9 months on Apriso

Yesterday we went to Liam's GI doctor for a check up. It has been 9 months since Liam started taking Apriso. Lots of things have changed. We no longer have to break the capsule apart and get him to swallow the medicine in one big gulp with juice. He has learned how to swallow the pills. He has also not had any huge flare ups. He has had the occasional stomach pains followed with a day or two of diarrhea but then he gets back to normal. We are learning that certain foods will cause him great pain. He cannot eat any french fries from restaurants. Its not the potato that is the problem but the oil they fry it in. I often will bring fruit and some veggies with us when we go out to eat. We order him a protein like hamburger without the bun, grilled chicken, ribs, or steak to go along with the food I brought.

He has developed a dry cough. Its going on 4 months, but she said we need to just ride it out. I asked if it could be a side effect from the Apriso. She at first said " no I do not believe its from the medicine". But then later said "well I suppose anything can happen from taking a medicine everyday, but its a low percentage." I wonder if it could be a sign of Acid Reflux, but the benefits out way the cough. It also could just be something new he is dealing with since people with Autoimmune diseases often deal with more than just the initial disease itself. So for now we will ride it out and hope his body fights it.

She was very happy with his weight gain and growth. She said he has finally caught up from all the weight he loss over the years. He has also had a huge growth spurt. This says that he is absorbing nutrients and is becoming healthy. Fingers cross this just continues.

We are going to run a few labs and make sure everything looks good. Our goal is for continual good health and flare up free. If we can maintain he will go in for a scope during the Summer of 2014. This made Mike and I very happy. We have a follow up appointment in 3-4 months as long as he continues to do well on the Apriso. So far this mama is happy that her boy is doing so well.

Chiropractic care and U.C.

I am a huge believer in chiropractic care. Not just for me, but for my whole family. We have the best Chiropractor in the world. She takes such good care of my family. I love that she doesn't hurt us and that she will be honest if we are not out of alignment. A couple of years ago my husbands back was killing him. He went in to see Kristy and she said "buddy you are completely fine, you just need to exercise and get those muscles moving and stronger". His response was "do I at least get 5 minutes from your massager?" Her response was "nope". That to me speaks volumes on if you have a good Chiropractor or not.  I have been to a few before finding Kristy who would adjust me no matter what and did not care if their patients were addicted to adjustments. Kristy is the first one to turn people down. I love her honestly and professionalism.

I got off a bit topic for a moment, now back to the reason for this post. I have been taking Liam to Kristy well before he was diagnosed with U.C. He was colicky and had constipation problems when he was a baby. She was the only one who could give him relief. At first it freaked me out at the thought of anyone twisting my kid up like a pretzel and cracking him. I talked to Kristy in great lengths. She explained everything to me and was so gentle with him. He never cried, but in fact got super giddy after his adjustment. He would have anywhere from an hour to a day and eventually weeks of  relief. Eventually he outgrew his colick and the  problems went away.

When he was diagnosed with UC we asked her is she could help him. She said "I think it's worth a shot, don't you?" So once again we started seeing her and 99 percent of the time, he was all twisted in his lower spine. After an adjustment his diarrhea would not go away, but it definitely would lessen. His tummy aches would get better too.  I am all for doing whatever to make him just feel slightly better even if it's only for a day or two. Recently I found a great article. Its a good read, so feel free to check it out.

http://totalhealthsystems.com/do-you-have-ulcerative-colitis-or-any-other-form-of-inflammatory-bowel-disease-–-we-can-help-dr-rose-minkiewicz-dc-staff-chiropractic-physician-at-total-health-systems-of-macomb-county/

Apriso

So today we are starting a new medicine. Its called Apriso. He is to take two capsules a day. You may be wondering how is a 5 year old going to swallow two capsules like that. Well he isn't. I have to break them open and dump the little granules on a spoon and pour a little amount of juice on the spoon. He then takes the spoonful and chases it with water to prevent biting the granules. The granules need to stay intact because they are slow release and if he chews on them he will ruin the time release thus not allowing the medication to lubricate his colon. Wish us luck I am sure it will take some practice. Maybe one day he will learn how to swallow or they will make a kids version. 

