Merry Christmas!

Merry Christmas! We had a wonderful christmas, Zach is doing really well this week. He met with his new allergist at Duke on Tuesday and that went well. The new plan is back to no foods..which wasn't a stretch since he was only on chicken.. and he added in a 3 month course of swallowed steroids to hopefully heal his esophagus and he can scope clean when he gets to Cincinatti Childrens. At that point we can try moving on with foods, he did say that Zach is probably one of the kids that needs a food trial of one food for several months then a scope to tell if he is allergic. So it looks like a lot more surgeries for us in the future but we will take that for food. So far he is doing better on the steroids, the only major drawback is his attitude. He is acting unlike himself, he is fussy and sometimes mean. Maybe it won't last for long.

What a week..

This past week has been really crazy and hectic. Wedneday Zach fell and hit his tube on something and it was bleeding really bad so he had to go to Baptist ER. It stopped bleeding and they said it was fine so we went home. Well, on Thursday everytime I tried to feed him in his tube he threw up so the Dr was worried he did damage to his tube. They did a contrast xray at Cone and everything was fine but by this time he was running a 103 fever too. He went all day not taking any formula and by 8 pm we called his Dr and he had us meet him at the office. He looked fine, just weak, the only thing he could fine was one ear was red so he gave him a IM injection of antibiotics in his leg. The next morning we had to call him back because he was sick all night and was doing nothing but laying around. So not like him so he got admitted to Cone Friday morning. He was so dehydrated and sick. It actually turned out he had RSV and some type of stomach flu so he had fluids all day and night and all day saturday. We finally got to home late Saturday evening. He is doing better now, still coughing a little but better. Poor Baby :(

Our Appointments coming up

We are planning our trip to Cinncinati Childrens Hospital, they are in the process of getting all the insurance verified and approved. That should be sometime in February, we go for a week long of appts, tests and education seminars. I am looking forward to speaking with a specialist who sees children with disorder every day. I know every child is different in their symptoms, outcomes, etc but at this point any advise is appreciated.
His Ped, Dr Young was also talking with his GI, Dr Hill and and they decided he also needs to go back to Duke for their allergy department. I guess Duke has an awesome allergy department and the cheif of allergy really wants to see Zach's case...(he is pretty unusual). So we go to Duke on December 21, hopefully good news before Christmas!
We are still waiting on bloodwork from the neurology testing but for now, she wants Zach to go see an Orthopedic dr. He is walking funny, turning his feet in. It is his right more than his left and it is causing him to limp and fall and he looks pretty bow-legged. So we are waiting on that appt as well.
It looks like December and the new year will be pretty busy with appts again, maybe this year someone can help him get on the road to being a little better.

I am thankful

I am so thankful for this beautiful little boy. He makes me a better person. I know God gave him to me to make me stronger, and because he knew I would give him more love and acceptance than anyone could. It is my job as his mother to raise awareness and fight for the things that are wrong, to make his life mean something far greater than he could imagine and to try to find cures for these horrible disorders. I am so thankful for his love and his happiness. I couldn't imagine his life if he wasn't as happy as he is. You would never know anything was wrong, he is in pain but tries not to show it. He tries to feel good, he tries to understand. I am so thankful for Zachary and love him more everyday.

Dear Friends, As many of you know, our Zachary, suffers

from a rare autoimmune disease called Eosinophilic Esophagitis ("EE"). Kids
with EE are quite literally allergic to food. The proteins in food cause a
build up in the digestive tract and blood of a white blood cell called an
eosinophil.
Eosinophils are meant to attack parasites, but the body of a child with EE
mistakes food for a parasite. As a result, the build up of eosinophils
cause numerous and very serious health problems, including, failure to grow
and thrive, uncontrollable vomiting, severe stomach and throat pain,
inability to sleep, joint pain, just to name a few. Many kids with EE can only eat
1 or 2 foods and have a feeding tube to survive. CURED is a charity that I
am actively involved with that raises money to find a cure for EE. CURED has
donated over $2 million to research over the past 6 years. CURED has begun
a $1 challenge. We are looking to find 500,000 people to each donate $1 or
more to CURED, since that is something that almost everyone can do in
these hard economic times. If you are interested in donating, please write
Zachary on your donation and mail it to CURED at P.O. Box 32,
Lincolnshire, IL 60069. or go to www.curedfoundation.org and make a donation
via pay pal. Furthermore, if you wish to go even a step further, please forward this email to your family and friends. The more we get the word out there, the more
likely it will be that we will reach our goal. Thanks for your help!!! Happy Holidays!!

