Jacob & Lili

Jacob & Lili

Sunday, December 18, 2011

The Good...The Bad...And the Gluten Free

Last week was my sit down with the kids pediatrician. She had in hand their various lab results. Although I knew what was coming, I don't think I was really prepared for hearing it out loud much less seeing it on paper. Here's the run down:

Jacob - confirmed for mitochondrial dysfunction. Similar to mitochondrial disease but not as severe. It is managed the same way the disease is, the Mito cocktail.

She suspects that he may either have candida or bacterial overgrowth in his gut. I had put off the stool labs because of the expense but will now have to do it.

Lili - She tested positive for a non-celiac gluten intolerance. Simply put, levels are high but not high enough to diagnose celiac, therefore a gluten intolerance. Her IgG testing confirmed this as well. She also has a dairy intolerance.

Her Vitamin D levels are lower than Jacob's which is concerning. For Jacob's to be low is "normal" considering he has an auto immune disease. So we are rerunning the celiac labs, this time the labs are being sent to a more specialized lab.

The doctor suspects that it is very possible that Lili may have a parasite or candida. So again the stool labs that I had put off will be done this week.

I left the doctor's office with more lab slips and more supplements then a drug store. The kids are now on the following supplements which are all hypoallergenic.

Jacob: Pro biotic
Vitamin D3
L-glut amine powder
CoQ10
Moducare
B12 shots
L-arginine (if he reaches he CoQ10 dosage)
Klaire-Vitaspectrum (multi-vitamin)

Lili: Pro biotic
Vitamin D3
B12 shots
Trienza Chews
DFH-GI Revive
Gluten - Free Diet

I think I've got a handle on making sure they are taking their supplements. I feel like a drug dealer two times a day. The B12 shots are being shipped out so that will start sometime this week. That is going to be a challenge.

I told Lili that when we got back from San Diego for Jacob's 6th scope, then we would start the gluten free diet. Well, today is the day. I took her with me to Whole Foods. She is not taking this very well. Everything I suggested she said no. I wanted to stop and yell at her. Tell her be grateful you don't have to have a feeding tube like your brother, but I managed to keep it together. We finally found some things that I think she will like. It was exhausting. Just like with Jacob, I have to read every single label. When we left I had food for Lili and Jacob, but had completely forgotten about myself and Gary.

On the upside, Jacob's scope went well. His doctor said his esophagus and stomach look really good. The biopsies will tell us truly if corn is a pass. I broke the rules this time around. I've let Jacob start his next food trial without having the results of the biopsies. He so much wanted to try ham and bacon while we were in San Diego, I couldn't say no. I did tell him that if the biopsies show that corn is a fail that he'll have to stop the pork for a few weeks. He was willing to take the chance. So in the past few days, he has eaten more swine then I think he's ever eaten in his life. Here's hoping corn is a pass!

Wednesday, December 7, 2011

One Year Later...

One year ago today, I received a phone call from Jacob’s GI at the time. His endoscopy results showed over 50 eosinophils, he was officially diagnosed with Eosinophilic Esophagitis. That was the beginning of one of the hardest years of my life.

As most would do, I immediately jumped on the computer and did as much research as I could. I educated myself on what EoE is, how it is treated, and what the possible outcomes might be. I suppose I was a bit naïve at the time thinking that we would easily find the trigger of his EoE with allergy testing. After all, Lili had gone through something similar though it was never said she had EoE. Through patch testing we learned that her triggers are chicken and turkey and I had hoped it would be that simple with Jacob.
But it wasn’t that simple. Allergy testing failed to point us in a direction. An elimination diet failed. As we tried one approach after another, Jacob’s symptoms continued to worsen. Feelings of anger, frustration, worry, and desperation would cycle through all of us leaving us exhausted.

As many times as I wanted to give up, giving up wasn’t an option. Lili was still in need of help and guidance with her own issues. She was in fourth grade, a transition year. Fourth grade meant more responsibility on her part but with 3 learning issues and a free spirit, this proves to be a challenge. Her teachers and tutor were amazing and did what they could to help knowing that Jacob was sick and needed more of our attention. Then in February Lili started getting sick again. Her acid reflux was back and she wasn’t eating. Not even weighing 60 pounds, Lili needs to eat. She was diagnosed with gastro paresis, a condition where her stomach muscles don’t contract effectively enough to send food into her intestines. Again, I did the research and found that there isn’t much that can be done for GP and sometimes a feeding tube is the only answer.

During all of this all I would say to myself: “I can’t do this.” “I didn’t sign up for this.” “This isn’t what having kids is supposed to be about”. No matter how many times I said this to myself, the reality of the situation is that I have to do this; this is what being a mom to my kids is about. There is no quick fix and no backing down. I had to keep fighting even when I just wanted to hide under the covers and cry.

Over the course of this year, we have travelled over 6000 miles looking for help. I have hired and fired 3 GI’s and our pediatrician. Both kids have endured countless blood draws and x-rays. Lili has had an endoscopy, a contrast MRI and 2 delayed gastric emptying studies. Jacob has had 5 endoscopies and 1 colonoscopy. He has gone from and elimination diet to an elemental diet. He has had an NG tube, a G-peg tube and now a Mic-Key button. His day revolves around being “hooked up” for his feeds and changing his gauze around his button. Some days he goes with the simple white gauze, some days with a button buddy. He is tube fed with rice being his only safe food. He will food trial, one food every 6 weeks and then undergoes an endoscopy to see if the trial is a pass or fail.

Lili’s condition remains untreated. This next year my focus will shift to her. She will be 11 and only weighs 60 pounds. She’s lost 5 pounds over the past 2 months. Something for her needs to change.

Having kids with special needs and who are chronically sick can be a lonely and isolating world. A world that most outsiders can’t really comprehend. Every moment of everyday there is worry in the back of my mind that something might happen. Days and nights seem to run together in a blur. You begin to grasp onto those rare moments where everything falls away, your kids are engaged in life and smiling, and there is laughter.

Thanks to the great world of the internet, there is an EoE family out there ready to help and answer questions. This disease is “rare” and we rely on each other to find answers that the doctors don’t seem to have. We are scattered around the country and the world but we worry for each other. I can’t say how many times I’ve needed help or advice and have been able to find help within minutes. It is a comfort to know that our EoE family is out there.

