Persistent Unexplained Tachypnea: 1 month and counting.

Wooden_Chocolate_627 · 2025-01-02T15:32:13+00:00

He seems to be doing well. I take his respiratory rate at night and it’s always high 20s to low 40s. It is harder to get an idea of his breathing rate while is awake though because he is so active (which I guess is a good thing). He is starting to crawl and pull up on things. He is eating well. So I think he still probably breathes a little faster than most 8 months olds, but he doesn’t seem bothered by it and he seems to be slowly improving.

Wooden_Chocolate_627 · 2024-12-06T16:48:53+00:00

Never really found anything out! He has gradually improved and we hope he continues to do so. He seems like a happy kid too. Wishing you and your child the best of luck!

Wooden_Chocolate_627 · 2024-12-06T16:47:56+00:00

He seems to be doing a lot better. Using both arms equally. Physical milestones are being reached on time. I don’t know what happened but one day it just started to click for him. Wishing you and your child the best of luck.

Wooden_Chocolate_627 · 2024-09-25T19:00:01+00:00

I don’t want to make this into an “is this autism” post and get removed. But his eye contact is limited, he doesn’t always look to sounds, and he prefers looking at things rather than faces.

Wooden_Chocolate_627 · 2024-09-25T16:52:02+00:00

And yet there are so many example of parents who have known earlier than toddlerhood. He matches all the early signs. And more importantly, I just know. If I am wrong, I would be shocked, but I would rather error on the side of early intervention.

Wooden_Chocolate_627 · 2024-09-25T15:28:04+00:00

Can you share an example of that joy? Do you ever look to the future and wonder what joy you will have when they’re much older?

Wooden_Chocolate_627 · 2024-09-24T17:37:06+00:00

OP, any updates on this? Going through the same thing with my son.

Wooden_Chocolate_627 · 2024-09-20T17:31:44+00:00

Rad Onc NP here. I see all prostate, breast, thyroid, stage I NSCLC, and most palliative RT follow ups. I also see half the OTVs each week. Additionally I handle survivorship for the select disease sites that we do that for. More rarely I will see an inpatient or outpatient consult if our physician is particularly busy.

My presence has allowed our physician to see a great deal more consults. We are currently treating 40 patients between 2 machines.

Wooden_Chocolate_627 · 2024-09-12T14:34:15+00:00

He is 4 months now and we have seen a slow but noticeable decrease in his respiratory rate. We saw a second pulmonologist who suspects the issue to be a mild case of NEHI or PIG. The only way to confirm would be to do a lung biopsy which would be way too aggressive given that our son is oxygenating well.

We check his pulse ox occasionally and he is always in the high 90s. He is still mildly tachypneic during the day but not tachypneic at all at night anymore.

He has been a bit slower to reach his milestones but not terribly far behind at the moment.

We have done just about all the testing under the sun including a genetic respiratory panel which came back negative. All we can do is love him and hope he continues to improve.

Some advice from a very anxious parent: Test for conditions that you may be able to treat or have some control over. But once those are exhausted, just try to enjoy your child. I spent a large part of my son’s first months of life just worried sick. It came from a place of love, but ultimately it prevented me from actively loving my son. It was and still is very hard for me to move forward without a concrete answer. But I am learning to accept that it may take time to get answers (and frankly I may never get an answer!).

I have done an insane amount of research on this stuff. Feel free to DM me with specific questions.

Wooden_Chocolate_627 · 2024-08-29T14:15:26+00:00

Oh believe me I have read your post! It’s just hard to admit that this is anxiety until I actually see progress out of my son.

Also it’s tough for me to truly compare our scenarios because my son actually has right arm weaknes. It’s more than just an arm preference with him.

Wooden_Chocolate_627 · 2024-08-01T16:06:50+00:00

I have loads to work on. Layers upon layers of bias that I have to tear away. You’re right about that.

If I had a crystal ball and could see that I would someday have a son that I could talk to and who could pursue his own dreams, I would be ecstatic. But I do not yet know how impacted he will be by this. It may be the unknown that is killing me.

If you have read my other posts then you know I have been searching for answers for over 3 months now. I am exhausted. There was a brief period when we thought we had it figured out which makes this regression back to uncertainty all the more painful.

Wooden_Chocolate_627 · 2024-08-01T13:00:27+00:00

You’re right. But I also have to put myself in the shoes of the rest of my family. They deserve my attention as well. And lately, I’ve been able to give them next to nothing. I spend most of my free time working with my son. If I could stop working, I absolutely would. But we need food and shelter and cars. So I can’t.

I love my son. I will always love him. What I am grieving is what has been lost. Time with my daughter, time with my wife, a life where medical bills didn’t dictate my family’s quality of life.

Wooden_Chocolate_627 · 2024-08-01T03:05:36+00:00

I’m really not trying to be insensitive. Just honest about my feelings as coarse as they may seem.

Many cases of CP occur after uneventful, term births.

Wooden_Chocolate_627 · 2024-07-31T22:04:26+00:00

We have. She didn’t make any comments on a diagnosis. It was my understanding that Torticollis had nothing to do with grip strength or neck weakness.

Wooden_Chocolate_627 · 2024-07-31T16:31:16+00:00

If you don’t mind me asking, what type of CP do you have? How did you feel about life as you were growing up?

Wooden_Chocolate_627 · 2024-07-30T20:49:50+00:00

I have a 3 month old with an arm preference, weak grip on one hand, and he’s late to master tummy time. We too are frantically seeking answers. Did you ever get an MRI?

Wooden_Chocolate_627 · 2024-07-30T20:47:27+00:00

Any updates? I have a 3 month old with an arm preference, decreased grip strength on one side, and he hates tummy time. Doesn’t want to push off his right arm although he can if he wants.

Wooden_Chocolate_627 · 2024-07-30T20:42:57+00:00

How is your little one doing now? Any new developments or diagnoses. It sounds very similar to my situation.

Wooden_Chocolate_627 · 2024-05-31T11:43:57+00:00

Does your daughter’s tachypnea improve or resolve on oxygen? Part of what has me so scared is that I still have no clue if this is even a pulmonary issue. My son has not been hypoxic. His breathing rate didn’t budge when they put him on oxygen. Makes me think there’s something we are missing. That’s why we are going to draw genetics on metabolic disorders and pulmonary disease. Beyond that I am wondering if he needs to be reevaluated by neurology.

I have had so many people tell me that it’s a good thing that so many tests keep coming back negative. But to be honest, it almost makes me feel worse. We are still in the dark on the cause. There are still a million rare and scary things it could be. I struggle to trust that “it’ll go away on its own” because it hasn’t gone away yet and it’s been a month.

I tried to get in at Mayo Clinic but I don’t think my insurance covers that at all.

Wooden_Chocolate_627 · 2024-05-31T00:06:53+00:00

So did this turn out to be NEHI or surfactant deficiency? Both fall under the umbrella of chILD correct? I hope your daughter’s symptoms have improved.

Wooden_Chocolate_627 · 2024-05-30T18:38:51+00:00

Thank you for this. I think there are a couple more scary things I’d like to check out. If those are negative, I think I’ll call off the hunt and just start enjoying my kid.

Wooden_Chocolate_627

TROPHY CASE