My Baby the Car Battery
When Erik was an infant, he cried more than other babies. When I put my nose to his sweet face, I could smell something strange. As I knew nothing about babies, I didn't know what to make of it. It was a combination of the sharp scent of peppermint and biting acid. We trudged along as new parents, rocking him, swaddling him, and soothing him constantly. I was finally aware of how difficult our situation was when his pediatrician looked at me and quietly asked how Brian and I were doing. The look on her face was deadly serious, and all of my feelings of exhaustion and depression were instantly validated. At one point, we were asked to feed Erik every two hours 24 hours a day. Every time the alarm would sound, I thought we were simply going to drop dead. After this failed to produce positive results for any one of the three of us, we were allowed to cease and desist. I was asked to cease nursing my baby and instead give him a type of "predigested" formula that cost $25 a can.
We took Erik to the hospital and put him under an x-ray machine. He drank a bottle filled with formula that would glow on the radiographic films. He swallowed the substance as they captured x-ray after x-ray, but the chalky liquid came back up into his throat so many times the technicians said there was no question he had gastroesophageal reflux and saw no point in continuing to irradiate our baby (One year later at the children's hospital in the city just mere minutes after we were handed our devastating diagnosis, I held our son in place at an x-ray machine while I sobbed all over the lead smock I was required to wear. An upright study performed while he ate a cookie would produce the same results).
It was then we were prescribed medication, and our lives changed. First, we gave him Reglan. That evening we had a baby mysteriously screaming in even more agony and spent some time on the phone with a physician who instructed us to stop this preparation immediately. After that medication cleared out of his system, we were given a trial of Prevacid, a medication that turns off the pumps in the stomach that produce acid. The change was immediate. My baby began to emit the soft scent babies should for the first time, and he no longer seemed to be wracked with pain. It was nothing short of a miracle after months of what felt like hell on earth. He has been on Prevacid morning and night ever since. When the doctor suggested we try weaning him long ago, we both laughed too loudly at this and declined.
Now that Erik is older, I decided to stop his morning dose of medication last week and continue giving it to him in the evening. This was two or three days ago, and he seemed to be doing fine. However, this morning he woke up grouchy and refused to eat hardly anything at all. His feelings were crushed when I scolded him for kicking me with his long legs as I changed his diaper, and he repeatedly worked his lips as if he had put a little piece of something in his mouth. He sounded junky and congested up into his nose. Before he could leave in his father's arms for day care, it was clear to me that the reflux was back with the exact same intensity as before. I could actually see his throat beginning to work trying to keep the acid down.
I was already feeling a little blue this morning. The sky is heavy with clouds and the holidays are looming over me like a glittery monster, complicated and heavy, and I want to ring in the New Year already. Seeing the ruthless symptoms of reflux manifest themselves in my poor son for the first time in years was a little unnerving and made me feel like the worst mother on earth. It was also a grim reminder of the darkness this diagnosis brought to this family at one time. I could have done without this today. I thought perhaps that there would be an improvement with age.
There hasn't been any improvement whatsoever.
Erik left sobbing carried down the driveway in his father's arms with tiny beads from the dissolved Prevacid SoluTab on his lips. I'm saying a prayer right now that the magic properties of this miraculous medication take hold in his gut before he is subjected to the additional, terrible trauma of being immersed in a group of squealing, laughing children.
All I can say is this: If I could marry the good folks at TAP Pharmaceutical Products, Incorporated, I would. Thank God for them.
We took Erik to the hospital and put him under an x-ray machine. He drank a bottle filled with formula that would glow on the radiographic films. He swallowed the substance as they captured x-ray after x-ray, but the chalky liquid came back up into his throat so many times the technicians said there was no question he had gastroesophageal reflux and saw no point in continuing to irradiate our baby (One year later at the children's hospital in the city just mere minutes after we were handed our devastating diagnosis, I held our son in place at an x-ray machine while I sobbed all over the lead smock I was required to wear. An upright study performed while he ate a cookie would produce the same results).
It was then we were prescribed medication, and our lives changed. First, we gave him Reglan. That evening we had a baby mysteriously screaming in even more agony and spent some time on the phone with a physician who instructed us to stop this preparation immediately. After that medication cleared out of his system, we were given a trial of Prevacid, a medication that turns off the pumps in the stomach that produce acid. The change was immediate. My baby began to emit the soft scent babies should for the first time, and he no longer seemed to be wracked with pain. It was nothing short of a miracle after months of what felt like hell on earth. He has been on Prevacid morning and night ever since. When the doctor suggested we try weaning him long ago, we both laughed too loudly at this and declined.
Now that Erik is older, I decided to stop his morning dose of medication last week and continue giving it to him in the evening. This was two or three days ago, and he seemed to be doing fine. However, this morning he woke up grouchy and refused to eat hardly anything at all. His feelings were crushed when I scolded him for kicking me with his long legs as I changed his diaper, and he repeatedly worked his lips as if he had put a little piece of something in his mouth. He sounded junky and congested up into his nose. Before he could leave in his father's arms for day care, it was clear to me that the reflux was back with the exact same intensity as before. I could actually see his throat beginning to work trying to keep the acid down.
