Hi everyone, I posted a while a go about my special needs child who has a multitude of issues that the doctors can't figure out. She has a undiagnosed geneitc condition that continues to elude the doctors.
She has suffered with many different ailments.
We tried half TPN- just the multivitamin, my daughter was like a different child. She was so happy, it was amazing.
The doctors were reluctant to try the lipids because in 2005 she developed hives on TPN for pancreatitis.
We started back on G-tube feeds gradually and now my daughter is starting to cry again.
A couple of questions?
My daughter gets 15mg of prevacid 2 times a day.
If we give this med to her on a empty stomach she vomits it up. Does this sound familiar?
So now we give her the prevacid with g-tube feeds, this morning we gave her the usual dose of prevacid and then 2.5 hours later - we drained her g-tube for bile and the prevacid came right back out. Seems like a long time for the prevacid to be sitting there.
The doctors told us to stop feeds when she gets upset and do pedialyte for 2 days. Bowel rest?
Any thoughts?
Also has anyone had hives on the Lipids of TPN?
Also my daughters Lipase rose to over 600 in hospital but was very happy. The docs did not feel she was developing pancreatitis. They have no idea why her lipase flucatuates all the time and is chronically elevated.
We have officially pulled her off the domperidone, she has been on it for about 6months with no change in her discomfort.
They did an ultrasound which looked fine and an endocospy and sigmoidoscy and it looked pretty good .The stomach was a bit red, but not too bad, just waiting on the biopsy results.
Thanks so much for letting me ramble. We are so worried about my girl, she has struggled her whole life.
Naomi- mom to Lindsay 13 yrs old in Canada
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Tried TPN-lots of questions???
- By naomi12345
- Posted April 11, 2009 at 4:26 pm · 8 replies
- In Pediatric
- Shared with the public
Explore topics in this discussion:
Dehydration Cancer Surgery Pain Pancreatic cancer Prevacid Gastroparesis
8 replies
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- By chewy1
- Posted April 11, 2009 at 10:09 pm
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Naomi,
I wish I had some answers for you but I just started TPN on Thursday so I don't know myself what I'm doing or what really is going on. I hope someone else can provide you some answers. It does seem strange that if Lindsay was acting happy on the TPN that they would be so quick to stop it. I just don't really understand so many things in the medical world.
Judy
- By Novagrad
- Posted April 12, 2009 at 11:09 am
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Naomi -
Have your doctors talked to you about Omagevan? Itls TPN with fish oil instead of lipds. Children's Hospital of Boston has been doing the studies with it and your doctor can request it from them (just google the word and either Children's or Mass General will come up). It has really saved lives for those who's bodies have difficulty tolerating regular TPN. My doctors have considered it for me with my rough TPN history.
Mimi
- By macbeth719
- Posted April 12, 2009 at 6:41 pm
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THe hives from lipids leads me to believe she is allergic to eggs. Lipids aren't the greatest for one with pancreatitis but is helpful in small doses. Does she have a g tube to drain the stomach secretions? That may help. Sounds like the pancreas may be a source of her pain. When I was on TPN, I had very minimal pancreatic pain. Maybe they need to do an EUS to look at the pancreas (best way to evaluate it). I feel for your daughter because I suffered for many years, since I was 15, with this. I currently have a PEG-J tube for feeding and decompression. The J feedings are easier on my pancreas where I do not have to take enzymes. If the pancreas is the issue, I can talk to you about what treatments work for me. You can e-mail me at tbrown719@sbcglobal.net at any time. Good luck and prayers for your daughter.
Teresa
- By macbeth719
- Posted April 12, 2009 at 6:45 pm
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BTW, the Prevacid needs to work in the small bowel so if it is not reaching there, she is not getting the full benefit. She should also take it 1/2 hour before a high protein meal as this is what makes a PPI work the best. Do you drain her tube prior to feedings? 2 hours in the stomach is a long time for something to stay, maybe she has gastroparesis.
I hope for the best.
Teresa
- By naomi12345
- Posted April 13, 2009 at 12:07 am
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Hi, thanks everyone for the suggestions.
Teresa, my daughter does have a g-tube- not J-tube and we are draining her g-tube and venting her frequently.
She has very bright yellow liquid coming out sometimes. She has never had a EUS. The doctors don't believe it is her pancreas, which is so frustrating for me. Her ultrasound is normal and past CT scans were normal. As for her prevacid, this is tricky, she will vomit the prevacid up on an empty stomach. She is currently being fed Neocate Jr. elemental diet. I would love to hear more suggestions?