This year has tested my resolve. It has tested my patience, faith, and perseverance. It has dragged me down to my lowest lows, forcing me to fight harder than I ever have. I have watched my children suffer in pain and have watched them learn that pain is something that will be with them. This year has forced me to make hard and fast decisions over and over again. This year has thrown me into a world of doctors and medicine that most don’t see. A world where I may know more than the doctor treating my child.

Could things be worse? Yes they could and I know this. But knowing that my children’s disease is not fatal doesn’t alleviate the stress and pain that the disease dumps on all of us. But they look good, healthy even? Yes they do. But how many times have you felt horrible. You have a headache, a cold, a pain in your body but you put a smile on your face and continued on with your day because you have to. Then it is only when you get home, where you are safe and secure, does that façade fade? You would be surprised to learn that children can carry that façade even more convincingly that most adults. This year has taught me those lessons.

Moving forward, we will continue to fight. We will live life in spite of the hurdles. Jacob’s life has seemed to settle down and his disease has become part of our routine. Now I will take on Lili and her illness and hope that that journey isn’t as hair raising as Jacob’s. We will continue to hope for answers.

Tuesday, November 15, 2011

Scope #5 - Pass or Fail?


After 6 weeks of eating rice, brown rice pasta, rice crackers, and rice cakes we took Jacob back to San Diego for another scope. During this scope they replaced his G-peg tube with what is called a Mic-Key button. Now he no longer has a tube hanging out of him. When he's on a feed we plug into the button but otherwise he is free to run around without worrying about catching the tube. One step closer to living a fairly "normal" life.

Putting Jacob under general anesthesia and leaving him the hands of the anesthesiologist in the OR never seems to get easier for any of us. This time around they didn't give Jacob the "silly juice" before taking him back. I walked Jacob to the OR and watched as they used their potions to put him under. I used to be volunteer in the OR when I was in high school and have seen a lot. I have this uncanny ability to disconnect myself from these situations so I can get what needs to get done, done in spite of of the pleas from Jacob that he's not ready. He's never ready. But that disconnect only lasts for so long.

The biopsy results came in on Monday showing no inflammation and 0 eosinophils. Rice is officially a pass. Jacob has decided that corn is next. So back to the store I went for canned corn, corn chips, and popcorn. Another 6 weeks and then we will see...

Sunday, November 6, 2011

Family Vacation?


This is a topic I've been meaning to write about for awhile. I would like to state for the record, family vacations are NOT vacations. I would say they are more like family experiences. When I think vacation I think of relaxing, sleeping, enjoying my surroundings uninterrupted. We love taking our kids to different places and exposing them to new experiences. However...being with you children 24 hours a day for however many days in close quarters does not make for relaxation.

First there's the pre trip mania of packing. Not only do I need to make sure I have all our needed clothing and toiletries but I have to make sure we have enough feeding bags, formula, syringes, medications, gauze, etc...

Then we get there. The kids are so excited and want to get going before I haven't even had a chance to catch my breathe. And then the fighting starts. Sibling fighting never takes a vacation. There's constant negotiations in order to keep the peace and my sanity. On this last trip I told Gary that I was going to take walk down the beach to clear my head. You know what happened? They followed me!

We love watching them play and be kids. Those moments are priceless. In between the fighting, the pulling in every directions, feedings, and whining there is family fun to be had. This is a family experience.

Now my vacation, that is time alone with my husband enjoying the quiet and taking a breathe.

Friday, October 28, 2011

Settling In...and RICE!!!!!

Life seems to have settled into a routine of sorts. Our walk for CURED was fantastic and really gave Jacob a sense of empowerment. He has no control over this disease or what happens to him but it made him feel good to see so many that support him and other children like him.

Since the walk, we made the decision to take Jacob down to San Diego and have a G tube put in. Now he doesn't have the NG tube on his face so his disease isn't as obvious anymore. It took a few weeks before he was back to running but now he's back to his old ways without worrying that the NG will come out. His scope was clear as well so now he trialing rice, in all it's glamorous forms. He's eating white rice, brown rice pasta, rice crackers, and rice cakes. I managed to make rice pancakes using home made rice milk paired with a brown rice syrup. In two weeks we find out if the rice is a pass. His next food is a debate right now. He wanted to try pumpkin but now I've got him talked into either beef or potato. Beef so he can have hot dogs again. Potato so he can have fries. We will see what the ultimate decision is soon. Exciting stuff in the Maupin house.

Both kids went in for a myriad of blood testing a few weeks. We are pretty sure that Jacob also has Mitochondrial Disease along with who knows what else. Lili, may also have Mito but her doctor things she has Candida. These labs take so long to get back and I'm trying not to think about it and the consequences of these diagnosis. It would seem that EoE is far more complicated then just an food allergy driven autoimmune disease. Other diseases seem to piggy back with it and these doctors need to start looking into this as well. But how many things can you tackle at once?

Both kids are back in school. Jacob has finished a full 2 weeks of school! And both are doing so well with their classes. Lili rocked her 5th grade play as Aurora. I am one proud mom. They have endured so much and seem to just keep pushing through. I'm not sure I could be that strong.

In two weeks, Jacob has his 5th scope and his peg tube will be changed to a Mic-Key button (no more visible tubing). Lab work will come back. I'm sure our lives will be turned around again but we seem to be able to recover quicker each time. Thank goodness for that.

Tuesday, September 13, 2011

Jacob's Walk for CURED



Our walk was a huge success. It was a lot of work and I think I gained a few more grey hairs in the process but it was worth it. In our small way we have helped in the search for a cure for not only Jacob and Lili but for all kids who are suffering with EOS. As Jacob gets older he can say he had a part in this.

A huge thank you to my cousin Trish who got up at 5:30 am and helped me at the park. Thank you to Wende and Mindy for their friendship and support. Thank you to Melissa for her amazing photos. And to Tammy for her words. Diana, for loving my kids and support. Penny for the same. Marietta, for your friendship and those amazing cookies. Finally, my parents, who have been supporting us through this whole ordeal. Love to you all. We will overcome this.

Jacob has his next scope next week and we are hoping for good results. Stay tuned... Jacob's 2nd Annual Walk for CURED is on the horizon.

Saturday, September 3, 2011

35!...Make it stop!!!