The month to be thankful

Well, Zach's update isn't the best this month. He is continuing to lose weight, having pain, and vomiting. He has had a barium test done, lots of bloodwork and several doctor visits over the last few weeks. Good news is he doesn't have any obstructions, which they were worried about with all the vomiting. He is still no foods and we are waiting for him to completely clear up (diarrhea wise) before trying any. The allergist is trying to also figure out the least allergic food for us to try when we do food trials again.

On other news, he did have some bloodwork come back and the results were not that great. The blood test measuring the muscle enzyme CK came back elevated which means some type of muscle myopathy. We have to wait another week or so before knowing exactly what is going on so for now we are anxiously waiting. I think the realization that something else is going on has hit pretty hard for most of us. No matter how much you prepare, it is always a shocker to find out something is wrong with one of your children.

Good note though, it is November and that means Thanksgiving....We still have a lot to be thankful for, so we are counting our blessings.

The end of October

The last few weeks have been very crazy around here. Zach has been vomiting a lot more, he dropped back to 22 lbs and has been in more pain. He went to the GI about 2 weeks ago and they pulled his food again, formula only and on a 24 continuous feed through his pump. He is not allowed to drink any by mouth, except for a bottle at nap and bedtime for comfort. He also has had some more symptoms start, he has starting getting unsteady on his feet, he falls a lot more and has muscle cramps in his legs. And even on formula only again, he still is vomiting. Wednesday he vomited all day and almost had to be put back in the hospital. He is doing better now but still vomits at night.
He went back to the GI on Friday and he is concerned about all the vomiting and it just seems like every week he gets a new symptom instead of getting better. So, he is scheduling a barium study through his g-tube to check for anatomical issues and malrotation. He is also going to see a neurologist to rule out any other "bigger" issues. So hopefully this week will involve some tests and appts to get us somewhere.
On the other note, Today is Halloween and the kids had a blast trick or treating....Zachary was a monster and his big brother, Luke was a robot. Instead of candy they got bags of toys so they still got to enjoy the fun of trick or treating just without candy.

Dear Lord

If you know me, you know that I am not a public religious person. I do believe in God and Jesus but I do so in my own way and have in the past chosen not to participate in churches or other religious functions. I believe that I have been tested on my faith several times in my life and sometimes it is hard for me to trust in a God who has not answered my prayers or prevent my hurt feelings. Since my son has been sick, I am more than ever tested on my faith and have been looking for more reassurance. I feel at this point, I need all the help I can get to make my little boy better. So, even as a person who believes but needs to see, I am asking for prayers...I am praying more than ever now, and I pray that I am not let down agian.

I am praying now, to a God who has in the past let me down.....Dear Lord, I pray that you heal my son, I pray that you make him well, I pray that he will be able to eat food, normal food...not food through a tube in his stomach. I pray that you take away the pain that he has, all the stomach cramps, the vomiting, the diarrhea. I pray that he can be normal, that he can go to school and enjoy life. I cannot imagine my life without my sweet baby Zach and yes, he was a miracle that I had not asked for and was not expecting but now I am so overwhelmed in the joy of such a happy free spirited boy. I pray that give him a long life and let him be happy and healthy. In your son's name I pray. Amen.

Our GI appt today

We saw Dr Glock today, not our normal GI doctor but he has seen Zach before when he was hospitalized so we know him. He instructed us that he thinks that Zach' s stomach needs to heal yet again, and we shouldn't push anymore foods. He also took bloodwork today to check his CBC and electrolytes. His plan for the next month is:
1. Pull all food (chicken was his only food)
2. Strictly formula only again
3. Continuous daily feed of 40 ml/hour on his pump
4. 99% of feeds should be through his tube, so no sippy cups of water and bottles are for comfort not nutrition, so don't push them on him
5. At recheck appt....possibly gastric motility testing, barium studies, and changing his G tube to a GJ tube

So overall it was pretty overwhelming. We are just taking steps backwards and not making any progress to getting him to eat food. I feel like he is not getting better and nobody can tell me when or how he is going to get better. His pediatrician told me today he is a double enigma.
We go back on December 3rd so until then we are yet again just waiting..............

