Feeding Tube Awareness Week 2017 - Day 3 --- Linus' Story

Feeding Tube Awareness Week 2017 - Day 3

Yesterday I wrote about Charlie Brown's story with his feeding tube. Today I will share Linus'.

Linus's need for a tube shocked us far more than Charlie Brown's. Who would, after all, think they would have two children with this type of issue?

Remember me saying Charlie Brown was born such a calm happy baby, life was good? Linus was 100% the opposite. Oh, he was born calm and happy, but that soon ended. His lactation consultant in the hospital used to say she had a 30 minute break every time she came to our room because he was just a nursing champ, slept well, was just good with being here and doing what he should be doing.

He got his Hep B vaccine and within minutes he was not that baby anymore. He started this horrible cry and didn't stop. Nursing became a battle field to the point we had to move to bottles. He cried all day and all night. We would work for 2 hours to get 20 - 30 minutes of sleep out of him. It had to be a very specific routine or forget it. We begged his pediatrician to help us. His response? "Some kids sleep less". No sir, this is not a 3 hour nap only being 2 1/2 hours or an extra 15 minutes of wake time. This is a child sleeping 4 hours a day total, which means I was getting less and Daddy was only getting a bit more because I would work so hard to keep Linus out of earshot since he had to work.

Then came the reflux, the horrible reflux. The only reflux I have seen that was worse was in a friend of mine son. He would eat, up it came ... and often half way across the room. Almost all of his baby clothes are totally ruined from reflux. There was no saving them for his children.

We moved him to an allergy free formula and thickened it and that helped somewhat, but not totally.

We finally moved to baby food and the reflux got a bit better, though the crying never stopped. It was nearly constant. If he was awake, he was crying. ECI said they had never seen anything like it. I couldn't leave the room, even if he could hear me. No one could hold him except me, even from his first week of life. No one! Not even Daddy. ECI worked to try and help him overcome this. They failed. Oh, they tried hard, but they had never seen a kid like this. We started with private therapy and they almost gave up on him but I was insistent. We had to help him. He couldn't crawl, roll over, or anything because he couldn't be out of my arms (even Daddy's arms were better than the floor to him, and that's saying something).

Once we got his therapy semi-successful, he blossomed with his milestones. There was no physical reason he couldn't do them, it was whatever this crying was that stopped him.

Eventually crying moved to just a horrible disposition in a toddler, than a preschooler, then ... well you get it. We would have hour long meltdowns out of nowhere many, many times a day and there was no way to stop them.

During this time brother got his feeding tube and life was trucking along, or so I thought. We began to notice Linus had slowed down his eating. I wasn't the first to notice it this time, and I was in a lot of denial with him doing it. My husband told me, finally, ignoring it wasn't going to help so let's face it. We tried even harder with him, and I had some new tricks up my sleeves. But, we figured out much faster with him what was going on and went to the GI. That's when genetic component started being tossed around with our doctors. Thankfully our GI tried a few things and then said, "we are stopping, time to put in a feeding tube before he gets as sick as Charlie Brown was when he finally got one."

His surgery did not go as well as Charlie Brown's. Our wonderful surgeon had retired and the new guys didn't like a GI helping with surgery, they wanted to do it their way and alone. So we didn't get the same procedure. Also, the hospital had a great new idea (said sarcastically). Go home 24 hours after surgery no matter what. He went home in a lot of pain and hadn't even had a feed with his tube yet. Horrible.

But, since then we have had success with his tube feedings. His need for control and his meltdowns have made it far more interesting, but they are working for him very well.

Side note: Some of you know about the heart scare we had a year ago (or so) with him and know that, because of that heart scare we know a huge component of why he has these nasty meltdowns (a few of you have witnessed them and realized how he smiles one second and is hysterical the next and you can't do anything to stop it nor did you do anything to start it). For those who don't, it's food. Yep. He has a very odd reaction to many foods on the market. Everything from dyes, to salicylates (that means apples send him raging), to preservatives. Label reading doesn't help because in our nation you are allowed to hide things and not put them on the label. (why?) But I will get into that story at another time.  

Food Dye Dilemma

Food dyes are in everything. If you don't believe me, go pick up a bottle of relish. Go on. Yep, yellow food dye. Look in bread, mustard, juices (even those with the words "natural ingredients" on them), the list goes on. I have picked up items I never dreamed would have a food coloring in them to find at least one, often 2 or more, in the list. Why?

But, this isn't just a gripe about the junk we call food these days. It's more than that. It's a real health issue and one that very often goes unexplored before kids are given medication. Now, before I start, I am not opposed to medication for ADD/HD. I believe it's a real disorder and some kids have it to the point nothing natural works and you must move to a man made medication. So, no hate filled emails or comments stating that I am crazy and how your child needs ... I get it.

Having said that, hyperactivity issues in children are FAR over diagnosed, and the foods we eat are a big cause of that.

My child is a perfect example. I remember, many years ago when I was in MOPS with my first child and was on the MOPS forum, a Mom said adamantly that food dyes did NOT cause issues in children with hyperactivity or anything else. I had no reason to worry about that and didn't even comment on the thread, if I recall.

