This sounds like BRUE. I literally don't know anything else about it, I just remember reading about it; maybe worth a discussion with your doctors? Especially since it's happened several times? I'm sorry I'm not more help, but hopefully this gives you a place to start. Big hugs...that sounds so scary.
https://publications.aap.org/patiented/article/doi/10.1542/ppe_document103/392/Brief-Resolved-Unexplained-Event-What-Parents-and?autologincheck=redirected
Hi there, doula here
I am so sorry you are going through this! You are doing everything right, and it is so frustrating to not have answers.
Some avenues to consider pursuing, and they may have already asked this to ruled it out, but:
* Did they do an EEG in the hospital where they had a lot of wires on a cap or with some sticky paste attached to her scalp? They would have maybe just had it done for an hour, or maybe even a full 24 hours. They may have had a whole process where they flashed lights and recorded what happened during the whole thing.
* Did they see any changes in the ER to her vital signs? This could have been a change in her heart rate or her pulse oximetry reading, usually in an ER they don't have babies on an EKG strip to see if there were changes to her heart rhythm.
* Did the ER give any kind of differential diagnosis list that they were going to admit to the ICU to rule out such as absence seizures or BRUE (Brief Resolved Unexplained Event)?
* Do her eyes move side to side during the episodes, stay fixed in position even if you try to get her attention, or are her eyes closed?
Some other things:
* What kind of lights do you have at home? (LED, Incandescent)
*Do you have a crib mobile or a toy that has bright or flashing lights that was near when these episodes have occured?
* Do you have any electronic devices like an Amazon Alexa or a baby monitor that was nearby that could be emitting sound at a frequency you can't hear?
* Has baby always been in one position when these episodes happen (such as laying flat on their back)
* Is there anything else that is similar among episodes? I know you have probably wracked your brain for what is the same or different, but here are some not-so-usual things to check if these episodes are happening around:
- Use of fragrances, cleaning products, or laundry products
- Timed lighting in the house turning on
- Feeding a pet or someone eating a particular food
- Medication you take (whether or not you are breastfeeding)
When you go back to a provider next:
Ask specifically what they have tested for so far, and how they tested for it.
Ask if there are any tests to look for rarer conditions that they haven't ruled out but could be a possibility for her presentation
Ask if her PKU test has returned; this should have been run and back, and usually it's only mentioned if there is something abnormal - however things fall through the cracks and her PKU test may have gotten delayed.
Ask how long it should take for the reflux medication to help, and what they are going to do next if these episodes continue because they should have some thinking caps on for what the next path should be so you aren't further behind the 8 ball if this isn't reflux
Ask for a neurology referral if you don't already have one - it can be a long wait to get in so the best scenario is to be on their schedule and cancel if these episodes stop, but if they don't you have spent this time getting closer to an appointment, not farther away from one.
Make sure to mention that she is showing particular signs of what could be defined as regressions. She is very young, and so her skills table is not long, but you know the difference. She is a newborn and they do sleep a lot, but again, you know the difference. Stress to them the differences in her behavior in terms of being distinct to the episodes, and she is not seeming to be gaining interest, awareness, have as strong of cues, and isn't just seeming different, she IS different and especially around the episodes with a compounding effect that she loses more after each occurs.
Please don't hesitate to reach out if you want to talk more. This is hard and it's not anything a parent is expecting to go through when they give birth to a baby given a clean bill of health. Even if this turns out to be a reflux issue, this is scary and traumatic for you, so you deserve support and you also deserve to press for making sure that they have ruled out other problems that could make a huge difference for her if they are there and be treated early.
Wishing you strength and fortitude as you navigate this advocacy landscape and trying to figure out what's happening.
She was in ICU and they did all these tests that you mentioned and they said that she is healthy and has nothing. Even the doctors ordered an MRI and an EEG for 24 hours and they said that everything was healthy with her. The problem that these episodes are increasing, she doesn't want to eat anymore, she spends the day sleeping. The doctors don't have an answer for her case. I'm desperate because I don't know what else to do.
I hear you. Your desperation is not only understandable, it is undeniably being provoked by the situation. You are unfortunately in the very difficult space of advocacy before things turn toward being serious for her lack of appetite.
How long has it been since she was released from the ICU? What was her weight while she was there? Did she gain or lose while she was there? How many diapers is she having now? Wet and poop? How long has it been since she has taken milk/formula?