Oh, I need sleep

Poor baby has been up crying and vomiting for the past four nights. He is now on Zofran and a medicine for stomach cramping and we are waiting on that to work. He also had to go to a lower rate on his pump, so he is now getting 1 ounce/hour instead of 2 ounces/hour so he has to be hooked up twice as long which is 20 hours. He is taking that better than expected, he is wearing a mini backpack with his pump and bag in it and it is not slowing him down any. Last night, on the zofran he didn't vomit which is good but he still woke up many, many times crying and shaking.
Unfortunantly, we are not sure why his tummy is hurting. We are guessing it is from the venison food trial 2 weeks ago and it just messed his tummy us really bad. Hopefully, he will start to feel better really soon.

My baby

Today was Zach's weigh in for the week...last week he lost a half a pound, and this week he lost another 4 oz so that is almost a pound in 2 weeks. I am so frustrated with all of this, my baby can't keep weight on, he can't eat food, he can't be a normal 19 month old baby. It feels like we are just fighting a neverending battle and we keep losing. We are supposed to keep doing food trials but every food we try he gets diarrhea for a week and loses the little bit of weight we just got him to gain.
It is so difficult fighting this because on the outside he looks and acts normal. He is happy playing and running but his problems are on the inside and sometimes it's hard to explain that he is really sick when he doesn't look sick. But believe me, when you have to change dirty diapers with diarrhea all day and hold down your baby when you clean him because his bottom is so raw  and stay up all night listening to him screaming because his stomach hurts you realize he is sick and food is making him sick.
I try to imagine a life with no food, our daily life is so revolved around food. I try to imagine his birthday's and holidays and sending him to school and it breaks my heart that he can't have normalcy in any of those events. With Halloween coming up, we have been trying to plan how we can let both boys dress up and go trick or treating but have to convince Zach that he is cannot eat anything he gets.
I try not to complain about my sons' illness because it is not worse, I could not imagine having to go through a child with cancer or worse but lately it just feels like my son is not getting better and nobody understands how hard his life is or what it would be like to live in his shoes.

The past week

This past weekend, we went to Topsail Island. It is so pretty and calm there, so far away from the reality of the crazy life here. The kids had a blast, they loved playing in the sand and watching the waves. Unfornately, we all ended up sick with colds but everyone is getting better. I loved our time away with our boys, it's rare to get family time these days.

Zach had his 2 week recheck with his surgeon today at Brenners'. His tube looks great and he is doing so well with it. He doesn't even act like it is there anymore and now since it's been 2 weeks he can finally have a bath again. He doesn't have to go back for 4 months, that's when he teaches me how to change his tube..kinda scary, but I will do anything for him.

Also, on the food trials...we tried egg and he failed, then we tried chicken and so far the chicken has been going good...we call it a pass and then we tried venison and he failed, then we tried asparagus and he will not eat it at all so that sucks since our food choices are so limited to begin with. Right now we are at a stand still, he was eating plain natural popcorn for months now but for the last week he has been really sick and not digesting it so he is off that now too.

Matthew 6:25-33

"Do not be worried about the food and drink you need in order to stay alive... After all, isn't life worth more than food?"

What is CSID?

Sucrase is an enzyme produced in the brush border lining of the small intestine and is responsible for the metabolism of sucrose, a disaccharide commonly known as table sugar, into two component monosaccharides, glucose and fructose, which are then absorbed into the circulation

In the absence of the sucrase enzyme, sucrose cannot be absorbed and passes unchanged into the large intestine

Currently, treatment of CSID consists of lifelong adherence to a sucrose-free diet. As expected, compliance is difficult, especially for a child. Data suggest that even after diagnosis and dietary treatment, major gastrointestinal symptoms persist, and there appears to be a high frequency of decreased weight for height and age in these patients

What is EE?

Eosinophilic (ee oh sin oh fill ick) disorders occur when the body reacts to trigger(s) by creating too many white blood cells (eosinophils) which hang out in inappropriate places creating trouble. White blood cells target germs and other invaders; in eos kids, they recognize normally harmless things as *enemies*.


