20mo toddler, ongoing issues for 12mo no diagnosis

Posted by akaheisenberg @akaheisenberg, Nov 1, 2020

<p>Hi everyone,</p><p>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.</p><p>Brooklyn TImeline of events</p><p>Late October 2019<br />-Woke up with a fever and vomiting the night before flying to Minnesota.<br />-Seemed fine several hours later, and proceeded to fly to Minnesota.<br />-Mom got sick also, fever, chills, vomiting approximately 3 days later while in Minnesota<br />-Flew home seemed fine<br />-Noticed a cough had developed</p><p>Early November 2019<br />-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)<br />-Cough became severe – Diagnosed as croup cough<br />-Brooklyn refused to take the steroid treatment, she would vomit every time we attempted to administer medicine</p><p>Late November 2019<br />-Still coughing and having a difficult time with bottle drinking<br />-ML intake began to decrease see attached chart</p><p>December 2019<br />-Still coughing (possibly back to back illnesses)<br />-ML intake decreased as well<br />-Started to notice lethargicness<br />-Mid December Brooklyn began wearing a helmet due to flat spots on her head</p><p>January 2020<br />-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)<br />-Noticed that she had lost significant weight<br />-Was hospitalized for failure to thrive<br />-Spent 6 days at summerlin hospital<br />-They installed an NG tube and fed her that way<br />-Performed a swallow test and determined she was fine<br />-Performed an upper GI stomach emptying test – results were fine<br />-Was diagnosed with RSV while in the hospital<br />-OT found no issues with her drinking<br />-GI and Lung Spec. agreed acid reflux<br />-We left after she began eating better on her own<br />-After leaving hospital we ate fine for a few days before she began to cough again<br />-I gave her steroids from her croup cough diagnosis<br />-Immediate change in her eating<br />-This worked for several weeks before she began to eat poorly again<br />-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</p><p>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.</p><p>Febuarary 2020<br />-Saw GI spec. and Lung spec.<br />-Both agreed still acid reflux and scheduled an endoscopy to verify<br />-Was prescribed several different acid reflux medicines<br />–No differences noted<br />-Was prescribed two different nebulizer medicines<br />–No differences noted<br />-Stabilized a little bit with the addition of oral steroid treatment</p><p>March 2020<br />-Endoscopy performed at Sunrise<br />-No signs of aspiration or abnormalities (Had to fast for 12 hours)<br />-Was noted that there was swelling in the esophagus<br />-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</p><p>Late March 2020<br />-I decided to thicken her formula as I suspected that she was aspirating<br />-Thickened formula started to increase her ML count per feed<br />-Have not stopped thickening since<br />-Began to increase weight as she was eating more formula<br />-Found that she could eat scrambled eggs with very few choking instances<br />-Found ways to increase scrambled eggs calorie count<br />Added butter, milk, and heavy whipping cream to increase caloric intake of eggs<br />-Ate this meal about 2-3 times a day (eating on average 12-18 eggs a week)<br />-Started gaining significant weight and now starting to hit milestones (little over a pound a month weight gain)</p><p>Late March – September 2020<br />-Began eating additional foods – Mac and cheese, fish fillets, chicken, crackers<br />-Sometimes would gag and vomit or cough and vomit<br />-Began crawling on all fours<br />-Began pulling herself up and walking around furniture<br />-Learned some words and can answer questions with head shakes or body language<br />-Can say, Dad, mom, baby, up, sit,<br />-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)<br />-Can point out various objects on her body, nose, hair, ears, eyes, mouth, teeth, knees, feet, belly button<br />-Likes to point to things in books and have us say the name<br />-Can point at some images when asked – where's the penguin, elephant, fish, giraffe ect<br />-Can clap hands, stomp feet, dance, high five, blow kisses<br />-Cannot walk or stand unassisted<br />-Loves to go walking by holding onto our hands</p><p>October 2020<br />-Got sick with a bad cold (possibly covid?)<br />-Hasn't really recovered since<br />-Coughing a lot again even with thickened fluids<br />-Some solids that she has been doing well with now are causing issues<br />-Gaging at times with the bottle or solid foods<br />-Lost about a half pound in 1 month from Sept to Oct<br />-Breathing sounds wet again after eating (Same as initially)<br />-Walking seems to be a little worse now, less coordinated<br />-Is more active however, wants to walk whenever she can (possible cause of weight loss?)</p><p>Personal Opinion or Diagnosis<br />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.</p><p>My reasons for believing in this diagnosis<br />-Thickening fluids has for the longest time cured the coughing while drinking or reduced it down to a minimal amount<br />-When she does get sick her breathing gets very wet and raspy sounding<br />-She typically does not have a fever however<br />-Her breath stinks when she is sick<br />-She has phlegm when coughing<br />-She at times has Stridor when breathing or what I believe Stridor to be<br />-She sneezes a lot when she is sick – however her sneezes sound like they have nowhere to go if that makes sense<br />-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<br />-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</p><p>Supporting evidence of dysphagia aspiration / pneumonia<br />Vomiting never occurs without coughing or gagging<br />Stinky breath (possibly pneumonia?)<br />Raspy breathing / wet sounding<br />While drinking this sound gets worse or more pronounced<br />Sneezing that sounds restricted (no idea here but this has been present since last October)<br />When she sneezes or vomits it is not uncommon for the food/milk to come out her nose<br />Sometimes I can see into her throat when she begins vomiting, it looks like food is present in the pharynx area<br />All acid reflux medications that we tried did not help in anyway<br />Nebulizer also did not help at all either, however this was extremely difficult to administer<br />Before she we started going downhill again none of the above symptoms were present or were minimally present<br />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.<br />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.</p>

