20mo toddler, ongoing issues for 12mo no diagnosis

Posted by akaheisenberg @akaheisenberg, Nov 1, 2020

Hi everyone,

I am literally at my wit’s end. My poor daughter has been struggling for the last 12 months of her life. We have been hospitalized for failure to thrive 10 months ago. We have seen 6 different specialists and we have no diagnosis. In fact my own troubleshooting and home remedies is the only reason we haven’t been hospitalized again. However, my strategies have come to an end and we have began losing weight again after having a very successful 6 months on my treatment plan. My pediatrician has recommended that we seek outside of Nevada help as we have exhausted most of the specialist here. I have kept a very good timeline and documentation on everything that has happened so far. I will share that timeline with you, including my own personal opinions. The main concern here is we started with a server cough October of 2019. This cough became so bad that she couldn’t drink her bottle with out coughing, the coughing would get so bad that she would vomit at times (early on vomiting only occured if coughing). This is where it all began and below is a timeline of what happened. I’m more than happy to provide any additional documentations. I will go broke before I give up on my daughter, with that said why haven’t we gone to the Mayo in Phoenix, is I will likely lose my job, which I am willing to do but it’s the last resort of course.

Brooklyn TImeline of events

Late October 2019
-Woke up with a fever and vomiting the night before flying to Minnesota.
-Seemed fine several hours later, and proceeded to fly to Minnesota.
-Mom got sick also, fever, chills, vomiting approximately 3 days later while in Minnesota
-Flew home seemed fine
-Noticed a cough had developed

Early November 2019
-Cough began to get worse – to the point where every time she would drink she would cough (later on I believe that she was aspirating when coughing)
-Cough became severe – Diagnosed as croup cough
-Brooklyn refused to take the steroid treatment, she would vomit every time we attempted to administer medicine

Late November 2019
-Still coughing and having a difficult time with bottle drinking
-ML intake began to decrease see attached chart

December 2019
-Still coughing (possibly back to back illnesses)
-ML intake decreased as well
-Started to notice lethargicness
-Mid December Brooklyn began wearing a helmet due to flat spots on her head

January 2020
-Coughing got worse, unable to eat much at all without coughing. Coughing so bad that she would eventually vomit. Vomiting never occurred without the coughing fit. (Hospital did not listen or regard this important detail, they focused on food adversion and vomiting only)
-Noticed that she had lost significant weight
-Was hospitalized for failure to thrive
-Spent 6 days at summerlin hospital
-They installed an NG tube and fed her that way
-Performed a swallow test and determined she was fine
-Performed an upper GI stomach emptying test – results were fine
-Was diagnosed with RSV while in the hospital
-OT found no issues with her drinking
-GI and Lung Spec. agreed acid reflux
-We left after she began eating better on her own
-After leaving hospital we ate fine for a few days before she began to cough again
-I gave her steroids from her croup cough diagnosis
-Immediate change in her eating
-This worked for several weeks before she began to eat poorly again
-Personal opinion – I felt the reason she got better in the hospital was because she wasn’t actually drinking herself so it gave her throat time to calm down, and the addition of steroids helped reduce swelling due to irritation

At this point Brooklyn’s diet consisted of mainly formula and a select few puree squeeze pouches. Solid foods would cause her to gag and vomit at times.

Febuarary 2020
-Saw GI spec. and Lung spec.
-Both agreed still acid reflux and scheduled an endoscopy to verify
-Was prescribed several different acid reflux medicines
–No differences noted
-Was prescribed two different nebulizer medicines
–No differences noted
-Stabilized a little bit with the addition of oral steroid treatment

March 2020
-Endoscopy performed at Sunrise
-No signs of aspiration or abnormalities (Had to fast for 12 hours)
-Was noted that there was swelling in the esophagus
-Was noted that the vocal cords did not fully close during endoscopy but was noted that being under anesthesia it was nothing to be considered with

Late March 2020
-I decided to thicken her formula as I suspected that she was aspirating
-Thickened formula started to increase her ML count per feed
-Have not stopped thickening since
-Began to increase weight as she was eating more formula
-Found that she could eat scrambled eggs with very few choking instances
-Found ways to increase scrambled eggs calorie count
Added butter, milk, and heavy whipping cream to increase caloric intake of eggs
-Ate this meal about 2-3 times a day (eating on average 12-18 eggs a week)
-Started gaining significant weight and now starting to hit milestones (little over a pound a month weight gain)

Late March – September 2020
-Began eating additional foods – Mac and cheese, fish fillets, chicken, crackers
-Sometimes would gag and vomit or cough and vomit
-Began crawling on all fours
-Began pulling herself up and walking around furniture
-Learned some words and can answer questions with head shakes or body language
-Can say, Dad, mom, baby, up, sit,
-Can answer verbal questions like what sound does a cat make or what sound does old macdonald make (although not super clear verbally you can make out what she is saying)
-Can point out various objects on her body, nose, hair, ears, eyes, mouth, teeth, knees, feet, belly button
-Likes to point to things in books and have us say the name
-Can point at some images when asked – where’s the penguin, elephant, fish, giraffe ect
-Can clap hands, stomp feet, dance, high five, blow kisses
-Cannot walk or stand unassisted
-Loves to go walking by holding onto our hands