I was already feeling a little blue this morning. The sky is heavy with clouds and the holidays are looming over me like a glittery monster, complicated and heavy, and I want to ring in the New Year already. Seeing the ruthless symptoms of reflux manifest themselves in my poor son for the first time in years was a little unnerving and made me feel like the worst mother on earth. It was also a grim reminder of the darkness this diagnosis brought to this family at one time. I could have done without this today. I thought perhaps that there would be an improvement with age.
There hasn't been any improvement whatsoever.
Erik left sobbing carried down the driveway in his father's arms with tiny beads from the dissolved Prevacid SoluTab on his lips. I'm saying a prayer right now that the magic properties of this miraculous medication take hold in his gut before he is subjected to the additional, terrible trauma of being immersed in a group of squealing, laughing children.
All I can say is this: If I could marry the good folks at TAP Pharmaceutical Products, Incorporated, I would. Thank God for them.
Labels: medical care, medicine, reflux, Williams syndrome, x-ray
14 Comments:
Hey sweetie, the good and the bad, the echo news is great, the reflux news not so great, at least there are tools to treat it so the happy guy comes back. Have a good week and a wonderful thanksgiving.
XOXO
Amy
Ditto Amy, at least there is something on the market that treats it and you know it works. I'm thanking God for this company, too...and for you. You are a GREAT mom, hear me? A GREAT MOM.
I'm a frequent visitor of your blog, we do not know eachother realistically, but I know you through your beautiful words. I am never short of amazed at the way you express your life through your words. You are not only an amazing person and writer, but also an AMAZING MOTHER! I have seen others in your shoes not handle things as well as you do, you should know that you hold a strength that is evident to so many of us. I also am the mother of a child who is on several daily medications and that protectiveness creeps up on me as well to take her off of the medication from time to time. I haven't had the guts to do it thus far, but can't count the number of times I have prayed for the strength to do so. Your ambition and fighting nature are something that so many of us wish to embody. You tried a good thing with not so good results, but it can be fixed. Don't be so hard on yourself for trying something so many parents wished they could do. You are nothing short of amazing, you are a GREAT MOM!! Erik is blessed to have you in his life.
I hope Erik is back to himself soon. I feel so bad for you. We did the same with Keith, but we did have better luck. Be thankful that you are aware enough to know that it came back adn you can make it go away again. Trial & Error.
Have a great holiday
I agree - thank God for Prevacid. I've tried twice to take Payton off of the medication (when I told Dr. Morris I had tried taking her off, she asked "why" and said she would be on it for life). Anyways, the same thing happened with us - I could see and hear her refluxing. Now, Payton is old enough to tell us "my mouth hurts"....so I always know she's refluxing. It's awful to see them in such pain - and you're right, it brings back a lot of bad memories. Hang in there!
ughh.. Reflux is so nasty :(
Poor little Eric, back to prevacid, but hey whatever works?!
xxoo
It is like you are talking about Noah. He only takes his prevacid one time daily. We tried to ween him once and he reacted the same way. I can't even let him cry at night if he wakes because it gets really bad and he will vomit. Then he is a mess for days. Hang it there kiddo.
Amen on the Prevacid! Both of my kids were on it, and it was like a dark fog was lifted from our house within their first few doses. Sean successfully weaned off of it a few months ago, and I too just laughed when the idea was first suggested to me. I only did it when I realized he was fine after I forgot a few doses. I'm sorry Erik still needs to be on it, but what a relief that there is such a quick fix to a monster of a problem. Hang in there!
Sandra
Well, you don't have to wonder if you should take Erik off Prevacid, instead of just mindlessly giving it to him. We're SUPPOSED to see if our children don't need to be on medication, so don't feel bad - you tried, it didn't work - now you know!
I did diagnose my husband with Acid Reflux (Although he will NOT admit I did!) and after he started taking Prilosec trial, he said he felt so much better, that he didn't realize he felt crappy before - he thought it was normal!
Wow.
I'm with Kathi in that at least you have something that's proven to work. Many people can't even find that much. Everything will work out I'm sure, it just may take a little while to get there. Hang in there, great mom!
Yep, Love It To...Prevacid! Don't feel bad, you tried. Stay strong and try not to be to hard on yourself, from everything that I read you are a great mom! Hope you and your loved ones have a wonderful holiday!
I'm so glad the prevacid works for him. If that is what it takes then keep doing it! Cale doesn't have much reflux, but I can tell you that he is on 3 different medications daily now. I hate that he has to be, but without them, he can't function. So on we go.... Whatever it takes.. Happy Thanksgiving!!! XXOO, Heather
Nancy ~ A real wish for THANKS goes from me to the good folks at TAP Pharmaceutical Products, Incorporated. Also, a want to wish you and your family a VERY HAPPY THANKSGIVING TOO! Additionally, Eric is very lucky to have a mom like you! ~ jb///
Sorry to hear that Erik’s acid reflux is still around, but grateful for the miracle working properties of medicine.
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