Tomorrow I turn 35! How in the world did this happen? Remember being 15 and thinking that 30 was so old. That are parents were moronic at best. And that we knew it all. And now here I am.

Sure I have regrets. My path hasn't gone the way I had dreamed at 15. But then my life so far is for the most part not too shabby. I have a great husband. We celebrate our 12 year wedding anniversary on Monday. I have 2 great kids. Granted they both have issues but they are both strong and amaze every day. We have a home, jobs, and food on the table. We are able to to take a break every so often, thank you mom and dad. It's so easy to dwell on what we haven't accomplished and it can bog us down in our own self pity. The struggle is to remain positive. To encourage ourselves to keep going, especially when your child suffers every day.

Both kids are doing amazingly well in school. Lili has been cast as the lead in her class play, no small accomplishment since their drama teacher is a nazi of sorts when it comes to the theater. Jacob is taking his NG and feedings in stride and isn't letting it get best the of him. How many of us could do the same?

So turning 35, wretched as it may be, isn't so bad? Well, we'll see how I feel come tomorrow morning when its official.

Wednesday, August 17, 2011

Looking Back or Ahead?

The kids start school next week. Where did this summer go? Jacob will start 2nd grade and Lili 5th. Next week I'll work on how to do Jacob's feeds while he is at school and with Lili, how to get her to eat.

Due to some major hurdles in what is best for Jacob's care, we are now going to take him to the EoE clinic in San Diego. Not sure what is waiting for us there but hopefully it'll be positive and Jacob can continue to get better.

Since going elemental, his personality has changed dramatically. Gone is the moody, grumpy, angry boy who tested my patience to the bitter end. Now we have our little guy who is all his dad's goofy with a splash of my sarcasm. Love hearing him giggle. And secretly love hearing him logically harass his sister. The doubts I had in the beginning of taking him off food are gone. It is obvious that he was in so much pain and his body couldn't handle the bombardment of toxins that it perceived was invading his little body.

My day is now dictated on when his next feed is and how long it will take. There's the 10 minutes of prep, 45-60 minutes of the actual feed, and then the 10 minute unhooking, cleaning, and clearing afterwards. Not an easy task. And try doing it in the car when that stupid pump keeps beeping while your driving. Trying to keep the car going in a straight line while reaching for the backpack, unzipping and looking for the reason why the pump is beeping! Talk about dangerous driving habits. But in the end, it's worth it to see him happy. Missing food but happy.

I realized today that I would more than likely would have started nursing school next month. My year off to take care of Jacob has turned into 2 faster than I can I blink. Sure, I get to play nurse with Jacob and Lili. But it's not the same when it's your own child. When I play the role of nurse but without the income or fellowship. Without the inner satisfaction of it. I'll be 35 soon and my pipe dream (as my brother called it once) of being a nurse and moving to London for a year, I've realized, is just that. A pipe dream. Was this the life I was meant to live? I'm not so sure. But it is the life I have.

I love my kids. I will do anything for them. I just wish I could do anything for myself.

Jacob will have his next scope in mid-September. Lili will be seeing new doctors for her GP. And we will move forward.

Thursday, August 4, 2011

An End to a Beginning

Jacob's elimination diet has come to an end. Although we hoped and prayed that it wouldn't happen, that he would be one of the few that would avoid this last step, it happened. Last week, he was admitted to Lucille Packard's Children's Hospital at Stanford where after much screaming and fighting, he had a NG feeding tube inserted. He is now off all foods. He has to take in a total of 1700mL daily of an elemental formula to survive. The problem is that the formula is disgusting so therefore the need for the feeding tube.

He's been on the elemental formula for a week and we've already noticed a major improvement in his behavior. He's happy and goofy. He's my crazy little boy again. In about 7 weeks we will take him to Cincinnati for his scope. If his eosinophil count is 0 we can begin food trials.

School starts in 2 weeks and I have no idea how we are going to do this. Jacob requires 4 feeds throughout the day, two of which fall during school hours. Not to mention the threat of the NG tube being pulled out. Then there's Lili and her lack of appetite. She will most likely need her ADD medication to concentrate in class but if we give it to her, what little she will eat she won't eat. I'm working on getting her in to see a group of doctors in Belmont who are not only MD's but also take a more holistic approach. Hopefully, they might be able to help her.

My great ambition to raise money for medical research has blossomed. Jacob's Walk for CURED will be held on September 10th. I've already received a number of donations for the raffle. I just need to know how many are walking? It's all very scary. I've never done anything like this on my own. I'm just hoping for a successful event so we can truly tell Jacob that their are people out there who care and who are trying to help him and his friends.




Thursday, July 21, 2011

Frustrations

Back from Maui. The kids had a great time. Although the battle of feeding Jacob was made easy by our hotel, we still had the pain and behaviors to contend with. Family vacations are not really vacations. More like family experiences. Now a vacation is when I don't have to worry about who is eating what, who is terrorizing who, and who wants what. Overall, our family experience was a good one.

Coming home Jacob started going into another pain flare. Two days home and he was crying in pain, begging for a doctor to help him. Unfortunately, there was no relief. We tried a medication which his body reacted to horribly. Once I finally got a hold of his doctor in Cincinnati the decision to pull him off all foods was a fairly easy one. But then there was the next step, find someone local who would insert a NG feeding tube so that Jacob could ingest the required about of formula day.

Well, over a week later. We still do not have the NG. Jacob's pain flare has now subsided. I was told by a hostel resident today that there are no beds available and won't be until next week. So in the meantime, we are trying to get him to eat and praying another pain flare doesn't start.

You begin to feel like you're isolated in this. There is no one out there who really truly wants to help and now we are left to our own means of helping Jacob manage.

Saturday, June 25, 2011

Growing Up

So far my blog as mostly dealt with Jacob's EoE. But for this post I want to focus on how proud I am of my babies. Jacob has OCD, ADD and high functioning asperger's. All of this combined with EoE makes life challenging. This summer I signed him for a camp for kids with special needs at DreamPower. Working with horses, the kids develop so many skills to help them grow and develop. I wasn't sure how Jacob would react to me leaving him at a camp with kids he didn't know. I was so surprised and so proud when he immediately took to his big buddy Max. He loved the camp and I do believe we may have conquered some of his anxiety issues.



Lili participated in another horse camp dedicated to English riding. Not being on her ADD meds because of the Gastroparesis, I was a little worried. But her riding improved so much. She truly loves being on the horses. There is something special about a horse.