This has been referred to as "The Mother of All Food Allergies". Kids with eos disorders may or may not also have IgE allergies, but the reality is that their bodies react inappropriately to triggers, which frequently include food(s).
Common symptoms include:


Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
Dysphagia (difficulty swallowing)
Food impactions (food gets stuck in the esophagus)
Nausea and Vomiting
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
Abdominal or chest pain
Feeding refusal/intolerance or poor appetite
Difficulty sleeping

EE is a relatively uncommon disorder that doctors may not encounter often. The diagnosis of EE is often delayed, sometimes for years, because of lack of awareness of these disorders.

APFED

G Tube surgery

Zach had surgery Thursday, he did great. The surgery took about 2 hours which was forever in my book. He woke up fine, no screaming or kicking. He got a little grumpy in recovery right before we went to his room so he got some morphine and was happy. He was pretty sleepy all day and did really well with the pain. He could have the morphine as often as needed but he only needed it maybe 5 times all day and night. Today, Friday he is on tylenol and almost back to normal. His tummy looks good, no bleeding around the button and so far he is not messing with it. The surgeon put in a mic key button, which looks like a beach ball valve.
Hopefully we get to go home tomorrow, he is tolerating his feeds good so as long as he does good all day we can leave in the morning. I know he will be happy, he doesn't like not being able to run around.

Meeting with surgeon

So this week has been very difficult. Zach has had his NG tube for aobut 7 weeks now and for the first 5 weeks did so well on it, he never tried to mess with it. As of today we have had to replace it 4 times in the past 10 days. He figured out how to take it out, so at night he pulls it out and I get to wake up to it hanging from his face and formula all over his bed.
We spoke to Dr Young a couple of times this week and he thinks it is time to go ahead with getting a G tube. He set up for us to meet with Pediatric Surgeon, Dr. Petty at Baptist on Tuesday at 11am to discuss when to schedule his surgery. We know it will be easier and better on him but it is still scary because this is major surgery. Dr Young feels that since his disorder is complex and we can't find any food yet he can eat (he failed eggs) that the tube feedings will be long term, how long term we don't yet but probably at least a year.
Thats all I know for now, hopefully we can keep the NG tube in over the weekend and get some answers and dates next week.

Foods so far my baby boy is Allergic to

After patch testing today we have expanded our list to:

Dairy-Peanuts-Tree nuts
Beef-Cucumbers-Strawberries
Turkey-Wheat-Soy
Potatoes-Cottonseed-Carrot

That's all for now..we hope
We are trialing egg..only food for 10 days and if no symptoms then we can try rice. Cross your fingers!

Still no foods

So, Zach went back to the GI doc on Friday and not much news from there. He wants him to have the hydrogen breath test, just for a definitive answer, he believes Zach's symptoms (he agrees that when Zach starts screaming after eating half an orange (on accident) that is the sucrose causing the pain) sound like CSID and his biopsies are suggestive of it. His reason for the test is so insurance will pay for the enzyme replacement "sucraid" which is apparently around $8000 a month. He would still have to be on a low sucrose diet or no sucrose depending on how he reacts with the medicine. At least this time when he has the test, his NG tube is already there so all they have to do is put the sucrose down his tube and it will be a lot easier on everyone.
Today Zach's nurse came out and did his check up a day early so she could replace his NG tube, after 5 weeks it was looking pretty nasty. All I can say is I definitely can not change it on my own if it ever came out. The tube does not bother me but it takes 3 people to hold him down and 1 person to insert it so it was quite a challange today. We also wanted to put the tube in the other nostril this time but it wouldn't go in so it has to stay in the same one. His poor skin on his face is so broke out from the tape already and who knows how long he has to have this. As much as I don't want a G tube placed sometimes I think it would be easier, at least that way, there will not be any more questions when people look at him....what happened? what's wrong with his nose? Enough for now...he has allergy testing tomorrow.

