Thursday, July 18, 2013

Update on Jude's EoE - LOTS of big changes.

Where do I even start?! Goodness. Here we go...

Jude had his last EGD (Esophagogastroduodenoscopy/"Scope") on June 26th. It looked relatively good as far as they could see with the scope. There was a definite improvement from last time. They informed us that the only definitive way to know if he is truly doing better is from a biopsy. They biopsy cells from the esophagus... if there are Eosinophils (white blood cells/WBC's) there, then we know there is something that is still upsetting his allergies and causing a reaction. If it was clear of WBC's, then we would know that his current diet is working, he is healing, and the scarring we can still see if just left over from before. We were really hoping for Option 2.

So we waited for the results to come back. We got a call the following Tuesday morning as we were walking into Wal-Mart. The poor nurse wasn't the most tactful in how she broke the news...

"Well, the results of his biospy are back. It's not good..... So is he eating any real foods or just the formula? .... So what do you want to do now?" As if dropping that bomb wasn't enough, now she's asking me what I want to do as if I am the expert with all the answers.

"Umm... I'd like to speak with the doctor, for a start..."

His WBC count had gone from 85 (really bad) on his last EGD to 65 this time (still pretty bad).

I kept it together long enough to Dan to take Jude to the toy aisle so I could grab a few groceries. I called my Dad and he answered the phone to silence followed by a hysterical little girl trying to explain what had happened. I was finally able to tell him as I bawled my way through the housewares aisle.

We knew these things...

He had improved a little bit but was still not doing better. He was still eating foods that were causing him trauma and we had to change things. He has been gaining weight, which is of course great, but if we were to allow the Eosinophils to remain in his throat and keep attacking things and causing tissue damage, it would eventually cause irreversible damage and could cause a hole in his throat or some other unknown. (This disease has only been discovered within the last 25 years so we don't have a lot of long-term information.) We saw the damage that came from a few months of it not being taken care of, you can only imagine 20, or 50, or 70 more years!

So we have to figure out what is causing the reactions. At this point we'd cut out dairy, eggs, wheat, nuts, and mustard. Our next options were to

1) Cut out more foods and do another EGD, and hope it's better (Elimination diet)

or

2) Cut out all foods and drink formula only for 6 weeks (Elemental diet)

There were a few other foods he had tested allergic to that we hadn't eliminated yet because we wanted to see the results of the EGD first. So we cut those out right away. I made him a stew a couple nights later with lentils and vegetables and beans and other foods that were supposedly "safe" for him. He ate a ton of it and I was sooo excited (it was such a relief to feel like I'd made something he liked/could eat after feeling so overwhelmed with what to feed him). Ten minutes later he was covered in hives. That was a kick in the face.

I felt defeated. I am supposed to trust this list of foods he's allergic to as I try to provide food for him. I have this list of however many foods he "can't eat" and is everything else just supposedly safe? The upsetting thing with this approach is that they don't test for every food. So how can I know what I'm feeding him is safe? I can't. Allergy testing is extremely unreliable and inconsistent, any allergist will tell you that. The only way to really know if a food is safe or not is to test it through an EGD (this only applied for people with EoE). We had been praying and pondering and researching and trying to decide what path was best for Jude. This experience felt like a drop in the bucket that another series of "eliminations" would not be successful. With how highly allergic Jude is, he was bound to eat something he was allergic to and therefore, have another EGD with poor results and not know where it was coming from.

We had a call in to his doctors (GI/allergist/dietitian) to talk things over and get their opinions. It was unfortunately the 4th of July weekend so we had to wait until Monday/Tuesday to talk to them. The long weekend of waiting turned out to be a blessing because we were able to ponder, research, pray, and fast and really feel prepared with our opinions and questions for the doctors.

We spent several hours researching on Sunday night and went from one opinion to the next and one extreme to another trying to figure out what to do. It's exhausting when there is not necessarily a "right" answer. EoE and allergies in general are a very unknown science with a lot of unanswered questions. We know it was imperative for us to be prayerful and put our faith in the Lord. We had to do everything we could and let the Lord guide us to what decision we felt would be best for Jude.