October 2020
-Got sick with a bad cold (possibly covid?)
-Hasn’t really recovered since
-Coughing a lot again even with thickened fluids
-Some solids that she has been doing well with now are causing issues
-Gaging at times with the bottle or solid foods
-Lost about a half pound in 1 month from Sept to Oct
-Breathing sounds wet again after eating (Same as initially)
-Walking seems to be a little worse now, less coordinated
-Is more active however, wants to walk whenever she can (possible cause of weight loss?)

Personal Opinion or Diagnosis
I personally feel that through all the research done on my end and by also studying my daughters habits I feel she is suffering from dysphagia. To be more specific I feel she is suffering from dysphagia aspiration, which I also feel she has had on multiple occasions aspiration pneumonia.

My reasons for believing in this diagnosis
-Thickening fluids has for the longest time cured the coughing while drinking or reduced it down to a minimal amount
-When she does get sick her breathing gets very wet and raspy sounding
-She typically does not have a fever however
-Her breath stinks when she is sick
-She has phlegm when coughing
-She at times has Stridor when breathing or what I believe Stridor to be
-She sneezes a lot when she is sick – however her sneezes sound like they have nowhere to go if that makes sense
-On her endoscopy they noted that her vocal cords did not close fully, I think this is the cause of the aspiration in the first place
-I believe she is suffering from vocal fold, causing aspiration and coughing, and sometimes causing aspiration pneumonia. These are of course my personal opinions however I have proven to be more beneficial to my daughters health than summerlin hospital and the GI, lung specialist, as far as coming up with a treatment plan that has actually worked instead of just saying it’s acid reflux

Supporting evidence of dysphagia aspiration / pneumonia
Vomiting never occurs without coughing or gagging
Stinky breath (possibly pneumonia?)
Raspy breathing / wet sounding
While drinking this sound gets worse or more pronounced
Sneezing that sounds restricted (no idea here but this has been present since last October)
When she sneezes or vomits it is not uncommon for the food/milk to come out her nose
Sometimes I can see into her throat when she begins vomiting, it looks like food is present in the pharynx area
All acid reflux medications that we tried did not help in anyway
Nebulizer also did not help at all either, however this was extremely difficult to administer
Before she we started going downhill again none of the above symptoms were present or were minimally present
The reason I believe there were no signs of aspiration on the endoscopy was simply due to the fact that we went 12 hours without eating.
Why are we going downhill now? I feel that being sick (common cold) caused her to have difficulty swallowing since her nose was congested. Difficulty swallowing led to aspirating, and I feel she currently has or is getting over pneumonia. This is really the only explanation to my theory currently.

@akaheisenberg Welcome to Mayo Clinic Connect. I have added your discussion question to the About Kids & Teens group. I did this so you could connect with members like @cryinlion6423, that are also caring for children with illness.

I can't imagine what you are feeling right now. You have taken excellent notes and clearly want more than anything for your daughter to be well. Your provider advised that you seek more specialized healthcare out of the area you live. It would be best to follow this advice. I understand that your livelihood is extremely important. May I ask if you have looked into a job transfer or FMLA?

REPLY
@erikas

@akaheisenberg Welcome to Mayo Clinic Connect. I have added your discussion question to the About Kids & Teens group. I did this so you could connect with members like @cryinlion6423, that are also caring for children with illness.

I can't imagine what you are feeling right now. You have taken excellent notes and clearly want more than anything for your daughter to be well. Your provider advised that you seek more specialized healthcare out of the area you live. It would be best to follow this advice. I understand that your livelihood is extremely important. May I ask if you have looked into a job transfer or FMLA?

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Thank you for your response. I have thought about FMLA however with my job (brand new teacher) I'm in a unique situation that would likely result in being replaced, which is understandable. Fmla would protect me from being terminated but to ask a substitute for possible long term work while also taking on the responsibilities of creating and building the curriculum would likely result in that person taking over all together. It is a scenario that is possible, so of course I am cautious as my family depends on my insurance and income (I also have a 2mo newborn). If it was the only option then I will be forced to take it. I have suggested several test to be done here in Vegas, (chest x-ray for possible pneumonia being one of them) as this was never done or recommended. We have not yet seen a good ENT specialist so we do have an appointment in December with "the best" one here but I'm hoping to find additional suggestions or to hear from a doctor that they are confident in determining this issue before she gets worse. I really don't want this to come off as I'm more concerned about my job than my daughter, as that's not the case, but my family is already behind financially with the covid situation this year and making sure that my children's needs can be met are important, so making that decision to put the others in my family at risk is weighing very heavily also. I don't doubt the Mayo as I've heard it's one of the best hospitals in the world but what happens if even there we cannot find the cure?