18 month checkup

Today was Zach's 18 month checkup with Dr Young. He is now 22 lbs and 31 1/2 inches long, that means he has grown 1 1/2 inches and gained an amazing 2 lbs! Dr Young is so happy with these results, as are we! He is surpassing all milestones with ease, the only exception is with talking but a lot of that could be blamed on having a tube down his throat so right now, no one is too worried with it.
Two weeks ago we had to add in tube feedings during his naptime to keep up with all the calories he is burning and it is paying off according to his weight gain today. The decision to put in a G tube is still up in the air since the tube feeding will probably be a long term thing, the NG tube he has now messes up the skin on his face and can cause some swallowing issues long term.
Tomorrow we go back for a recheck at Brenners and hopefully will get to add 1 food back into Zach's diet, he would love that...it's sad for him to walk around saying "eat eat". We have a long list of questions to ask Dr Hill and hopefully will get some good answers.
We are very happy that Zach is gaining weight finally, it's been 5 long weeks on the no food diet and having the NG tube. We know that this is going to be a long road to go and that the tube feedings will be here for a while but we are making the most of it. We are so thankful that Zach is such a happy baby and nothing has seemed to bother him too bad..he is very strong and he reminds us everyday that we can make it through anything.
We love you, Zachary Carson!

Tube feedings

So, after 5 days at Brenner Children's Hospital Zach, came home with a NG tube. That is a feeding tube from his nose down to his stomach and he can not have any more foods for now. He drinks his bottle of Elecare during the day and then at night we have to hook him up to a pump to have 10 hours of continuous feed. This has definitely been life changing for all of us. Zach misses eating food, he walks around saying "eat eat" which breaks your heart. This is all for the best, that is what keeps us going, his stomach is resting and he is doing really good.

At his first checkup with Dr Young, he was sooo excited to see how good Zach was doing and that he was starting to get some fat on his arms. He is now 22.01 pounds, the Biggest he has ever been! Hopefully he will keep on growing.

He has food patch testing on August 30 at Brenners' to determine more allergic foods. Then he goes for his 18 month checkup with Dr Young on Sept 2nd and finally back to see Dr Hill at Brenners' on Sept 3rd. We will decide about foods at that point. We will have to start seeing a dietician to help with his diet because when we do start adding foods back he can not have any foods with sugar due to his sucrase deficiency and he is allergic to almost everything.

We will catch back up in a month.

In the Hospital

Zach was supposed to have his hydrogen breath test on Friday morning, we got to the hospital at 7 am and he was doing fine. He was supposed to drink a  2 oz bottle of sugar water and then get breath readings every 15 minutes for 3 hours. However, he would not drink the bottle and the nurses tried placing a NG tube 5 times with no sucess so he was sent home. They did notice however since Tuesday when he saw his doctor here, he had lost a pound. He hasn't been eating hardly anything including his bottles of Elecare. So around lunch time he was admitted to Brenner Children's Hospital for observation and testing.
When we got here, he was only 20.8 lbs and on Tuesday he was 22 lbs. He had bloodwork done and we are waiting on those results. They are also counting every calorie he takes in to keep up with him losing weight. Today he was only 20.4 lbs so we are waiting on the on call GI doc to come by and talk to us and develop a plan. I know on Monday he will have his hydrogen breath test by the GI team. He might end up with a G tube for feeding but we are waiting to hear.

Results

The results finally came back from the pancreatic testing and enzymes when Zach had his biopsy. His pancreas is fine but his enzyme testing came back with him being low in sucrase and maltase, which are the two enzymes that break down sugars and starches in the digestive system. So the doctor recommended having a hydrogen breath test done, which will take place on Friday July 23rd at Brenner's. If that comes back positive it will mean Zach has another very rare disorder called CSID or congenital sucrase-isomaltase defiancy. Only 1200 people are accounted for having this disorder. It means he can not process any sugar or starches so his diet will be even more strict.
To top it off he has only gained 1 pound in the past 9 months, which is good that he finally put on that 1 pound of weight but it's only from him drinking his elecare formula and it only happened over the past 2 months. I think he is getting closer to having to have a feeding tube placed because he is not getting enough nutrients to grow. For now, that's all we know, wait on 1 more test and go from there.

