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Ph probe
- Thread starter DanceMom
- Start date
More than likely gag during the probe since its a ng tube like thing that hangs out
From the nose down the throat
So if she is sensitive to feeling things in her throat then yes
Unlike a regular ng - you get used to it Over time
She only has it in for 24 hours
http://www.nationwidechildrens.org/ph-probe-impedance
From the nose down the throat
So if she is sensitive to feeling things in her throat then yes
Unlike a regular ng - you get used to it Over time
She only has it in for 24 hours
From
http://www.nationwidechildrens.org/ph-probe-impedance
We haven't had a pH probe done, but my daughter has plenty of experiences with an NG tube. She thought it was really uncomfortable for the first couple days (especially the first 12 hours) and her nose and throat were sore. However, it really depends on the kid - some hate it and some don't think it's so bad.
When it's inserted, the nurses have kids drink water so it goes down more easily. Not sure if that is how it's done with a pH probe but even just swallowing while it is going down (so she doesn't gag) might help.
When it's inserted, the nurses have kids drink water so it goes down more easily. Not sure if that is how it's done with a pH probe but even just swallowing while it is going down (so she doesn't gag) might help.
Here's a blog that has one kid's experience: http://agirlandhertube.blogspot.com/search/label/impedence
Oh believe me - those first 12 hours were miserable for M! And that was a super thin NG tube (not sure how thick a pH probe is).
Unfortunately, there was not a lot they could do - they gave her some sort of numbing spray for her throat but it didn't help a whole lot.
Good luck - will be thinking of you.
Unfortunately, there was not a lot they could do - they gave her some sort of numbing spray for her throat but it didn't help a whole lot.
Good luck - will be thinking of you.
crohnsinct
Well-known member
Shame they couldn't place the probe while she was under. :thumbdown:
They did. Says her throat is sore but she's dealing better than I thought. Lots of throat clearing and mucus. That seem right?
Has she tried cough drops? My daughter's throat was very sore for quite a while with the NJ tube (much more than the NG tube - the NJ tube is thicker). She also found drinking warm water helpful. They also used a Chloraseptic throat numbing spray.
I hope she gets some sleep tonight - poor A.
I hope she gets some sleep tonight - poor A.
CarolinAlaska
Holding It Together
Jae couldn't stand up straight for several days due to NG tube hurting her throat. It ended up being that she contracted strep throat at the same time :stinks:
She slept very little last night. Just laid quietly watching TV. Would fake sleep when the nurses came in because she "didn't want to deal with them." Lol It is very sore but she's dealing okay. Waiting for the nurse to come and pull it now. Her throat has visible bloody sores, I'm assuming from the endoscope, so I'm sure that's part of it. I'm not convinced we'll get any results from this as she only felt the reflux a handful of times. Just worried we'll still be left wondering. I just refuse to believe this is all psychological.
CarolinAlaska
Holding It Together
You don't always feel reflux.
Biopsy results are back already. I have not heard from the GI, only read the report online. Esophagus and stomach were normal, but "small intestinal mucosa with focal lymphangiectasia pertaining to duodenum" was noted. Googled "lymphangiectasia" and that seems to fit her perfectly but somehow was never detected before. Anyone had this mentioned in their pathology report?
Glad they pulled the tube out! I have not heard that diagnosis before. I looked it up. I hope they figure out how to treat her for this. Keep us posted.
Never heard of it
Good luck
Let us know what the Gi says
Good luck
Let us know what the Gi says
http://www.littleleakers.com/Intestinallymphangiectasia.html
I found this website and it really seems to fit. The only swelling she gets though is of the eyelids.
I found this website and it really seems to fit. The only swelling she gets though is of the eyelids.
A kept telling me yesterday that she had a flap of skin in her throat. Said she could feel it moving up and down when she swallowed. Turns out her uvula is swollen and is hanging down the back of her throat. Yesterday I couldn't even see where it ended. Today it is less swollen, so I can see the end, and it has bloody spots and white patches. Is this from the scope? The probe? Does this mean it is infected? Never had this before....
