Monday, February 20, 2006

I totally forgot!

Ok, I am not done raving about Brain. I completely forgot to fill you all in on his health issues and what led up to his recent surgery.

He always had the food allergies, skin disease and was small and scrawny. Even as a newborn, when he was gaining like crazy and nice and chunky, he just did not eat. I had to wake him up all the time. He would go hours and hours without eating, if I did not try to nurse him. Never seemed to feel hungry. I was concerned, but when I DID try to feed him, for the most part he would eat. He was gaining weight, etc, so I did not worry too much.

Then when he was failure to thrive, losing weight and would not eat at all, I got really concerned. He was incredibly picky, and I did not want to encourage that. However, if there were 3 things he would eat, I gave them to him over and over again. I was not about to start lecturing on trying other foods, etc. He seemed to always feel so sick, and was so cranky because of it, I did not want a melt down. Stud and I had to walk on eggs shells because if we did one wrong move or said a certain thing, it would set Brain off into a fit that would end in him vomiting anything he had actually ingested. Which was usually not much, so we avoided that at all costs. We knew it was not misbehaviour, the poor kid felt HORRIBLE.

Had him on Pediasure and vitamins and just prayed and hoped that he would start gaining. Once he got through that horrible time from 14-18 months, he seemed to be not too bad. he did start gaining, slowly but surely. The sweet little boy we remembered was in there somewhere. He appeared again and we were on our merry way.

By the time he was 6 or so, we took him to an endocrinologist. He weighed about 35 pounds and was very tiny. Stud and I were scrawny as kids too. Our parents reminded us of that when we worried about Brain. I knew it was more than that, though. I wondered if he had some kind of nutrient absorption problem, but the Dr's all shrugged it off. He was diagnosed with "Constitutional Growth Delay" by the Endocrinologist. Did a "bone age" test and his bones were the size of a typical 4 year old, at almost 7 years old. They told us when he hit puberty, he would suddenly grow and it would be incredibly painful for him. So far, that has not happened.

We carried on like this, with him never even ON the growth chart at the pediatrician's office. Well, that is not true. A few times he made it on and was just under the 5th percentile. As long as he did not LOSE weight, people seemed fine with it. He went for periods of a year, without gaining one pound. He did not lose, so no one seemed too worried.

I went to Costa Rica in April of 2002, to visit my brother's three kids who lived there at the time. While I was gone, Stud took Brain and Jock to get updated allergy tests. I asked him how it went, and he said fine. Told me it was no problem taking care of them all (I had been gone close to a week) and getting them to their activities, etc etc had been a breeze. He did not have any idea why I was ever frazzled at all. He thought what I do every day is a piece of cake. Although the kids told me that Daddy seemed impatient and was pretty grumpy at them:) LOL He would never admit that he got a bit frazzled. They were sure glad when I got back! LOL

Brain seemed to be always snuffling and when he read things out loud to me, as he loves to do, it was torture to listen to. He seemed completely clogged up. I took him some months later to the allergist and asked about it. They did a CT scan and could not believe it! His sinuses were totally infected and packed full. We have NO IDEA how long he had been that way. They put him on major meds, we had to do a steam sauna at least twice a day, stay in the steamy shower for a long time (which is opposite of what he needs to do to care for his skin problems) etc etc. After three months, we went back to check and they were much better, but still incredibly packed. We kept on the meds for more than 6 months and the allergist spoke of possible surgery if this did not get remedied.

I asked him to remind me what Brain was allergic to, maybe I am missing something. He looked through the chart and said that when they had been tested, about a year ago (when Stud took them), it was discovered that they are VERY allergic to chicken, of all things. CHICKEN!! I almost jumped out of the chair! We eat chicken AT LEAST 3 times a week!?!?!? I had to laugh at Stud. He said he thought it sounded a little familiar. He seemed to recall Dr. M mentioning something about the allergy test results, but he was so distracted with all the kids, etc, he totally forgot. Hmmmm....everything went fine with me gone, hmmm??? Piece of cake, eh?? LOL Now he knew what I dealt with ALL THE TIME, but would never admit that it was kind of hard to keep track of things and what I do is the least bit difficult.

Once we cut that out, Brain cleared up quickly. However, he got worse again, even with no chicken. We went back and forth trying to fix his dern sinuses, talking about surgery, etc. September of 2004, he started feeling nauseous all the time. Started having what we thought were panic attacks. That is an entire post on it's own, though.

