Trust Your Gut | Imamother

amother

Puce

Tue, May 08 2018, 2:26 pm

I am sharing this because if it helps even one mother be more assertive about her child’s care, it is worth my privacy.

Friday night we had a regular Shabbos meal. I put the kids to bed and was going to bed as well around 8 pm. M. started to complain of stomach pain. I didn’t think much of it, I told him to try to go to the bathroom. He kept getting up, trying to go, going back to bed, twisting around and was generally uncomfortable. I wondered if maybe he was constipated, or maybe he was starting with some sort of virus. Finally he fell asleep at 10 pm. From that point he kept waking up every hour or two complaining of stomach pain and crying. Finally at 4 am, I decided something was really wrong and I called Hatzoloh. I thought maybe appendicitis or a severe UTI. They came within minutes but at that point all symptoms were gone and M. was acting totally normal. I felt kind of stupid and maybe I was overreacting, but since they were already here and he had been complaining for 8 hours, I asked for transport to Johns Hopkins Hospital. They drove us there and we were in the ER by 5 am.

Since it was Shabbos, I had nothing with me other than our insurance card. I asked Hatzoloh how I was going to get home and because I live in such a wonderful community, the Hatzoloh team gave me a card of a gentile driver who is hired by Bikur Cholim. The ER nurse would call this driver and he would come with a car seat and get me and M. and drive us home.
M. was still showing no symptoms and everything appeared perfectly normal. Not even a slight fever. At this point I was feeling dumber by the second. Maybe I was completely overreacting. The doctors decided he was totally fine and it was probably gas and they did not do anything. No ultrasound, X-ray, urine test, blood test. Nothing. They discharged him and the nurse called the driver and we went home. We had a normal rest of Shabbos. M. played with his friends and was acting normal. The only thing was that he wouldn’t eat and threw up at lunchtime. I figured it was a virus and didn’t think anything of it.

Then Saturday night, I put the kids to bed around 9 pm. M. started complaining of pain again and was twisting to the side and moaning. This went on for 2 hours on and off every half hour or so and I called his pediatricians after hours line. I left a message and they were supposed to call me within the hour. Then he started to scream and I freaked out and called Hatzoloh again. Hatzoloh came again and of course, his symptoms disappeared by then. They checked him and everything seemed totally fine. The pediatrician called me back in the middle of all this and said she doesn’t know what it is but since she wasn’t there to check him, if it happens again we should go back to the emergency room but it’s fine wait and see if it happens again. Hatzoloh said the same thing, and that since he appeared perfectly fine, it probably wasn’t a serious issue but they are willing to take him to the hospital if I wanted. I was very conflicted. No one seemed to think there was any urgency. He was acting normal. There were no symptoms. I was being a hysterical overreacting mother and I should just stop bothering everyone and go to sleep. I started doubting myself and thought that maybe he was looking for attention. He is a smart kid. How is it possible that every time the EMTs show up, the symptoms disappear?

I signed a form saying we were refusing care and Hatzoloh left. We all went back to sleep. I gave M. ibuprofen for the pain and hoped that he would be able to sleep. By now it was midnight. A half hour later he woke up crying again. I finally had enough. I videoed his episode as proof that I wasn’t crazy and that his symptoms were real. He threw up the ibuprofen and started to cry again. I called Hatzoloh for the third time and said I wanted transport to Johns Hopkins again. They came in minutes but they said maybe it’s better if you drive yourself. I said there was no way I was driving through downtown Baltimore alone in the middle of the night to somewhere I’ve never driven to with a sick child strapped in a car seat in the back by himself. What if I have to pull over with an emergency on the way there? I wasn’t getting out of the car or pulling over in a bad neighborhood. My husband had to stay home with my older son. Hatzoloh agreed and drove us back to Hopkins.

When we got there, we were taken to the ER and waited for a while to see someone. The doctor checked him and said he seemed fine but maybe they will take an X-ray to be sure. They kept us waiting for a long time and M. had another episode and we were ignored. Finally I yelled at a nurse that he is in pain and someone should start doing some tests to see what is wrong. They were not taking us seriously and finally someone showed up to do a urine sample and an X-ray. Both came back clear. Now the doctors were talking about releasing us again. I started to get very upset and told the doctor to watch the videos of his episode since I was the only one who actually witnessed them. I had tried to show it to the previous doctor but he didn’t seem interested. Since we had arrived there was a shift change and the new doctor seemed more interested in seeing the video. She watched it and was very stumped. She agreed that he was in serious pain and that there had to be something wrong. She said that she will order an ultrasound even though the X-ray came back clean just in case they missed something.