Boy, how wrong she was. I pray no one that needed to know about dyes listened to her. My younger son was my kid who couldn't be figured out. If you looked at him odd, he melted down. If you said we were getting 3 things at the store and picked up 2 or 4, he melted down. If you stepped one toe out of line with what he thought was going to happen, he melted down. Now, let me describe a meltdown. Before he had words it was his face turning beet red, his hands clenching into fists, and he would immediately start screaming like he was being hurt in a major way. This would go on for hours. That's right, HOURS. It would happen multiple times a day, every day of every week of every month. He would go from smiles to screams in less than 2 seconds. People used to not believe me until they saw it. My Mom saw it in a store and never doubted me again. She is still shocked when she remembers the day her 3 months old grandson went from cooing to screaming within a split second and there was nothing she could do to comfort him. My brother-in-law thought we were just tired parents and took my 6 month old baby outside for a little walk around with his awesome uncle. He came back in a few minutes later with a screaming mess. He was wide eyed and said, "I don't know what happened. One minute he was smiling and laughing at me and suddenly I had this on my hands." Yeah, we get it brother.

This went on for years. We had little things we could do to cope, but there was no stopping it before it happened. I was getting scared. I was worried we were going to hear words like bipolar, schizophrenic, etc if we took him to a specialist. I asked our pediatrician about it. He told me babies scream and don't sleep, it's normal. He's fine. No, this wasn't just screaming and not sleeping. He would sleep less than 5 hours total for the day as an infant because he was screaming the rest of the time. It would take us an hour or more to get him to even go down for a nap or at night.

ECI came out and decided they could help. He had SPD and would probably be given an ADD label when he got older, but they had that look that said, "we won't tell you the other big labels that are coming as they would scare you" when they said it. ECI, while they had good intentions, couldn't help him. Nothing they did worked. So, we trudged along with no sleep and a toddler that screamed all the time.

One day, about 18 months ago, I was on a forum for parents of children with special needs and medical issues. I was perusing the topics of the day and noticed someone mentioned some diet they had their child on recently. I see these all the time and usually don't pay much attention to them. But this one caught my eye because my child looked like their child. I started to read the thread and the comments and they were discussing things like food dyes and even certain really typical foods that are healthy like fruit. This just couldn't be right. But, I decided to research it. The information blew my mind. This was my child everyone was describing. I had to take this to my husband and see what he thought.

His words? "Try it, try anything!" Yes, we were that desperate for an answer. We had been talking about seeing a specialist. We had cried so much in fear of what we would be told and how hard this was going to be. We didn't think the diet would work, but the alternative option scared us silly. So, we decided to try it.

I pulled dyes. Do you know how HARD it is to pull dyes completely? As I said, they are in everything. Day 2 we saw a different child. The first thing we noticed was night 1. We woke up (he was still sleeping with us) and noticed that he hadn't kicked, punched, and screamed all night as he slept. He was a violent sleeper. I have never seen anything like it. I kind of blew it off and moved on with my day. Day 2 was fairly peaceful. I walked on my usual eggshells waiting for the explosions and only a few came. I figured there was no way it was the diet already. It was just a freaky, never before seen good day. Night 2 came and, again, it was peaceful. He didn't punch us, kick us so hard we had bruises, and scream out in the night all night long. My husband woke up after night 2 and said, "is it me or did he sleep calmly last night". I said it wasn't him and he had done that for two nights. He asked if I thought it could be the dyes. I told him I didn't know at this point. 5 1/2 years of screaming, kicking, hitting at night and I had never seen him calm during sleep. I didn't know. He told me to not stop, no matter what don't stop

It's now 18 months later and we have a different child. We laugh, talk, take walks, he sleeps, we talk about things instead of him melting down for hours. We discovered, over this 18 months, that he also can't tolerate apples. One bite of apple and all bets are off. His no-no list is gluten, dairy, soy (all forms, not just the protein), all dyes (even carmel color), and apples. When you remove those, we have a typical kid. His stomach doesn't hurt (did I mention he had tummy aches for years but we didn't know why and neither did his pediatrician or GI doctor). He sleeps all night. He doesn't scream all day. Life is calmer.

My child would have been diagnosed by now with at LEAST ADD/HD. Odds are, we would have been looking at a serious psychiatric diagnosis. Medical people like my Mom who is an RN and our old doctor have told me what their fears were about our son's future. Meds would have been mandatory with the types of behaviors we were seeing. Going without wouldn't have been an option. Instead, we removed some foods and have a typical 7 1/2 year old little boy.

If you have a child who seems to be heading to, at minimum, an ADD/HD diagnosis, what is it going to hurt to try a diet that might help? If nothing else, you will have a healthier child. But, what if you have a child that needs no accommodations in school or medication? If you try dyes and see that's making a big difference and, yet, like us, think you need more foods pulled but have no idea where to start, I would suggest two things.

1) Keep a food and behavior diary. That's how we figured out apples. We kept a diary and realized every single time we fed him apples he screamed for hours, raged over silly things, and couldn't handle life. We pulled apples and that went away. We tested to make sure it was apples and it was apples.

2) Check out the Feingold diet. This goes far beyond dyes and apples (but doesn't go as far as gluten, diary, etc like we have to do. Our son needed that as his own little personal reaction that most people who use Feingold never do.). It includes preservatives, and some ordinary foods you might not think about. The good thing is, they don't just say "pull this". They give you a huge food list of what you can have, including exact brand names that are safe so you can just shop for brand names instead of having to read a thousand labels.

If you are in doubt that my story might be the only one out there and no other kid has this reaction, check out this blogger who details her daughter's life before and after removing food dyes.