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Southern New Jersey

I am a Mom to 2 amazing and fun daughters and wife to a great guy and a wonderful father!

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Kayla, my oldest. She is 4 1/2 and is a sweet, loving and silly little girl. She took us 2 ½ years and 3 IVF’s to conceive. Kayla is allergic to dairy. We manage her allergy and work to balance her safety with giving her a normal childhood. Kayla loves to read books and play games - she amazes me every day.

Alysa, my youngest. She is 3 years old and is a silly little spitfire. She’s our monkey and loves to climb on everything. She was a “natural” baby, but it was only b/c of my wonderful doctors that we were able to stop an impending miscarriage. Alysa suffers from Acid Reflux Disease and sleep apnea. She may be little, but she has a big personality. She adores her big sister and is so much fun to be around. She keeps me laughing every day.

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Tuesday, June 12, 2007
Am I Jumping the Gun...?
I think Not...

So on June 1st, I cut Kayla and Alysa’s dose of Prevacid in half. They went from getting two doses a day to only one. I gave it to them in the morning for a week, hoping that dose would get them through the day so they would eat. This past Saturday, I stopped their Prevacid altogether. I have been dreading this step for a very long time. But I knew it was inevitable and the only way to determine if they still need their medication. I was a bit resistant to trying this break, but I recently read an excellent book written by a Pediatric GI doctor about infant reflux. Now yes I know my kids are way past the infant stage. But I found it to be an excellent read and the last chapter was about reflux in children. The book, Colic Solved was written by Bryan Vartabedian. I found it a bit scary that he states that if GERD (reflux disease) goes past the age of 24 months, then it is no longer isolated to infancy and will not be easily outgrown. His meaning is that the normal physiological reasons for infant reflux are gone at this point. Basically, the digestive tract is matured and fully formed. This is usually so by 18 months, which is why Alysa is also be trialed off her Prevacid. But he also states that it’s easy for parents to see the medication as a crutch and it’s important to trial w/o it to determine if it’s still needed. So we forged ahead. The plan, a decreased dose for 1 week on both girls and then no medication. They go for a weight check in August (6 weeks after the trial began) and then, assuming all is ok, for a check-up with GI in September.

Although I am concerned about both girls, I tend to get more panicky at the first sign of trouble with Kayla as Prevacid was a huge part in bringing her out of her Failure to Thrive (FTT) diagnosis. And she looks healthy now. FTT is a terrifying diagnosis, especially when you’re faced with possible hospitalization.

So of course, this week, I have been on edge. I am questioning every possible food intake change. So far I have not noticed much change in Alysa. Her eating has been erratic for a while. But that all seems to revolve around her teething. She’ll eat like gangbusters, and then slow down for a few weeks, only to have it increase again after her tooth breaks through. She actually started to decline a few days b4 the Prevacid changed. But, I have not noticed anything significant since June 1st. She eats like a bird like always. :)

Kayla on the other hand – let’s say I have noticed some things. For a child, who a year ago was seeing a Feeding Therapist to help increase her food intake eats amazing well, especially considering she’s a Toddler entering her Preschooler years. Of course she’s almost 3, so she does not eat perfectly at every meal and sometimes barely eats anything. But overall, she does great. She’ll eat a whole sandwich (minus the crust) and sometimes a half of a soy yogurt (depending on her mood and how much of her sandwich she ate), then fruit and sometimes a snack. That was a typical lunch. Her other meals were similar in volume. In the past week, I have noticed that her volume has declined in some meals. Not every meal, but she has more meals now with less intake than she used to. Has it been a drastic drop, for the most part, no. She has had a couple where she barely ate anything. But I have stopped offering her a whole sandwich. Her yogurt intake has increased thankfully. But is it b/c it aggravates reflux less? I don’t know. She doesn’t complain during meals (though she never did, except when she was an infant). Am I seeing things that aren’t there or exaggerating what is there? She has 1 more molar that she’s working on, but teething has never fazed her very much.

The most “telling” has been the past 4 nights. Friday was her last day with her 1 dose of Prevacid, so it was her 8th day of a decreased dose (and it can take some time for the effects to be seen, as the medication reduces in the body. That night, she woke up at night crying. She was up for 2 hours that night. Between crying and getting out of bed to climb in bed with us, it was a long 2 hours. Finally, after2 hours, she went back to sleep and slept the rest of the night. Reflux popped into my head immediately (being horizontal can wreak havoc on reflux). J thought I was reading into things. Saturday and Sunday, she woke up crying. But luckily both nights, she went back to sleep easily (Saturday, after 2 wakings, Sunday after only once). Last night was a whole different ball game. She woke up at 11pm and didn’t go back to sleep until about 4am. She cried, she got out of bed, came in bed with us, had to go potty and kept complaining that her tummy hurt (that was the theme of all 4 nights). Now I know as a Toddler, she can say that b/c she thinks it will get her what she wants (like her phase of “my tummy hurts, I need to watch Dora”), but that phase has pretty much passed. We tried everything. I told her if she got out of bed, I’d put the lock on her door. We did – she cried and cried. We tried letting her cry it out (which usually works w/in 5 minutes). It didn’t. She cried for 5-10 minute intervals, would lay down and then be crying again 20 minutes later. I tried giving her Tylenol and eventually took the lock off. I’d rather her come into my room than hear her cry constantly. She did – at one point, she came up laid on my tummy and said, “My tummy hurts, I need more tummy medicine”. This is SO not like her. Whenever she has a bad dream, she’s up and cries, I go comfort her and she goes right back to sleep. She is only up like this when something’s not right. I’m so afraid it’s reflux. When she did finally fall back to sleep it was in her pottery barn chair with her head resting on the arm of the chair (elevated, go figure). And she slept like this until 7am. Then this morning on my way to work, it enters my mind that although she was up for the past 4 nights, the one thing the 2 worst nights have in common was her dinner – Pizza. *Ding*Ding*Ding*! I never had to think twice about what she ate when she was medicated, so it never entered my mind. Bad Mommy!!!

So I have a call into her GI doc today. I certainly don’t want to jump the gun b/c I know this trial is important but I certainly won’t be letting it go too long b/c I know how long it can take to suppress her stomach pumps and heal a damaged esophagus. Let’s just say my Mommy Alarms are going off and I am on full alert. My Mommy Instincts are telling me it’s Reflux. Then of course there is the aspect of not wanting my child to suffer from a chronic disease her whole life. But…I can’t change it so I need to tackle it head-on! So back on Prevacid she will go today…

P.S. I just spoke to her Allergist and he definitely thinks it’s her Reflux. Go Mommy Instincts!!!

posted at 10:00 AM  

At 12:06 PM, Blogger ChupieandJ'smama said...

Oh Sue, I'm so sorry! We just want our kids to be healthy, happy and off meds. I know how frustrating it can be. I took Jason off his maintenance antibiotic and bam, another ear infection. The kid can't stay on antibiotics forever.
It definitely sounds like Reflux to me too. Especially when she said her tummy hurt and fell asleep sitting up. Poor baby. It breaks my heart that our kids have to go through these things. Hugs to you both.


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