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cbsp




 
 
 
 

Post Wed, May 12 2021, 5:29 pm
amother [ Chocolate ] wrote:
I don't want to derail this thread but I see so many mamas on here who've dealt with these issues so I'll ask and hope any of you can advise me.

My daughter had nearly collapsed bilateral lungs when she was born, spent 2 weeks in the NICU til they got stronger. At some point, they suspected a heart defect so the cardiologist ran an Echo and sonogram, which showed a PFO. Dr said it was minor and that there wasn't anything that needed to be done.

However, she still looks like she has to work hard to breathe. I know this because she has an indent on her neck which goes in very deeply when she breathes. She's 5 months old. She has had this since she was born. Her regular pediatrician said there's nothing to worry about. But I am worried, especially since it seems to me like she's also sweating very excessively when she eats. Like she's working too hard.

Do you think I should see another cardiologist at least to calm me down? Do you think I have anything to worry about?

Hope I'm not hijacking this post because that was not my point!! I'm just at a loss. Any advice would really really be appreciated!


Oh boy.

Without knowing your baby's other medical history, the symptoms do seem worrisome.

I'm coming from a pulmonary perspective (my kid was born in CHoP with a lung issue) - your baby sounds like my kid did. The sweating does indicate an issue.

My kid had an issue with coordinating suck - swallow - breathe. We were told to pause feeding every 5 swallows (does NOT work when nursing!) so he could figure life out. Eventually he was able to increase his tolerance.

The other thing that no one medical seemed to know about at the time is there's a way via physical therapy to help teach breathing (it's "supposed" to be automatic, but sometimes help is needed). A PT named Mary Massery has a workshop named "if you can't breathe you can't function" - she's made it her mission in life to spread her techniques. She and her "talmidim" literally changed the trajectory of my kids' life.

Do you have a pulse ox monitor? Are her heart rate and o2 saturation numbers within normal limits? Is her respiratory rate predictable and steady, with the rate being within normal limits? Does she seem to hold her breath?

I'm not discounting the cardiology angle, just can't address it with my lack of knowledge.

B'hatzlacha!
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amother




Chocolate
 

Post Wed, May 12 2021, 5:44 pm
cbsp wrote:
Oh boy.

Without knowing your baby's other medical history, the symptoms do seem worrisome.

I'm coming from a pulmonary perspective (my kid was born in CHoP with a lung issue) - your baby sounds like my kid did. The sweating does indicate an issue.

My kid had an issue with coordinating suck - swallow - breathe. We were told to pause feeding every 5 swallows (does NOT work when nursing!) so he could figure life out. Eventually he was able to increase his tolerance.

The other thing that no one medical seemed to know about at the time is there's a way via physical therapy to help teach breathing (it's "supposed" to be automatic, but sometimes help is needed). A PT named Mary Massery has a workshop named "if you can't breathe you can't function" - she's made it her mission in life to spread her techniques. She and her "talmidim" literally changed the trajectory of my kids' life.

Do you have a pulse ox monitor? Are her heart rate and o2 saturation numbers within normal limits? Is her respiratory rate predictable and steady, with the rate being within normal limits? Does she seem to hold her breath?

I'm not discounting the cardiology angle, just can't address it with my lack of knowledge.

B'hatzlacha!


Yes, we did the paced feedings when she was born because she forgot to breathe while eating. Then we cut down on her feedings because her stomach got too full and pressed down on her lungs... since then she’s been in the PICU with RSV for a few days... it’s been a bumpy ride to say the least.

I had thought that by now she does remember to breathe but she does choke a lot when she eats and I don’t think it’s necessarily the flow.

I don’t have any of those machinery at home because I know I’ll be obsessive about it. So maybe I should see a pulmonologist first? I do think she breaths fast but it’s hard to know since she’s never really laying still for me to count. (I’ve tried it with a Hatzalah member cousin on the phone because I was nervous.)
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amother




Beige
 

Post Wed, May 12 2021, 5:49 pm
Echoing CBSP. Definitely have a pulmonologist do a detailed exam.

We’re very happy with Dr. Kazachkov at NYU Fink (if you’re in the ny area). He’s very zachlich and no nonsense type, but I find him to be a very thorough physician and spot on.
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amother




Chocolate
 

Post Wed, May 12 2021, 5:56 pm
amother [ Beige ] wrote:
Echoing CBSP. Definitely have a pulmonologist do a detailed exam.

We’re very happy with Dr. Kazachkov at NYU Fink (if you’re in the ny area). He’s very zachlich and no nonsense type, but I find him to be a very thorough physician and spot on.


Ok. I called and left a message at his office. I need answers or to be calmed down.

Thanks all for your help!
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amother




Chocolate
 

Post Thu, May 13 2021, 2:42 pm
amother [ Chocolate ] wrote:
Ok. I called and left a message at his office. I need answers or to be calmed down.

Thanks all for your help!


I bh got an appointment for next week after Yom Tov. Whew. Scared but it’s the right thing to do.
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amother




OP
 

Post Thu, May 13 2021, 3:28 pm
I got an appt for in in 2.5 weeks with dr. Levassuer. I am really nervous and they won't let dh in...
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cbsp




 
 
 
 

Post Thu, May 13 2021, 3:30 pm
amother [ OP ] wrote:
I got an appt for in in 2.5 weeks with dr. Levassuer. I am really nervous and they won't let dh in...


