.  And to think that we hoped none of our children would be allergic to peanuts.  The whole food allergy issue seemed a little scary to us. :)

After seeing about 80% improvement in his worst symptoms (severe reflux & vomiting, stomach/esophagus/throat pain, runny nose & eyes, irritability and behavior issues, etc.), he seems to be getting worse again.  Although he has not thrown up in two weeks, his stomach hurts often, and sometimes his throat is very painful (reflux burn).  He is completely dependant on twice-a-day Zantac to neutralize the acid, and still it is not enough.  The steroid slurry that is prescribed for EE would not help him, as the EE (esophagus) is moderate, but the EG (stomach) is where the disease and pain is worst, and it would not address this at all.

We may need to go in for another round of patch testing, to see if there are other foods he's reacting to. 

This disease is difficult to treat.  It is rare, which means there are very few doctors who specialize in it, and there is no set protocol for how to approach treatment. 

For Keandre's sake, we need to see a lot more improvement when we do another endoscopy in a couple months, or we will need to try him on just elemental formula to help his body heal.  That would be so hard on him, not to mention the surgery and tube feedings we would need to administer.

Oh, how my heart hurts for my son tonight.

patch testing

 

Today we started our first round of skin patch allergy testing.  I'm thankful to report it went better than I expected!  We just had to prove to him that it wouldn't hurt. :)

The night before, I stayed up late cooking/pureeing/smashing 26 different foods and supplements to take in for the tests. 

They put a tiny amount of the food/supplement under those tiny disks.  We return to the doctor's on Wednesday to remove them and do the first read, on Thursday to check it again, and again the next Wednesday for another consultation.  So far he's tolerating the patch testing very well. 

I am very thankful to Wendy, who I met through on online group for families dealing with EGID.  She talked me through the prep work, and helped me feel like this is doable, and the testing and elimination diet will be worth it!  She lives here in the valley, and her little guy, J, has the same condition.  (Please pray for healing for him as well!  He had his second endoscopy at a local children's hospital today.)

diving in

We dove in today, cutting out all fifteen of the foods we just found out Keandre is allergic to, as well as the four foods we already knew about.  It's too early to know for sure if this is the difference, but Keandre had a really good day!  He was more relaxed and happy than usual, he listened and obeyed with far fewer tantrums, and he didn't throw up at all.

He's a little surprised by the fact that he can't eat a lot of his favorite foods anymore, like pears and oatmeal, but so far he is taking it in stride.  We were too wiped out last night to go shopping, so when breakfast rolled around, my question was, "Keandre, would you like turkey, avocado, and corn chips for breakfast?"  Oh, my.  You would think I asked him if he wanted ice cream!  He was ecstatic. LOL

This evening we went to Trader Joe's for a 'safe foods' shopping spree.  Keandre hugged his bag of chips tight and shouted at the top of his lungs, "I LOVE you, veggie chips!"  Shoppers 20 feet away turned and laughed. 

15 more

 

My mind is so busy tonight.  Keandre's allergy testing earlier today showed that he has become allergic to fifteen new foods in the last ten months.  (I didn't even know that was possible!)

Here are the foods Keandre is allergic to:
dairy/milk, chicken, salmon, eggs, almonds, walnuts, sesame seeds, oats, buckwheat, lima beans, celery, squash, cabbage, coconut, oranges, pears, cantaloupe, watermelon, cinnamon

We started to tell Keandre about it at dinner tonight.  Lucas and Destany were concerned and sad for Keandre.  Thankfully, that was easily remedied by the approach I took.  I give God the credit for helping me think on my feet!!!

Here is how it went....

Mom: "Sorry, honey....the test said no to chicken."
Destany:  "Oh, no!"
Mom: "But....YES to ground beef and turkey!"
Keandre, glowing: "Yeah!"

Mom: "No to pears and watermelon."
siblings: "Oh...."  (frowning)
Mom: "But....YES to grapes and apples!"
Keandre, smiling: "Hooray!"

I'll admit....this news is a little overwhelming.  I teared up a few times during dinner tonight, thinking of how our sweetie will miss eating some of his favorite foods. I am also a little concerned about making sure he has a balanced diet!  But it was a sweet time, eating out together to celebrate Keandre's bravery.  I only slipped out once, taking Brooklyn in the Ergo to walk around and get some fresh air and think and pray.  Then I was back, ready to jump in again. 

Despite the recent diagnosis and these new food allergies, we have much to be thankful for. Keandre is growing well, and is the perfect weight for his age and size. He is physically able to eat, and just as important, he loves to eat. (Many kids with EGID refuse to eat, due to the pain, and have to be taught how to eat once they are stable.) If we stay on this path, we will avoid a feeding tube with elemental/hypoallergenic formula, and we can continue to feed him healthy, organic foods that will hopefully help his body heal.

