It's Official - Another, Possibly THE Diagnosis

Well, today was the much awaited GI appointment for Beans. As with everything in life, there was good news and bad news. The good? He's 54 pounds (10-15%) and 51 1/2 inches (25-50%)!! Height and weight are great. More good news you ask? Sure, here it is - we now know the reason Beans has had so many issues. The reason that no matter how much food he ate by mouth, he would never gain - it was like negative calories. The reason for his low endurance, leg pains, headaches, chest pain, and stomach pain. The reason for the dark circles under his eyes and the redness around them. The reason for his horrible, bleeding diaper rashes for so long. The reason for his asthma. Even possibly/probably the reason for his subglottic stenosis (airway abnormality) and chronic ear infections. (Though the last two could be caused by his genetic disorder, there's not enough research on either to know for sure.) Drum roll please......Beans has Eosinophilic Esophagitis.

What in the world is Eosinophilic Esophagitis? It's a rare (of course, this is Beans we're talking about lol) disorder characterized by the infiltration of a large number of eosinophils, a type of white blood cell, in the esophagus. Eosinophils are an important part of the immune system, helping us fight off certain types of infections, such as parasites. So basically, Beans' immune system sees food (EVERY food so far, even the most generic, generally safe foods such as watermelon) as an invader that must be fought off and destroyed. In attacking the food, it also damages his esophagus and reeks havoc on his entire body. The GI considers him a very severe case, due to the number of foods he reacts too and the severity of his reactions (since they affect his respiratory system they can be life-threatening).

There is NO cure. He will NOT grow out of it. The treatment is an all elemental diet. Elemental consists of three options all made from the basic amino acids of foods rather than the food proteins themselves. The three options are all formulas - Neocate Jr, Elecare, and EO28 Splash. All are repulsive, vile tasting drinks. Thankfully Beans will continue receiving it through his G-tube as he has for many years.

You thought that was bad? Well, there's more. First, Beans' very first endoscopy that he had at age two showed a severe case of EE. His prior doctors (basically every GI in Utah) all blamed the results on reflux, despite having other testing that showed NO reflux. In all likelihood, he never needed his stomach surgeries (other than having the g-tube put in) to treat the reflux. He needed to be put on the special formula. Second, Beans is allowed NO FOOD - none at all - for at least a year. In one year they'll rescope him and if he has a clear scope he'll be allowed to trial one food every several weeks to see if his body can handle it.

Beans is devastated. His health has improved immensely in the few weeks since his doctor took him off food, but this is very hard. Imagine one day you suddenly weren't allowed anything except a nasty formula. He was a trooper the past few weeks, but hearing that nothing will change for at least a year broke this little boy's heart. The GI hesitantly is allowing him to drink lemon-lime flavored Gatorade as his one concession until next summer. If he starts showing any signs of reaction though, this will be gone too.

My mommy heart is broken. I can't let him see how sad I am for him. I must remain upbeat and show him all the things he's so lucky to have, but when he asks for food - and I'm not talking candy, I mean chicken, broccoli, things others would love to have their children begging for - all I can say is, "No, hopefully we can trial it in a year."

On the way home he cried and cried. Finally I convinced him to play his DS that Uncle J and M so kindly gave him. Then I started to here that familiar giggle. Sure, there will be bumps, there will be tears, but there is also smiles, cuddles and lots to look forward to. He's still the same wild, crazy man Beans he's always been. Now he'll be a healthier version. :)

Ronald McDonald House

I know we've all heard of this place, maybe you've even donated at McDonald's, but I wanted to make sure you all know just what a service they provide. We have stayed in two locations - one when we took Beans to Cincinnati and this location in Orlando (where we've stayed several times). The expense of having a chronically ill child is extreme. Yes, there's insurance, but it doesn't come close to covering all the expenses. We spend a fortune in gas to and from appointments, over the counter medications (Beans goes through a bottle of Benadryl about every 2 weeks! A bottle of Motrin lasts about the same, and those are only a couple of the things we have to buy.) Then there's the medical tape, bottles for bolus feeding, and other assorted expenses that aren't covered. Don't forget to add in the missed time from school and work, the hours of missed sleep, and the endless time spent on the phone with doctor's offices, pharmacies and home health companies.

