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Forum -> Children's Health
Anyone in the health field that can help me?
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amother
OP


 

Post Tue, Nov 05 2019, 10:46 pm
amother [ Cerise ] wrote:
It's ridiculous to ask for a "2nd opinion" from an anonymous poster who has no medical credentials, no access to your childs medical history, no information about the specialist referral and visit, and no history of having examined your child or ability to currently examine your child.

And you have instructions from the pulmonologist. Send the video. That's their job to figure out. Not yours or an anonymous poster on Imamother.


No need to get all hyped up. all I need is someone to take a look- see if they concur with this being out of the ordinary or not- it will not change the course on how I will deal with this. perhaps I might choose to send a different video though. thats all.
and no worries, if I do decide to send this video he will anyway not look at it before at least thursday- so no rush there.
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amother
OP


 

Post Tue, Nov 05 2019, 10:51 pm
amother [ Mauve ] wrote:
It's so sad when medical professionals don't take a mother's concerns seriously. Doctors should never brush off a mother's concerns. A mother knows her child, knows what's normal for the child and what's not.

OP, I have a child with a rare health condition. It took a few years to get diagnosed because it wasn't something that doctors could see in the office, more like an 'invisible illness'. I was brushed off and basically told that I'm crazy. So I hear you in thinking a hundred times before forwarding the video to the doctor.

I don't know anything about tachypnea so I don't think I can help you too much. I can look at the video but I will definitely tell you to forward to doctor Very Happy You can email me looking2rentapartment@gmail.com

I'm sorry to hear that. thats so tough. I appreciate your offer to help- but since I already shared so much info here- I do need someone that knows what this should look like. Thanks though!
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amother
Olive


 

Post Tue, Nov 05 2019, 10:53 pm
amother [ Turquoise ] wrote:
Have you watched YouTube videos of what retractions look like? Get an idea of what you’re looking for and watch your video again.
Look under the chin at the neck and between the ribs. If you see the skin pulling in then it could be retractions. If you aren’t sure if it’s considered retractions then it probably isn’t.


This. Also you can watch her breathe when you're sure she's feeling fine, so you have a reference point.

In any case I agree with the other posters that it sounds like you're afraid of not being taken seriously, but pediatricians are often not specialists.

Have you been to an allergist / immunologist?
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amother
OP


 

Post Tue, Nov 05 2019, 10:56 pm
Quote:
Have you watched YouTube videos of what retractions look like? Get an idea of what you’re looking for and watch your video again.
Look under the chin at the neck and between the ribs. If you see the skin pulling in then it could be retractions. If you aren’t sure if it’s considered retractions then it probably isn’t.


amother [ Olive ] wrote:
This. Also you can watch her breathe when you're sure she's feeling fine, so you have a reference point.

In any case I agree with the other posters that it sounds like you're afraid of not being taken seriously, but pediatricians are often not specialists.

Have you been to an allergist / immunologist?

I did. those videos all look a lot worse than she does- since she doesn't have the nose flaring- but more of the ribs pulling in- which again- could be its fine (ftr its been on/off for months now & shes doing fine)

We haven't seen allergist/immunologist- where would that come into play though?
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amother
Cerise


 

Post Tue, Nov 05 2019, 10:58 pm
amother [ OP ] wrote:
No need to get all hyped up. all I need is someone to take a look- see if they concur with this being out of the ordinary or not- it will not change the course on how I will deal with this. perhaps I might choose to send a different video though. thats all.
and no worries, if I do decide to send this video he will anyway not look at it before at least thursday- so no rush there.


I suggest that you ask either your pediatrician or pulmonologist for parameters on what tachypnea would mean for your child. Given her age and medical history. Tachypnea would be independent of other findings that other posters are describing. It refers to an elevated respiratory rate, of which the norms vary based on age and other factors. You can Google info on how to calculate respiratory rate. But again, absent medical background and experience, you should definitely run all concerns by a physician who knows your child.

ETA:. Additionally, you should ask her physicians for additional signs that need to be reported- or not. And how to determine that, once again, based on her age and medical history
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amother
OP


 

Post Tue, Nov 05 2019, 11:00 pm
amother [ Cerise ] wrote:
I suggest that you ask either your pediatrician or pulmonologist for parameters on what tachypnea would mean for your child. Given her age and medical history. Tachypnea would be independent of other findings that other posters are describing. It refers to an elevated respiratory rate, of which the norms vary based on age and other factors. You can Google info on how to calculate respiratory rate. But again, absent medical background and experience, you should definitely run all concerns by a physician who knows your child.

yes, we did that (see a previous post). my question is more on whether she is having some retractions along with that or not.
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amother
Cerise


 

Post Tue, Nov 05 2019, 11:05 pm
amother [ OP ] wrote:
yes, we did that (see a previous post). my question is more on whether she is having some retractions along with that or not.


