My two year old son won't stop vomiting

Posted by cryinlion6423 @cryinlion6423, Oct 31 6:08pm

My son is 2 years old, and extremely developmentally delayed. Since the end of September he hasn't been able to keep formula down, he just throws it up. His mother and I started diluting the formula with Pedialyte and it was okay for a while, but as we increased the formula in the formula/Pedialyte ratio (because he needs the calories), he cannot tolerate it and vomits everything up until he's dry heaving. We kept starting over with all Pedialyte but then he started throwing that up too. He has a G-tube and is only fed through that.. He can't keep his seizure meds down or even water at this point. His doctor told us to bring him to the hospital and we've been here since Wednesday 10/28. We are at Children's hospital of Michigan which is where he is always treated and its one of the top hospitals in the state. He still can't keep anything down and the doctors have not figured it out. They just keep trying to give him Pedialyte, but he keeps vomiting it all up until dry heaving. They aren't even looking for a problem anymore they just keep thinking he's miraculously going to get better and tolerate feeds all of a sudden(they just keep reiterating to us that he needs to eat like we are idiots and don't know that). We are at a loss as our boy is really suffering. Does anyone know what could be going on? We've had Gastrointestinal, Neurology, and Urology examine him and finding nothing. His bloodwork is fine and vitals are good. He's getting IV fluids and meds through IV. Please share any opinions as I am lost.

Hi @cryinlion6423, I can imagine that you are very concerned for your little boy and at your wit's end when not getting answers. I'm tagging fellow members @astaingegerdm @concernedmtnmom @fourof5zs @eramotla @mutter3 and @kristap31 to this discussion to see if they might be able to share some thoughts or avenues to pursue.

Has your son suffered further seizures since he hasn't been able to keep anything down? Or was he prescribed anti-seizure medication because of the vomiting?

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@cryinlion6423 – I understand how frustrated and scared you are now. It doesn’t sound as if your son is making progress.
What seizure meds is he on? Any other meds?
When seen by Gastroenterology did they look into his stomach to see if there was inflammation or irritation? Does he get IV fluids too? Does he urinate normally? Weight loss? Sorry, lots of questions!
Neurology didn’t find anything I assume. Has he had a CT or MRI of the brain now? Vomiting like this can also come from the brain.
I would appreciate it very much if you could add any more information.

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@cryinlion6423
Have they done any test? CT scan and Endoscopy? I think those two things would tell what is going on… and maybe a colonoscopy. Does he have allergies to anything? Has his formula changed?

ZeeGee

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I am very sorry you are going through this. I won't go into detail about my son's past, but it is extensive and involves an unknown cause multi-organ failure, GI issues and surgeries, extended PICU stay when he was six months old. Here are some things I have learned from his medical journey, communicating with healthcare providers and being a parent when answers are non-existent. I recommend asking a lot of direct, specific questions to your healthcare providers. Take some time to formulate what exactly you want to know, write questions down, ask respectfully and take notes. You are your child's best advocate, and physicians will/should respect your involvement in your child's care.

For example, in your situation I might say something like, "It appears that we are just waiting to see if my son's GI issues resolve on their own. Is this correct? If so, how long are you willing to wait until further testing/diagnostic procedures, etc. are warranted?" "Are you concerned about the cause of this vomiting? If not currently concerned, at what point (what new symptoms) would you be concerned?" "What are some of your theories about the possible causes of my son's vomiting?" "Will you please give me a big picture explanation of my son's situation with his GI issues and how these could relate to his known developmental delays, seizures, etc.?" "I understand and appreciate that different specialists have tried to figure out the cause of my son's vomiting and have not found any answers. However, I would like more education on what is going on in his situation." Sometimes having greater knowledge and understanding of what they have ruled out is helpful when there is no known cause. (If you feel like education is helpful to you and not too overwhelming).

Also, if you feel you have exhausted all resources at that hospital, you can always seek a second opinion from a different facility. My son was seen at Children's Hospital Colorado which is ranked #1 in the nation for gastroenterology. However, I would first exhaust all resources at the hospital you are currently being treated at. I know how frustrating it is to not have answers (every department was involved in my son's PICU stay and none could find any answers for the cause of his multi-organ failure) but it is good to show respect for the healthcare providers, ask direct questions with definite timelines attached (to give you a better idea what they are thinking) and educate yourself as much as possible. Best wishes and try to take care of yourself too…don't be afraid to ask for friends and family to help you with meals, etc. Living in a hospital is exhausting and incredibly stressful when your child is suffering. Wishing you strength!