More good news..my little man Morgun is doing a little better. His body is still infe
cted but he is improving slowly. He was transferred to Oakland Children's with the hope of going to Cincinnati Children's but those plans have changed. He is now being transferred to Stanford Children's so the immunology specialists there can try and pinpoint the problem. He's gone through so much but he's a trooper. His dad is back from Bahrain but will have to ship out again soon. So for the time being Gunny is enjoying his time in the hospital with both mom and dad.















And more good news! We have received our first donation for Jacob's Walk for CURED. Thank you Sarah & Vinnie at Alice radio in San Francisco. What a huge thrill it was to sit in for the show. I was very much star struck.




Tomorrow we leave for Maui! Finally a chance to relax. A much needed respite in the Maupin household. Aloha!

Saturday, June 18, 2011

Morgun, Jacob and living with EE


When Jacob was first diagnosed I joined a few support groups, one being a support group for local families living with EE. We met Morgun and his mom Mechelle at a gathering for this support group and I was immediately taken with this 18 month old handsome boy. For the past month this little boy has been struggling. He became so sick that he spent 10 days in the hospital and ended up with a g-tube. He is now back in the hospital. Today I made the drive to Walnut Creek to offer whatever support I could.

Morgun is running a low grade fever, he white blood cell is through the roof, and he has infection running through out his body. He can't eat, his g-tube isn't doing the job and his doctors are at a loss. The plan now is to transfer him to the local children's hospital where surgery will be done to identify the infection. Then we will be flown to Cincinnati Children's Hospital, where hopefully the EE experts can help him. There are many questions and no clear answers. Could he have mitochondrial disease, leukemia, have the eosinophils infiltrated his blood stream? Could this happen to Jacob?

His dad has been serving in Bahrain and is now being flown by the Red Cross on an emergency flight to be with his family. Mechelle has been doing this alone and I can't imagine how she is able to stay sane through this. Today I met her mom and 2 of her friends who are rallying around both her and Morgun.

Once back at home, Lili and I went down to her dance studio to promote Jacob's Walk for Cured at the recital. We had a lot of interest and one older lady pulled out $100.00
and gave it to me. I was stunned and so grateful. Hopefully, this money will help these doctors find answers so little ones like Morgun do not have to suffer like they are.

After the recital, Jacob went to a superhero party with our congregation. He had a fun time despite not being able to play the games because they involved foods he can't eat. He couldn't have any of the food offered for dinner either. I tried to keep it light and fun for him but it broke my heart. I reassured him later that I would have a food friendly party for him next month. It'll be a lot of work, to have to custom make all the food, but if he can have a party where he can participate in every aspect like any other kid, then it's worth it.

Thursday, June 16, 2011

Small Smiles


I can't just sit here and do nothing. So I've decided to organize a 5K walk to benefit CURED. CURED is a non-profit whose goal it is to raise money for medical research for eosinophilic disorders.

I've run plenty of 5K's and have run 2 half marathons and it's always a thrill. Being in California, us granola, sun loving folk are always looking for a run/walk so why not raise money to help my son and so many other kids who suffer with this disease.

I'm off to a good start I think. I've made the flyers and tapped into a few contacts. We live in a small town so I'm hoping that the community will rally around this cause. I got some exciting news today that I can't wait to share with all of you but I have to keep it under wraps until I know for sure. In the meantime I smile to myself. I have a purpose in this disease. To raise awareness and help find a cure. I may not be able to give Jacob back his food but I can help move the process along.

He is now off all animal proteins. He is a vegan and then some. To supplement he has to drink the nasty amino acid formula and if he doesn't and NG tube will be ordered. His next scope is August 9th. Hoping his counts are 0 or least down. If not then he will have to go completely elemental and the NG tube is a reality.

Lili is doing okay. I'm still trying to get her into the motility clinic in San Francisco. So frustrating.

But I've got my smiles to myself and it feels good. I have a place to focus this energy that I have and hopefully contribute to a cure.

Friday, June 10, 2011

Ups and Downs

Life is ever changing in our household it seems. Lili's diagnosis of Gastroparesis leaves me with yet another medical issue to learn about. Unfortunately, I haven't dedicated the time and attention to Lili's issues like I have to Jacob's. Not that I don't worry about her, I worry about her every day. But how much worry can you expend in 24 hours? Right now Lili's symptoms are minimal. She is eating, a little. Her stomach hurts and she is nauseated. She is on medication which seems to help a little. I took her off her ADD medication because it suppresses her already limited appetite. The drawback is that she has to work extra hard in school to focus. But school is out for the summer so I have 2 months to figure this out. I've put in a request for her to be seen at the motility clinic at California Pacific Medical Center. So far no word. And so, for now, her GP is in my mind and I ask her how she is but it's not on my radar.

Jacob hasn't been well and as always, his issues seems to take up much of my time and energy. I had surgery 2 weeks ago which left me at the mercy of my mom and husband. Jacob's stomach pain grew to unbearable levels. Was it the buffalo hot dogs? Maybe the strawberries? Even though the allergy testing came back negative, could it be potatoes or corn? The decision was made today to eliminate ALL food from his diet and put him on an elemental formula. The purpose of the drink, to keep him alive while we reset his system. Yes, exactly, we have to reset his system. Start from the beginning. No food. Only the basic nutrients that his body requires to maintain vital life functions. We wait until his eosinophil count is 0 and then we reboot. One at a time we add back a food. Hopefully, his body accepts each food as it comes. In this way, we find the offending foods, instead of pointing fingers in the dark. The drawback, because there always is one, the elemental formula is horrible. No child, no adult, would willingly drink it. So in most cases a NG tube is needed to keep him/her alive, to make sure they are getting enough nutrition. And the possibility, no reality, that Jacob will need to have an NG tube is terrifying.

In 2 weeks we are heading out to Maui. I had made extraordinary efforts to make sure our hotel would meet Jacob's dietary restrictions. They were more than accommodating. But now we only need to worry about getting his powdered formula past TSA. I'm looking forward to the trip though. A chance to sit and watch the kids be kids. To play on the beach and swim in the pool. To swim with the turtles and learn about their pacific island cousins, the native people of Hawaii. Did I mention we are from Fiji? I can't wait to see them tan to a beautiful brown with that white little butt, while their dad burns to a crisp lobster red. My sister-in-law and I have hired a professional photographer to take family pictures as a thank you to my parents for all they do. I'm looking forward to seeing their beautiful faces captured in time.