The reason for starting this medication is because Liam has been on Prednisone since September 3rd, 2012. He started on 20 mg, and although we have gotten him down to 10 mg, we just can't seem to wean him off. He is getting wicked headaches from being on it for so long, along with other side effects. After talking with his doctor we agreed to give this a try. Many adults that I have talked to said it worked well for them. They were able to go into remission while on it. Its a medicine that you stay on even if in remission. Like his doctor said "we start this then we need to continue even if all symptoms go away." At this point I feel like its a good choice, because prednisone is so dangerous for little guys to be on. The one thing that worries me about Apriso is there is very little information on how it affects children short term and long term. Adults who take this are already developed and can chance taking it. I just pray this medicine does not affect Liam's growth, weight gain, puberty, eye sight etc. Lets hope it does what its suppose to do and allows us to wean him completely off the prednisone. My goal is January 1st 2013 for Liam to be prednisone free. I think that would be the best gift to start the new year.  I would love to hear from anyone and everyone who has been on this medication. 

Liam's Flexible Sigmoidoscopy

Waiting patiently for the Doctor to come in. 

Liam had been six months in remission and two weeks after starting transitional kindergarten he started to show signs of a flare up. We contacted his specialist Dr. Davies to see what treatment we needed to start. She put him on the usual 20 mg of Prednisone. After two weeks of no change she decided to put him on 10 days of Flagyl to see if we could get his gut to calm down. It ended up working in the sense of he stopped having 10 bouts of diarrhea a day to 2-3 a day. We had an appointment scheduled within a week, so she said keep him on the prednisone and when I see him I will do a Flexible Sigmoidoscopy. I asked her "is there any prep for that procedure?" She said "nope". I asked her if they were going to put him under for that? Her response was "no, kids do really well usually". I tried looking up Sigmoidoscopies and kids online and found very little. I tried to prepare Liam mentally for the procedure he was going to have done. I simply explained that Dr. Davies was going to put a small camera up his bottom and look inside to see if everything was okay. He looked at me with BIG eyes and said "she is putting a camera where?' "I don't think so mama". Honestly I did not know what to expect or how he was going to react, but I kept being very positive with him.

The day of the appointment he was examined by Dr. Davies. She said she wanted to take a peek inside and make sure we were not missing anything. She was chalking this flare up to be an "emotional" flare due to all the changes he had been through. My heart sunk when she told me this. My child was so stressed from going to a new school, having a new teacher (even though he knew her because sissy had Mrs. Nikki) and making friends. This made me feel so bad and that I failed him. No parent wants to be told their child is sick due to stress. We were escorted into the procedure room. She told Liam to remove pants and underwear and to lay on the table. He was not the biggest fan of being as he called it "Naked" with just a sheet over him. It was the first time I had seen my little guy (who was only 4) be self conscious When the Doctor came in, Liam looked at me with complete fear. I told him I was going to hold him and he asked to see the "camera" I gave the okay to the doctor to show him, thinking it would calm him knowing what it looked like. Boy was I wrong. That kid gave me a look of hell no mom and he tried to get off the table. I quickly layed him down and started talking in his ear telling him to breath. The doctor took that cue and started the Sigmoidoscopy. Overall Liam did a great job. He mimicked my breathing and tried to stay still. The worst part was when she took the biopsy's. He cried and said it felt like several shots were being given inside. The whole procedure lasted no more than 10 minutes. How it is performed is he was positioned on his side and she inserted a flexible tube that had a camera on it into his rectum. She did not go very far into the colon. Just enough to see if there was inflammation or ulcers.

When the procedure was finished, Liam immediately jumped in my lap for lots of cuddles then asked to get his clothes back on. Normally when we are done with our visits with Dr. Davies, Liam will either hug her or high five her. This time however he bolted out of the procedure room trying to get out. Dr. Davies said "Liam your going the wrong way and you have not said bye to me." Liam looked at her and put his hand up as if to tell her to stop and not come closer. He said " I want out NOW and you stay there." I had my dad pick him up and told him to take Liam out in the waiting room where Nana and Sissy were. I think it will be a while before he trusts Dr. Davies like he once had. It made me sad, but I think it broke her heart more. The reason I am writing about this topic is because, I had no clue what this procedure was going to be like. I had worked myself up thinking the worse and when it was all said and done it was not as bad seeing him go through it. He was very brave and not as painful as I thought it might be. We were all so proud of him that he pretty much got whatever he wanted that day and he took full advantage.