Damcemom,
I would call the doctor about this.
I would call the doctor about this.
CarolinAlaska
Holding It Together
She needs a strep screen, but it may just be damaged from intubation.
Why did you call on call Gi who scoped her ?
Swollen uvula can block the throat for her airway .
I know our discharge instructions in the past would have had us call ....right away
Swollen uvula can block the throat for her airway .
I know our discharge instructions in the past would have had us call ....right away
I could've, but it really isn't bad enough to warrant an ER visit. She's eating good and playing. We try to hold off and see the Pedi whenever possible.
CarolinAlaska
Holding It Together
She's eating well? I wasn't picturing that.
She is, lol. It takes a lot for her not to eat. I would imagine that eating may be aggravating it worse though so we'll see what the Pedi says. We've been treating with Tylenol and popsicles over the weekend.
Pedi said the uvula is bruised and swollen. Gray had fallen off by appointment time so was probably a scab. Must have gotten bumped during procedure. Keep eating popsicles and drinking cold drinks, lol.
Also had ultrasound of abdomen. Now to wait for answers....
*UPDATE* - Our hospital works fast! lol Report is already available online and ultrasound looks normal. My guess is that when she was so sick over the summer it caused it to become enlarged but it has finally gone back to its normal size. Also comforting to hear that all of her other organs looked good.
Also had ultrasound of abdomen. Now to wait for answers....
*UPDATE* - Our hospital works fast! lol Report is already available online and ultrasound looks normal. My guess is that when she was so sick over the summer it caused it to become enlarged but it has finally gone back to its normal size. Also comforting to hear that all of her other organs looked good.
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CarolinAlaska
Holding It Together
The throat sounds like it will be easily fixed. Any results of the pH probe?
Follow-up appointment next week.
Poor A is sick with low grade fever, body aches, swollen glands, and a sore throat. I suppose she doesn't get sick as often as other kids (thanks to the IVIG) but when she does get sick it seems to set off other things in her system and she gets really sick. Just hoping she can kick this quick because she's working on a dance for a church performance and has her birthday party tomorrow. Bad timing!
Hope she feels better quick and has a very good bday!!!!!!
Her party was a lot of fun (we have such great friends) but she's really not doing well. We're doing albuterol every 2 hours but it isn't helping much. She's been without her daily inhaler for a week because insurance won't cover her prescription and it's been a back and forth nightmare with insurance/pedi/pharmacy. And she waits until all the guests leave to tell me her BMs are basically straight blood. What?!?! She just went to bed and hopefully she'll get good rest and feel better in the morning.
Hugs
The insurance won't cover any maintence med or just not the brand she is currently on ?
I know DH had to switch from Flovent to a different brand due to insurance but typically there is a list and honestly they are almost all the same.
Annoying but can't the pulmo pick something else on the list .
Can the pulmo give her a decadron shot or burst of oral pred to reduce the inflammation in the lungs at least for a week?
Surprised she went down hill that fast
Typically it takes 4-6 weeks for a med to be fully effective and then another 4-6 weeks to be out of their system .
Albuterol every 2 hours that's not working is really a big red flag
Not something you want to get into at all .
Flaring asthma can be deadly quickly - hence the steroids
Did they give you a must head straight to the ER parameters
I know for ds or DH if I have to give albuterol more than every 4 hours
I am allowed once after 20 minutes that's it's then he is to go in for rescue steroids and other treatments .
Doesn't the pulmo have samples for you to "try " until the med are approved ?
I am amazed they let her go with albuterol like that .
I would give the on call pulmo an update now or head straight to the ER
33% of mild asthma has been fatal.
No meds means completely out of control ( albuterol is rescue and will stop working when used on its own).
The insurance won't cover any maintence med or just not the brand she is currently on ?
I know DH had to switch from Flovent to a different brand due to insurance but typically there is a list and honestly they are almost all the same.
Annoying but can't the pulmo pick something else on the list .
Can the pulmo give her a decadron shot or burst of oral pred to reduce the inflammation in the lungs at least for a week?
