Grace for Rett » Grace's Life with Rett Syndrome

Homer Simpson wanted one, Grace gets one soon {feeding tube}

The type of tube Grace will have

I seem to remember an episode of the Simpsons where Homer was amazed at the invention of feeding tubes so he could eat without any effort. Anyone else remember that?

We went to Grace’s surgeon appointment yesterday and she immediately started talking about which tube Grace would have. My head was spinning. I was like, “so are you saying that you think Grace needs this?” She replied that Grace “clearly hasn’t gained weight in a year” which I wasn’t aware of. I guess different doctors have kinder ways of talking about weight and she was so plain about the fact. In her opinion, she doesn’t think that what Grace is experiencing (see my last post) is actually Sandifer Syndrome because she didn’t think that strange eye movements were a symptom, however I told her that I read they were and she said she’d look into it.

Although insertion of a feeding tube (a ‘peg’) is a very safe and routine procedure which needs to be redone every 18 to 24 months, there’s a more high risk surgery called a fundiplocation for children with severe reflux. This is a more risky and heavy duty surgery and it mostly happens separately after the first operation if the reflux persists. However, in some cases it’s done at the same time and she’s considering this in Grace’s case. First, we have to have a couple tests to see how severe her reflux is and if she does, indeed, have this Sandifer Syndrome I mentioned.

The first test is an overnight PH study where she goes off her meds for a few days and they measure the PH levels in her stomach. The other is a contrast study of her digestive system to see if she has any anomalies which are causing the reflux. She’d also like a prolonged EEG which will measure her brain activity for a few days to see if she has seizures, however her specialist said she hasn’t done one in 10 years and is looking for the equipment to carry this out. Grace will definitely have one but it will probably take months before that happens. At any rate, the reflux tests will be in the next 3-4 weeks and the surgery will take place shortly after. So I suppose we’re looking at another lovely Rett Syndrome Christmas.

On that note, it’s her birthday on the 24th (Thanksgiving) and I’m trying to be positive. Both her other birthdays were tainted with sadness for different reasons and I wanted this one to be different.

Meggan - November 2, 2011 - 3:59 pm

I had a fundiplocation when I was 19. I had had reflux as long as I could remember but thought it was part of normal life. I remember waking up in the night as young as 5 and being annoyed by the burning feeling in my chest. My last two years of high school it finally became unbearable and my esophagus was being torn apart by the acid. Enter the fundiplocation surgery. I am now 30 years old and can say that the surgery was a success. I only have heartburn when I’m pregnant (who doesn’t) and my esophagus is in excellent shape. The one down side, when I need to throw up, nothing comes out. I can heave and heave (sorry maybe tmi) and all the food stays snug in the tummy. Hope everything turns out well!

Tiffany - November 19, 2011 - 6:39 pm

Sasha, also diagnosed with Rett’s, had a nissan fundo at the age of 4. I thought it was going to be the worst thing ever, taking away one of her last enjoyments, food. I can absolutely say I was wrong. Her gtube nissan fundo was the best thing we ever did for sasha. She began to thrive, her reflux was completely gone almost overnight, and she was off of all reflux meds. It also greatly decreased the amount of aspiration pneumonia occurances that she was having several times a year to almost none. It is so easy to feed her this way, no more battles of trying to get enough nutrition into her, and she doesn’t seem to mind not having anything orally anymore, which I thought she would. This has also proven to be a great way to get her seizure meds delivered to her also. I would love to answer any more questions about the experience we had if you have any! Good luck to grace and your family…..
xxoooxx, Tiffany

admin - November 20, 2011 - 8:29 pm

Oh wow that’s really great feedback thank you for that Tiffany!

Erika - November 25, 2011 - 6:25 pm

That is the same surgery Asher had when he was about 2 months old. It went smoothly and healed fast. No more reflux. Now, nearly 3 years later, looking back, it was the right thing to do at the time. It does come with some annoyances, as others have described……not being able to throw up when sick means the “Bug” has to work it’s way through the entire GI tract before exiting and can prolong illness and discomfort a little. And losing the ability to burp is a minor irritation because Asher walked around with a bloated abdomen and became a VERY “windy” child. He was also taking all of his foods orally at that time and had the button removed so we couldn’t “burp” his line for comfort, which is different from your situation. But, taken as a whole, it sounds like those minor inconveniences could mean a lot more peace for your family and dear little Grace by removing the Reflux Scream Sessions. I pray all goes well with the surgery and Grace thrives above and beyond what is expected 😉 Love you guys!

student - February 13, 2012 - 9:20 pm

I’m doing a science project on Rett syndrome and i was wonering wat daily life is like for you and your daughter

F a c e b o o k