At this point we had been in the ER since 2 am and now it was around 7 am Sunday morning. The night nurses and doctors had not taken me seriously and the shift change brought a new set of doctors who seemed slightly more amenable to believe me. Still there was an undercurrent of “He is totally fine, why are you here?”

The ultrasound technician showed up and at this point M. was beside himself. He and I hadn’t slept since Thursday night. He hadn’t eaten anything since Friday night and he was exhausted, in pain, hungry, thirsty and did not want to be touched anymore by anyone. Reasoning with a 4 year old is impossible on a good day. There was no way to get him to cooperate. Finally, I lay down on the table with him on top of me and he watched PBS Kids on my phone so the technician could get some pictures. Then we waited some more.
An hour later the doctor came back. She seemed relieved and slightly embarrassed and said to me “I am really happy you came back. A mother’s intuition is usually correct. We found out what is wrong.”

M. had an Intussusception. Intussusception is a serious condition in which part of the intestine slides into an adjacent part of the intestine. This "telescoping" often blocks food or fluid from passing through. Intussusception also cuts off the blood supply to the part of the intestine that's affected, which can lead to a tear in the bowel, infection, and death of bowel tissue. In his case, his large intestine was literally sucking up his small intestine.
The treatment for this is to inflate the intestines with air to cause the intestines to pop out and correct themselves. They take X-rays throughout the procedure to be sure there is no perforation and that the intestines untwist themselves. If this process doesn’t work then they would need to operate. They did the procedure around 10 am and admitted him for observation for 24-48 hours. There was one episode a few hours later where we thought he might be relapsing but it did not progress and he was fine.

Thank God the procedure appears to have worked and he is happy, healthy, and back to normal. This story has a good ending and M. is doing well but I get scared thinking about what might have been. What if I hadn’t been as pushy? What if I hadn’t gotten the video? What if we had come at a different time and the doctors hadn’t had a shift change? So many what ifs. Moms trust your instincts. You know your child best. Don’t let busy medical professionals tell you otherwise. Even if your child appears fine and you sense something is wrong, act on it. Insist on testing. Better that you appear overdramatic than for them to miss something.

Thanks for reading.

greenfire

Tue, May 08 2018, 2:35 pm

also trust the kid's gut ... it was screaming for help ~ boruch Hashem for your perseverance !!!

amother

Maroon

Tue, May 08 2018, 2:47 pm

I used to work in paediatrics so know something about this.

I'd say most kids that present with tummy pain it really is just constipation or even stress but there are a few things that you mentioned about the story that were important: he threw up his food, couldn't eat, the pain came and went and he was really in a lot of pain when it happened to the point of not being able to sleep (and his age and gender as well).

As soon as I read that, it sounded like possible intussusception already, even before the whole story of going to the ER the first time!

I'd say if you go to ER twice with these symptoms you really should be taken seriously. Great idea to take a video. If this happens to anyone make sure to stress all those symptoms and just stress that this is really not normal for him and you are worried. Intussusception is serious even if not so common and even if you just go to find out it's not that but it looked like it, that's way better than missing it.

We always got told that if the mother feels something is off it probably is. Mothers know their kids the best. Good doctors also know that.

Having said this, I have also dealt with loads of very anxious parents whose kids actually only had gas but who could not relax about it so sometimes it's hard to know. You kind of have to know yourself too as a parent: am I often over-anxious or is this really truly out of character?

crust

Tue, May 08 2018, 3:00 pm

Thumbs up
Great job mama lion! For next time nothing to be embarrassed about in first place. Rather overreact than...

amother

Black

Wed, May 09 2018, 9:31 am

Wow..what a story. Good job, mama.

My thoughts:

1. Did he recently get a rota-virus vaccine? Intussusception is a documented side effect.

2. I am saddened by all the self-doubt mothers have, and angered because I don't think fathers have the same self-doubt. You know why? Because they are taken more seriously. Not quite the same story as this, but when it comes to women's own pain, they are perceived to be "hysterical" and not believed as compared to men. See for example https://www.theatlantic.com/he.....0515/

amother

Brown

Wed, May 09 2018, 10:20 am

Good to trust your gut, but when it's a non-emergency on Shabbos, call a regular ambulance, not hatzola.

amother

Maroon

Wed, May 09 2018, 12:39 pm

amother wrote:

Good to trust your gut, but when it's a non-emergency on Shabbos, call a regular ambulance, not hatzola.

Intussusseption is 100% an emergency!

Some info here on the rota virus vaccine and intussusseption: https://www.cdc.gov/vaccines/v......html

flowerpower

Wed, May 09 2018, 1:50 pm

Wow! Glad it ended well! Thanks for sharing

amother

Periwinkle

Wed, May 09 2018, 2:19 pm

Op, though you titled this thread "trust your gut", I'm hearing from you that you "trust your child" in a wonderful way.