Surprised she went down hill that fast
Typically it takes 4-6 weeks for a med to be fully effective and then another 4-6 weeks to be out of their system .
Albuterol every 2 hours that's not working is really a big red flag
Not something you want to get into at all .
Flaring asthma can be deadly quickly - hence the steroids
Did they give you a must head straight to the ER parameters
I know for ds or DH if I have to give albuterol more than every 4 hours
I am allowed once after 20 minutes that's it's then he is to go in for rescue steroids and other treatments .
Doesn't the pulmo have samples for you to "try " until the med are approved ?
I am amazed they let her go with albuterol like that .
I would give the on call pulmo an update now or head straight to the ER
33% of mild asthma has been fatal.
No meds means completely out of control ( albuterol is rescue and will stop working when used on its own).
She's been on QVar for years (off and on), but when I went to refill it I was told our insurance no longer covered that med. Our Pulmo moved, and we aren't scheduled to see the new one until mid-February. So while we were at the Pedi I had her call in a prescription for Flovent. They wouldn't cover that either. Pedi has been communicating with the insurance to see what they will cover but so far nothing else has been called in. I will have to call tomorrow to follow up.
We tried weaning over the summer but within 2 weeks she had a flare. This time it was a week. Her flares are mostly chest congestion but she has trouble coughing forcefully enough to expel mucus. Her wheezing is deep and only heard with a stethoscope. She doesn't have the typical asthma attacks that my youngest has had so albuterol isn't always helpful. We have used saline nebs in the past but that prescription is expired. It's just a mess and can't be handled until office hours tomorrow. If things become critical I'll definitely take her to the ER. She was running and playing yesterday so we'll see how she is today.
We tried weaning over the summer but within 2 weeks she had a flare. This time it was a week. Her flares are mostly chest congestion but she has trouble coughing forcefully enough to expel mucus. Her wheezing is deep and only heard with a stethoscope. She doesn't have the typical asthma attacks that my youngest has had so albuterol isn't always helpful. We have used saline nebs in the past but that prescription is expired. It's just a mess and can't be handled until office hours tomorrow. If things become critical I'll definitely take her to the ER. She was running and playing yesterday so we'll see how she is today.
She (and you) needs to catch a break!
I'm glad to hear she was running about today. Maybe that is movement in the right direction.
You are just caught in the perfect storm of waiting to see specialists and insurance and a weekend. Ugh. I hope Monday brings some a "Yes" from the insurance company. I'm going to look for good news from you!
I'm glad to hear she was running about today. Maybe that is movement in the right direction.
You are just caught in the perfect storm of waiting to see specialists and insurance and a weekend. Ugh. I hope Monday brings some a "Yes" from the insurance company. I'm going to look for good news from you!
CarolinAlaska
Holding It Together
Are you sure she doesn't have pneumonia or a Mycoplasma infection? Has she been screened for the flu? Does she have albuterol? Poor girl!
Hope she is doing better though I do agree about being carful about pneumonia. It can be tricky. Keep us posted.
Cough is more productive today. Still using albuterol. Pedi got insurance to approve Flovent so we'll pick that up this evening. She had a normal BM so that's a good sign. Still doesn't feel well but I suppose the virus just needs to run its course. She sees the GI Wednesday so if he feels she needs a chest x-ray or other testing he can order that then.
Saw the GI today. Long story short, he thinks the pathology report notation of intestinal lymphangiectasia is a meaningless find. He dismissed the diarrhea, incontinence, and bloody stools she's been having. Said she's better than she was before starting IVIG. Didn't seem to notice that her eye was swollen and when I mentioned it just shrugged and said it wasn't related. I forgot to mention the EN that's popped up but I doubt that would have mattered. I'm frustrated, yet again, that no one can connect the dots for my child.
CarolinAlaska
Holding It Together
I feel like that often. I'm sure you're very frustrated. I think GI would be a difficult field. There are so many causes for similar symptoms, it seems.
Sounds like it may be time for another GI opinion.
