My 13mnt old son was diagnosted with delayed emptying of the stomach a few months ago. The doctor has him on 4 different meds to treat the problem, however it doesn't seem as if anything is working. My son does not take in enough calories during the day. He is only at about 1/4 of what he should be. He is now on Neocate Junior because this is basically all that he will eat. He takes about 2-3 6oz bottles a day. The doctor at the Children's Institue had talked about puting him in as an impatient for 4-6 weeks for therapy. The doctor said it is extreme therapy inorder for the child to be able to function normally when they are discharged. I am having a really hard time with this. I am torn between what to do. I am a stay at home mom to 4 wonderful children right now. I want my son to get better, but at the same time, I don't want to miss 4-6 weeks of my other children's lives. I would have to stay with him during the duration of the therapy. Am I being selfish? I want to do what is best for him. Have any moms out there ever been through the impatient program at the Children's Institute? Or do you know someone that has? I would really like to know if the impatient therapy is worth it to have him be away from the home for so long. Thanks in advanced..
Hi, C.:
First of all, How do they know the child has delayed emptying of his stomach?
What medications is he on?
Why is he hosptialized? What are they doing for him that can't be done at home?
Just want to know. D.
C.,
I know you must feel torn about this situation, but I would encourage you to go ahead with the therapy for your baby. In the grand scope of time--and the 18 (or more) years you will have with all your children--6 weeks is very short. You can prepare for the time away by preparing notes or cards for you husband to give the others reminding them that you love them, and if they were sick, you would take care of them just like you are for the baby. We had a similar situation with 20 days in the hospital and the siblings were able to visit once their sister was out of intensive care. That was helpful, and I would really pay attention to them during their visits to remind them that they are important also. We didn't have time to prepare as it was just an emergency situation with the youngest almost dying from complications of RSV and pneumonia.... Once the baby is treated, all your lives should be easier and it will only benefit the whole family in the long run. Blessings,
My cousin's little boy went through the inpatient feeding program at the Children's Institute in Pittsburgh. The program made an amzing difference inhis life. His mom also had another child at home (one with special needs) and found it hard to decide as well. However, she decided it was best for her son and is glad she had him admitted. She stayed with him the majority of the time and was relieved by family members periodically so she could do an activity with her other child.
Each person has to look at their own situation, but please try to look at the long term. Short term sacrifices can be tough at the moment, but the long term is what really matters. Good luck to you and your son!!
Hi C.,
I am so sorry to hear about your son. I am not sure what I would do in this situation. I DO know that in the long term/big picture 4-6 weeks is a short time. Yes, it would be difficult to be away from your other children, but after your son is better, that will give more quality time for all of you together.
This may sound crazy, but if you are looking for someone to watch your three children, I would be happy to help. I live in the South Jersey area. I have an 18 month old daughter, and I am a SAHM right now - I have been an elementary teacher for 9 years, so have the experience/references.
Good luck with everything, and I will prayer for your son,
L.
Hi
Did you ever see the specialists at CHOP? They have a great GI department.
My son gets treatment for his eosinophilic esophagitis. We were very close to a feeding tube but found ways to increase his calories and get him to eat. Can he have soy? Bright beginnings has a pediatric drink that is 240 calories and dairy free. Was your son tested for allergies?
K.
CHOP has a similar program except you dont stay IN the hospital (you are there every day for about 4 weeks, all day, but you sleep at home). Might be slightly easier. We have been recommended for that program, but right now are just doing weekly feeding therapy there instead because we just cant make the intensive program work right now. We've see improvement with his eating for sure.
I'm not sure what the Childrens Institute is?
Sorry to hear that a Doctor would give any child 4 medication. You want to look for natural solution. Epsom salt in small amount has to be better than some medication with side effects. Prune juices natural solution.Ask your elders for natural solutions. My son and 2 nieces grew up on the Herblife products. Now my son begin 22 and my nieces 9 and 11 never had to take medication. Thank God for natural solutions
*sigh* Hi there!
My son is starting the outpatient therapy at CI this week. We had a choice and right now we chose to do outpatient. If we need to be more agressive we can but Im nervous about impatient skills transfering to home life.