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@akaheisenberg – I understand how frustrating this is for you. You have kept exceptional notes!
You are on the right track I think.
Endoscopy was normal, but they saw abnormal vocal cord position.
Upper GI done- I assume they did a Barium swallow, observing live how the esophagus moved. All normal, right?
Did she ever have chest X-ray and/ or chest CT?
Bronchoscopy?
I agree that she may have aspirated and may still do so. The vocal cords may have been irritated from that. Less likely with vocal cord paralysis.
She probably started out with GERD- quite common in infants.
Next step for you is find the best children’s hospital.
Keep us posted on researching where to go!

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@astaingegerdm

@akaheisenberg – I understand how frustrating this is for you. You have kept exceptional notes!
You are on the right track I think.
Endoscopy was normal, but they saw abnormal vocal cord position.
Upper GI done- I assume they did a Barium swallow, observing live how the esophagus moved. All normal, right?
Did she ever have chest X-ray and/ or chest CT?
Bronchoscopy?
I agree that she may have aspirated and may still do so. The vocal cords may have been irritated from that. Less likely with vocal cord paralysis.
She probably started out with GERD- quite common in infants.
Next step for you is find the best children’s hospital.
Keep us posted on researching where to go!

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Thank you for your response. The swallow test was done with the barium when we were hospitized in January. She didn't drink much as she was able to taste the barium. But from what they saw they did not see aspiration or reflux, however she didn't drink much maybe 20ml at the time. She did start coughing and almost vomited but they did not see any coming back up from the stomach.

Early on before this all started she did suffer from reflux (possibly gerd). She was very colic and did spit up quite a bit from 0-9mo, we tried medicine and nothing helped other than sleeping elevated.

When we were hospitized then did not think a chest x-ray was necessary, and to be honest that was before I believed she was aspirating, so I didn't push for one. They also would not test her for CF which I wanted them to do. I have a chest x-ray scheduled for tomorrow for her so hopefully we will see something (well I don't hope but I do hope if you know what I mean) with how wet and congested her breathing sounds I 100% believe that she is aspirating and her current illness or the reason we started regression I feel is pneumonia.

The endoscopy was performed simultaneously with the GI and Lung doctor so I do believe she had a bronch done by the Lung doctor.

We are waiting on the results of the x-ray tomorrow, and our appointment with the ENT before we give up and seek out other locations. Right now we are likely thinking the Mayo in Phoenix or CHOC (children's hospital of orange county). Of course if she shows significant regression we will not wait. We are currently in the 14% for weight (was at 2% when hospitalized) and was at 30% prior to the start of regression a month ago on my treatment plan.

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Here is also a video of her coughing when eating a Cheeto at daycare. She did not vomit but this is what it sounds like, and if she gets coughing enough will lead to vomiting, and when she vomits she empties her entire stomach. whoops guess you cant upload videos, I guess I will do just the audio

Shared files

Movie 2 (Movie-2.mp3)

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@akaheisenberg – That cough really sounds horrible! Tomorrow you get the xray report. ENT is a very good idea.
If you go outside for help, I think both institutions should be able to come to a conclusion.

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@akaheisenberg Hello again! Checking to see if the chest X-ray showed anything?
You have ENT in December.
Did anyone ever consider food allergies? Testing? Tested for Covid-19?
Looking forward to hear from you!

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@astaingegerdm

@akaheisenberg Hello again! Checking to see if the chest X-ray showed anything?
You have ENT in December.
Did anyone ever consider food allergies? Testing? Tested for Covid-19?
Looking forward to hear from you!

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Chest x-ray was clean. Waiting to see the ENT in early December. We have not been tested for covid but I have a feeling that we did have it back in May, we all got very sick. Food allergies is one that we have tried to do but the only way anyone is drawing this girl's blood is if they sedate her. We tried for 3 hours last week to get her blood drawn and they were unsuccessful.

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@akaheisenberg – It is a relief that the X-ray was clear. I know what you mean by drawing blood from a toddler! If it comes down to performIng food allergy testing, she might need light sedation. Hope not.

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@akaheisenberg – I had a thought – the way the illness started and developed sounds like whooping cough- pertussis. However, it usually doesn’t last this long. Maybe something to ask the specialists. Even if she had the vaccinations, she could still get it.

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@astaingegerdm

@akaheisenberg – I had a thought – the way the illness started and developed sounds like whooping cough- pertussis. However, it usually doesn’t last this long. Maybe something to ask the specialists. Even if she had the vaccinations, she could still get it.

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I had originally thought whooping cough as well but I guess it was ruled out by the sound of her cough early on.

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@akaheisenberg

I had originally thought whooping cough as well but I guess it was ruled out by the sound of her cough early on.

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@akaheisenberg – I don’t think it should be ruled out yet. There is no harm in asking them to consider it. Adults can give it to children- adults’ immunity wears off- their illness may not be so dramatic. That’s why nowadays grandparents are asked to get booster shots.

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