He had never really known what it is like to feel hungry. We would ask him once in a while and he said no, he was not sure what we were talking about. As he got older and I did not make meals regularly, he would go all day without eating. Jock would make himself something for lunch and ask for snacks. At supper, I would call them all and ask Brain if he had eaten anything. He would think hard, shrug and say "No, I guess not." We have a picture of my brother's kids, my little brother and my kids taken a few summers ago. I will post it. Brain is the one in the green Costa Rica shirt, hanging onto my brother's wheelchair, looking like he is about to pass out/throw up. Because he was. My mother was frantic. Things would get so chaotic and I would forget to remind him to eat. I got impatient with him doing that. It was just another thing thing for me to do, remind a kid to eat?!??! Who needs to be reminded to eat!?!?!? I thought this was just the way he was, but if you read more, it will make more sense.

We took him to the allergist last May (2005), because he had said if Brain got another sinus infection, we would do surgery. He had yet another and were tired of all the pills to swallow, etc etc.

When we were there, he was flipping through the chart and saying, "Hmmmm...hmmmmm...uh huh..." etc over and over to himself. Then he looked shocked and asked "Has he not ever done the GERD study before?? Has he had an upper GI and been tested for GERD???"

Now, I knew what GERD was because a friend of mine has it. It had never occurred to me that my child would have it?? I thought heartburn was for pregnant people and older adults.

I said no, why would he?? What does that have to do with Sinus infections?!?! He looked like he was trying not to kick himself and like he had just made a most amazing discovery. He said that if you have GERD, the stomach acid can leak and irritate the Vegas nerve, near your diaphragm. If this nerve is irritated it can cause...


Sinus Disease


We sat staring at each other with our jaws dropped. My mind was just racing, thinking "You mean to tell me that my child has had this GERD since infancy and THAT is why he doesn't want to eat and has all these conditions?!?!?!"

There was no point in getting mad that the poor man had not thought of it before now. He had been Brain's allergist since he was a toddler. Too bad it took over 10 years for him to think of this, at least he thought of it now, right???

He gave me the # of a GI specialist to take Brain to. He said he would be surprised if she did not get him into surgery right away. He briefly went over the surgery that Brain just had on the 9th of this month and let us know what it would do, etc.

I won't bore you with the details and why it took 9 months for them to finally do it. That is why he had the surgery that he did on the 9th. They went in and tightened where the esophagus connects in the stomach. When I mentioned what Dr. M said to the surgeon, about the nerve and this maybe causing all Brain's health problems, he looked skeptical and claimed to never have heard that before. They said though, the reason he has not wanted to eat is because no matter what he eats, it causes pain and discomfort. Why would you voluntarily do that to yourself?? So I imagine him as a tiny baby, not wanting to eat because it made him feel icky:(

I had noticed the past few days that the skin on his chest, back, arms, legs etc has looked smoother. It was always scaly and rough. He sheds like crazy and his chunks and flakes of skin are all over the house. There has seriously always been a fine layer of skin all over the floor of his room. Whenever I change the sheets on his bed, it looks like it is snowing in his room. So this is very exciting for all of us:)

Saturday, as Brain and I drove to see "The Pink Panther" and spend his gift card at TRU, I asked him if I could feel his back. He grinned and leaned forward and I reached up under his coat. It was not like our's, but it is MUCH smoother and not nearly as rough. Pieces did not come off in my hand, as they always have. I was trying not to cry, but I know he knew how choked up I was.

He beamed at me and put his head sideways how he does when he gets emotional. He could not stop grinning. I said "Maybe Dr. M knows what he is talking about after all, eh?? The surgeon just fixed you, but he doesn't know details. How is your nose??" He said very proudly, "I can breathe out of my left nostril."

I tried not to scream with delight. It tends to frighten them when I do that.

So there you are, longwinded, but I hope it makes some sense. Tomorrow, if all goes well, I will start the saga of Jock. I will look for the photo I mentioned, but can't now. I must clean up the school room. Clown has been after me to sit down and do math lessons with him, so I need to jump on that. I can't do it when there is disorder in the area we do "school". I want to to start math with him tomorrow and have a big clean up job ahead of me. They have gotten into all the craft stuff, paints, etc and it takes a while to clean up and organise again.

Hope everyone had a great long weekend!


Daddy D said...

Glad to read there has been some good progress. GERD eh? Interesting.

- Jon
- Daddy Detective

HomemakerAng said...

hi lowa, I have peen trying to post a while. Interesting info about GERD with your boy... I pray for good results from the surgery.

you asked about how I do it all?? Well, I dont and at this moment we are ill... house is slowly going in mayhem and i am paddling above water at this time with a paddle. Oh, there i see "dirty laundry island" , I will land there for safety :)
enjoy your break from blogging