We tried pancreatic enzymes a few years ago and she was still in pain, she was orally eating at the time.
Her aversion for food got worse and worse until we had to put the g-tube in. Can you tell me about the Peg -J-tube and how you decompress to help with pain.
Thanks so much.
Do you get a lot of yellow bile stuff coming out of your feeding tube when you decompress. Is this normal?
Naomi- mom to Lindsay 13.5 yrs old
- By deb1
- Posted April 13, 2009 at 7:31 am
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Hello-Naomi-I was on tpn from 12/07 until just 2 weeks ago for pancreas issues and gastroparesis which seem to go hand in hand. I had my 3rd line infection and they would not restart it. I had a G-J tube prior to tpn and almost died from malnutrition and dehydration because I could never run the tube feeds at a high enough rate to get enough calories-my intestines would not handle it and I had many of the issues your daughter is having-with vomiting bile while on tube feeds. Also-I would be so nauseated I couldn't stand it. While hospitalized this last time they tried again with the J tube but it was through my nose but well past the ligament of trietz so it didn't bother my pancreas so much but I still had the same probs as before-nausea that would not stop and the bile vomiting. I've talked with a number of pancreas patients that have this issue with tube feeds and they have the same problem-don't know why other than the pancreas when inflammed or stimulated in anyway does lead to gut dysmotility-stomach and intestines.
Does your daughter have hereditary pancreatitis or pancreas divisium? Have you considered the total pancreatectomy with auto islet transfer? I know of a couple of teenagers who have just had this surgery. I also know of several people who have and are doing remarkably well considering they have had their pancreas removed. I only mention this because your daughter is 13, this disease will not go away or get better. I would not want her to be living on narcotics for the rest of her life and ending up with a necrotic bowel. The doctors will only do tpn for pancreatitis for so long-then you are left with a tube or just getting by with what you can and malnutrition.
Oh-and for not believing it's her pancreas-baloney. If she has had elevated enzymes-it's her pancreas. There is something called minimal change chronic pancreatitis that will never show on any CT, MRCP, ERCP or even EUS-up to 20-40% never show. MY pancreas does not show any damage yet my enzyme levels will be very elevated. I've had doctors tell me the same junk until I found good pancreas doctors who know about the pancreas. I also suggest you have her tested for autoimmune disease as well as hereditary pancreatitis if you have not done so. If she has Hereditary-her chances of developing pancreatic cancer are very high. This would be reason to consider the tp-if not now-at some point. I don't say these things lightly-I've been there and walked the road. Doctor's (98%) of them have no clue about the pancreas and will never admit it's your pancreas. They will label it as everything under the sun except the pancreas.
Praying things get better for you both!
I really pray that everything works out for your daughter.
- By alphabubo
- Posted April 13, 2009 at 10:12 am
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Dear Naomi,
I am sorry that your daughter has been through so much. I at one time too had trouble with keeping down my antiacid reflux medication when I first had trouble with gastroparesis and reflux together. I have gotten Prevacid through an IV before, and what also helped at other times is when I had a j-tube such that I could put my reflux medication into it and thus bypass the stomach so that it would be more likely that I would absorb it and not throw up the medication. I have also had a g-tube which I am currently using for feeding at night and for draining the stomach when needed. Sometimes what comes out is yellow. I think that this is normal as it is stomach bile. However, if you are uncertain of anything, I would definitely ask your doctor.
I do not have a PEG j-tube as mine was placed through a minimally invasive surgery. I do have a PEG tube currently. In comparison, the minimally invasive surgery for me took a little longer to recover. The j-tube is not really meant for decompression or at least I have found it difficult to drain anything from it. It is also less able to handle bolus feedings, or large volumes in a small amount of time, and is usually used to give a certain volume over a longer period of time with a pump. You can ask for an ambulatory pump so that while feeding one does not have to be hooked up to a pole all of the time.
I was on TPN, including lipids, on several occasions and did not ever develop hives, but of course each person reacts differently to each thing. I also believe that carnitine can be added to help with the digestion of fats. I do not though have much experience with issue of lipase though.
I hope that you can get some answers soon. I will be sure to keep both of you in my thoughts and prayers. Many, many hugs.
Warm regards,
Bobbiejo
- By naomi12345
- Posted April 16, 2009 at 6:01 pm
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Thanks everyone for their responses.
Things haven't been too bad lately. So far she is tolerating her feeds right now.
Not much bile coming out.
I think the domperidone made her worse and I have stopped her miralex as well
Just watching and waiting.
Thanks so much
Naomi- mom to Lindsay
Canada
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