Post by Amy Lombardi on Apr 16, 2009 16:09:26 GMT -5
Subject:Question about Feeding Tubes
Valerie
Feb 19th, 2009 - 7:58 AM
My son has just been diagnosed and has uncontrolled seizures and has almost lost his ability to walk and use his hands. He still has perfect vision go figure. My question is about feeding tubes. At what point do you decide if that is right for your child?
I am having a hard time as a parent right now. Everything I am reading talks about feeding tubes. Has any parent decided that was not the right option? Right now I am feeling that I don't want him to suffer any more than he has to. When the time comes that he can no longer consume food I may change my mind. I am having a hard time finding parent that made this choice.
Thanks for reading my vent. And God bless all of these poor children and families.
Chris Geer
Feb 19th, 2009 - 9:53 AM
My son Jacob (age 6) had other issues prior to his diagnosis of Batten Disease that resulted in him having a feeding tube placed at the age of 20 mos. At that time, he had stopped eating and drinking everything so we had no choice. As nervous as I was, I made it through the decision and I don't regret him having it one bit. We got to the point where Jacob would eat a 100-200 cals a day oraly (still no drinking). We did go to a feeding clinic to try and ween him. We were out of state for 9 wks doing this but that is also when his seizures began. We stuck to the program and came home 100% oral fed. Mostly pureed foods so we could add cals to it. His 100% oral feeding did not last long. The stress caused more seizures and we made the decision to abandon oral feeds and go back to tube feeding. Months later, he was diagnosed with this. I am telling you this because, as much as I feared this and hated the thought of it in the beginning, it has been a huge stress reliever. You can still feed your son orally and if you find he has not eaten enough over the course of the day, then you have a backup. You can keep him hydrated if he gets sick or during the hot summer days. Medications are easier to give and they get the full dose. I try to find the better parts of having it. I thank God for him having it. You need to do what you feel is best for him. Make sure you are at peace with your decision. Ask yourself it this will give him a better quality of life. Thinking of you!
Brandy Wempner
Feb 27th, 2009 - 9:14 PM
Oh how familuar this sounds. My son has had his feeding tube for 3 weeks now (he is 5 and half). I was in the same boat as you. I felt horrible doing this to him.But,..... it is the best decision i have made to date. He is so happy and getting all the nutrients and meds he needs, the best part, i don't have to stress over feeding times. If he feels like eating, he does, if not...... well, it gives us a way.
I completly understand the uncertanty of it, but i think it is a wise choice.
Mary Bortz
Feb 19th, 2009 - 1:55 PM
I understand your concern about placing the tube. We had the girls tubes put in to make it easier to keep them hydrated and for giving medications more so than to provide adequate nutrition. They were usually eating ok but were not getting enough fluids and were sometimes unable to swallow their meds. As the years went by we relied on the tube for all sustenance. Both girls were still verbal and active when they had their tubes placed so there was no doubt for us to continue their quality of life. If I had to make the decision later on in the disease course I might have struggled more with ethics. However, medically the feeding tube was a great advantage. We would add ice to the bag to help bring down body temperature to provide comfort and during the last weeks of Abby's life it was the only way to administer pain/comfort meds. Her veins wouldn't tolerate a pic line and the attempt to place a central line was unsuccessful - so -thank God for the feeding tube. For us it not only provided nutrition but some comfort for her at the end. And yes, some parents have opted not to place a feeding tube and hopefully they will share their experiences, too.
Tanya
Feb 19th, 2009 - 4:39 PM
Both of our sons have feeding tubes. I feel the best time is when you feel frustrated that feeding is getting too hard,or taking too long. As long as they are not aspirating. I really like the feeding tube. The boys were still able to eat orally.
Tanya Elson
Feb 25th, 2009 - 7:45 AM
Hi Valerie. A piece of advice my husband and I have found really useful came from our hospital ethics team. They suggested that when it comes to decision making about whether or not to proceed with medical interventions we would 'just know' what was right for our daughter Isla, based on whatever was happening for her at the time. When Isla started having swallowing difficulties and was not getting sufficient fluids, but was otherwise well and healthy despite the rapid progression of her disease, it was a very simple decision to get the feeding tube.