Retractions can be subtle. It requires a trained and experienced eye. Again, follow the parameters of your child's physicians.
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amother
OP


 

Post Tue, Nov 05 2019, 11:05 pm
I just wanna say- that I thought long & hard before I came posting here & getting some hysterical replies... But- we are under a doctors care and they were very chilled about it. and like I mentioned above- nothing is going to change now regardless- we might do a sleep study eventually.
Also, dr didn't ask me to send videos- just to keep track and so I figured I'll take some videos to show whats going on and therefore I would like to first run it by someone who knows what its supposed to look like. since I don't have any friends who fit into this description I figured I'll reach out here and see if anyone within the health system would be willing to help...
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amother
Olive


 

Post Tue, Nov 05 2019, 11:09 pm
amother [ OP ] wrote:
Quote:
Have you watched YouTube videos of what retractions look like? Get an idea of what you’re looking for and watch your video again.
Look under the chin at the neck and between the ribs. If you see the skin pulling in then it could be retractions. If you aren’t sure if it’s considered retractions then it probably isn’t.


I did. those videos all look a lot worse than she does- since she doesn't have the nose flaring- but more of the ribs pulling in- which again- could be its fine (ftr its been on/off for months now & shes doing fine)

We haven't seen allergist/immunologist- where would that come into play though?


So, I'm only familiar with the breathing issue aspect as that is my dd's issue, and may be not at all right in your situation.

I'm wondering if there's an environmental trigger. My dd reacted to either: A change in temperature, iow, going outside with her class to play on a chilly (but not freezing) day or returning inside, or something blooming outdoors, or something in the basement where her nursery class was located, or a virus, possibly the flu--which was weird because she actually never came down with flu symptoms yet did test positive in the lab, or something else altogether.

And the result of this trigger, whatever it was, was wheezing. Which, if not managed could lead to a full-blown issue.

The allergist helped us narrow down and avoid potential triggers, and what to do if she did start to wheeze, as well as a maintenance meds. Bh, we've been able to manage it pretty well.

It just seems to me like it might be worth having a look by an expert in breathing-related issues; maybe there's something you're not thinking of.

Btw my dd's nose never flared, even in full-blown flare mode when her oxygen sat was 89 (normal should be at least 96 or 97)

Hatzlocha

Eta. In sum, there may be an environmental trigger that the pulmonologist has not and won't consider, but the allergist may help you rule out
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amother
Sapphire


 

Post Tue, Nov 05 2019, 11:17 pm
amother [ OP ] wrote:
I just wanna say- that I thought long & hard before I came posting here & getting some hysterical replies... But- we are under a doctors care and they were very chilled about it. and like I mentioned above- nothing is going to change now regardless- we might do a sleep study eventually.
Also, dr didn't ask me to send videos- just to keep track and so I figured I'll take some videos to show whats going on and therefore I would like to first run it by someone who knows what its supposed to look like. since I don't have any friends who fit into this description I figured I'll reach out here and see if anyone within the health system would be willing to help...


If you can't see your kids face I would post it in YouTube under a title "is this ___?" and a description. Be prepared for very cruel comments but that's the ultimate crowdsourcing. The public has helped diagnose ppl on Facebook (girl with an odd glare in her eye) and TV (guest with a thyroid tumor) more than once.
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cbsp




 
 
    
 

Post Tue, Nov 05 2019, 11:26 pm
OP

DS was born with a lung issue. That was seemingly resolved with surgery at birth.

For years I told every doctor that he wasn't breathing right - that sure, he took the correct number of breaths per minute but didn't actually breathe rhythmically to achieve it. (I'd have to actually count for the full minute rather than only 15 seconds and multiply by 4. Otherwise it could seem as though he was taking way more breaths than physically possible depending on how off sync he was). I kept saying that breathing came secondary to him and the docs all told me that breathing is instinctive and there's nothing to be done to fix it even if he had such an issue which he doesn't.

When he was 5 I took him for an unrelated OT eval.

The first thing the OT asked - after observing him for only a few minutes - do you know your son holds his breath? Banging head Banging head

She introduced me to the Mary Massery workshops of "If you can't breathe you can't function"

She's a PT who's made it her life's mission to spread this info. She has deputize several therapists who are now qualified to give the workshops and has given these workshops globally.