Poor A is really struggling with her asthma. We're using albuterol every 2-4 hours while awake. It helps temporarily but she doesn't seem to be getting any better. We're trying to avoid Prednisone because we know that affects her labs (in a good way) and we're trying to get a real picture of what's going on prior to her next infusion. Watching your kid be sick to prove they're sick is horrible. She's struggling at dance and is at risk for being removed until she's better (which is heartbreaking). Just needed to vent.
Albuterol doesn't fix the problem unfortunately only steriods will do that
Can they bump up your pulmo appt ?
Albuterol will stop working if you try to use it long term.
The pulmo can work magic with Flovent that is equivalent to pred but only for the lungs
Not sure on kids but my DH has done it instead of a steroid burst with just Flovent from his doc
Can they bump up your pulmo appt ?
Albuterol will stop working if you try to use it long term.
The pulmo can work magic with Flovent that is equivalent to pred but only for the lungs
Not sure on kids but my DH has done it instead of a steroid burst with just Flovent from his doc
Our old Pulmo moved out of state so I had to choose a new one. I chose the one with the most experience that does a lot of research. I figured he would be the most likely to understand my non-textbook child and maybe help us in our search for a diagnosis. Unfortunately he only sees patients once a week so availability of appointments is limited.
She's been using Flovent for the last week or so. The prescribed dose is 1 puff twice a day (which is different from QVar...not sure if that's standard or not). Per her sick plan we've been doing 2 puffs twice a day, along with the albuterol. It just doesn't seem to be helping much. I can't hear a wheeze, but then again I never can. She seems to get inflamed very deep in her lungs and it is only heard with a stethoscope. She's coughing a very tight sounding cough several times per minute, particularly with exercise. No coughing fits and her cough is non-productive.
She's been using Flovent for the last week or so. The prescribed dose is 1 puff twice a day (which is different from QVar...not sure if that's standard or not). Per her sick plan we've been doing 2 puffs twice a day, along with the albuterol. It just doesn't seem to be helping much. I can't hear a wheeze, but then again I never can. She seems to get inflamed very deep in her lungs and it is only heard with a stethoscope. She's coughing a very tight sounding cough several times per minute, particularly with exercise. No coughing fits and her cough is non-productive.
1 puff x2 day is extremely low dose -is it 44 mcg or 110 mcg
When Ds was 2 they put him on 2 puffs of Flovent 2xday at 44 mcg
Later moved to 110 mcg 2 puffs twice a day
Then back down to 44 mcg x2 day
Flovent takes 4-6 weeks to be effective
During a flare DH tajes 4 puffs 220 mcg x2 day for 5 days same as pred
But again he is an adult
My kiddos asthma is stable now
Is she pre treating with albutetol 15 minutes prior to exercise ?
Have they added Singulair with the Flovent ? That is what Ds steped down to from advair .
Exercise induced asthma can come along with regular asthma .
Ds has both
Even research docs have emergency appts
Somethimes a Ped can get you in faster if they call
When Ds was 2 they put him on 2 puffs of Flovent 2xday at 44 mcg
Later moved to 110 mcg 2 puffs twice a day
Then back down to 44 mcg x2 day
Flovent takes 4-6 weeks to be effective
During a flare DH tajes 4 puffs 220 mcg x2 day for 5 days same as pred
But again he is an adult
My kiddos asthma is stable now
Is she pre treating with albutetol 15 minutes prior to exercise ?
Have they added Singulair with the Flovent ? That is what Ds steped down to from advair .
Exercise induced asthma can come along with regular asthma .
Ds has both
Even research docs have emergency appts
Somethimes a Ped can get you in faster if they call
She has 110mcg. The suggested starting dose is 88mcg twice daily. So at 110mcg twice daily (when well) and 220mcg twice daily (when sick) she's well over that. Maybe she does just need more time though. We discontinued Singulair a long time ago because it seemed to cause stomach upset. She sees the Pulmo in 2 weeks and I was unable to have her seen sooner. Perhaps they fit it patients they're more familiar with, I'm not sure. We haven't had to deal with asthma issues in several months and it's easy to think she may have outgrown it. Ugh.