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Hello again, sorry I just wanted to add one more thing. When multiple departments/specialists are involved in trying to figure out what is going on…something I found very helpful was to make a list for each department then specific questions for each. I kept it close by so when someone from that department came in the room I could quickly find my questions for them. Otherwise I tended to forget what I wanted to ask. If the specialists are not coming in to your room anymore, you can ask the attending to have someone from neurology, urology, etc. come back to give you another recap of what they learned/ruled out from their assessment. We did that many times and they were happy to come in and review with us. Sometimes physicians don't want to overwhelm you with what ISN'T a problem (things they have ruled out) but it may SEEM as if they haven't given much thought to possibilities. If you hear from them what possibilities they thought about for your child's symptoms, it may give you more peace of mind.

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@kristap31

I am very sorry you are going through this. I won't go into detail about my son's past, but it is extensive and involves an unknown cause multi-organ failure, GI issues and surgeries, extended PICU stay when he was six months old. Here are some things I have learned from his medical journey, communicating with healthcare providers and being a parent when answers are non-existent. I recommend asking a lot of direct, specific questions to your healthcare providers. Take some time to formulate what exactly you want to know, write questions down, ask respectfully and take notes. You are your child's best advocate, and physicians will/should respect your involvement in your child's care.

For example, in your situation I might say something like, "It appears that we are just waiting to see if my son's GI issues resolve on their own. Is this correct? If so, how long are you willing to wait until further testing/diagnostic procedures, etc. are warranted?" "Are you concerned about the cause of this vomiting? If not currently concerned, at what point (what new symptoms) would you be concerned?" "What are some of your theories about the possible causes of my son's vomiting?" "Will you please give me a big picture explanation of my son's situation with his GI issues and how these could relate to his known developmental delays, seizures, etc.?" "I understand and appreciate that different specialists have tried to figure out the cause of my son's vomiting and have not found any answers. However, I would like more education on what is going on in his situation." Sometimes having greater knowledge and understanding of what they have ruled out is helpful when there is no known cause. (If you feel like education is helpful to you and not too overwhelming).

Also, if you feel you have exhausted all resources at that hospital, you can always seek a second opinion from a different facility. My son was seen at Children's Hospital Colorado which is ranked #1 in the nation for gastroenterology. However, I would first exhaust all resources at the hospital you are currently being treated at. I know how frustrating it is to not have answers (every department was involved in my son's PICU stay and none could find any answers for the cause of his multi-organ failure) but it is good to show respect for the healthcare providers, ask direct questions with definite timelines attached (to give you a better idea what they are thinking) and educate yourself as much as possible. Best wishes and try to take care of yourself too…don't be afraid to ask for friends and family to help you with meals, etc. Living in a hospital is exhausting and incredibly stressful when your child is suffering. Wishing you strength!

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@kristap31

You have given such a great reply. I have a distant cousin who has a son that has been on a feeding tube since birth. I have lost count of his age, but think around 10. He is non-verbal.. now uses sign language and has many things going on … seizures have been hard to control. He is not able to walk. My cousin and her husband have dealt with so many issues like you and the original poster here. My cousin is not only distant in relationship, but also distance. So I only see a small bit of what they go through.

I had a feeding tube for a little over a year. It is different than a child having a g-tube. I had problems with wanting to vomit after I had open abdominal surgery. In my case it was swelling. It was miserable dry heaving for hours. (I had gastric bypass in a previous surgery, so g-tube went in remnant stomach and not the pouch which is now my stomach. I stopped my feeding tube and still was nauseous.) I got relief with an NG tube at the hospital.. it served as a pump to remove mucus from my pouch. Steroids were not working quickly at reducing the swelling. I had two endoscopies in a week for ablations. Between the steroids and the ablations the swelling went away. My husband was my advocate. He was so exhausted, but he made it through. That was my third abdominal surgery within 3 years.