Hard for people to understand

I was talking to my good friend who is also our pediatrician's nurse. I was saying that it is so hard for people to understand, because looking at Liam you would never know what his body is going through. Most people think he looks normal. What they don't realize is his little body is attacking itself. They normally don't see the episodes of diarrhea he has, because we both do a good job at hiding it. He will hold it as long as he can so people don't know. People don't realize how skinny he is, because he wears big clothes. If you were to see my little guy naked you would be shocked. He has tiny arms and legs, especially during a flare up. They see a round face and think "oh he is healthy". Little do they know that is called a "moon" face and its from the medication. Liam is able to manage his behavior at school (which amazes me to this day), but when he gets home it can be awful. He will scream, cry, get extremely hyper and not know how to control himself. He will be running to the bathroom 5 or six times after school and will cry because he hurts. He will not let us hold him or touch him. He will refuse food or will act like he isn't getting enough food. Its hard on all of us. I think it can be the hardest on his sister. She has to deal with his annoying behaviors and ups and downs too. She often gets into trouble, because she is so frustrated with him she will just punch him, instead of asking for help. I am trying my best to intervene and help her before it comes to that, but I am not always able to. 

Today, I had a freak out moment, because my friend was taking her daughter to get the nasal flu spray vaccine. Kids who are on long term prednisone, usually have low immune systems. When Liam was two we were told to stay away from people who got the nasal flu spray. I felt so bad, because I panicked and told the child and mom that Liam and her should not play together for a few days. I must seem like a crazy mom. I did not mean to sound crazy or upset anyone. Its just so hard, because we have to think about things that most people don't. I did not handle that situation very well. I feel bad. I hope with time I can learn how to handle things like that, instead of freaking out and scaring someone. 
I just don't want Liam to get the flu on top of dealing with U.C. UGH!!! So in talking with my nurse friend she told me that if I hear of a lot of kids in his class getting it or if lots of kids are getting sick I need to pull him for a while. So now I wait and see what this fall cold and flu season looks like. 
Has anyone had a freak out moment where you looked like a crazy mom?????

6 Months Remission

Well we had a great run for a while. Six months remission, I will take it any day. Liam was able to gain a healthy amount of weight keeping him at 50%.  His height went from 50% to 75% which we were thrilled about. We not only saw those improvements, but we saw him gaining muscle which helped him become more agile, coordinated and strong. Liam got three colds during this time and was able to fight off two of the three. It was amazing. The last cold he got, turned into bronchitis and he was put on Zithromax. His little gut surprised us and handled it great. He did not get a flare up like he normally does from antibiotics which Mike and I were thrilled about. I was so happy his UC was holding its own. 

Liam started transitional kindergarten this August at H.O. He is so happy to be at school with sissy. They love seeing each other in between recesses. He is thriving and loving Nikki his teacher. About three weeks into school Liam did start to have loose stools. I kept an eye on him, making sure we did not deviate from healthy eating. I thought maybe I could get him through with the diet, but no such luck. After two weeks I realized he was getting worse. I started him on 5 mg of prednisone, because usually a tiny dose can get him cleared up. Unfortunately it did not work and he got even worse. After talking with his doctor we bumped him up to 10 mg hoping that would do the trick and again he got worse. We bumped him up to 20 mg and did stool samples, blood work to see what was going on. Liam was such a trooper. He cried when they put the band around his arm and was very nervous. I asked him if he wanted me to cover his eyes. He said "yes". As soon as I did that I started talking in his ear telling him to take slow deep breaths. I did not know if it would work, but he went for it. Slowly he started to calm down and breathe through the whole blood test. We were so proud of him. Even the nurse taking his blood could not stop telling him how brave he was. She said "Liam I wish all kids were as brave as you". I think he was proud of himself. 
A week went by and the doctor called to tell me everything came back fine. I told her we had a new symptom that morning. Liam woke up at 5 am screaming in pain. He cried for about 45 minutes until he threw up about a cup of mucus. We did not know what to make of it. Liam looked at me and said I all better mom and curled up in my arms and fell back to sleep.  She suggested we start him on Flagyl and see if we can get him over the hump. She could not explain to me why Flagyl would work, nor why he threw up,which upset me a little. I hate giving my kids medicines without knowing why. 
We started Flagyl and within 24 hours Liam started having completely normal bowel movements. I am so happy for him, but worry we might be back to square one once he is off of it. By that time though we will be seeing his doctor for a check up, so we will go from there. She said he would have to be scoped for that visit. Not sure how that is going to go. When he got scoped last time he was put to sleep. This time she is doing it in her clinic. I hope he stays calm and we don't have to pin down a screaming child. I don't handle him screaming very well. 