Problems keep going

So the first choice of treatment was to start on pulmacort respules mixed with splenda packets ( I know, wierd!). He was on this new treatment for a about a week when he started having more pain, he was waking up screaming all night and not eating well. The doctor from Duke let us know that his secretions from his biopsies came back with a lactose deffiancy so we took out all lactose hoping to ease his pain.
In May we went to see Dr Hill, the head of pediatric gi at Brenner Children's hospital. He seemed to think that Zach was having some malabsorbtin issues with his pancreas so we did some more stool cultures to check for fat and lactaid in his stool. He also checked his thyroid level just to eliminate any hyperthyroid problems. Both tests came back normal and yet Zach was no better. He was still having lots of pain, diarrhea and a new symptom, vomiting almost everday. The doctors put him on prevacid for heartburn and mylanta four times a day.
When he went for his 15 month checkup at Dr. Young we found out he has fallen below the 3rd percentile for his age and height. We also had him allergy tested since EE can be caused by various food allergies. His allergy tests came back with him being allergic to beef, dairy, carrots, strawberries, cucumbers, peanuts, tree nuts, and cottonseed.
At his checkup with Dr Hill on June 7 he decided to redo an endoscopy and biopsies as well as pancreatic testing and secretion testing. He had his procedure on June 15 at Brenner's, I was a lot more prepared this time and was ok with him going under anesethia.
Now, we just wait and see what his biopsies show and what is going on with his pancreas.

The problems begin

In February 2010, he started having diarrhea, 8-12 diapers a day. He went a couple of days with blood in his diapers so Dr. Young did stool cultures to check for blood, parasites, bacteria and viruses. All came back negitive except blood. He also put us on soy milk and bile salts, both did nothing and by now Zach was starting to have some stomach pains.
At his 12 month checkup, his weight hadn't changed since his 9 month appt which was surprising. So he was sent to a Ped GI docter here in Greensboro. Our first visit was not helpful nor did I like the doctor. He put Zach on an anti protazol medicine for 3 days. The next day Zach spiked a fever of 103 which went to 105 the next day and he became dehydarated so he was admitted to the hospital for fluids. He spent 4 days in the hospital. We went to see the GI doctor one more time and he wanted to just repeat stool cultures and call it a day. That was our last visit to him.
By now we are to the end of March and still having 8-12 dirty diapers a day. He was referred to Duke Childrens hospital GI doctors. Our first visit, April 2nd was very nice. The PA who we saw was very nice and ordered bloodwork, stool cultures and gave us some ideas.
A week later, bloodwork came back, he was anemic, had high sed rate, neg for celiac. She thought he was having IBD symptoms so she ordered an upper and lower endoscopy and barium xrays. The barium xrays were all normal and he did very well. He drank the barium from his bottle and slept through most of the test. For his upper and lower endoscopies he had to go under anesethia so no food for 24 hours. That was really hard on him seeing how the prep day was his brother's 3rd birthday party. He was very cranky the morning of the surgery but did pretty good. He was put in his hospital gown and was allowed to take him to the OR and then I began to cry so I left. The procedure took about an hour and he woke up screaming. He did really good though.
When the biopsies came back, she diagnosed him with Eosiniphillic Esophagitis, EE for short.

The beginning

February 27, 2009 was the day our lives changed forever, again. Zachary Carson was born by c-section at 7:40 am. He was 7 lbs and 6 oz and 19 1/4 inches long, he came out fighting and kicking. I went to recovery and anxiously awaited baby Zach to join me, but he seemed to have some trouble. Dr. Young came in a little while later to let me know what was going on, he was so excited his heart was beating really fast and they were afraid he had a hole in his heart so they were keeping him in the nursery til he calmed down. I remember going through recovery and then to my room and what seemed like an eternity before I got to see my baby. It was only about 4 hours but seemed a lot longer. He calmed down and was fine, no heart problems..just a big scare!
We went home 2 days later, and the next morning a huge snow storm came into town and baby Zach got to see his first snow (from inside the house, of course). His brother Luke, 22 months at the time, enjoyed the snow and was enjoying his brother as well. Baby Zach was doing really well, he grew and developed like all normal babies. I nursed him for about 6 months, which was nice but tiring. He would nurse and wake up screaming 2 hours later all night. Dr. Young figured he couldn't tolerate lactose so I stoped breastfeeding and we tried formula, first lactose free then soy then hypoallergenic and finally found one he could tolerate. At around 11 months we switched him to cow milk with no problems, so we thought.