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@fourof5zs

Thank you for sharing your story. It is helpful hearing other people's experiences with abdominal surgeries, NG tubes and GI issues. You may have read my son's story in an earlier post, but I don't know how much I mentioned of his GI issues. He was a previously healthy six month baby…thriving, meeting all his milestones. He had occasional blood in his stools and is it was unaccompanied by any other symptoms (no pain, vomiting, he was normal weight active and happy) his family physician was not too concerned. He said to try eliminating dairy from his diet. It still had not gone away after several months (Owen still thriving) so I requested a GI consult. Then, Owen got his six month immunizations and the next day became lethargic. No fever, just completely different…not eating, then he threw up. These were all new symptoms. I took him immediately back to the doctor. I say this with trepidation because it still gives me chills: She sent us home and told us to give him Tylenol. That night Owen was not right. He was whimpering all night and vomited again in the morning. My husband and I felt so torn…we didn't know what to do. We knew Owen was not himself, and yet he had no fever. We felt we were being overly cautious, but we took him to the ER. Vital signs were normal, they thought he probably just was not feeling well from shots. He asked if I would like him to do some testing and I said yes, aware that the history of bloody stools could mean something else was going on. An abdominal ultrasound showed an inflamed colon. They sent us to Children's Hospital Colorado but there was no urgency…no sirens, the paramedic said he would probably be back in a day or two.
Fast forward to CHCO ER after hours of waiting for test results/bloodwork to return. I was just sitting there holding his limp body for hours, wondering what was going on. At that point I felt an intense need to convince these providers that this was NOT normal for Owen. He was not resting or napping or just a little "off." As all his VS were still normal, no fever, I felt almost foolish doing this. At one point there were several nurses and the ER physician in his room just observing him. They were all staring at him as he lay there limp. At that point I thought his breathing was abnormal. I told them, "I don't think his breathing is right. Something is going on." His bloodwork came back and all his labs were off. Vital signs still normal. They did not know what the bloodwork indicated but said he was going to the PICU as soon as a room was available. At that point my heart dropped. I knew this was extremely serious but had no idea what was going on with him. Two days ago he was smiling, sitting up, playing…

In the PICU he was hooked up to all their monitors, at this point there were no interventions because they were trying to figure out what was happening. I remember standing by his isolette and holding his still hand, rubbing his head. I noticed his body was looking ashen. I immediately told the nurse nearby and a swarm of people came in. I had to stand on the side of the room watching in terror as they intubated Owen. I will never forget the color seeping from his body and the sound of the his oxygen monitor beeping lower and lower. From there Owen rapidly progressed into multi-organ failure. One body system after another failed. This was all one day after taking him to our family physician. Owen's kidneys completely shut down and he was put on a CRRT machine which is not intended for six month olds. It directly cleans the blood and is basically a kidney outside the body. Not many hospitals have them, and even putting an infant on one is dangerous. We had to sign a waiver that we were willing to risk it. Without it he would have died. His liver was failing and his respiratory system and cardiovascular system tanked. He was put on triple vasopressors and when his pressure was still not recovering (he was about to die) they decided to put him on ECMO (heart lung bypass). My husband and I had to say goodbye to him. I truly thought that was the last time I would see Owen alive. The situation was urgent, so there was very little time to say goodbye. We had to wait in the waiting room, my heart was frozen. The surgeon came out in ten minutes. I knew that was too soon, and I thought he had died. She said right before the incision was made into his artery the attending said his BP went up a little. She wanted to wait for the ECMO. They called it off.
After that, his body went into an auto-inflammatory state. His blood vessels were leaking and he was being pumped with blood products, fluids, vasopressors, steroids, antibiotics. All during this time every department was trying to figure out what was causing his organ failure. Every kind bloodwork imaginable was done. No answers. He was still going downhill, so they decided to do an exploratory laparotomy to see what was going on inside…during the course of his PICU stay he had several open belly surgeries. The only thing they found was an inflamed colon and a lot of fluid buildup. No dead bowel or signs of infection. He ended up with a colostomy to try to divert stool from the inflamed sigmoid colon.
I don't want to make this too long (He has a Caring Bridge site that is open to the public under "Prayers for Owen" if you would like to see his whole, continuing medical journey) After he was discharge to the floor, he spent three weeks vomiting and with a NG tube. They wanted to give him a g-tube but we really resisted that. We took a class to care for his NG tube at home (three and a half hours away from CHCO =) and got a lot of practice putting it back in an eight month old by that time! After several months of trying to get him to eat and wean off the NG tube feedings, he finally started drinking a bottle. Several months after that his colostomy was reversed. There is a lot more to the story, but we are thankful THAT part is over! He is not almost three years old, still no answers as to why he went in to multi-organ failure. He has lasting affects from the hospital stay including a compartment syndrome injury to his left leg which has required surgery and will need more surgeries this year. He is a fighter and a bright little boy. We are grateful for everyone who has helped him on this crazy journey!