I don't know how other parents give their kids medicine that is in pill form but here is how we do it:
I crushed the prednisone and now Flagyl with a Pestle and mortar. I then pour the medicine on a spoon. Then I pour a few drops of Orange Juice or Pineapple Juice and have him take the spoon full. He then chases it with a shot of juice. We try to make a game of it and see how fast he can do it. He is so brave and never gives me any grief. If you only knew what these medicines taste like, they are awful. I would love to know how others get their kids to take it, just in case he decides one day to refuse taking it. 

Some side effects he is having from prednisone are:
Moody
Emotional
Moon face
Extremely hungry
Angry
At times does not want to be touched
Hyper
Joint Pain in knees
Hairy back

Happy 4th Birthday Liam

Today is Liam's 4th Birthday. I cannot believe a whole year has gone by. My husband and I for the past few months have been saying we cannot wait for 2011 to be over. This year has been so hard, and we just kept thinking to ourselves it was one of the worst years thus far. Then my mom said something that changed my husband and I forever. She said "Katie this is the year you got Liam healthy". "It is one of the best years we all have had". I cried when she said this and later that day I told Mike what she said. He looked at me with tears in his eyes and said "Please tell your mom thank you. It is exactly what I needed to hear".

When Liam turned three he had just been diagnosed with Ulcerative Colitis. It was a day both Mike and I will never forget. We both felt like the wind was just knocked out of us. Then I saw a pale, malnourished, little boy who was losing weight and not eating much. He was in the 5% for weight and 50% for height. Compared to his sister who has always been off the charts for height and 75-90% for weight it concerned us greatly. At first we made small changes in our diet. Little by little I saw improvement in him. Little by little I saw improvement in all of us. A year later we are all on a gluten free, dairy free, refined sugar free, nitrate free diet. We eat whole foods or "real" food as I call it. Liam who was 26 pounds is now 36 pounds and has grown 3 inches this year. He is also fighting colds better than he ever has since birth. Mike and I have so much to be grateful for. I hope this next year is even better for our Liam bug and family.

Happy Birthday Buddy, we love you so much!

Probiotics

Liam is currently on a probiotic called VSL#3. His GI doctor wrote a prescription for it and I have found that Costco is the cheapest so far. I pay $73.00 for a month supply. Seems like a lot, but I fell its worth it, if it keeps him off the nasty drugs like prednisone.  The VSL#3 comes sachet, which contains 450 billion live probiotic bacteria. Every morning I dump one sachet into a cup of fresh squeeze juice and Liam drinks it up. He loves the stuff and always asks "is it time to take my tummy medicine mama?" According to my doctor and the research on this product VSL#3 works by lining the GI tract with optimal quantities and types of probiotic bacteria. These bacteria adhere to the walls of the GI tract and form a barrier which protects the inner layer of the gut from bad bacteria and other toxic substances that can cause inflammation. In my sons case this helps when he has to take an antibiotic.  VSL#3 produces a variety of good bacteria, delivering relief from symptoms and enhancing the health of the GI tract. If your interested in VSL#3 check out their website here:http://www.vsl3.com/


Today I read an article by Dr. Mercola about probiotics and the reasons for taking them. Check out the link: http://articles.mercola.com/sites/articles/archive/2010/10/11/probiotics-healing-power-impresses-researchers.aspx?np=true


I strongly believe in this product and recommend it for all people living with UC or any other stomach problems. 

Liam's first day of Preschool!