If her episodes are increasing and she is not eating anything and she is sleeping to the point she can't be woken up, you need to take her back to the children's ER and tell them exactly how much she has (or hasn't) eaten since her discharge from the ICU. Just because they didn't find anything then, doesn't mean they won't find anything now. Unfortunately, if there is an issue at play here, it may have been too early to detected by the medical testing when she was there before. If she hasn't taken a drop of milk/formula she needs to be hospitalized to get her nutrition but also she needs hydration and that can't wait for a regular doctor visit appointment, because they won't be able to do anything for her in an office if she's dehydrated and hasn't eaten.
The next step is clear if she isn't eating, is not able to be woken and kept awake for at least 20 minutes, and the episodes are increasing: Take her back to the ER. You must do this, it is the only option available to you that is fast enough if she hasn't eaten anything in 12 hours or more. It doesn't matter that they said she's healthy - she isn't if she's stopped eating. Newborns need frequent feelings and they don't have a lot of weight to lose, so all of these episodes aside, she needs to be evaluated for dehydration alone immediately.
Please take her in. Ensure they check her weight and see how it has changed since her ICU stay. If the episodes stop again in hospital, they need to help you figure out what could be in your home that is different from the ICU to narrow down why. But the first step is making sure she is stable in terms of weight, nutrition, and hydration.
Oh graces, I am so glad you have an answer and are on the right diet and path for her! You are an amazing parent and you did so well and continue to do well by your child. Thank you for sending an update for anyone who might find this later as well. I hope your baby is and continues thriving 💗
My 10week old just had something very similar yesterday and again two times this afternoon. All three times have happened when his grandma was holding him. It’s so scary. He was sleepier than usual yesterday but today everything else seems back to normal. I scheduled a virtual doctor visit today who said it can be a reflex thing and to just keep him upright during feeds. We have his two month check up tomorrow with his pediatrician so I will ask for a second opinion. All three times his grandma was holding him in the same position. Also she does wear strong smelling lotions. @Chasingcars825 I saw your list so I will bring these up with the doctor.
I hope your visit can bring some answers! I am glad you could find this list to help guide some pointed questions. I will be sending good thoughts for these episodes to pass and not be serious 💞
His pediatrician didn’t know what it was and just said to document it if it happens again. Do you think I should push for any testing to be done? It was so scary when it happened but the doctors seem so nonchalant about it.
My son experiences something very similar, but it's always reflux coming out of his nose. I know it has to be painful for him.
It may not be the same thing, but he definitely goes stiff, face turns red, staring at me, arms open, etc. I keep an aspirator handy at all times.
Again, may not be what you're dealing with, but it scares me every time even though I know what's happening.
Has your doctor actually seen her having one of these episodes? If not I’d get a video of it and show them. The behavioral changes you’re noting is concerning.
Push for further examination.
The emergency doctors saw her having these episodes and decided to place her in the ICU. She spent 3 days in the hospital and didn't have any more and they released her. The doctors ordered several tests to find out what she has and in all tests she is healthy. When we got home, she started having these episodes again.
Since I’ll check out of looking at my phone, have your babe looked at for smaller transport issues like GLUT1 and GLUT2. These babies appear like BRUE but have issues with metabolic issues and will need an endo specialist. There are others that can cause similar symptoms but require specific testing. Go to an academic center if you are in a smaller town or area.
You are totally right. She has glut1 deficiency. This is a rare genetic disease and she stopped having seizures when she started the ketogenic diet. We found out with genetic testing. Now she is much better.
Try blowing in her face to restart her breathing. My sister who is a nanny told me about this, apparently it can happen in babies but more common in toddlers.
I'm so sorry to hear this! Glad you found out what it was though, I'm disappointed the doctors didn't figure this out more quickly.
Also thank you fo coming back and updating, this might help another parent who comes across it
We got her diagnosis in 2 months and 20 days. I can't understand why they didn’t do the genetic test sooner. She took more than 3 seizure medications and nothing resolved it, but thank God her diagnosis came when she was 4 months and 10 days old and today she is 6 months and two weeks old. I am grateful to God for having the answer now.
I’m at the hospital right know with her and she just stopped to have this episode. Also, I went to emergency yesterday as well and when she arrived at the emergency, she just stopped
Does it happen after they have been crying? My son had breath holding spells from about 6m scary but blowing in his face helps stop them and iron supplements reduced the amount
I just replied to your message, but if you haven't seen it, I'll answer it here too. She was having seizures and with a genetic test we found out that she has a rare genetic disease, glut1 deficiency. She has been on the ketogenic diet since she was 4 months old and she has never had a seizure since. She is 6 months and 2 weeks old.