My son has BPD, GERD and DGE we give him a handful of meds daily as well, sometimes natural cures do not work (we have tried, but without modern medicine my son wouldnt be alive so we need to keep on this course-KWIM? He was a 24wkr preemie).
PM me if you want to talk further.
You need a second opinion from another pediatric gastroenteroligist. Please don't take medical advice from other mothers on this site! If the therapy is the best thing for your son, you need to do it. There may be a Ronald McDonald house your other kids can come visit at sometime. Get your son through this the best way the doctors know how, and you will have more time for all your kids.
I don't know if you've made your decision yet, but I wanted to offer some words of encouragement . . . Our son was an inpatient in infancy, at a hospital that was a six hour drive from our home. I was there with him the whole time, and my husband traveled on the weekends. Although we didn't have older children at the time, other parents (at the Ronald McDonald House where we stayed) did. They made it work in several ways . . . some of of the kids came just for weekends, others came more often, a few home-schooled kids even stayed the whole time - whew, was that crazy! Now, three years later, I can honestly say that those six weeks are only a blur in our memory . . . you will get through :) Just do what's best for your son, and your other children will rise to the occasion too . . .
The only other suggestion I have, if you're on the fence, is to do something sooner rather than later. It's much better to spend time in and around medical facilities in September and October than once cold, flu and RSV season really gets going . . .
Good luck and God bless - your little guy needs you to be the best advocate for his health right now . . .
My son also has delayed gastric emptying. What medications is he taking?
C., Hi, although my daughter was never in the inpatient program at the Children's Institute she was a patient of one of the Dr's there and I have had a chance to talk to the Director of the Swissvale location. Personally I don't think you are going to find a better place or staff to take care of your son. Right now, for a breif time (what is 6 weeks in the span of a life?) you need to focus on your son and his health. Be honest with your children and explain what is going on and what you need to do to help him get better. They won't totally understand, but it is far more important to get him better sooner rather than later. Talk to your doctor some more, ask the hard questions....like what is the worst that can happen if you do this treatment or don't. Ask for ALL the treatment options avaliable to you. You could even consult with a second doctor before making that final decision. Do you have someone that will be able to help your husband and maintain your families schedule? Or someone that could help you with your son at the Institute so that you can get home at least for dinner daily? Think outside the box and don't be afraid to ask for and get help from friends and family. Take care & best wishes.
I don't know anything about the particular situation you are facing, but just wanted to let you know I understand the angst about leaving your kids. Over the past three years, my son's medical condition has required a few hospital stays (generally 1-2 weeks at at time) and many late night visits to the ER. My daughter goes to my parents' house when he needs to be at the hospital. Although I know she is in good hands it is hard to leave her.
My best advice is that if you determine this to be the best course of action for your son's health do it. Make plans for your children to be cared for. Explain to them why this needs to be done. Maybe give each of them special jobs to do while you are gone so they feel like they are helping out. Perhaps you can coordinate care so that someone can relieve you at the Institute so you can have dinner with your family every few nights or attend their activities. Does your husband have vacation time he can use or would he qualify for time off under FMLA? Best wishes to you and your family.
C.,
Definitely you should get all the medical information you need to make this decision as to if it is necessary or sufficiently beneficial for you son. But, I think your question here was asking about things from a mom-perspective, not a medical perspective. I also have 4 children in the same age range and I know how hard it would be to be away from them. Think about what kind of support you have from family, neighbors, church, etc. to be able to help you with the hospital stay. If you haven't done so, get a tour of Children's Institute and talk to more than one staff person (not just the doctor but one of the case managers, the head of the feeding program, the nurses on the floor, the speech therapists who work with the feeding program, etc.). Ask them if you can talk to other families who have been in the feeding program. I used to work for CI (in a different program) and I think if you have to do something like this CI is the best place to be. They do a very good job.
A.
Have you seen a stomach doctor? Maybe try to see one at Childrens hospital for a second opinion. If the 6 week therapy is necessary can you and family members take turns on who is there, maybe a grandparent so you can go to the other childrens activities? I would definately get a second opinion, and see if there are any other options.