Ready to go to school with his lunch box and change of clothes

Today was Liam's first day of preschool! We have waited a long time for this day! Because of Liam's health we were not able to put him in any activities that had lots of kids. From as early as 6 weeks old Liam has caught every cold his sister was exposed to and caught things all on his own with very little exposure to the world. His little immune system as many of you know just could not shake your typical cold/virus. When he was 2 1/2 he got the go ahead to start preschool or be in mommy and me groups. We tried it and he that is when he came down with Ulcerative Colitis. A year later and now we have the go ahead once again. I searched and searched for the right preschool for him. I thought at first a co-op. I had my daughter Savannah at one and loved it, but the political side of a co-op as well as the time, and fundraising just would not work. I called about three preschools with low ratios and they all seemed great until I told them about Liam. I would begin to explain that he has U.C. and as soon as they realized he had dietary restrictions and would have "flares" they said that they may not be the best fit for him. A bit discouraged and sad I decided to call one more place. I was familiar with Innovative Preschool from college. Innovative is a  unique, fully blended inclusive preschool for children with and without special needs. When I called them they said it would be not problem accepting Liam  and they would support his diet restrictions and if he had a "flare" they would allow him to still come to school. He was put at #66 on the waiting list. I was at first a little worried it would be forever before he was able to attend. But I thought "if this is the place for him, it will happen when its meant to." Within 3 weeks I got the phone call that he was accepted. Wahoo! Now time to prepare him. Of course I thought I need to start telling him about preschool to give him time to process it. We took a tour of his room (turtle room) and met his teacher. We played for a good hour and he was all ready to start. Unfortunately for him he had to wait 6 weeks. So for 6 long weeks Liam asked every day "today I go to preschool?" Last week we went shopping for his very first lunch box. Four stores later and he settled on Scooby Doo. Last Thursday Liam came down with his first virus since his tonsillectomy/adenoidectomy. He had a 6 week run with no colds, which was awesome. Around 9:30 pm Liam came down with croup. I am used to croup, but was worried he would not be well enough for his first day of school. Typical Liam before surgery would not have been. I am super excited for him, because his body fought this virus better than it ever has. He still has a little wet cough, but overall is ready to start school. 


Well last night we told him "Liam you get to go to preschool tomorrow." He said "Yay" and then said "You go with me to preschool, come back one minute or I be sad and cry." I said "I will drop you off and will pick you up a little later." He replied with "I do not go to preschool". For the past 6 weeks he has said with enthusiasm "I go to preschool you drop me off and pick me up later". I was a little worried as any mom would be. 


This morning he had a big break down and refused to get dressed. After 20 minutes he snapped out of it and helped pack his lunch. We packed a gluten free peanut butter and jelly sandwich, banana, cherry tomatoes, mandarins and a fruit leather. He was very excited to go, which made me happy. 


When we arrived, Mike was there waiting for us. Liam was super excited to see daddy and show him Sheldon the turtle. We signed him in, showed him his cubby and found his buddy Malia. He gave her a big hug then said goodbye to us.  I started to walk off and he grabbed my dress. I thought to myself okay this is when he is going to cry. But instead I told him I would be back very soon and lets find something for you to do.  I showed him the play dough and he sat down and started playing.

Liam with his friend Malia!

Savannah and I got to go to the park, out for smoothies and to the grocery store. It was fun just spending time with just her. I enjoyed her stories with no interruption from Liam. We both agreed that is was weird not having him around. 


When we picked Liam up he was super excited to see us. He got his shoes on faster than I had ever seen and grabbed my hand to leave.  He told me" I play with play dough then I cry. I draw pictures....I cry...I eat lunch...I cry." I asked you want to go back? He said" NO". I told him he has to go back. He said "Okay". I think overall he had fun and it will be good for him. I am so thrilled I found a place, where he can socialize, learn and grow. It gives me peace of mind knowing he will be accepted and I don't have to worry about what he eats or when he has a flare up. 

Liam Doctor Update

Hi everyone, hope you had a great Fourth of July. We had a great time down in Folsom with Mikes family. July 3rd we went to a festival in El Dorado Hills listening to music, eating yummy food and watching a wonderful firework show. The kids enjoyed decorating their bikes on the 4th and riding behind a local fire truck around my sister in laws neighborhood. It was 106 that day so the kids spent most of the day playing on the slip and slide or squirting each other with water guns. We BBQ that night and lit sparklers once it got dark. All in all it was a fabulous weekend.

The next day we had a follow up with Liam's GI Doctor. She was very happy with Liam's progress so far. She said on paper he looks really good. We were suppose to take him to clinic and have tests ran, but due to him just having surgery for his adenoids, tonsils and terbinates she felt we could wait. She was very impressed with the diet changes and wished more parents would do the same for their children. She believes preventative care is the best. Her hope for Liam is to one day live a normal life where prebiotics and probiotics as well as healthy eating is what ultimately keeps him flare free. He is still on what we call a roller coaster, but hopefully his surgery will allow him to get healthy and not be on as many antibiotics, thus allowing good flora to build up in his gut.