After all our research we felt led to doing the Elemental (formula) diet. Everything in my heart, as the mother to this perfect little child, has tried to fight it just because it will be so hard, but when I put my emotions aside I know it will be the best thing for Jude. We had found some research that night that said the elimination diet (just cutting out foods the persons tests allergic to and then retesting) has about a 50-75% success rate in taking care of the problem. The Elemental diet has a 99% success rate.

We were able to have an absolutely heaven-sent conversation with our angel allergist, Dr. Gottlieb, on either Monday or Tuesday morning. He spent over 30 minutes talking with us, answering all our questions, going over research studies with us, and explaining things until we felt comfortable. We had our list of questions and he was so patient as I hurriedly wrote down everything he said. After speaking with him, we felt more sure about the Elemental diet.

The Elemental Diet is where Jude will eat/drink only Neocate formula for about 6 weeks. NO FOOD. You can imagine how difficult this would be for a child. Especially one Jude's age who doesn't understand why. Why we just suddenly stopped feeding him food and expect him to drink a large amount of formula every day, nothing else. But most kids do surprisingly well. I've read about other people who have done it (adults, even) and they get to the point where they don't even have a desire to eat and they will crave the formula because it makes them feel better. It would definitely be easier if Jude was younger because then he wouldn't be so used to eating. But I am grateful I've been able to breastfeed him for as long as I have and it would have been even harder for us to have to give that up when he was younger. So, he drinks only the formula for about 6 weeks and then they do another EGD. There is a very high chance that his throat will be completely clear, healed, and have zero Eosinophils. Then comes the Reintroduction. We will start out with one food, say apples. He will eat only apples (and his formula) for about a month, then we'll do another EGD and see if he's still clear. If so, then we know apples are a "safe food" for him. Then you add another food, then another, etc. After a while you can trial several foods at once if you are feeling especially lucky or if things have been going well. You group similar foods together.

The big stumbling block here was that we would have to stop breastfeeding in order to do this diet. We need to be 100% sure of what he is ingesting and we know while he is breastfeeding he is getting what I eat. This has been really hard for me to come to terms with. Jude and I absolutely love breastfeeding. We worked so hard at it when he was born and 19 months later we are still going strong. I always thought I would nurse him for years and let him decide when he was ready to stop. There is nothing I love more than laying down next to my little angel and nursing. It is our thing. It's all we've ever know. Trying to imagine life without it is just unsettling. So many taking breastfeeding for granted. They stop just because their child turns a year old or they just don't feel like it any more or they want their body back (?!? that one baffles me), or their child supposedly weans them self (I can't even fathom thing because Jude is completely obsessed). They wean and it's done. Then there's us. Neither one of us has even the slightest interest in weaning.

On to weaning... We have cut out the nighttime and all "just because" feedings and now only nurse at naptime and bedtime. Dan goes in with him in the early morning when he wakes up and rocks him and gives him a drink and he'll usually sleep for another hour or so. When he first eliminated the nighttime feeding he went from sleeping 12 hours a night to 10. He has slowly worked his way back up to 12. It's been about three weeks since we've cut this one out. I want to wait until I feel like he has adjusted and is used to not nursing at this time before we cut out another feeding. I literally feel sick to my stomach when I think about it. I was an emotional mess when I faced the fact that I would have to wean him. It completely breaks my heart in the most violent and heartless way. It hurts so deep down when he wants to nurse but I can't. I just have to remind myself that it will be the best for him and we have to do it in order to get his EoE under control.

So, what now?!

The past week or two I have been torn with when to have him completely weaned and start the elemental diet. We are flying to San Antonio on August 2. I think the stress of moving and weaning will be hard enough for Jude, to throw cutting out all food on top of that it just too much at once. When Jude is on the Elemental diet and not eating, we will just not eat in front of him at all. We will just do all we can to act like food doesn't exist. So to be flying and moving out and it would be near impossible to be in the early stages of this transition. Not to mention I would starve because he wouldn't have his own room to nap in and we would be together all the time so I wouldn't ever have a chance to eat. (I hardly eat as it is because I don't like to eat anything he can't have in front of him!)