Many other mothers I know would not take their child seriously, esp after visiting the dr. Mothers I know would say to their child, "there's nothing wrong with you, even the dr said so, and even the x-ray shows there's nothing wrong with you ".

Thank you for allowing us to get a glimpse of a healthy parent-child dynamics.

Ruchel

Wed, May 09 2018, 2:57 pm

Yeah. I've had a couple times like this though, though sometimes I stress too much and think something is wrong and in fact... as my husband says the 9 months in my belly trump the 9 years study LOL. But not always.

Rosemarie

Wed, May 09 2018, 3:36 pm

amother wrote:

There was recently an article in one of the jewish magazines, I think Ami, that discussed women being taken way less seriously than men in the medical world, withamy symptoms being dismissed as in the mind or just normal post partum... Also, women being treated wrong, because they are using male symptoms and diagnostic tools that don't match for women with the same conditions... It's actually horrifying.

amother

Hotpink

Wed, May 09 2018, 5:10 pm

I'm glad it worked out! Refua shelaima to your son.

I take one of my kids to a specialist for a chronic condition that isn't serious but has flare-ups that can cause issues. He told me that he trusts a mother more than any diagnostic test to know when something isn't right with her child. I know he will always take me seriously and I appreciate that greatly.

rydys

Wed, May 09 2018, 7:36 pm

amother wrote:

Intussusseption is 100% an emergency!

Some info here on the rota virus vaccine and intussusseption: https://www.cdc.gov/vaccines/v......html

Actually, rotavirus itself is a common trigger for intussusception. After the initial vaccine came out, there were several reported cases of intussusception after the vaccine. Studies showed that the risk of intussusception after the vaccine was about the same as the risk of intussusception from the virus itself. However, due to the negative press, the vaccine was withdrawn and reformulated. The risk from the new vaccine is actually lower than the risk from the virus itself. When factored in with all the other potential complications from the illness, the risk is even lower.

rydys

Wed, May 09 2018, 7:38 pm

amother wrote:

I second the above post. Were you in a pediatric ER? I am amazed that a doctor could miss such a classic presentation of intussusception!

amother

Pink

Wed, May 09 2018, 8:48 pm

Quote:

Wow..what a story. Good job, mama.

My thoughts:

1. Did he recently get a rota-virus vaccine? Intussusception is a documented side effect.

FYI, rotavirus is a (non mandatory) vaccine that is given only in infancy. It is not given to 4 year olds.

amother

Puce

Wed, May 09 2018, 10:35 pm

amother wrote:

Good to trust your gut, but when it's a non-emergency on Shabbos, call a regular ambulance, not hatzola.

OP here.

Intussusception can be fatal if not treated. The bowel can die and become septic.

As an aside, my husband looked up the halacha before I made the phone call. The halacha says to call Hatzoloh straight out.

amother

Puce

Wed, May 09 2018, 10:43 pm

amother wrote:

This made me cry. I felt that way as well. Although thank God there was no lasting damage.

Its interesting that the female doctor was more responsive than the male doctor. That is exactly what happened with us as well.

amother

Puce

Wed, May 09 2018, 10:50 pm

rydys wrote:

I second the above post. Were you in a pediatric ER? I am amazed that a doctor could miss such a classic presentation of intussusception!

I was. At a very good hospital no less.

amother

Violet

Wed, May 09 2018, 11:04 pm

Westchester by any chance?

I once went to the doctor because my baby was so ill she couldn't lift her head. If you picked up her hand it would fall limply at her side. She looked as if she had one foot in the grave. The doctor took one look at her and called Hatzalah to take her to Westchester. But before we left he gave her a dose of Motrin to lower the fever 103.4 she had.

Well, by the time we got to Westchester the fever was just scraping 100 and the Motrin worked miracles. She was jumping and smiling like a happy kid. I explained to them how she had been before the Motrin, but they told me I was just a nervous mother and the kid was fine. No testing, nothing. Sent me home even though I insisted the kid was sick...

The next day I ran in to the doctor first thing in the morning with a gray-colored baby who was so lethargic her eyes couldn't stay open. The doctor started screeching about how the hospital was irresponsible for not believing me and that my kid was seriously ill. She got on antibiotics and felt better almost immediately...

amother

Puce

Wed, May 09 2018, 11:30 pm

amother wrote:

I was at Johns Hopkins.

I'm glad ur baby was ok.

It's unbelievable how little regard some doctors have for a mother's intuition. Haven't we been proven right enough times to be trusted?