She stressed to us that we need to be really strict on sugar intake. We allowed him to have a snow cone July 3rd and it gave him a horrible headache, tummy ache and diarrhea. I knew better than to give it to him, but wanted him to have fun with his sister and cousins. Lesson learned and we will have to be more careful. The next step is that we have a follow up appointment in November unless Liam has a flare up. At that appointment we will schedule another scope and blood work. I am not looking forward to prepping him for that scope, but we will cross that bridge when we get there.

On a side note something that Mike and I had never thought about was Savannah. We were talking with Dr. Davies about the diet change and I brought up how Savannah has given the coconut milk a really good try. I expressed to her that I wanted to switch her to raw milk. We made the switch to raw cheese and was thinking of putting her on raw milk too. She strongly suggested against the raw milk. She had just treated a child who got very very ill from raw milk. She advised us to take Savannah off all milk products like Liam. Dr. Davies is a huge believer that Cows milk is for "baby cows" only. She strongly believes the milk made here in the US has lead to the increase in allergies and that it leads to so many health issues and cancer.  I agree with her on many levels, thus why I was looking into raw milk. Her concern is that since Savannah has tested positive for a slight milk allergy, then we should not mess with it. She essentially said that Savannah has the same genetic makeup as Liam and although she is not showing signs of UC, and may never, why take the chance? UC is usually diagnosed at the ages of 15-35 and they still don't have concrete evidence as to why and how people get it. Many researchers and doctors think its genetic as well as environmental and the food we eat. Liam is a rare case being diagnosed at 2, but why would we take the chance when it comes to our daughter? Mike and I had never thought about Savannah possibly coming down with this. What if I did allow her to eat certain stuff that we know causes Liam to have a flare up and she showed signs of UC at 15 years old. I do not think I could forgive myself. Preventive medicine I think is so important. Through all of my continued research why would I allow my daughter to drink milk that has been highly processed. I was giving her organic milk, but it is still highly processed. So now all of us will be dairy free. We need to lead by example and so no more cheating for Mike and I. I sure am going to miss gelato and pizza! If anyone has any good pizza recipes that is gluten and dairy free please let me know. I will be experimenting very quickly in my kitchen to come up with a yummy recipe. I will share if I succeed!

Food Liam Eats Part 1

Fruits and Vegetables:

Organic is a biggie in my household. I use to stick to the dirty dozen foods when I had to be on a budget. These foods should only be bought organic. These can be found here: http://www.walletpop.com/2011/02/24/the-dirty-dozen-produce-exposed-to-the-most-pesticides/. The clean 15 have the least amount of pesticides if you want to save money and can be found here: http://www.walletpop.com/2011/02/25/the-clean-15-foods-you-dont-need-to-buy-organic/. Now I just buy everything organic to play it safe. I just want Liam to have the least amount of chemicals in his little body. Places I tend to shop are, Trader Joe's, Whole Foods or our local farmers market. I have researched it and now know which places have the cheapest organic fruits and vegetables. 

Fruits are easy for Liam to digest. He can eat just about everything. I limit his apple intake and always take the skin off. Grapes and watermelon are two other fruits I give sparingly. I try to give him mostly fresh fruit. However I do buy frozen fruit for smoothies. Liam usually has a smoothie everyday either with breakfast or as a snack. I also buy canned fruits for days that we are traveling. I do not do it often because you can't buy organic canned fruit. I also only buy them when they are packed in juice. They can be hard to find sometimes. Most canned fruits are packed in syrup. Below is a list of fruits that we eat in our house are:

• Bananas
• Strawberries
• Blueberries
• Blackberries
• Raspberries
• Avocado
• Oranges
• Kiwis
• Mango
• Pineapple
• Mandarin's
• Peaches (skin off)
• Nectarines
• Watermelon (sparingly)
  
• Grapes (sparingly)
  
• Apples (skin off and one a day)

