Yesterday was our appointment at PCH's Scottsdale office to see GI. We saw Dr. Silber because we had heard great things about him from a friend. Our main goal was to talk about Ramya's bowels because we are still trying to see if she will need a cecostomy in the future, or if she can adequately manage them on her own. The general surgeon, Dr. Bae, believes that she will likely need the cecostomy, and I agree. I can clean her out just fine, but she has many accidents. Though she doesn't care right now about them, I know eventually she will. The cecostomy would help keep her from having so many. Before we decide on that, though, we want to exhaust our non-surgical possibilities.
Dr. Silber asked us a lot of questions to find out as much as he cold about her history, what we've seen during her 6 months (AH... 6 months!!!) home with us, where she is at developmentally, etc... He spent quite a bit of time with us. I went in prepared to argue why I don't want to give Ramya miralax. I know that miralax is the go-to for bowel issues, however, I find probiotics, George's Aloe Vera Juice, and Senna when needed, works very well. I don't like that long-term use of miralax in children has not been adequately studied, and I do not like putting PEG in my kiddos bodies, even though it is not supposed to cross the blood/brain barrier. Anyhow, I was told by Dr. Bae that she would likely need to try miralax, and most of what I read is that kiddos with SB take a daily dose of miralax, so I was anticipating a struggle. Thankfully Dr. Silber was totally on board with our approach and saw no need to try and change it. The only thing he would like to do differently, though, is to give Ramya Ducolax suppositories (well, half of a suppository) once a day to see if we can clean her out a bit more in one setting, and therefore keep her from having so many accidents.
We talked about her weight gain, as Dr. Bae had put it in the notes he sent over, and he asked me if I wanted to put Ramya on an appetite stimulant. I told him that Ramya had grown about 3 inches taller in the past 6 months and has also gained 2 pounds recently. I am thinking she's just one of those kiddos that grows up, and then out, and then up, and then out. First came the height, and now a bit of weight gain. I told him I'd rather wait and just see how she does, and he agreed that we could do that.
Dr. Silber noticed that Ramya's iron levels are pretty low so he'd like Ramya to take iron supplements for a few months. He thinks because she was so deficient for so long, her body is still struggling to catch up, but that after a few months, it should be fine and stay fine. He doesn't see it being an ongoing problem and doesn't think that she will need supplementation past a few months.
It's hard to add another doctor to our list of frequents, as Ramya now sees the pediatrician, orthopedic surgeon, neurosurgeon, endocrynology, and GI frequently, and Madi now sees the orthopedic surgeon, pediatrician, urologist, neurosurgeon, and neurologist, but I can't complain because my girls get AMAZING care and have doctors that truly care about them. I am so very thankful for that! I can't wait until the day when they can see the doctors at the same time, and at the same place. That will be a life-saver. Right now Madi is on our insurance and also long-term care and can only see her doctors out of CRS. Ramya is on our insurance, but we can't apply for long-term care for her, as we are still waiting on everything to be 'official' in Arizona so that she can be give our last name. Until then, she sees the exact same doctors (for the ones that they both see), but at PCH. So, for now, we can't coordinate. The good news, though, is I can sneak in questions to the doctors about the kiddos they aren't seeing, and save myself a call in to the office.
In other news, Madi got her new HKFOs today. She was sooooo very excited. I'll post about that soon, and show some pictures :).
Dr. Silber asked us a lot of questions to find out as much as he cold about her history, what we've seen during her 6 months (AH... 6 months!!!) home with us, where she is at developmentally, etc... He spent quite a bit of time with us. I went in prepared to argue why I don't want to give Ramya miralax. I know that miralax is the go-to for bowel issues, however, I find probiotics, George's Aloe Vera Juice, and Senna when needed, works very well. I don't like that long-term use of miralax in children has not been adequately studied, and I do not like putting PEG in my kiddos bodies, even though it is not supposed to cross the blood/brain barrier. Anyhow, I was told by Dr. Bae that she would likely need to try miralax, and most of what I read is that kiddos with SB take a daily dose of miralax, so I was anticipating a struggle. Thankfully Dr. Silber was totally on board with our approach and saw no need to try and change it. The only thing he would like to do differently, though, is to give Ramya Ducolax suppositories (well, half of a suppository) once a day to see if we can clean her out a bit more in one setting, and therefore keep her from having so many accidents.
We talked about her weight gain, as Dr. Bae had put it in the notes he sent over, and he asked me if I wanted to put Ramya on an appetite stimulant. I told him that Ramya had grown about 3 inches taller in the past 6 months and has also gained 2 pounds recently. I am thinking she's just one of those kiddos that grows up, and then out, and then up, and then out. First came the height, and now a bit of weight gain. I told him I'd rather wait and just see how she does, and he agreed that we could do that.
Dr. Silber noticed that Ramya's iron levels are pretty low so he'd like Ramya to take iron supplements for a few months. He thinks because she was so deficient for so long, her body is still struggling to catch up, but that after a few months, it should be fine and stay fine. He doesn't see it being an ongoing problem and doesn't think that she will need supplementation past a few months.
It's hard to add another doctor to our list of frequents, as Ramya now sees the pediatrician, orthopedic surgeon, neurosurgeon, endocrynology, and GI frequently, and Madi now sees the orthopedic surgeon, pediatrician, urologist, neurosurgeon, and neurologist, but I can't complain because my girls get AMAZING care and have doctors that truly care about them. I am so very thankful for that! I can't wait until the day when they can see the doctors at the same time, and at the same place. That will be a life-saver. Right now Madi is on our insurance and also long-term care and can only see her doctors out of CRS. Ramya is on our insurance, but we can't apply for long-term care for her, as we are still waiting on everything to be 'official' in Arizona so that she can be give our last name. Until then, she sees the exact same doctors (for the ones that they both see), but at PCH. So, for now, we can't coordinate. The good news, though, is I can sneak in questions to the doctors about the kiddos they aren't seeing, and save myself a call in to the office.
In other news, Madi got her new HKFOs today. She was sooooo very excited. I'll post about that soon, and show some pictures :).
I'm a few days behind in reading this! Will Ramya be taking a liquid iron or a pill? I'm always slightly anemic and taking iron is murder on the digestion! I've found that taking the "SlowFe" brand of pills is sooo much easier and doesn't cause the stomach aches or constipation issues that other iron pills do. Not sure if she can swallow pills yet but it is something to remember for later! :)
ReplyDeleteThey prescribed a liquid. She can swallow pills though so that is really good to know!!!! I'll watch her closely and then request those if she has any problems. Thanks so much!!!
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