So we are going to continue to wean him slowly and have a goal to have him completely weaned within a couple weeks of moving to Texas and getting settled in so we can start the Elemental diet and move forward. Hopefully by then Jude will feel comfortable in our new place and adjusting well. I'm hoping we will be able to get our new insurance set up relatively quickly and get our new doctors in order so we can continue to move forward and plan to get his next EGD set up.

When we spoke with the allergist on the phone, he gave us the long list of all Jude's allergies and the "maybe" ones too that he recommended we take him off of just to be safe. So for the next month or so until we start the Elemental diet, he is on an extremely strict diet. I am hoping maybe this will help with the transition because he will be sick of the foods he is getting and maybe just lose interest. :( It's so sad to even say.

We are currently "allergic" to:

MILK
WHEAT
SOY
EGGS
NUTS
CORN
POTATOES
RICE
BARLEY
OATS
MUSTARD
ALL GRAINS
ALL MEAT

He puts being Vegan to shame. We are moving forward. I feel surprisingly peaceful even after writing this lengthy, overwhelming post. My faith is in the all-knowing God who lovingly created us and created a perfect plan for us. It is unbelievably difficult to have to watch my child go through this and know he will suffer for his whole life from this. But I know it is for our good. I know it is all part of the eternal plan... all part of learning and growing and trying to become more kind, meek, and able to bear one another's burdens. I know Jude is strong and he will be able to not just face this, but face it with strength and faith in the Lord. I intend on being strong for him so he can lean on me. If he sees me as an unstable wreck who is unable to handle this, how is he expected to? We are in the midst of the difficulty of trying to figure out how to take care of it. We will move forward and find safe foods for Jude and I'm assured I will become an amazing cook with however many foods he ends up being able to have. It will become normal and just a small part of life. It already has been and will continue to be a blessing to Dan and I and the rest of our future family because we will all eat healthier and be aware of what we are eating. 

My hope for Jude is that we will be able to clear up his throat, find as many "safe foods" as we can and it will be enough for him to have a somewhat normal diet. (Some people with EoE end up with one or two "safe foods," some have twenty) I hope one day I will be able to make Jude a birthday cake and that he will be able to have enough of a variety of foods that he will be able to receive the nourishment he needs from them.

So that is our update. It feels good to post this because it means we have made decisions and are getting answers and have a plan. I am so grateful for that and boy, do I love my little boy!

Patch testing



***UPDATE***

I have since spoken with my dietician and a little bit has changed. I wondered if it was worth it to strictly adhere to the above list of allergies when we know we're going to be starting the Elemental Diet soon anyway. That list was compiled more for the thought of following the Elimination Diet. He has been growing, happy, healthy, rarely vomiting, and has had a good appetite over the past several months so we've decided to not strictly adhere to the new diet 100%. We had to weigh the options of giving him such a limited diet over the next month that he would probably loose weight (not to mention how very difficult it would be while moving), or just staying on the diet we've been on, plus a few more things. Since we know in about a month he'll be off all food altogether, we don't think it make a huge difference in the long run.

I have still cut out all meat and grains. I still give him quinoa (which is actually a seed), but I'm not doing it 100% like the wheat, eggs, dairy, and nuts. For example, his butter has "natural flavor from corn" in it and I still give him that. And I'll let him have the Veggie Straws in nursery even thou they are mostly potatoes. (They already completely changed the snack routine for him!)

He mostly eats fruits, vegetables, and beans. If anyone has any yummy ways to cook beans let me know! A boy can only eat so much hummus and channa masala!

Thank you so much to everyone, first of all for reading this long post, and more importantly for your support and words of encouragement! I love to hear from all of you! :)