@astaingegerdm

@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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Okay so now we have some updated info, and I forgot to mention that she has also started developing crossed eyes about 2 weeks ago. We saw a neurologist this morning. He was very concerned that all of this happened after getting a viral respiratory infection, since she was perfectly healthy prior to our illness in October 2019. He immediately suggested ADEM as a possible cause. We are scheduling a MRI and also DNA testing while she's sedated for the MRI. Depending on the MRI we may need to do a lumbar puncture also. Still waiting for the ENT in December.

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@akaheisenberg – Thanks for the update. This must be extremely stressful for you with this new development. It’s good that the neurologist is testing her. Hang in there!

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@akaheisenberg I wanted to share an upcoming video Q&A that you might be interested focusing on failure to thrive in youth happening this Thursday at 11am CST. See the link below for the details!

– Video Q&A on Failure to Thrive and Fatty Liver Disease: Two ends of the Nutrition Spectrum in Children
https://connect.mayoclinic.org/webinar/video-qa-failure-to-thrive-and-fatty-liver-disease-two-ends-of-the-nutrition-spectrum-in-children/?date=1606953600
How has this past week been for your daughter and have you learned anything more?

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Saw the ent on Friday. She noticed she has enlarged tonsils, but we need to do a sleep study and another barium swallow test to see if they are causing any of the issues. MRI is today.

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@akaheisenberg – Thank you for the update! Hope you will have an answer soon.

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Wow it has been awhile but it looks like we finally got answers. I'm posting this in hopes it helps someone else one day. Since the last time I posted we had an MRI. The MRI showed a chiari 1.5 malformation. Neurologist refered us to neurosurgeon who recommended surgery. We had brain surgery on Monday and are now recovering. Still to soon to know if this fixed our issues but the neurosurgeon is very confident that it will. Her brain stem tonsils were hanging down into the spinal cord region causing increases cranial pressure and pinching the nerves in that area. Surgery was able to remove a peice of the top vertebrae and some of the skull to create extra space for the brain.
After seeing many doctors who ruled our condition as acid reflux we finally saw the right doctor's to get us the answers we needed. Hopefully this comes in handy for someone some day. Will post a follow up in about a month on the results of surgery.

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@akaheisenberg

Wow it has been awhile but it looks like we finally got answers. I'm posting this in hopes it helps someone else one day. Since the last time I posted we had an MRI. The MRI showed a chiari 1.5 malformation. Neurologist refered us to neurosurgeon who recommended surgery. We had brain surgery on Monday and are now recovering. Still to soon to know if this fixed our issues but the neurosurgeon is very confident that it will. Her brain stem tonsils were hanging down into the spinal cord region causing increases cranial pressure and pinching the nerves in that area. Surgery was able to remove a peice of the top vertebrae and some of the skull to create extra space for the brain.
After seeing many doctors who ruled our condition as acid reflux we finally saw the right doctor's to get us the answers we needed. Hopefully this comes in handy for someone some day. Will post a follow up in about a month on the results of surgery.

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@akaheisenberg, thank you, thank you for taking the time to update everyone. I was wondering how you and your daughter and family were doing. Such a long road, but I'm so glad you got answers and treatment. Please do keep us posted on her post surgery recovery.

You must be relieved and exhausted.

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@akaheisenberg

Wow it has been awhile but it looks like we finally got answers. I'm posting this in hopes it helps someone else one day. Since the last time I posted we had an MRI. The MRI showed a chiari 1.5 malformation. Neurologist refered us to neurosurgeon who recommended surgery. We had brain surgery on Monday and are now recovering. Still to soon to know if this fixed our issues but the neurosurgeon is very confident that it will. Her brain stem tonsils were hanging down into the spinal cord region causing increases cranial pressure and pinching the nerves in that area. Surgery was able to remove a peice of the top vertebrae and some of the skull to create extra space for the brain.
After seeing many doctors who ruled our condition as acid reflux we finally saw the right doctor's to get us the answers we needed. Hopefully this comes in handy for someone some day. Will post a follow up in about a month on the results of surgery.

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@akaheisenberg I will second that appreciation that @colleenyoung expressed as well. Coming back to tell your daughter's story and share her outcome with this community will, no doubt, help others in the future.

You may notice that I have also just added this discussion to the Brain & Nervous System Group in order to provide other members with access to your daughter's and your experience should it resonate.

What a fantastic outcome to have found a doctor who could solve this mystery you have been dealing with. Wishes for a good and fast recovery!

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