When you have to travel for care, Ronald McDonald House is a HUGE help. I had to reschedule Beans' appointment once already because we just couldn't afford the 5 hour each way trip. It wasn't fair to him, but what are you going to do? This time we're cutting it extremely close, but because of RMH we were able to make it. This is so embarrassing to share, but I want you to understand how much this place means. We literally had money for gas on the way down and on the way back. That is all. We are able to stay here for $15 a night - which thankfully my car didn't take quite as much gas as I thought it would so we should be okay - and McDonald's provided a delicious taco dinner (yes, I know - Tacos from McDonald's? LOL) so we were able to eat. It's a terrible, depressing feeling to not be able to provide everything your child needs. Thanks so much to McDonalds and the Ronald McDonald charities for making it possible for us to make this very important appointment.

P.S. Tomorrow is a critical day for Beans - we are hoping to get approval to start food trials and find one - any - safe food for him to eat. There are also a few other questions weighing heavily on my mind, so any spare thoughts would be appreciated.

Life Goes On

We're all adjusting to this new curveball in Bean's life. Beans and I are both still grieving the loss of the most basic human instinct - to eat and to feed your child. He's coping as well as can be expected. He hasn't cheated at all, knowing that one cheat could be the straw that breaks the camels back and sends him into a severe reaction requiring use of his Epipen (shot), 911, an ambulance ride, and a lot of other scary things. And though he understands a lot better than when he was 3, he cries several times a day wanting to eat. I would have dreamed of this day a few years back when he refused all food. Now he finally wants to eat and all I can say is NO. As soon as I can I want to get him a GameBoy DSI with a couple of games (Bakugan? Pokemon? something he'll LOVE) that he can play only when Little Man and I are eating. It's so hard to feed Little Man, let alone eat myself, when I can't feed Beans.

Physically, he's doing a lot better. His skin is almost clear for the first time in weeks! His gurgly/choky throat is clear. He has no eczema on his ears. The dark circles that have lived under his eyes for a long time are GONE. The cough that bothered him all night every night is gone too. It's exceedingly clear that food and Beans do not agree with each other.

So, I tell my 9 year old who has just gotten his taste of being a normal kid and all that entails, that I know life isn't fair, but that I love him more than life itself, that I would never have been complete without him, and I'm right here with him. I hold him while he cries then he happily jumps into his computer games or an art project. I hear him sleep peacefully at night, and I know this is what he needs. Someday maybe food will be a part of his life, but in the meantime the g-tube and Neocate are literally lifesavers and we'll continue on with his normal life.

Sad. Mad. Scared.

I haven't updated for a long time. I try to always stay focused on the positive, but that's been incredibly hard lately. Not having a reason for Little Man's increasing neurological difficulties is scary. He has days that he's very much "there" and then he has days where he can't talk straight, makes no sense and is just so out of it. That was bad enough.

Beans has a very complicated medical history including 4 months NPO when he was 3 due to aspiration. It's been a lifetime of struggles with food. From refusing to eat, to aspirating, to food allergies, dysphagia, and other issues. It has taken years and tons of work to get him to the point he's at - wanting to eat even though his diet was greatly limited by the dysphagia (difficulty swallowing) and food allergies.

In the last few weeks, his system has gone to new extremes. Within minutes of eating ANY food he breaks out in massive hives, his throat gets gurgly and he's admitted to pain/weird feelings in his throat and chest. These are not avoidable - he has reacted to things like watermelon, chicken, banana, a chocolate rice bar, even blue slushie from Sonic. His CMS nurse had us get Epipens to keep with him at all times. Epipens are injections of epinephrine to use if he goes into respiratory distress from an allergic reaction.

I've been trying to get ahold if his GI for a few days and finally heard back from him today. It's not good news. Beans is not allowed ANY food whatsoever. None. He may have water and his special elemental (amino acid) formula thru his g-tube. He sees the GI at the end of July and we'll discuss things more then. The reactions are too severe to risk feeding him.

NPO is bad enough before surgery. It is HELL for a 9 year old boy who has recently discovered a love of eating that most of us are born with. I know we have to do it for his safety. We live 45 minutes from the nearest hospital and if his throat swelled shut, even with the Epipens, it would be a really critical situation. I know all that.

But I also know that Beans loves to eat. I know how horrible NPO was when he had to do it before. I know how aware he is of being "normal." I know how much he missed out on this past year with his limited diet, and now I have to take away all of that. I will do it, I have to do it. But my heart is broken.