Life changes direction, without notice, without permission. I'm learning to adjust. I'm learning that change is no longer something I can control. I can only control how we accept the changes and how we accept those changes into our lives. Do we fight it, hate it, resent it or do we embrace it, find the good in it, and find a place for it? I think we are learning. It's a hard lesson but one that will stay with us a lifetime.

Wednesday, June 1, 2011

My First Video

I had surgery a few days ago. So while sitting on my parent's couch, trying to not go stir crazy, I put this video together.

Friday, May 13, 2011

It was that simple! And a day in the hollow.

Some progress has been made! After a very week of phone calls, voice mails and emails I found a way to get help for Jacob and his tummy pain. His GI doctor in Cincinnati called me yesterday morning. After telling him my frustrations of trying to get some kind of pain management for both kids and the medication to help Jacob, he suggested calling the pediatrician. Now there's a thought! I've gotten so used to hauling them from one specialist to another that I didn't even think that our regular pediatrician could possibly hold the key. The GI doctor suggested giving the pediatrician his email and number and he would gladly coordinate with her on how best to manage Jacob's illness. I immediately called Dr. K's office and set up an appointment for that afternoon.

The appointment was scheduled for 4:30. So after a long day at school, we drove up to Los Gatos and met with the pediatrician. She walked in with a huge file, Jacob's file. The first words out of her mouth were, "So looks like you all were busy in Cincinnati and now you need some medication for Jacob". I was stunned. The huge file was every report that Cincinnati generated for both Jacob and Lili and in it the recommendations for the pain medications. I went over my week of frustration with her after which she said she would gladly give us the scrip for Amitriptyline. Amitriptyline is an anti-depressant but it is also used for functional abdominal pain. She asked if we were working with a psychologist and asked if we had a psychiatrist for Jacob as well. For a while, Jacob was seeking a psychiatrist for his anxiety and was on a drug called Strattera. We hadn't been back to see him, however, since Jacob stopped taking the medication because of the pain it caused to his throat when he swallowed it. She said she would contact the psychiatrist to make sure the dosing and titrations are correct and would work with him to make sure Jacob received the full benefit of the medication. Meanwhile, Jacob was busy under a table showing the doctor his true colors complete with accusations of "you hate me" and "no one loves me". Dr. K looked at me and said, this may help with some of the other things as well. Oh, please I hope so. Finally, she suggested sending all the pain management reports to the psychiatrist as well. She said he may be able to help us faster and more effectively than Stanford. I tend to agree.

Lesson to be learned from this - Sometimes the help you need is in a quiet corner where there are no grand accolades or high praise and not in the big names with the big reputations.

Today was Jacob's field trip to Happy Hollow. I was a little worried about the food situation but managed to come up with some things he could eat that didn't require me cooking or heating up. He didn't eat much though.He played hard and at the end of the day it took a toll. He's exhausted and I have a feeling he'll be in my bed shortly with more than a few complaints. But for a few hours today he was a normal kid, doing normal things.

Wednesday, May 11, 2011

Learning to Navigate

Coming home from Cincinnati wasn't an easy adjustment for any of us. Back home with new diagnosis, new diets, new medications, and new help to seek out has been a little more than overwhelming. We almost immediately put Jacob on his 12 food elimination diet. We started out fairly strong. We bought him buffalo and lamb. I called Whole Foods and tried ordering a rice yogurt and a mac n'cheese that really isn't mac n'cheese that Jacob could eat. But as he began rejecting various foods and trying to order in special products for him at Whole Foods became almost worse than battling doctors, the new diet is taking it's toll. He's frustrated, tired, in pain and hates this diet. He's lashing out and our evenings have turned into epic battles. I've been trying to get him into the pain clinic at Stanford Children's calling doctor after doctor. Today, finally, a doctor in Cincinnati is going to put in the referral and once in it can take 2 months before he is seen. So for 2 more months, he is going to live with constant pain and flare ups. And we will live with a very grumpy Jacob.

On the plus side, the psychologists at Cincinnati sent a report to Jacob's psychologist here at home. Good timing too since we ended up having an emergency family session on Tuesday, we couldn't take it anymore. The report gave his psychologist suggestions and she was then able to help us out. Hopefully as the weeks go on we can all learn to manage his pain. This disease most definitely has a psychological impact on these kids.

Lili's diagnosis was verified by Cincinnati. Most simply put, the nerve in her stomach which signals her stomach to empty into her intestines is damaged. There is no repairing it. As a consequence she is nauseated and barely eats because her stomach always feels full. She's on erythropycin, which makes her stomach cramp and move the food along, which has helped some. They have prescribed zophran for her on days when the nausea is particularly bad, it's often used for chemo patients. There's not much more they can do. If she starts to loose weight or fails to gain weight then a feeding tube is the next step.

She too, like her brother, needs to go to the pain clinic at Stanford to learn how to manage her illness. But again, getting her in could take months. So in the meantime, we just deal.

I've found a yoga teacher who is going to come in and do yoga with both kids. The hope is they will learn to manage their pain through yoga. I should take them both in for acupuncture as well, but the cost is a factor. Especially when you want them to keep doing the things they love that cost extra.

Navigating chronic illness is a practice in diligence, patience and hope and a practice you can't give up on even on the bad days. Because if you do, the kids will to. And if they give up, what future will they have?

Friday, April 29, 2011

Cincinnati - Day 6





Our final day here in Cincy. I do believe this was the hardest day for me. Last night we took off Jacob's patches and were hopeful at what we saw. A number of the patches looked positive to our untrained eyes. We met with the allergist this morning. After looking at his back he said that what we saw as maybe being positive is really an ambiguous result. However, 3 years ago when Lili had the same testing and the same "positive" result to chicken and turkey, we removed them from her diet. All her symptoms cleared. Since we had good results in her case, the allergist agreed that pulling the foods that appear to be ambiguous from Jacob's diet along with the top 6 would be a direction we could go in. So here is the final list of what Jacob can no longer eat:

wheat
dairy
eggs
soy
nuts
seafood
peas
squash
chicken
turkey
ham
beef

In 3 months we come back and scope. If the disease goes into "remission" then we add one food back at a time.