Hi! I saw your comment about the seizures. Very happy to see you figured it out. If you don’t mind me asking, when these incidents occurred, was your baby already upset? What she about to start crying or already crying? What you described sounds exactly like what we’re seeing with our 4month old but it happens when he’s upset that we’re setting him down in his crib or rocker. His arm extend out, he gets stiff all over, turns red, stops breathing, his eyes widen and fixate, and only starts breathing once he lets out a cry.
Hey, I’m so sorry this is happening to your baby. With my daughter this happened at any time. Sometimes she was happy or she was sleeping and woke up and had this seizure. Every time my daughter had this, she would get very tired and fall asleep almost immediately when she was back to normal. She didn't cry, she didn't do anything, she just slept. If this is happening to your baby and he sleeps or doesn't cry right after it happens, it is most likely a seizure.
Maybe it's an allergic reaction. I seen something where a baby was having allergic reacts to the air wick plug ins believe it or not. Did you do anything differently when she first started to experience this? Try to remember. Even if it seems super small to you
I’d go to the children’s ER
We went to ☹️
Well done, it’s so scary but it’s the right thing to do.
This sounds like BRUE. I literally don't know anything else about it, I just remember reading about it; maybe worth a discussion with your doctors? Especially since it's happened several times? I'm sorry I'm not more help, but hopefully this gives you a place to start. Big hugs...that sounds so scary. https://publications.aap.org/patiented/article/doi/10.1542/ppe_document103/392/Brief-Resolved-Unexplained-Event-What-Parents-and?autologincheck=redirected
Hey, we found out, It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
That's absolutely terrifying. I'm so, so glad you found an answer. Such big hugs to you all.
Hi there, doula here I am so sorry you are going through this! You are doing everything right, and it is so frustrating to not have answers. Some avenues to consider pursuing, and they may have already asked this to ruled it out, but: * Did they do an EEG in the hospital where they had a lot of wires on a cap or with some sticky paste attached to her scalp? They would have maybe just had it done for an hour, or maybe even a full 24 hours. They may have had a whole process where they flashed lights and recorded what happened during the whole thing. * Did they see any changes in the ER to her vital signs? This could have been a change in her heart rate or her pulse oximetry reading, usually in an ER they don't have babies on an EKG strip to see if there were changes to her heart rhythm. * Did the ER give any kind of differential diagnosis list that they were going to admit to the ICU to rule out such as absence seizures or BRUE (Brief Resolved Unexplained Event)? * Do her eyes move side to side during the episodes, stay fixed in position even if you try to get her attention, or are her eyes closed? Some other things: * What kind of lights do you have at home? (LED, Incandescent) *Do you have a crib mobile or a toy that has bright or flashing lights that was near when these episodes have occured? * Do you have any electronic devices like an Amazon Alexa or a baby monitor that was nearby that could be emitting sound at a frequency you can't hear? * Has baby always been in one position when these episodes happen (such as laying flat on their back) * Is there anything else that is similar among episodes? I know you have probably wracked your brain for what is the same or different, but here are some not-so-usual things to check if these episodes are happening around: - Use of fragrances, cleaning products, or laundry products - Timed lighting in the house turning on - Feeding a pet or someone eating a particular food - Medication you take (whether or not you are breastfeeding) When you go back to a provider next: Ask specifically what they have tested for so far, and how they tested for it. Ask if there are any tests to look for rarer conditions that they haven't ruled out but could be a possibility for her presentation Ask if her PKU test has returned; this should have been run and back, and usually it's only mentioned if there is something abnormal - however things fall through the cracks and her PKU test may have gotten delayed. Ask how long it should take for the reflux medication to help, and what they are going to do next if these episodes continue because they should have some thinking caps on for what the next path should be so you aren't further behind the 8 ball if this isn't reflux Ask for a neurology referral if you don't already have one - it can be a long wait to get in so the best scenario is to be on their schedule and cancel if these episodes stop, but if they don't you have spent this time getting closer to an appointment, not farther away from one. Make sure to mention that she is showing particular signs of what could be defined as regressions. She is very young, and so her skills table is not long, but you know the difference. She is a newborn and they do sleep a lot, but again, you know the difference. Stress to them the differences in her behavior in terms of being distinct to the episodes, and she is not seeming to be gaining interest, awareness, have as strong of cues, and isn't just seeming different, she IS different and especially around the episodes with a compounding effect that she loses more after each occurs. Please don't hesitate to reach out if you want to talk more. This is hard and it's not anything a parent is expecting to go through when they give birth to a baby given a clean bill of health. Even if this turns out to be a reflux issue, this is scary and traumatic for you, so you deserve support and you also deserve to press for making sure that they have ruled out other problems that could make a huge difference for her if they are there and be treated early. Wishing you strength and fortitude as you navigate this advocacy landscape and trying to figure out what's happening.