OP, I beg you to find a therapist in your community who has this knowledge. If you are in the NY/NJ area I can help you find such a person.
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amother
OP


 

Post Wed, Nov 06 2019, 1:08 am
amother [ Olive ] wrote:
So, I'm only familiar with the breathing issue aspect as that is my dd's issue, and may be not at all right in your situation.

I'm wondering if there's an environmental trigger. My dd reacted to either: A change in temperature, iow, going outside with her class to play on a chilly (but not freezing) day or returning inside, or something blooming outdoors, or something in the basement where her nursery class was located, or a virus, possibly the flu--which was weird because she actually never came down with flu symptoms yet did test positive in the lab, or something else altogether.

And the result of this trigger, whatever it was, was wheezing. Which, if not managed could lead to a full-blown issue.

The allergist helped us narrow down and avoid potential triggers, and what to do if she did start to wheeze, as well as a maintenance meds. Bh, we've been able to manage it pretty well.

It just seems to me like it might be worth having a look by an expert in breathing-related issues; maybe there's something you're not thinking of.

Btw my dd's nose never flared, even in full-blown flare mode when her oxygen sat was 89 (normal should be at least 96 or 97)

Hatzlocha

Eta. In sum, there may be an environmental trigger that the pulmonologist has not and won't consider, but the allergist may help you rule out

That’s interesting. She hasn’t had wheezing though. Actually, she did a while back- like summer time I think- and she had a bronchoscopy with a biopsy to rule out asthma but it hasn’t been an issue recently.
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amother
OP


 

Post Wed, Nov 06 2019, 1:10 am
cbsp wrote:
OP

DS was born with a lung issue. That was seemingly resolved with surgery at birth.

For years I told every doctor that he wasn't breathing right - that sure, he took the correct number of breaths per minute but didn't actually breathe rhythmically to achieve it. (I'd have to actually count for the full minute rather than only 15 seconds and multiply by 4. Otherwise it could seem as though he was taking way more breaths than physically possible depending on how off sync he was). I kept saying that breathing came secondary to him and the docs all told me that breathing is instinctive and there's nothing to be done to fix it even if he had such an issue which he doesn't.

When he was 5 I took him for an unrelated OT eval.

The first thing the OT asked - after observing him for only a few minutes - do you know your son holds his breath? Banging head Banging head

She introduced me to the Mary Massery workshops of "If you can't breathe you can't function"

She's a PT who's made it her life's mission to spread this info. She has deputize several therapists who are now qualified to give the workshops and has given these workshops globally.

OP, I beg you to find a therapist in your community who has this knowledge. If you are in the NY/NJ area I can help you find such a person.
wow. That’s wild! I would definitely look int this. I’m in NY area.
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amother
OP


 

Post Wed, Nov 06 2019, 1:12 am
amother [ Sapphire ] wrote:
If you can't see your kids face I would post it in YouTube under a title "is this ___?" and a description. Be prepared for very cruel comments but that's the ultimate crowdsourcing. The public has helped diagnose ppl on Facebook (girl with an odd glare in her eye) and TV (guest with a thyroid tumor) more than once.

Thanks for suggestion- but that is way beyond my comfort level.
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amother
Olive


 

Post Wed, Nov 06 2019, 8:02 am
amother [ OP ] wrote:
That’s interesting. She hasn’t had wheezing though. Actually, she did a while back- like summer time I think- and she had a bronchoscopy with a biopsy to rule out asthma but it hasn’t been an issue recently.


Retractions would indicate wheezing. But whatever term you use, the retractions are a result of difficulty breathing that may have been triggered (ie, the inflammation of the airways that causes the difficulty may have been triggered) by something environmental. And an allergist may be able to help identify and manage the triggers and the reactions. In any case good luck.
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cbsp




 
 
    
 

Post Wed, Nov 06 2019, 1:02 pm
amother [ OP ] wrote:
wow. That’s wild! I would definitely look int this. I’m in NY area.


Ok.

So we had a consultation with
Nechama Karman
8 Bond St Ste 202
Great Neck, NY 11021
(516) 829-0960

She may be helpful in finding a PT who might take your insurance, etc. if her prices are out of budget.

If your child is getting services via EI then please also ask via that network. The Mary Massery workshops are given to PTs, OTs, and SLPs.
https://www.masserypt.com/

If you can come to NJ there's a PT who works at Children's Specialized Hospital (we saw her in Tom's River) who also has a private practice
Trish (Patricia) West-Low
Phone 732-600-7788
Email pttrish@aol.com

Children's specialized hospital :
1.888.244.5373

Hatzlacha!
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