Archive for July, 2005

Reflux Sucks

Monday, July 11th, 2005

So after waiting for a long time and having to reschedule appointments more than several times, we went to see the pedi GI. I wasn’t really excited about that, but our regular pediatrician felt that Lauren’s reflux had grown beyond the scope of her practice. So we headed out to the east side on my birthday to see the GI.

I must admit, I was pleasantly suprised by the appointment. The staff was quick, friendly, and efficient, and the GI was very pro-breastfeeding. Frequently the GI will suggest going to a hypoallergenic formula to eliminate as many variables as possible, but when she asked about if I had eliminated any foods (specifically dairy and soy) to see if it helped, I told her all about the elimination diet and that we knew she seemed to react to more than just dairy and soy. Because I had done that already, she didn’t even offer the special formula, she instead told me that I could go ahead and breastfeed without solids until 12 months if I wanted, because “that is all the baby needs, it has everything in it for her health” which was really neat to hear coming out of the mouth of a doctor!

Anyhow, we plan to add solids before a year, if only because Lauren really loves to shove stuff in her mouth. She gets really mad if we are eating in front of her and she doesn’t have something to stick in her mouth. Of course she’s perfectly content with a spoon, toy, or cup at this point, so we’ll just keep her content for now.

The GI suggested waiting until 2 years or never to introduce dairy, as well as any other foods she seems to react to when she starts eating them herself. She also gave me a reference to a sequence of introducing solids that is very close to the list I was working from. So that’s good too.

The bad news is that Lauren had a “normal” spitup while we were there – it was small compared to what she was doing, but the doc said “Wow, she’s a regular little fountain, isn’t she?” and continued to ask me questions about her fussy times, spitting up, etc. and told me that Lauren is still way outside the norm for what babies do. She suggested doing an upper GI scan at Children’s and changing her medicine from Pepcid to Prevacid. She gave me a prescription to get the solutabs, which is the “kids” version of prevacid. Lauren didn’t like them too much, she began spitting up and fussing a lot more than usual about 20 min. after taking one dose. She had a repeat performance in the morning, so I called the GI back. We’ve switched to the “adult” capsules now, which means Lauren has to swallow the little beads of medicine, and that’s working ok. We have yet to see good results, but they say it takes a week to kick in. More on Friday about that.

Lauren also figured out how to navigate all over the bed and floor, she kind of wiggles, shoves, and inches her way to go. It’s really fun to watch, she gets her knees up under her and now she’s froggy kicking forward and repeating, moving pretty quickly for a kid who can’t really crawl. Ryan and I are worried that she’ll really be independently mobile far too soon for our tastes.

Tuesday, July 5th, 2005

My friend Mark and his wife Angie have two children, Eva and Zach. Baby Eva had a rough start, but not outside of the limits of normal development. When Eva was a toddler, they noticed that her development was significantly slow and that she seemed to be losing her hearing. After a TON of testing and more, they discovered that she had alpha mannosidosis, a rare disease caused by a recessive gene. They also discovered that they were pregnant with their son Zach. The only treatment for alpha mannosidosisis is a bone marrow transplant. They had a great deal of ups and downs in the hospital with Eva, she had host v. graft issues, infections, and more. She’s now 3.5 years old, home and healthy, while they remain cautious and limit her exposure to illness as much as possible. Baby Zach was born in the fall of 2004 and was tested right away, and found to also have alpha mannosidosis. He just had his bone moarrow transplant last week, and so far is doing great.

Eva McGinnis
5841 St. Rt. 635
Kansas, OH 44841

Zach McGinnis, patient
RB&C Room 2602
11100 Euclid Ave.
Cleveland, OH. 44106