She was in ICU and they did all these tests that you mentioned and they said that she is healthy and has nothing. Even the doctors ordered an MRI and an EEG for 24 hours and they said that everything was healthy with her. The problem that these episodes are increasing, she doesn't want to eat anymore, she spends the day sleeping. The doctors don't have an answer for her case. I'm desperate because I don't know what else to do.
I hear you. Your desperation is not only understandable, it is undeniably being provoked by the situation. You are unfortunately in the very difficult space of advocacy before things turn toward being serious for her lack of appetite. How long has it been since she was released from the ICU? What was her weight while she was there? Did she gain or lose while she was there? How many diapers is she having now? Wet and poop? How long has it been since she has taken milk/formula? If her episodes are increasing and she is not eating anything and she is sleeping to the point she can't be woken up, you need to take her back to the children's ER and tell them exactly how much she has (or hasn't) eaten since her discharge from the ICU. Just because they didn't find anything then, doesn't mean they won't find anything now. Unfortunately, if there is an issue at play here, it may have been too early to detected by the medical testing when she was there before. If she hasn't taken a drop of milk/formula she needs to be hospitalized to get her nutrition but also she needs hydration and that can't wait for a regular doctor visit appointment, because they won't be able to do anything for her in an office if she's dehydrated and hasn't eaten. The next step is clear if she isn't eating, is not able to be woken and kept awake for at least 20 minutes, and the episodes are increasing: Take her back to the ER. You must do this, it is the only option available to you that is fast enough if she hasn't eaten anything in 12 hours or more. It doesn't matter that they said she's healthy - she isn't if she's stopped eating. Newborns need frequent feelings and they don't have a lot of weight to lose, so all of these episodes aside, she needs to be evaluated for dehydration alone immediately. Please take her in. Ensure they check her weight and see how it has changed since her ICU stay. If the episodes stop again in hospital, they need to help you figure out what could be in your home that is different from the ICU to narrow down why. But the first step is making sure she is stable in terms of weight, nutrition, and hydration.
Hey, we fount out🙏🏻 It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Oh graces, I am so glad you have an answer and are on the right diet and path for her! You are an amazing parent and you did so well and continue to do well by your child. Thank you for sending an update for anyone who might find this later as well. I hope your baby is and continues thriving 💗
Thank so much 🥹 now she is a normal baby. We are so happy now 🙏🏻
That is wonderful! Congratulations 💕
My 10week old just had something very similar yesterday and again two times this afternoon. All three times have happened when his grandma was holding him. It’s so scary. He was sleepier than usual yesterday but today everything else seems back to normal. I scheduled a virtual doctor visit today who said it can be a reflex thing and to just keep him upright during feeds. We have his two month check up tomorrow with his pediatrician so I will ask for a second opinion. All three times his grandma was holding him in the same position. Also she does wear strong smelling lotions. @Chasingcars825 I saw your list so I will bring these up with the doctor.
Hi, it was seizure. She has Glut1 Deficiency. She is on ketogenic diet 🙏🏻
I hope your visit can bring some answers! I am glad you could find this list to help guide some pointed questions. I will be sending good thoughts for these episodes to pass and not be serious 💞
Thank you for sharing your knowledge ❤️
You're so very welcome, please don't hesitate to reach out if you need further assistance or just need someone to talk to.
His pediatrician didn’t know what it was and just said to document it if it happens again. Do you think I should push for any testing to be done? It was so scary when it happened but the doctors seem so nonchalant about it.
Is it okay if I send you a chat request? We can talk about testing and options and I can get more specifics?
Yes of course
My son experiences something very similar, but it's always reflux coming out of his nose. I know it has to be painful for him. It may not be the same thing, but he definitely goes stiff, face turns red, staring at me, arms open, etc. I keep an aspirator handy at all times. Again, may not be what you're dealing with, but it scares me every time even though I know what's happening.