So nerve wracking.
Can your husband join via zoom (whatsapp video) or even via phone?
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amother




Maroon
 

Post Thu, May 13 2021, 3:31 pm
amother [ OP ] wrote:
I got an appt for in in 2.5 weeks with dr. Levassuer. I am really nervous and they won't let dh in...


It’s insanity ! I’ve been dealing with a medical issue with my son and all of it I did alone. Waiting in waiting rooms are not with being allowed. But ball games, bars and airplanes are fine. I also have a baby that I can’t take to any appointments which is a whole different issue
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amother




OP
 

Post Thu, May 13 2021, 5:10 pm
They said only one parent. Since she is nursing I have to take her. Its ridiculous. Dh is upset as well. He happens to have to go to court fir a ticket the same time but would fight it if he can come.
I am so nervous since I am not as strong...really want dh with me.
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amother




Beige
 

Post Thu, May 13 2021, 5:48 pm
amother [ Chocolate ] wrote:
I bh got an appointment for next week after Yom Tov. Whew. Scared but it’s the right thing to do.

If it’s thurs morn, say hi Wink
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amother




Beige
 

Post Thu, May 13 2021, 5:54 pm
amother [ OP ] wrote:
They said only one parent. Since she is nursing I have to take her. Its ridiculous. Dh is upset as well. He happens to have to go to court fir a ticket the same time but would fight it if he can come.
I am so nervous since I am not as strong...really want dh with me.

Hatzlacha
I think Columbia and Sloan Kettering (from the NYC hospitals I know) are the strictest with their Covid policy still... so so frustrating Sad
The good new is that they finally reopened (or opening shortly) the bikur cholim room, so you can stop in to get a bite and coffee

I hope you get good news.
I second the video calling your husband during the visit.

Will they be doing an echo? We got lucky when dc needed an echo at that age that dc fell asleep- but it’s a good idea to bring along something to keep your baby calm (stuffed animal, toy to distract, pacifier)

Good luck!
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Just One




 
 
 
 

Post Thu, May 13 2021, 6:05 pm
Absolutely see a pulmonologist and cardiologist to rule out something more serious.
Otherwise, how is your baby's physical development? Is she hitting her milestones? I had similar issues with my son, we went back and forth between his cardiologist and pulmonologist but weren't able to find the cause for his difficulty in breathing.
Bh his breathing issues finally resolved when he started physical therapy.
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amother




Chocolate
 

Post Wed, May 19 2021, 10:43 am
amother [ Beige ] wrote:
If it’s thurs morn, say hi Wink


It is! Thursday noon iyh
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amother




Chocolate
 

Post Wed, May 19 2021, 10:44 am
amother [ OP ] wrote:
They said only one parent. Since she is nursing I have to take her. Its ridiculous. Dh is upset as well. He happens to have to go to court fir a ticket the same time but would fight it if he can come.
I am so nervous since I am not as strong...really want dh with me.


Good luck!! It’s so hard having to go alone. Hugs and I hope it goes well iyh!
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amother




Chocolate
 

Post Wed, May 19 2021, 10:45 am
Just One wrote:
Absolutely see a pulmonologist and cardiologist to rule out something more serious.
Otherwise, how is your baby's physical development? Is she hitting her milestones? I had similar issues with my son, we went back and forth between his cardiologist and pulmonologist but weren't able to find the cause for his difficulty in breathing.
Bh his breathing issues finally resolved when he started physical therapy.


Yup seeing on tomorrow b”eh. She’s not gaining weight as well as she should. The last time I’ve been to the dr he was really not happy with her weight. I haven’t been back because I moved and need to see a new dr which I’m not looking forward to (explaining her whole history). She’s eating enough though.
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amother




Chocolate
 

Post Wed, May 19 2021, 10:48 am
amother [ Chocolate ] wrote:
Yup seeing on tomorrow b”eh. She’s not gaining weight as well as she should. The last time I’ve been to the dr he was really not happy with her weight. I haven’t been back because I moved and need to see a new dr which I’m not looking forward to (explaining her whole history). She’s eating enough though.


Daavka now she got a cold during Yom Tov, I hope the dr will be able to see everything despite it.
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amother




Beige
 

Post Wed, May 19 2021, 11:17 am
Chocolate- hatzlacha
I’ll probably see you Wink
Ask them about a consult with Tina Tan- she’s the supervisor for the speech/swallow dept.
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amother




Chocolate
 

Post Wed, May 19 2021, 2:04 pm
Should I cancel if she has a bad cold?
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amother




OP
 

Post Wed, May 19 2021, 2:31 pm
Hatzalacha! I called back today to try to get an earlier appointment with another doctor, but they had nothing available. I am just going to keep the appointment I have.
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amother




Beige
 

Post Wed, May 19 2021, 3:04 pm
amother [ Chocolate ] wrote:
Should I cancel if she has a bad cold?

I wouldn’t. Even if you won’t get an accurate exam, at least you can get the ball rolling- have a doctor listen to your concerns, order imaging/testing or additional consultations if needed.
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