I hope this helps you too.
Dawn
Feb 27th, 2009 - 6:12 AM
I know that is hard to deal with, but I would have put my son's G-tube in sooner if I had know the positive effects that the tube has to offer. My son is now 7 and we have had the tube in now for over a year now. We had the tube put in for Medication reasons (was taking his breath away, and hard to get it down). Since putting it in I know he is getting all that he needs, the weight gain proves it, he looks healther, and got stronger. This is a decision that you as a parent will have to decide, my doctor asked me if I had any regrets getting this done and my answer was "NO". Take care and all the best to you and your family!
Judy
Mar 6th, 2009 - 10:42 AM
My son is 17 and is progressing with juvenile we had a eval done with the hospice/pallative care doctor and are having a gtube placed for meds and fluids not with the intent for feeding he still eats but skips meal get a grimace smile where he cant eat and forgets he has food in his mouth so we have to work at feedings alot.. But he layed out my choices a gtube for meds or the using a vein either by shots or a pic line meds are important for seizure control and all the meds I know from losing Mitchell hospice will come in with there own meds for comfort and I do want him to be able to get them and keep him at home with us the doctor did say he would be at a higher risk to be hospitalized or in a hopice wing at the end of life if we choose to go through the vien for meds. I did not want the tube either but i see the importance we actually are getting it next monday the 9th and I am somewhat a wreck hoping it all goes well we actually are working with the same doctors and nurses we did with Mitchell I did use a feeding tube with him and did feedings but his progression was so advance he did not benifit from the feedings I was unsure what to do also and called in the pallative care to do the eval I do feel informed I guess thats helping just alot of emotions
if you do facebook look me up briggs.judy@yahoo.com
Tanya Elson
Mar 11th, 2009 - 4:59 AM
I hope all went well with your son's tube insertion, Judy.
Best wishes.
Valerie
Feb 19th, 2009 - 7:58 AM
My son has just been diagnosed and has uncontrolled seizures and has almost lost his ability to walk and use his hands. He still has perfect vision go figure. My question is about feeding tubes. At what point do you decide if that is right for your child?
I am having a hard time as a parent right now. Everything I am reading talks about feeding tubes. Has any parent decided that was not the right option? Right now I am feeling that I don't want him to suffer any more than he has to. When the time comes that he can no longer consume food I may change my mind. I am having a hard time finding parent that made this choice.
Thanks for reading my vent. And God bless all of these poor children and families.
Chris Geer
Feb 19th, 2009 - 9:53 AM
My son Jacob (age 6) had other issues prior to his diagnosis of Batten Disease that resulted in him having a feeding tube placed at the age of 20 mos. At that time, he had stopped eating and drinking everything so we had no choice. As nervous as I was, I made it through the decision and I don't regret him having it one bit. We got to the point where Jacob would eat a 100-200 cals a day oraly (still no drinking). We did go to a feeding clinic to try and ween him. We were out of state for 9 wks doing this but that is also when his seizures began. We stuck to the program and came home 100% oral fed. Mostly pureed foods so we could add cals to it. His 100% oral feeding did not last long. The stress caused more seizures and we made the decision to abandon oral feeds and go back to tube feeding. Months later, he was diagnosed with this. I am telling you this because, as much as I feared this and hated the thought of it in the beginning, it has been a huge stress reliever. You can still feed your son orally and if you find he has not eaten enough over the course of the day, then you have a backup. You can keep him hydrated if he gets sick or during the hot summer days. Medications are easier to give and they get the full dose. I try to find the better parts of having it. I thank God for him having it. You need to do what you feel is best for him. Make sure you are at peace with your decision. Ask yourself it this will give him a better quality of life. Thinking of you!