Busy Busy Bees

This week has been one of those where you hold on tight and enjoy the ride. Or try to enjoy it. Or maybe just try to get through it. Last week was the much awaited ENT appointment to address the boys' breathing issues while sleeping. Bleh. It's taken four months - and three or four appointments - since their sleep studies in early December for the ENT to decide these kids are way out of his league and finally put the referral through to the pediatric sleep center at Shands in Gainesville. In the meantime, while Beans has remained fairly stable with his sleeping, Little Man has deteriorated. Horrible trouble getting to sleep, staying asleep and snoring like an old man when he is actually sleeping. His night nurse has been checking him extra because he's making so much noise.

ENT assured me that an appointment would be scheduled quickly, but this isn't my first day on the job. :P Anyone who has dealt with the referral process won't be surprised to know that we haven't heard a thing about the appointment, even with his CMS nurse following up on the referral a couple days ago. CMS nurse was honest with me and said that these things can take a long time to get scheduled. No surprise really, but when your kid drops his oxygen level when sleeping you'd like to know he's really okay not being monitored at night. Little Man's levels only dropped to 83 but that's plenty low enough for me to worry, being a mom and all.

Today Little Man had his combo psychiatrist/behavioral pediatrician appointment (they see him together). The past couple weeks have been beyond horrible. He's gradually been sliding downhill over the past couple months but these weeks I think he jumped off the edge and dragged the whole family, and likely his teacher, with him. Aggressive, irritable, impulsive, sometimes not going to sleep until 4 am, and other mornings waking for the day around 3 or 4 am.

In addition to the lovely behavior issues, his coordination and balance have decreased significantly. His pediatrician noticed it at his checkup in March and the psychiatrist and behavioral ped couldn't miss it today. His speech is also often slurred and he frequently has trouble finding the right words. The doctors today are very alarmed. They said the increase in behaviors plus the neurologic decompensation are big signs that we're missing another neurological component to his overall picture.

This led them to order an immediate EEG (well, later this afternoon, but still dang quick), they're calling his neurologist and writing a letter with their concerns to get him in as soon as possible, they're also contacting the geneticist to get their input. In the meantime, they switched one of his meds and added back in a seizure med (Trileptal). They're not sure if he's having some sort of seizures that are triggering some of this or not, but the Trileptal also has mood stabilizing properties so it's a good place to start.

When we left the psych appointment, we raced across town so I could take my anatomy practical then we raced back across town to get to his EEG at 12:30. He was such an angel for it! He held so still while she glued all the electrodes on his head, as soon as he was allowed he went right to sleep.No obvious seizures appeared on the EEG, but we won't get the final report until Tuesday. I'm not sure if a normal EEG rules out seizures or if it just means he didn't have one then. It's probably a question for the neurologist.

Obviously, hearing that your child with so many issues, has yet another one - another neurological one no less - that hasn't been identified yet is a lot to deal with. We likely won't have answers for at least a few weeks. We have to travel to Jacksonville for the neurologist, Gainesville for the sleep clinic and luckily genetics comes up here. I just hope these new meds give his body and mind some relief. He feels horrible being out of control. He tries so hard, but sometimes he just can't do it. Hopefully we can get answers. It's difficult to fight the unseen enemy and just keep trying to treat symptoms as they arise, without knowing the cause behind them.

On a totally different, much happier note, Beans started soccer this week! He absolutely loves it. His days of being an impish little brother have served him well. He's not afraid to get right in there and snatch that ball away from the other kids, even though he's the smallest. He loves being part of a team.

Running with his team - at the front of the pack no less

Right before he stole the ball away as his friend went to kick

Showing off his kick to his coach

I also got a lead on a possible daycare for Beans this summer. Little Man will be home with his nurse, but Beans would be so much happier playing with other kids and getting out of the house. Cross your fingers that it works out, as the opportunity is pretty amazing. If it works out he'll actually have a special ed teacher from his school handling his tube feeds and care and looking out for him. Can't beat that.

Oh Yeah, Autism

Otherwise known as we have got to get out more. :P I've been meaning to pick up some new socks for Little Man to wear with his new orthotics for a while. The trick is, to get the ones I wanted - the ones suggested by our friend Pax who wears orthotics himself - I needed to go to the Journeyz store at the mall in Tallahassee. We live in the sticks. Our town is beyond tiny and we generally only travel into Tally for doctor appointments and I go there for school. Today has shown me we really need to change that a bit lol.