The dietitian came in next. He was very helpful with suggestions on what we can substitute. He also said that depending on how much protein we are able to get into Jacob, we may have to supplement with elemental formula. I truly appreciated his advice and wished I had had this help when we first put Jacob on his elimination diet. But all the while I kept thinking about how am I going to feed this kid. No more hot dogs which was always our fall back. I do believe the first food we will trial is beef so he can have his beloved hot dogs back. Then I had the horrible thought of how is my mom's dahl, which she makes for Jacob, classified? Is it considered a pea? It's a lentil. Sensing that I was on the brink, the dietitian said he would fight to keep legumes in Jacob's diet. That would mean approval from the allergist. So off he went to discuss the matter and came back with a thumbs up. Oh thank you! Because besides hot dogs, our other fall back is mom's dahl. Phew.

I spent the rest of the day thinking about this whole situation and about how horrible this disease is. We went out to dinner and Jacob couldn't eat, his stomach was hurting.

This has been a long week for both kids and has taken it's toll. Jacob's behavior in the past few days has gone to almost intolerable. But he's in pain, tired, and just as frustrated as we are. At least that's what I keep reminding myself of. He often reminded us that this was the worst trip ever. Unfortunately, he's too young to really understand how all this poking is to his benefit in the end.

Tomorrow we go home and we are all excited for that. We will visit Cincinnati Children's Hospital in 12 weeks.

Thursday, April 28, 2011

cincinnati - Day 5

The day started early. I think the kids were still asleep when we got to the hospital bright and early at 7:30am. We ate a quick breakfast in the cafeteria and then headed up to C2 for our meeting with our new GI doctor.

Lili's MRI came back normal so we now are waiting for the results of her gastric emptying study that we did this afternoon.

Jacob, on the other hand, is a disaster. The disease is active. His eosinophil count is over 100. When he was diagnosed it was at 50. The decision was made to stop the steroid and put him on an elimination diet. In 12 weeks, we fly back for another scope. If it's clear then we will add one food back at a time, with a scope after each trial. The goal is add as many foods back into his diet as possible without aggravating the EoE.

We then met with the pain team here at Cincy. They said that EoE and abdominal pain run hand in hand. They want to try one of 2 pharmaceuticals to see if we can manage his pain. They are going to find a pain management doctor back home that we can work with that will also work with them.

Both Gary and I feel like we finally have a definitive plan. The doctors and staff here are incredible. It's been a long week for both Jacob and Lili but in the long run I think it was worth the time and expense. And I think they both realize it.

Tomorrow is our last day, Jacob will have his patch tests read and we will meet with the dietitian to discuss how to go about the elimination diet. It's been a long and emotional week but the decision to come here was a good one.

Wednesday, April 27, 2011

Cincinnati - Day 3 & 4

What an exhausting week and it's not over. Yesterday was a hard day for all of us. We started at 8:30am with Lili. She had an MRI enterography done. This test requires an IV and Lili was hysterical. So much so I thought she was going to have a psychotic break. But the nurses were incredible and we got through it. While Lili and I were in radiology Gary took Jacob up to allergy for his appointment. However, Jacob's appointment was pushed back so I got to him just in time to hold him down while they skin pricked him 75 times. All negative. So on went the patches. The patches come off Thursday and will be read on Friday. So far the patches are staying on so hopefully we might actually get some results. After the trauma of the day we left and had lunch at a local restaurant, The Rusty Bucket. Then we hit Target to buy the kids "rewards". Physically and emotionally exhausted, we went back to the hotel where we all just relaxed.

Today, thankfully, did not involve any testing. We were back at the hospital for an educational lecture on EoE with 2 other families. We learned about the disease, how it is diagnosed and how CCED manages this disease. I am so impressed with how the hospital works as a team to manage each case individually with the goal of helping these kids feel better. Finally a method to the madness. We then got to see parts of the research lab.

After the tour we decided to have some fun and took the kids to the Newport Aquarium in Kentucky. The kids loved it and it was nice to see them have a little fun. Tomorrow is another long day at the hospital but we will get results from Jacob's biopsies and we will start talking about how to manage his illness.

I'm so proud of both kids. They are stronger than I give them credit for sometimes.

Monday, April 25, 2011

Cincinnati - Day 2

We had a long day today. We were up early and at the hospital at 8am. Jacob has a DEXA scan first. It looks at bone density. Since he takes a steroid for the EoE and they don't know what the long term effect are yet, they are collecting data. He's within range but they think he may have an extra vertebrae. Then we met with his new doctor. We went over both Jacob and Lili's histories and talked about what is going on now. Based on Lili's symptoms, he has ordered a MRI enterography and he is repeating the delayed gastric emptying study.

Next stop was same day surgery for Jacob's endoscopy/colonoscopy. It looks like the furrows in his esophagus is back which means the disease is active again. We'll know more when the biopsies come back.

Both kids are tired but Jacob is glad to be eating again. Tomorrow is another early day beginning with Lili's MRI.


Sunday, April 24, 2011

Cincinnati - Day 1

Well, we made it. Our flight from Dallas to Cincinnati was cancelled due to weather. So we milled around the airport for 4 hours until the next flight. We got into Cincinnati at about 10pm and to our hotel at about 10:30pm. Now the hotel...I don't even know what to say about this situation. It's a converted apartment building which is nice because we have a kitchen and a family room. The kids share a room and Gary and I have our own room. However, decor, flooring, kitchen, carpet, bathroom, the whole thing needs a serious upgrade. I don't think the owners have realized that we are no longer living in the days of WKRP in Cincinnati. Oh and the gym, good grief.

We woke up late due to our still being on California time. We drove to the local Whole Foods, thankfully there was one nearby, and did some shopping. Jacob is on a clear liquid diet today in preparation for his endoscopy/colonoscopy tomorrow. We've had to give him magnesium something or other which produced not so pleasant results. Tonight he gets 3 enemas and a 4th tomorrow morning. His stomach hurts and he's hungry. So far I've bribed him with a new app on my phone, Pocket Fish. I'm sure there will be more to come.

Tomorrow we finally see the inside of Cincinnati Children's Hospital.

Wednesday, April 20, 2011

How are you?