Vegetables are a little tougher for Liam to eat, especially raw ones. I try to not give him much raw vegetables, due to it being "roughage". Roughage can be hard on his gut to digest and so if he does eat veggies most are cooked. Lettuce is one vegetable I do not give Liam at all. I will give him cooked spinach, but raw leafy lettuce is not very good cooked, so I just avoid giving it to him. As you read you may also be surprised that I don't have potatoes or corn on the list. Potatoes and corn are high in fiber, which I try to keep Liam away from. They are high in carbohydrates which  breaks down into sugar. Sugar is hard on a gut, especially a UC gut. As you learn more of how I feed him you will find that I don't feed him a lot of carbohydrates or sugar. But I will go into more detail in the sugar post.  Because, we are talking about fruits and vegetables I will only explain that fruits and vegetables are actually simple carbohydrates -still composed of basic sugars, although they are drastically different from other foods in the category, like cookies and cakes. The fiber in fruits and vegetables changes the way that the body processes their sugars and slows down their digestion, making them a bit more like complex carbohydrates. Complex carbohydrates are considered the "good" carbs. Below is a list of the raw vegetables that he can eat are:

• Tomatoes ( he loves cherry the best)
• Cucumbers (skin off)

When I give Liam cooked vegetables I usually steam, stir fry, roast or BBQ them. I will post some yummy recipes in a couple of days. Check out my list below.

• Asparagus
• Green Beans
• Carrots
• Sugar Snap Peas
• Cauliflower
• Broccoli (small amounts)
• Sweet Potatoes
• Red Bell Pepper
• Green Bell Pepper 
• Orange Bell Pepper
• Yellow Bell Pepper
• Zucchini
• Yellow squash
• Collard Greens
• Spinach
• Cabbage 
• Bok Choy 

I hope this helps some of you. If you have any questions or ideas please feel free to comment. I would love to chat about this.

Diet during flare up

In the beginning before I made drastic changes to Liam’s diet I pretty much let him dictate what he wanted to eat within reason. The only area of food I did not budge on was dairy and high fiber foods. Liam’s first “flare up” started July 2010. He was diagnosed October 2, 2010 and after treatment the flare ended December 2010. This flare lasted 6 months. Liam was a great eater before the Ulcerative Colitis started. Little by little he started refusing to eat certain foods that he once loved. He stopped eating all beans, raw vegetables (except for tomatoes and cucumbers) apples with skin, and high fiber breads. All he wanted to eat was instant oatmeal, nitrate free hot dogs, scrambled eggs, pancakes, sausage, fruit snacks, smoothies and In and Out Hamburgers. Because he had dropped 7 pounds in 4 weeks, I just fed him whatever he wanted to eat. I worried about the lack of nutrients he was getting, but the doctors kept telling me to give him what he wanted. 

I started tracking his food, per the advice of a friend who lives with Ulcerative Colitis. I started to see a trend. His typical day consisted of:

Breakfast:

Instant Oatmeal or Pancakes with Sausage

Snack:

Banana or Fruit Snack

Lunch:

Hot Dog or Oatmeal

Snack:

1/2 Apple no skin

Dinner:

Hot dog or Chicken with plain rice

Some days I could get him to eat plain chicken legs that were baked or barbecued or some slices of turkey.  These foods must have helped with the pain he was in. I call them his comfort foods. Once his "flare up" ended the oatmeal and hot dogs became a food he refused to eat. He has had two little flares since his very first one and he goes back to the oatmeal and hot dogs. But once he is on the mend he refuses them again. I am not sure if this helps other parents, but if you don't know what to feed your kids during a "flare up", try the foods that I listed above. 

Liam's Story

Liam is my three year old son, who is living with Ulcerative Colitis. This story is about everything he has gone through in just three short years.


Liam was born 6 1/2 weeks early. He beat all the odds and surprised everyone by being a healthy 6 pound 1 oz baby boy. He spent very little time in the NICU and got to come home with me three days after his birth.  Everything was great until he got his first cold at 8 weeks old and ended up on his first round of antibiotics for a sinus infection. The youngest by far his pediatrician had ever treated. Little did we know at the time this would be the norm for Liam.

He was colic for a good 10 months screaming for hours on end, projectile vomiting due to acid reflux and was constipated all the time. We had him on medication for the reflux as well as the constipation. I changed my diet and nothing seemed to work. One day I went to my chiropractor for lower back pain.  She was asking about Liam and I told her how he was doing. She asked me if she could check him out? After examining his spine she said he was out of alignment in two places. I was a little nervous having my 10 month old adjusted, but I trusted her very much. After she adjusted him, he began to giggle. I could not believe it, he was actually happy.  He had the most normal bowel movement we had ever seen that night and slept. We were thrilled with the results. We took him two more times and the constipation stopped. Even though the constipation was over, he was still fussy.