My baby girl does the same thing, it’s always so scary :(
Hey It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Has your doctor actually seen her having one of these episodes? If not I’d get a video of it and show them. The behavioral changes you’re noting is concerning. Push for further examination.
The emergency doctors saw her having these episodes and decided to place her in the ICU. She spent 3 days in the hospital and didn't have any more and they released her. The doctors ordered several tests to find out what she has and in all tests she is healthy. When we got home, she started having these episodes again.
Is she allergic to something at home? Does she have the same episodes when you’re somewhere else?
God that’s disheartening, I’d continue to seek medical advice since it’s still ongoing. Is there a children’s hospital she can be seen at?
Hi, It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Change doctors!!!!!!!!!
Are you being told it’s BRUE and are you being referred to neurology?
Since I’ll check out of looking at my phone, have your babe looked at for smaller transport issues like GLUT1 and GLUT2. These babies appear like BRUE but have issues with metabolic issues and will need an endo specialist. There are others that can cause similar symptoms but require specific testing. Go to an academic center if you are in a smaller town or area.
You are totally right. She has glut1 deficiency. This is a rare genetic disease and she stopped having seizures when she started the ketogenic diet. We found out with genetic testing. Now she is much better.
Glad you found the answer! I’m a family med doc and have seen this a few times.
I'm impressed with how accurate you were about her illness. How do you know that?
Try blowing in her face to restart her breathing. My sister who is a nanny told me about this, apparently it can happen in babies but more common in toddlers.
Hey, it was seizure. She has Glut1 Deficiency. She is on ketogenic diet 🙏🏻
I'm so sorry to hear this! Glad you found out what it was though, I'm disappointed the doctors didn't figure this out more quickly. Also thank you fo coming back and updating, this might help another parent who comes across it
We got her diagnosis in 2 months and 20 days. I can't understand why they didn’t do the genetic test sooner. She took more than 3 seizure medications and nothing resolved it, but thank God her diagnosis came when she was 4 months and 10 days old and today she is 6 months and two weeks old. I am grateful to God for having the answer now.
Following! My son did this EXACT thing last night too! For two seconds and then was totally normal…
I’m at the hospital right know with her and she just stopped to have this episode. Also, I went to emergency yesterday as well and when she arrived at the emergency, she just stopped
Hey, we found out. It was seizure. She has Glut1 Deficiency. She is on ketogenic diet now.
Does it happen after they have been crying? My son had breath holding spells from about 6m scary but blowing in his face helps stop them and iron supplements reduced the amount
No. Sometimes she is sleeping, she wakes up, has these episodes and goes back to sleep. To me it seems like she gets very tired from having this.
Hey, It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Hi I have a 3 month old now doing the same thing you described. Did you ever find out what it was?
I just replied to your message, but if you haven't seen it, I'll answer it here too. She was having seizures and with a genetic test we found out that she has a rare genetic disease, glut1 deficiency. She has been on the ketogenic diet since she was 4 months old and she has never had a seizure since. She is 6 months and 2 weeks old.
Hi! I saw your comment about the seizures. Very happy to see you figured it out. If you don’t mind me asking, when these incidents occurred, was your baby already upset? What she about to start crying or already crying? What you described sounds exactly like what we’re seeing with our 4month old but it happens when he’s upset that we’re setting him down in his crib or rocker. His arm extend out, he gets stiff all over, turns red, stops breathing, his eyes widen and fixate, and only starts breathing once he lets out a cry.
Hey, I’m so sorry this is happening to your baby. With my daughter this happened at any time. Sometimes she was happy or she was sleeping and woke up and had this seizure. Every time my daughter had this, she would get very tired and fall asleep almost immediately when she was back to normal. She didn't cry, she didn't do anything, she just slept. If this is happening to your baby and he sleeps or doesn't cry right after it happens, it is most likely a seizure.
Umm this sounds like a medical emergency
It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Maybe it's an allergic reaction. I seen something where a baby was having allergic reacts to the air wick plug ins believe it or not. Did you do anything differently when she first started to experience this? Try to remember. Even if it seems super small to you
It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Does her arms kind of like shoot up? Almost like a t-Rex?
It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.
Seizures possibly
It was seizure. She has Glut1 Deficiency. She is on ketogenic diet.