We get to the mall and Beans is looking around at the different stores you can see from the parking lot and asking which one was The Mall. Whoops. Missed a concept here. I did take him to the mall recently with my brother, but we only went into the Guitar Center store that we entered directly from the outside. Needless to say, Beans was a little confused.

We get in the store and Little Man starts freaking out a little. Not behaviorally (thank goodness as I don't know what I'd do just having had surgery) but he was so anxious. He refused to walk anywhere near the railing (we were on the second floor) and all the people were stressing him out. Poor little guy was so overwhelmed. I had to hold his hand the whole time (he is coming up on 11 years old) because he'd either start to freak and go the wrong way or he'd see something and get distracted and start to go off who knows where. Oh yeah, Rachel, this is what having a son with autism is. Yes, he's so fortunate to be high-functioning, but there are so many situations we don't even think about that are too much for him.

Luckily the salesgirl at Journeyz was very helpful, even with a crowded store, and helped us find the socks and we got out of there quickly. We needed to go down to the first floor so our next adventure was to brave the escalators. Little Man was apprehensive again. Add to his he's not the most coordinated person in the world and his visual spatial awareness is very lacking and escalators are quite exciting. :P He held my hand and I told him when to step and he did good. Once he was on he wasn't even worried.

After we left the mall, my plan was to take the kids to Tom Brown Park. I was happily surprised to see a Michael's craft store as we left the mall. We stopped in there and found some race car transfers that I'm going to try on the backs of his orthotics. I'm hoping they work okay. They should look much neater than that plain white if they work. While we were there, the boys each had to get a hat and a tail.

Then we finally made it to the park. Here they are all decked out (Little Man's not in his orthotics...I've totally slacked on that but my resolution this week is to have him wear them everyday.) You can see Beans' tail in his hands.

Beans loved wearing his new accessories. He said kids kept coming up and asking him about the tail and grownups kept coming and asking where he got his hat. Such a little attention seeker.

Probably the funniest moment of the day happened on the tire swing. I was pushing the boys and dropped my camera. Of course it landed right under the swing. I give the boys a big push and bent down to grab it, figuring I had time. Well, I did in fact have time to grab the camera and then - you guessed it - slam! The kids came back and bumped me and I fell flat on my butt. We were all laughing hysterically. And I have to admit the shredded tires covering the playground work well - neither the camera nor my behind suffered any damage. ;)

Beans loved climbing this rope pyramid. He is such a monkey now! He'd climb up there and wave his tail around. Unfortunately, try as he might, Little Man could not keep up. He got up on about the first level and slipped off scraping his arm. :( He's so tough though, no tears just back to playing.


Tonight we're dying some more Easter eggs then the boys are heading to bed in anticipation of a certain bunny's visit in the night. We had such a great day and the kids are off all week for Spring Break so I can't wait to see what the rest of the week has in store.

Fun Stuff

Today I signed Beans up for soccer! He is so very excited. Little Man has done soccer before but Beans was too weak to participate then. Beans is doing so very well and was so very excited. We got lucky because today was the deadline and I realized it 15 minutes before it closed. Whoops! A quick dash in the car and I found out we were far from the only ones who made this mistake. Those of you who have known Beans for a few years would have been as shocked as I was to hear this little voice call out, "Beans! Hey!" My little boy turned around with a big smile, waved to his friend and raced up to the door. He didn't even know this boy's name but said he was from school. It seems he knows half the people in this town. Everywhere we go, he sees someone he knows. What a change from the shy little boy that hated people. It's so neat to see!

I'm proud to announce that we have even more good news! Drumroll please......BOTH boys made A/B Honor Roll AGAIN this quarter!!!! OMG I am so thrilled for them. They never stop amazing me. It's such an honor to be their mom.

Tomorrow is the boys' last day of school before spring break. They're very excited. I have quite a bit to get done next week to make schoolwork up from having my gallbladder out, but I'm sure we'll find time to have some fun. On the 7th the kids see the ENT to discuss, yet again, their sleep apnea. Little Man's sleep is so terrible right now that I don't care what we need to do but something MUST be done to help. Then on the 16th Little Man sees his psychiatry team for a bit of tweaking on that front.

We're so blessed to have so many things come together perfectly over the past few weeks. I really think I'm the luckiest person alive.