How are you doing? I'm not sure how to answer that question anymore. What do people really want to hear, the polite obligatory answer or the truth? The polite answer is "I'm fine" said with a smile allowing the other person to continue on with their day without upset or worry. The truth, at any moment I feel like I'm going to loose hold of what sanity I have left. The truth, I never expected that being a mom would be easy. What with the influences of drugs, alcohol, sex, and who knows what else, kids are susceptible to the clutches of so many dangers. But I never thought I would have 2 kids with special needs and chronic health issues. The truth, most days I question everything we are doing. Is switching doctors the right choice. Is subjecting them to another medical procedure the right choice. Is flying across the country to see a whole new set of doctors the right choice. The truth, I don't know how much longer I can do this. I know I have to, I have no choice. The truth, I may say I'm fine but I'm not.

We leave for Cincinnati Children's Hospital on Saturday. Jacob has been somewhat stable. Since we can't figure out what the trigger foods are we've been letting him eat. But he's having tummy pain and leg pain. He's beside me right now in bed because his stomach is hurting. Lili's tummy is also causing her trouble. After spending 4 hours at Stanford's nuclear medicine department yesterday, we have learned that she has delayed gastric emptying and will start an antibiotic tomorrow to help get her stomach moving. The doctors in Cincinnati have agreed to see her so we will see what they suggest.

You see the commercials of children who are sick and have to fly to hospitals for special care. You watch and are heartbroken that such a young person has to endure so much. And you wonder at the strength that their parents must have to keep going. Never did I think I would become one of those parents with one of those kids. Both Lili and Jacob, they keep going because they are kids. They want to play and go to school and hang out with their friends. And if that means putting their pain aside so they can participate in their lives, they will. As for my strength. I'm learning that what appears to others as strength is really just a disguise. The disguise goes on when you have to take them to an appointment and you know they are going to be poked and prodded. The strength stays on when they are curled up beside you in pain and crying that it isn't fair. The strength lasts long enough while you explain to your own parents what is happening to their grandchildren and while you listen to them express their concern and you see the worry, almost panic, in their eyes. And in the still, when you're alone with your thoughts about the day and the future ahead, that disguise is gone. What is left is unrecognizable but all too familiar to my husband. An exhausted, shattered mess is what is left for him to piece back together. And as the hours of the night pass, a new disguise of strength is built up and put on and the next day begins.

I plan on blogging about our week long experience in Cincinnati so I will keep you all posted. We hope to find some help, answers and direction in the week we are there.

Friday, March 25, 2011

Thursday, March 24, 2011

Revelations

Jacob is now on the full regimen. Prevacid and Busdesonide. His throat is feeling much better however he is still having the tummy pain. Tonight he won't eat because of it. His colon is clearing so it's still a mystery. Our trip to Cincinnati is coming up so I am hoping the doctors their may have some insight into the problem

Meanwhile, Lili still has the "pukey" feeling . The Prevacid seems to be helping with the reflux but she feels nauseated all the time.

I requested her GI records from her the last time she was "sick" 3 years ago. At that time we were told she had a few allergy cells in her throat and to see the allergist. The patch testing revealed that she was allergic to chicken and turkey. We took her off and she's been fine for 3 years. While going through her records I found the pathology report from the biopsies of the endoscopy she had. Her eosinophil count was 10! Suggesting eosinophilic esophagitis. It's written right there in black and white but we were never told. Now we know what is wrong. She is having a flare up. Either the little amounts of chicken and turkey we have reintroduced into her diet is causing the EoE or it's a new allergy. She has an endoscopy on Wednesday. Here's hoping for a high eosinophil count. Sad but true. But then we would have a definitive answer to what I already know. I now have 2 kids with EoE.

Thursday, March 3, 2011

Adding Fuel to the Fire



Over the weekend we took the kids to Tahoe. Well, Truckee actually, but they don't know the difference. Our first day there it was snowing but the kids refused to let that stop them. They were out sledding down a hill. Day 2 proved to be better. We made massive snow forts and then had a snowball fight. That night I ordered in pizza for the girls. Poor Jacob was so upset that he couldn't have the pizza. That night Lili started complaining of a tummy ache. No big deal. Kids have tummy aches all the time. At least that's what I told myself so that I didn't send myself into a cascade of various diagnosis. Day 3 it was time to go home. But first we stopped in at our favorite tubing spot and let the kids have it. After 2 hours we piled back into the car and drove home.

Unfortunately, Lili's tummy ache didn't go away. And that night Jacob came in our room to say that his throat was burning. Monday morning I took Jacob in. The theory, his EoE is back. So he's back on the Prevacid. The steroid is next. Something in his diet is still causing the EoE. Two days later Lili was still having tummy aches, hadn't gone to school and now she was feeling "pukey". Took her into the pediatrician and was given a small glimpse of hope that the symptoms were due to strep. My hope was crushed when the test came back negative. She is having acid reflux. When she was 7 she suffered from acid reflux and after too many tests to count we found out that she is allergic to chicken and turkey. But now the reflux is back. Why?

I can't seem to get her into a doctor for 2 weeks. Meanwhile, she's lying in my dad's office on a chair watching cartoons because she doesn't feel well enough to go to school.

We had a great weekend in the snow. It was happiness watching the kids play and laugh and enjoy life for a brief moment. Now we are back to appointments, questions and uncertainty... times two.

Monday, February 14, 2011

More Tests, Good News and More Questions

Crazy this life of mine has turned out to be. Jacob's lower belly pain seems to be getting worse. He was sick with strep (thank you fellow 1st graders) and while he had the fever his pain intensified. At one point we didn't know if we should take him to the ER or the doctor. Scary. A few days before getting sick, he had gone in for his 2nd endoscopy. The results showed that his eosinophil count was 0! Good news. But there was still no explanation to the belly pain. We took him back to the doctor, who then said that due to his anxiety maybe this is all psychosomatic. Really? I've got a kid with a fever who is screaming in pain and this is all in his head! And then she wanted to prescribe him an antidepressant. I was done.

I went to Stanford and got him an appointment with a nurse practitioner. We already had an appointment with a doctor for the following week but I couldn't wait that long. To my surprise the nurse practitioner was very helpful. She sat with us for 2 hours. Went over everything. Listened to what I had to say. In the end she said, let's do an xray. I had suggested this to the former doctor who told me that since his labs were all negative she wouldn't learn anything new by doing an xray. Well, the xray showed that his large intestine was completely backed up with stool. Major constipation. All in his head?