Just wanted to report that A is doing a little better. She started coughing up bits of mucus, first green/pink and then clear (sorry that's gross....I know....but we all talk poo so....lol). Now that she seems to be a little less congested she is doing a little better getting through dance and her chest is hurting less. I know the doctors thought her chest sounded clear, but these gasping spells have come directly after or just prior to an asthma flare. Hopefully the new Pulmo will be able to explain it for me.
Jan was rough here as well both kiddos got crud like virus at least twice
I think it was just a bad month this year
I think it was just a bad month this year
crohnsinct
Well-known member
I hope it is also!
Just clarifying in case anyone reads and doesn't know her story...her GI has approved NSAID's right? Because she hasn't received an IBD diagnosis yet, right?
Just clarifying in case anyone reads and doesn't know her story...her GI has approved NSAID's right? Because she hasn't received an IBD diagnosis yet, right?
No, she doesn't have an IBD diagnosis. We use Tylenol as a pre-med for infusions, but Ibuprofen seems to work better when she already has a fever. I don't give more than 3 doses because she is prone to GI bleeding.
Hope she feels better quick!
Ph probe was normal...49 reflux events I believe. GI diagnosed "functional heartburn" which is frustrating because she doesn't have heartburn. She has a tight chest, shortness of breath, and is able to detect some of the reflux episodes. I think the asthma may play a part in the chest tightness and sob and she sees her new Pulmo Monday.
I know it's the time of year for sickness, but A usually doesn't catch much since she started IVIG. And she never refuses food so that has me a tad worried. She just started drinking water so we'll see.
I know it's the time of year for sickness, but A usually doesn't catch much since she started IVIG. And she never refuses food so that has me a tad worried. She just started drinking water so we'll see.
Dancemom,
I just saw my own pulmo doctor who told me the asthma symptoms I am experiencing are from reflux and not asthma since all my asthma tests were normal. He put me on nexium which helped the reflux. Did they put her on something for reflux?
I just saw my own pulmo doctor who told me the asthma symptoms I am experiencing are from reflux and not asthma since all my asthma tests were normal. He put me on nexium which helped the reflux. Did they put her on something for reflux?
Since the ph probe was normal we stopped the Omeprazole. She doesn't take anything for reflux now. Her asthma seems to be mostly under control for the moment. Hopefully he'll do PFTs to be sure though.
Having a hard time getting her fever to break today. She's eating better though so that's good.
Having a hard time getting her fever to break today. She's eating better though so that's good.
A saw the Pulmo today. PFTs were pretty good, but based on her symptoms and exam he felt her asthma wasn't quite under control. The plan is to give the Flovent another 2 weeks to get in her system and then possibly increase the dose. Also going to use Albuterol before exercising. I have to come to terms with the fact that she does have asthma. I don't know why I keep thinking she's just going to outgrow it. Fortunately it is fairly mild with few complications.
We also learned that the gasping she's doing is called "sigh dyspnea". It is harmless and common, particularly in kids with asthma. Basically her asthma flares cause her to be hyper aware of her breathing and her brain is signaling that she needs a larger, cleansing breath (even though she doesn't). She isn't anxious or worried about it so no treatment is necessary. When her asthma is better controlled it should stop. Good to know!
Infusion tomorrow!
We also learned that the gasping she's doing is called "sigh dyspnea". It is harmless and common, particularly in kids with asthma. Basically her asthma flares cause her to be hyper aware of her breathing and her brain is signaling that she needs a larger, cleansing breath (even though she doesn't). She isn't anxious or worried about it so no treatment is necessary. When her asthma is better controlled it should stop. Good to know!
Infusion tomorrow!
My younger son had something similar just prior to being dx'd with asthma. He wasn't gasping like A, but constantly clearing his throat. They told us the same thing your dr did. His asthma is exercise induced so we didn't put the throat clearing and asthma together right away. He's on Singulair now and only has issues when he has a combo of a cold/virus and adds excessive exercise on top of it (i.e. basketball, running in football).
Hope she feels better soon...
Hope she feels better soon...