Brandy Wempner
Feb 27th, 2009 - 9:14 PM
Oh how familuar this sounds. My son has had his feeding tube for 3 weeks now (he is 5 and half). I was in the same boat as you. I felt horrible doing this to him.But,..... it is the best decision i have made to date. He is so happy and getting all the nutrients and meds he needs, the best part, i don't have to stress over feeding times. If he feels like eating, he does, if not...... well, it gives us a way.
I completly understand the uncertanty of it, but i think it is a wise choice.
Mary Bortz
Feb 19th, 2009 - 1:55 PM
I understand your concern about placing the tube. We had the girls tubes put in to make it easier to keep them hydrated and for giving medications more so than to provide adequate nutrition. They were usually eating ok but were not getting enough fluids and were sometimes unable to swallow their meds. As the years went by we relied on the tube for all sustenance. Both girls were still verbal and active when they had their tubes placed so there was no doubt for us to continue their quality of life. If I had to make the decision later on in the disease course I might have struggled more with ethics. However, medically the feeding tube was a great advantage. We would add ice to the bag to help bring down body temperature to provide comfort and during the last weeks of Abby's life it was the only way to administer pain/comfort meds. Her veins wouldn't tolerate a pic line and the attempt to place a central line was unsuccessful - so -thank God for the feeding tube. For us it not only provided nutrition but some comfort for her at the end. And yes, some parents have opted not to place a feeding tube and hopefully they will share their experiences, too.
Tanya
Feb 19th, 2009 - 4:39 PM
Both of our sons have feeding tubes. I feel the best time is when you feel frustrated that feeding is getting too hard,or taking too long. As long as they are not aspirating. I really like the feeding tube. The boys were still able to eat orally.
Tanya Elson
Feb 25th, 2009 - 7:45 AM
Hi Valerie. A piece of advice my husband and I have found really useful came from our hospital ethics team. They suggested that when it comes to decision making about whether or not to proceed with medical interventions we would 'just know' what was right for our daughter Isla, based on whatever was happening for her at the time. When Isla started having swallowing difficulties and was not getting sufficient fluids, but was otherwise well and healthy despite the rapid progression of her disease, it was a very simple decision to get the feeding tube.
I hope this helps you too.
Dawn
Feb 27th, 2009 - 6:12 AM
I know that is hard to deal with, but I would have put my son's G-tube in sooner if I had know the positive effects that the tube has to offer. My son is now 7 and we have had the tube in now for over a year now. We had the tube put in for Medication reasons (was taking his breath away, and hard to get it down). Since putting it in I know he is getting all that he needs, the weight gain proves it, he looks healther, and got stronger. This is a decision that you as a parent will have to decide, my doctor asked me if I had any regrets getting this done and my answer was "NO". Take care and all the best to you and your family!
Judy
Mar 6th, 2009 - 10:42 AM
My son is 17 and is progressing with juvenile we had a eval done with the hospice/pallative care doctor and are having a gtube placed for meds and fluids not with the intent for feeding he still eats but skips meal get a grimace smile where he cant eat and forgets he has food in his mouth so we have to work at feedings alot.. But he layed out my choices a gtube for meds or the using a vein either by shots or a pic line meds are important for seizure control and all the meds I know from losing Mitchell hospice will come in with there own meds for comfort and I do want him to be able to get them and keep him at home with us the doctor did say he would be at a higher risk to be hospitalized or in a hopice wing at the end of life if we choose to go through the vien for meds. I did not want the tube either but i see the importance we actually are getting it next monday the 9th and I am somewhat a wreck hoping it all goes well we actually are working with the same doctors and nurses we did with Mitchell I did use a feeding tube with him and did feedings but his progression was so advance he did not benifit from the feedings I was unsure what to do also and called in the pallative care to do the eval I do feel informed I guess thats helping just alot of emotions
if you do facebook look me up briggs.judy@yahoo.com
Tanya Elson
Mar 11th, 2009 - 4:59 AM
I hope all went well with your son's tube insertion, Judy.
Best wishes.