Hope is good. We are determined to make the most of this opportunity to learn, grow, and help Keandre thrive. And of course we will continue to pray for healing, too.

And from now on.....we are going to have fun with this! We plan to celebrate his list of foods, and help him eat a wide variety of foods.  I will be making a word document listing all the foods he CAN eat, plus pictures, so he can help me plan meals that are safe for him. We're also planning to make him a couple goofy t-shirts. (More on that later!)

So.....are you wondering how you can help us? 
(I know....I'm reading your thoughts! :)

In order to fully eliminate these 19 foods, I need to make an extensive list of the foods Keandre CAN eat. 

You can help by filling up the comments with all your ideas on simple, healthy foods that are NOT on the list above.  Fruits, veggies, meat, grains, etc.  It's all fair game!  I'd love your ideas and encouragement.   Keandre will love it, too. :)

ps - Just in case you are wondering....I was so tired last night I miscounted.  15 new foods, so I had to change the title!

a new allergist

Today was an eventful day.  We met with a new allergist who is somewhat familiar with Eosinophilic Gastrointestinal Disorders (EGID).  EGID is pretty rare, and as a newly identified disease (1970s), we are learning that it is not easy to find medical professionals who are familiar with the unique issues inherent in this condition, or the treatment options.  It is estimated that approximately 4 in 10,000 children, and and 1 in 10,000 adults suffer from EGID.  Treatment is complicated and often only somewhat successful, so many families choose to travel to a specialized hospital in Denver, Chicago, or Cinncinati for treatment.

I was nervous about this appointment.  There was a lot to cover, and so much we are still trying to understand.  I didn't want to miss something important.  But the doctor and his staff were wonderful.  They explained everything well, and gave Andy and I plenty of time to ask questions.  And despite my fatigue, a case of bronchitis, and a mind overwhelmed with all the research I've been doing, God blessed me with the ability to think clearly and ask a lot of important questions.  We were there for three hours! 

The skin prick test (SPT) identified fifteen new foods that Keandre is allergic to, up from the four foods that he was allergic to when we did the SPT in June of 2010.  Oh, my.  Still trying to wrap my mind around that!  And unfortunately, the SPT is only 30% effective -- meaning it may catch only 30% of Keandre's allergies, and definitely only the ones he is hypersensitive to and reacts to immediately.  Next week, we will start patch testing, which checks for delayed reactions.  We are likely to identify even more foods that way.

Despite this bad news, we are hopeful.  God is in this with us.  He is answering our prayers!  We prayed for answers, and a next step in this journey, and He we are well on our way.

My next post will be list of the foods Keandre can no longer eat.  And a chance for you, our family and friends, to help me come up with a list of foods he CAN eat. :)

Life with EE, EG, and Food Allergies

 

Hanging out in the back yard with Lucas.  We just put 3 new goldfish in our little pond.

Keandre's diagnosis has pretty much stopped us in our tracks.  It's not that his health issues are worse today than they were last week or even 3 months ago.  Rather, it's the fact that an official diagnosis us forced us to realize that this issue is not going to go away easily, and we need to focus as much energy as possible on helping him heal. 

Our day-to-day schedule includes serving up medications, supplements, and vitamins many times a day.  Nine times a day, to be exact.  (Wow -- no wonder it feels like a lot!)  The good news is that it is helping.  His eczema is improving dramatically, and he has been off of daily allergy medications for a month for the first time since he was less than a year old.  That is no small miracle!

We have to be very careful about what Keandre eats.  We avoid his life-threatening food allergies -- dairy, eggs, nuts -- as well as coconut and other foods he has reacted to -- like fresh blueberries.  It takes planning to make sure he has a balanced diet.  We focus on lots of whole, fresh foods and home-cooked meals.  We are learning a lot about healthy fats, traditional cooking, the importance of buying organic food, etc.  This has been good for the whole family!  I am so very thankful that Keandre likes vegetables, since they are a staple in his diet.  ("Steamed butternut squash or sweet potatoes, anyone?")

We track his symptoms very carefully.  How does he feel when he first wakes up?  Did his medication seem to help at all today?  How much pain is he experiencing, and how often has he thrown up?  It is time consuming to track all of this, but we are hoping to see a pattern that will help.

With all of the prayer and effort we are investing into Keandre's health, we feel it's realistic to be hopeful. 

We hope for healing.  And we hope that someday we won't hear phrases like this on such a regular basis:

"Mom!  Keandre is throwing up in the backyard!"