By his first birthday a friend suggested taking him off all dairy and seeing if his crying and upset tummy's would stop. To this day I am so grateful for her suggestion. Liam was lactose intolerant and in just two days he turned a corner.  Liam was finally the happy 1 year old he was suppose to be. 


We were thrilled to have discovered the lactose problem, but we still had not gotten a handle on him getting sick so often.  By the time Liam was 15 months old he had been on 22 antibiotics. Yes I said 22. My mama gut just kept thinking that something else was wrong.  Finally we ran tests and he was diagnosed with a low immune system....DUH! I kept him isolated as much as I could for a mom who also had a 4 year old daughter to entertain. I took him off tap water, started washing him with sulfate free body wash, gave him garlic and probiotics everyday. I started putting flax seed in his food and hiding the veggies he would not eat in his meals. I wanted to build his immune system up as much as I could. We stopped taking Liam to stores and homes with lots of kids. Everyone had to wash their hands before handling him and if they were sick they had to stay away from him. He still got sick, but it was not as bad as the year prior. At his 2 1/2 year check up he got a clean bill of health. We were all so very excited to be able to do things as a family and not be so isolated.

Things were going great. Liam was antibiotic free for 16 weeks, the longest he had ever gone. It had been three months since he was given a clean bill of health. Things were starting to look up until be got back from a family camping trip in July. Liam started having diarrhea. At first I thought it was from all the summer fruit he was eating. I took him off all fruit and there was no change. He started looking very pale and was eliminating foods. I took him to his pediatrician who decided to treat him for Giardia. He immediately started feeling better.  Unfortunately as soon as he finished the antibiotic, the diarrhea came back. Three doctors researched if Giardia could come back and they said that the antibiotic does not kill the eggs, so the eggs may have hatched. This time Liam was put on the antibiotic for two weeks. Well same thing happened. After two unsuccessful treatments and Liam losing 7 pounds, we were off to a specialist. Liam had a colonoscopy, endoscopy, many biopsy's and blood work done the day after the appointment. The doctor called three days later with a diagnosis of Ulcerative Colitis. 


Once we got the diagnosis his doctor put him immediately on 20 mg of prednisone.  For three months we gave him this drug. He had extreme bouts of roid rage, which was difficult on him as well as us.  He became extremely sensitive to touch, and clothing textures. He would have lots of energy, which was uncontrollable at times. It was very hard to watch and not be able to take it away. He started to grow dark hair down the spine of his back. Eventually Liam started to eat again, have some normal bowel movements and gain weight. This drug that turned him into a different kid, was actually working. 

Since the diagnosis I have spent endless hours researching this autoimmune disease, which is incurable. The one thing I keep noticing is there is very little information about children (especially toddlers) living with UC, and very little about preventive measures. Every story I read is about what drug or drugs the doctors have put each person on and what side effects they are experiencing. After reading many similar stories and watching my son deal with the affects of prednisone,  I decided I was going to research alternative ways to help Liam. This is not my disease, its his and he is going to have to learn how to manage it as he gets older. But, for now I can do everything in my power to help him. 

My husband and I kept thinking diet had to be a key component. Liam was eliminating certain foods on his own. I started listening to his requests, even if it was the same food over and over again. I swear there were days, when he only ate instant oatmeal and nitrate free hot dogs. I tried asking his doctors about what foods I could give him. At first they were no help, and just kept saying" give him the drug, its working". After we weaned him off the prednisone, we met with his specialist for a follow up. I told her that I took Liam off all dairy, high fiber foods, raw veggies, and beans. She was impressed that I did that on my own. She suggested also taking him off sugar. Along with that I decided to only eat organic food and eliminate gluten, nitrates, corn products, and corn fed animals. It has been quite the journey so far. At first I only changed Liam's diet, but it got to difficult giving his sister things he could not have. I decided that we were going to all do it together. Some things have been easier than others, but overall it is going well.


 This is Liam's journey, but also our families journey. I am hoping this blog can help other families out there dealing with this disease. I hope I can be support to other moms, dads, grandparents or just anyone who has a child living with this disease. Maybe some of the things I do with Liam can help others and help them to get their UC under control. Liam has had only one other "flare up" since his first big one. He was put on only 5mg of prednisone for two weeks. The specialist was extremely pleased and impressed he got off it so quickly. She thinks the change in diet may have helped. Only time will tell, but so far so good!