We did a colon cleanse for 2 days, that was fun. It eased his pain a little but not completely. I took him in to see his new doctor at this point. He told me that the steroid that he is on can cause pancreatitis. He also listed 5 other things it could be including IBS. So he ordered an ultrasound. Told me to give Jacob a pro biotic and miralax everyday, and stop the steroid. If the pain persists then we do another xray. (Since we've stopped the steroid we hope the EoE remains in remission.) And so that's what we did. Jacob didn't "go" for 4 days. Finally today, a miracle, he pooped. Never would I have thought that the contents of a toilet would make me so happy. Again his pain has eased but hasn't gone away completely. He's finally back in school and our lives are somewhat normal again. The next few weeks will hopefully tell us more.

Wednesday, January 26, 2011

Impact Unknown


Yesterday was Jacob's 2nd endoscopy. The doctor says his esophagus looks good, so hopefully we can back off his steroid treatment. We will know more tomorrow once the biopsies come back. And hopefully we will know more about his mysterious belly pain.

While "surfing" the web, I saw an article about SJSU starting a PhD program in nursing. Every time I see something about nursing or someone asks me that question, "so how is school?" the pit in my stomach comes back. That feeling of regret. A little over a year ago, I decided to go back to school no matter the consequences. I registered for classes and informed my bosses, aka my parents, that I was returning to school. I was so nervous and so excited.

My first semester was an adjustment for the entire family. My husband had to pick up more of the slack and the kids didn't have their mom at their beckon call. But it was so fun. My second semester was much the same. I managed to get into the last class I needed, a task that is almost impossible, to apply to the nursing program. And for the first time in my life I had a 4.0!

Then summer came, and everything fell apart. Jacob's mental health took a nosedive. After much agonizing I dropped my classes for the Fall semester and put my dream of nursing school on hold indefinitely. As it turns out, all my energy right now is working on getting him better both mentally and physically. Could I have handled the class load that I would be carrying had I not dropped? I don't know, I'll never know.

I hope to return to school one day. I love, love, love school. I'm a nerd through and through. School is my sanctuary and I feel nursing is my calling. But for the time being I devote myself to nursing my kids in the hopes that they will realize their potential in life.

Friday, January 21, 2011

Mommy Meltdowns and other complications

The past 2 weeks have been a roller coaster of emotion. I've gone from frustrated to angry to down right pathetic. Jacob's belly pain isn't easing up. He has another endoscopy scheduled for Tuesday. More biopsies, blood tests and urine tests are going to be done. The thought is that he has IBD in addition to the EE. If nothing shows up on Tuesday then the doctor says she will do a bowel study, whatever that means. I haven't had the energy to look it up. I'm just holding on to the hope that maybe, just maybe the endoscopy will answer all our questions. OK, a little idealistic I know.

Meanwhile, we took Jacob in for an evaluation with a psychiatrist. His emotional ups and downs had us worried. He is now diagnosed with OCD, ADD and is high functioning Asperger's. What did that tell us? His reaction to his constant pain is only exacerbated by his quirky little self. And how do I deal with this? I haven't got a clue. No one prepares you for the possibility that your kid could not only have special needs but could also suffer from chronic pain. To understand what that is like to deal with on a daily basis is beyond comprehension.

One success we have had through this is finding a suitable substitute for macaroni and cheese for Jacob. I finally used my limited cooking skills and got to work in the kitchen. Here is what I came up with. Enjoy!

Gluten and Dairy Free Macaroni and Cheese
Ingredients:Add Image

1 box quinoa pasta (we like the shell shape)
1/2 stick Earth Balance
2 tablespoons gluten free flour
1 cup rice milk
Daiya Cheese (about 1 cup)

Cook pasta per directions. Drain and set aside. Meanwhile, on medium high heat, melt Earth Balance in a saucepan. Add flour and whisk for 1 minute. Slowly add rice milk, continually whisking until thickened. Take off heat. Add desired amount of Daiya cheese and stir until melted. It may remain a bit lumpy. Pour sauce over pasta and mix together.


Monday, January 10, 2011

ADHD

Lots has been going on with Jacob but I came across this study regarding ADHD and thought I would share. Lili, our 10 year, has ADHD primarily inattentive. ADHD is one of those labels that I think is widely misunderstood. I know I didn't understand the impact it can have until we we realized that the problem Lili was having was that she couldn't focus. With the help of her meds, she is doing so much better and is no longer fighting her mind to pay attention.

The Wellcome Trust, who funded this study, was established by Gary's great uncle, Sir Henry Wellcome. The pharmaceutical company GlaxoSmithKline was also started by his his uncle, Sir Wellcome, and is researching EE.

ADHD children 'have faulty switch'

Children with hyperactivity disorder have a faulty "off-switch" when it comes to their minds wandering, scientists have found.

Brain scans of youngsters with attention-deficit/hyperactivity disorder (ADHD) have shown for the first time why they may have difficulty concentrating.

They suggest that children with ADHD require either much greater incentives or medication (methylphenidate, often known as Ritalin) to focus on a task compared to children without the condition.

If the incentive is low, then those with ADHD fail to "switch off" brain regions involved in mind-wandering.

But when there are strong incentives, or when youngsters are taking their medication, their brain activity is the same as for a child without ADHD, according to University of Nottingham researchers.

The study, published in the Journal of Child Psychology and Psychiatry, and funded by the Wellcome Trust, involved 18 children with ADHD aged nine to 15. Their brains were compared with those of 18 similar children without ADHD.

All the children played a computer game that involved hitting green aliens as quickly as possible while avoiding black ones. The reward for avoiding black aliens was then increased to study the effect of incentives.

Previous studies have shown that children with ADHD have difficulty controlling the part of their brain which gives rise to wandering thoughts or daydreaming. This part of the brain is normally suppressed when people are focussed on a specific task.

The latest research suggests that children with ADHD - up to 7% of those at school - have difficulty suppressing this part of their brain unless they are on medication or incentives are high.

Study co-author Dr Martin Batty said: "Most people are able to control their 'daydreaming' state and focus on the task at hand. This is not the case with children with ADHD.If a task is not sufficiently interesting, they cannot switch off their background brain activity and they are easily distracted."

The Maupin's

The Maupin's