"Keandre, stop running around or you'll throw up."

"Daddy, my tummy is hurting.  And my throat."

"Mom, is it okay for me to try eating again?"

"I'm sick today.  I have a tummy bug."  (Said almost daily, first thing in the morning.)

It is heart-wrenching to watch our little guy suffer this way.  And it is exhausting to wrap our minds around the reality of this condition in combination with his food allergies. 

But we trust God with all of this. 

We are still hopeful.

And so very thankful for our doctors -- traditional and naturopathic* -- who are helping our sweetie. 

Thank you for your continued prayers and support.  It makes a difference.
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*Did you know that in Arizona, naturopathic doctors have four years of medical school as well as their other naturopathic training?  I didn't!  What a blessing, considering there are states where alternative approaches are not regulated and an online degree can suffice!

test results

No fun and creative blog post here.  Just sadness for our Keandre.

We received the results from his endoscopy and biopsies last Monday.  He has been diagnosed with moderate Eosinophilic Esophagitus (EE), severe Eosinophilic Gastritis (EG), and mild Eosinophilic Gastsroenteritis (EGI).  This is not good news, especially since we are very careful about his food allergies and that is not likely to be the cause of so much inflammation and damage.  (When allergies are the cause, it is much more hopeful.)

There are no easy answers here.  This condition is difficult to treat.  Without a miracle, Keandre's struggle with daily stomach pain, reflux, and vomiting will not be over any time soon.

We are grieving for our son.  We are also trusting that God will carry us through this struggle and sustain us when we're worn out, like we are right now.  We appreciate your prayers.

Prayers for Keandre (updated 3x)

  

We'd appreciate prayers for Keandre tomorrow.  His reflux has been terrible lately, and medication has not resolved the issue or prevented the pain and vomiting that he has suffered from since he was only a few months old.  We'll be spending the day at the local Children's Hospital, and at 11am he is scheduled for an upper endoscopy.  We're praying that his doctor will have answers for us soon.

When I told Keandre tonight that his doctor is going to put a tiny camera inside him to take pictures and see what's going on in there, he thought that was hilarious!  "A camera?  In my tummy?!?"  Ah, I love preschoolers. :)

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Monday afternoon update:  We are home from the hospital.  Keandre's doctor met with us for quite a while to discuss the results.  Unfortunately, he didn't have good news for us.  Keandre has a lot of inflammation and damage in his esophagus.  It is likely that he has Eosinophilic Esophagitus (EE).  We will know for sure in a few days, when his biopsy results are in.  It's a bit too much to explain right now, so I'll do a new post when we know more.  For now, we are resting and thankful to be home again. 

Thank you for all your prayers and support.  The journey is far from over, but we are trusting God has a plan for our sweetie and will guide us through it all.

A big thank you to Sarah, Katrina, and Catherine for your help with Brooklyn, Destany, & Lucas.  They had a wonderful time with you!
 

Keandre drove a hummer through the hospital to the room where he had the procedure.  He was smiling SO big.  He couldn't believe he got to do that.  We couldn't either! ;)

He was FAST!  Nurses and doctors were jumping out of the way to avoid getting hit.  Andy & I couldn't stop laughing.

He crashed a few times.  We noticed that the walls and doors all have sheets of metal to protect them.  Now we know why.

Keandre and his doctor, in the recovery room after he woke up.  Keandre says about Dr. S., "I like how he talks.  He talks funny!"  (Dr. S. is from Ghana.)

We feel blessed, and incredibly thankful that we have wonderful doctors taking care of Keandre!

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Wed. night Update:  Keandre is having a very rough week so far.  We covet your continued prayers.  He typically has a 2 - 4 days per week where is vomits a few times, and struggles with coughing and gagging.  Well, we are now taking it to a new level.  Monday after the procedure he ate just fine, and he quickly made up for the morning of fasting.  But then yesterday (Tues.) he threw up so many times I lost count.  He tried eating several times, and was successful in keeping food down only one time -- a whopping 1/2 cup of applesauce.  It was a difficult day, and heartbreaking for us to watch him suffer like this.  Today was a little better, but he is still coughing and gagging regularly.  He will be sleeping in our room indefinitely, as he wakes up coughing/gagging and struggling to breath normal.  The poor little guy is exhausted. 

The doctor has us giving him the Prevacid and Zantac still, but it's not helping.  We are waiting for news on the biopsies as well as news on whether there is more we can do to help him.

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Friday morning Update: Thank you for your continued prayers.  Thursday Keandre was a little better, and today he is MUCH better!  He is still coughing and gagging occasionally, but he is eating well and keeping most of it down.  We are still waiting for test results.