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@kristap31

@fourof5zs

Thank you for sharing your story. It is helpful hearing other people's experiences with abdominal surgeries, NG tubes and GI issues. You may have read my son's story in an earlier post, but I don't know how much I mentioned of his GI issues. He was a previously healthy six month baby…thriving, meeting all his milestones. He had occasional blood in his stools and is it was unaccompanied by any other symptoms (no pain, vomiting, he was normal weight active and happy) his family physician was not too concerned. He said to try eliminating dairy from his diet. It still had not gone away after several months (Owen still thriving) so I requested a GI consult. Then, Owen got his six month immunizations and the next day became lethargic. No fever, just completely different…not eating, then he threw up. These were all new symptoms. I took him immediately back to the doctor. I say this with trepidation because it still gives me chills: She sent us home and told us to give him Tylenol. That night Owen was not right. He was whimpering all night and vomited again in the morning. My husband and I felt so torn…we didn't know what to do. We knew Owen was not himself, and yet he had no fever. We felt we were being overly cautious, but we took him to the ER. Vital signs were normal, they thought he probably just was not feeling well from shots. He asked if I would like him to do some testing and I said yes, aware that the history of bloody stools could mean something else was going on. An abdominal ultrasound showed an inflamed colon. They sent us to Children's Hospital Colorado but there was no urgency…no sirens, the paramedic said he would probably be back in a day or two.
Fast forward to CHCO ER after hours of waiting for test results/bloodwork to return. I was just sitting there holding his limp body for hours, wondering what was going on. At that point I felt an intense need to convince these providers that this was NOT normal for Owen. He was not resting or napping or just a little "off." As all his VS were still normal, no fever, I felt almost foolish doing this. At one point there were several nurses and the ER physician in his room just observing him. They were all staring at him as he lay there limp. At that point I thought his breathing was abnormal. I told them, "I don't think his breathing is right. Something is going on." His bloodwork came back and all his labs were off. Vital signs still normal. They did not know what the bloodwork indicated but said he was going to the PICU as soon as a room was available. At that point my heart dropped. I knew this was extremely serious but had no idea what was going on with him. Two days ago he was smiling, sitting up, playing…

In the PICU he was hooked up to all their monitors, at this point there were no interventions because they were trying to figure out what was happening. I remember standing by his isolette and holding his still hand, rubbing his head. I noticed his body was looking ashen. I immediately told the nurse nearby and a swarm of people came in. I had to stand on the side of the room watching in terror as they intubated Owen. I will never forget the color seeping from his body and the sound of the his oxygen monitor beeping lower and lower. From there Owen rapidly progressed into multi-organ failure. One body system after another failed. This was all one day after taking him to our family physician. Owen's kidneys completely shut down and he was put on a CRRT machine which is not intended for six month olds. It directly cleans the blood and is basically a kidney outside the body. Not many hospitals have them, and even putting an infant on one is dangerous. We had to sign a waiver that we were willing to risk it. Without it he would have died. His liver was failing and his respiratory system and cardiovascular system tanked. He was put on triple vasopressors and when his pressure was still not recovering (he was about to die) they decided to put him on ECMO (heart lung bypass). My husband and I had to say goodbye to him. I truly thought that was the last time I would see Owen alive. The situation was urgent, so there was very little time to say goodbye. We had to wait in the waiting room, my heart was frozen. The surgeon came out in ten minutes. I knew that was too soon, and I thought he had died. She said right before the incision was made into his artery the attending said his BP went up a little. She wanted to wait for the ECMO. They called it off.
After that, his body went into an auto-inflammatory state. His blood vessels were leaking and he was being pumped with blood products, fluids, vasopressors, steroids, antibiotics. All during this time every department was trying to figure out what was causing his organ failure. Every kind bloodwork imaginable was done. No answers. He was still going downhill, so they decided to do an exploratory laparotomy to see what was going on inside…during the course of his PICU stay he had several open belly surgeries. The only thing they found was an inflamed colon and a lot of fluid buildup. No dead bowel or signs of infection. He ended up with a colostomy to try to divert stool from the inflamed sigmoid colon.
I don't want to make this too long (He has a Caring Bridge site that is open to the public under "Prayers for Owen" if you would like to see his whole, continuing medical journey) After he was discharge to the floor, he spent three weeks vomiting and with a NG tube. They wanted to give him a g-tube but we really resisted that. We took a class to care for his NG tube at home (three and a half hours away from CHCO =) and got a lot of practice putting it back in an eight month old by that time! After several months of trying to get him to eat and wean off the NG tube feedings, he finally started drinking a bottle. Several months after that his colostomy was reversed. There is a lot more to the story, but we are thankful THAT part is over! He is not almost three years old, still no answers as to why he went in to multi-organ failure. He has lasting affects from the hospital stay including a compartment syndrome injury to his left leg which has required surgery and will need more surgeries this year. He is a fighter and a bright little boy. We are grateful for everyone who has helped him on this crazy journey!

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@kristap31
I found it.. and read some of it and I will read more as I have time and brain. Owen is so cute!.. and amazingly strong to have lived through all he has gone through. I know there is always more to the story than written. Some feelings just cannot be put into words. You have been through a lot as mother. You are blessed to have a very supportive family.

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@cryinlion6423 – I just want to check back with you and see how your son is doing. Do you have any test results to share? MRI, CT, Endoscopy?

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