Sarla Anisha Baniya

Welcome to the message board.  I'm sorry your jorney brought you here.  This is a great place to ask questions and get support.  I don't know much about feeding tubes as my son had ALD and he didn't have one. But I'm sure someone else will post to give advice.  Praying for your daughter.

Mary K

Hi again Bijay, Thank you for posting Sarla's story. Evie had an NG tube & had the same problems with it. Later she had a G tube. She also startled a lot. I telephoned my daughter, Claire, & she promises to leave you a message here tomorrow. Hopefully others will write too.

I would just say that our kids seem to tolerate the G tube operation very well.

Ken.

I'm so sorry to hear of your daughter's diagnosis.  We are all here to off as much love, support and advice as we can. 

Our Makinley passed in Dec. 2007.  She had an NG tube as well.  We also struggled with the decision of whether or not to do a G tube.  We never did.  It's hard to know what is best for them.  Makinley seemed to go through stages where her vomitting was worse than others...and at those times we had a hard time with the NG tube.  I learned how to put them in myself so was able to do that when needed.  Trying to control the vomitting through feeding amounts, etc. and medications helped lessen the vomitting.

Makinley was also very sensitive to noise and such.  Although she always was somewhat sensitive...again, medications that relaxed her seemed to help some. 

Feel free to come here for any questions you may have or just for an ear from those who have walked your path.

Glad you found us all here and im so sorry to hear of another child with Krabbes.

My Son Jack passed away last April.  he had a NG tube and he never really had any problems with it.  He would vomit but that was mainly due to the speed of the feeds, so we had to slow them down.

Startling and the sensitivity was also an issue, we did the following that really helped Jack.

He was swaddled when we were cuddling him and also to go to bed, we were able to stop this after a while.  This stopped the bigger jerky movements that he found painful.

We would also play a cd of lullaby music, the same one all the time and this helped too.

We also introduced signals to Jack so he knew that we were going to change him, move him etc.  This was mainly playing a certain mucical toy etc so he would anticipate what would happen next.

you can read about Jack at www.caringbridge.org/visit/jackmacpherson

mel x

Hello Bijay,

I too am so sorry to hear about Sarla. It most definitely is the worst thing that could happen to a parent and their child.

My daughter Zoe passed away 1/26/09 of Krabbes and I would like to share our experience with feeding tubes. We initially had an NG tube for Zoe which definitely aggrevated her gag reflex and caused her to vomit quite often. We chose to have the G-tube placed in hopes of making her more comfortable. Zoe continued to have problems with reflex and vomitting which progressively got worse until she lost the ability to gag or cough. I don't think the G-tube helped with her vomitting but I do think it helped with her comfort level. I know there are many Krabbe's kids that have great success with the G-tube and the recovery from the surgery is quite fast. However, every child is different and therefore the way they respond to different treatments vary. Whatever decision you make will be right for Sarla.

As for the sound sensitivity, our Zoe experienced this as well. Her medications seemed to help with that quite well. I think the med that helped with her sound sensitivity the most was Clonazepam (Klonopin). We also used Baclofen which really helped relieve her muscle spasms. Before we got the dosings right on her meds, white noise helped her to settle quite well. At night, I would turn the tv onto a "snow" channel and turn the volume up to drown out any other noise. She slept much better with white noise in the background.

I hope this helps you to make a more informed decision. You've come to the right place for advice and support. I'll be keeping your family and especially little Sarla in my thoughts and prayers.

Hi Bijay, I'm sorry to read that Sarla is having reflux & vomiting problems at the moment. I have brought another string to the top so that you can see what others have said on this subject.

You can use the "search" facility on this forum to find related topics. It is very easy & useful too.

Ken. XX

Hello Bijay,

I'm sorry I am so late to welcome you and the others to the board, but I have not been on here much.  I am so very sorry for you and your family.

I can't give you any advice on treatments and medications, because when our Linda went through it there was not much knowledge about the disease and no internet, so she didn't get anything.  All we could do was keep her as comfortable as we could.  You can read her story, if you wish, when you click on the www below.

I just noticed your birthday, and I couldn't help thinking: here we are, 25 years after we were losing our little girl, and there still is no universal screening.  Hopefully that will change in the very near future, so no other child and parents will have to go through it ever again.

Hugs...