Posted By Posting
Nov 09, 2004
Anonymous
barely a whisper
My daughter, 14, has had a decrease in her already breathy voice over the past year. Attributed to prematurity/prior surgeries, and left paralyzed vc, allergies, asthma...we are beginning to wonder if it is due to acid reflux.. She was on Pepcid for several years, but has been off for two years. Within the past few weeks she has been in pain off and on from stomach up into her throat. (Right about the time she made the h.s. gymnastics team). Because we live in a rural area, I need ideas which physicians to see when we travel - ENT that did her surgeries, or gastro? ANy suggestions would be helpful
Nov 09, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
physicians to see
I think an ENT would be helpful in dealing with the consequences of her reflux (assuming that is what it is), but that a GI would definitely need to be seen for the treatment of the reflux itself. It sounds like LPR, or laryngo pharangeal reflux--It is basically the same as GER, except that the LPR label indicates that the acid goes up to her throat before going back down. Not everyone with GER has this problem. Acid is much more damaging to the body when it travels that high up. Both my daughter and I have it. My daughter's ENT has been instrumental in helping us deal with the devestating consequences that her reflux has had on her nose and throat. I would say that seeing both is worth the trip. Good Luck! Carla
Nov 10, 2004
Julie in SD
don't want to go back
Carla - thanks for your reply. Making the 7 hour trip to Denver isn't nearly as painful as going back to areas I'd hoped we'd left behind...the medical community. It was our life for years; getting Jenn to the place she is today. But I know I need to suck it up and get her some help - fast, it seems to be encroaching quickly and I will not allow fear to run my life (or our family's). She has actually been asking to go. The last specialist we saw was five years ago at Boston Children's, and she's been relatively ok, aside from severe allergies, low thyroid, swelling airway....you'd never know it to look at her, she's beautiful and a real tough cookie. When she complains I know I need to pay attention, as with other medically challenged kids, tolerance to pain can be concerning. The catharsis of writing this and reading everyone's stories has given me the courage to plunge in and find Jenn the best help possible. Having found this site yesterday, I am grateful, as will be my husband, Jenn, and her sister. Does LPR make your throat feel like it is on fire? She wakes up with it that way and last night was wondering if she has strep throat (But no tonsils or adenoids) plus the fact that stridor is there, we know it isn't strep. Her allergist is backing off the shot dosage, but this all seemed to become worse when she started the shots in July...any correlation between allergy shots and reemerging reflux? Thanks again. Julie
Nov 10, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Julie
I feel your pain, my daughter has been through a lot too in her short 31 month long life! Every time we finish one procedure, I say "okay, now we are done!" just to feel the overwhelming dissapointment when I realize there seems to be no end in sight. We just take one day at a time. When people ask how we are, I may say "today things are good" or "today things are bad"...who knows what tomorrow brings.....one day at a time! It does make you feel like your throat is on fire. It sometimes makes our eyes water and gives us a very hoarse voice and a very sore throat. Also, after a particularly painful episode, my glands hurt, my nose gets stuffy, I get a headache, and my throat has that constant feeling of any day now I am going to get sick.....but it never changes from that initial feeling. I am pregnant right now, so I can't take the regular PPI. It makes a big difference in me. Chelsea's biggest problem with the reflux was her throat and upper airway. I feel like I can relate to what you are talking about. She has subglottic stenosis from scarring from the reflux (a narrowing between her vocal cords and scarring on her vocal cords and voice box) and as a result, chronic stridor. She also has a reactive upper airway-her trachea, voice box, and vocal cords swell easily at the slightest trigger making it almost impossible to breathe. Before she was diagnosed, the symptom that triggered the diagnosis was croup that didn't go away for really over a year before we got her reflux under control and got her on Pulmicort (she is also on up to 6 other meds depending on the day!). She has had 2 fundos though in the last 9 months and has been to the hospital 12 times just this year. The 13th time is on Monday for a sedated CT scan of her sinuses because we suspect that chronic inflammation there has casued blockages- more damage! We, however, live 15 minutes from the hospital! I really feel for you, that must be really hard to have to make such a long trek for treatment. I don't know much about allergy shots because my daughter doesn't have allergies. She takes an oral antihistamine to help with mucus secretions related to her drainage problems. I do know from our own experience that you should take her in, especially if she is asking to go. My daughter at just 2 and a half as an extreme high tolerance for pain. We know that when she complains, we are in trouble!!! Hopefully, with the right med, she can get some relief. It isn't always as bad as it was for my daughter!!!! Mine is pretty easy to control, (except for right now that I am not on meds) but it is still a pain in the butt!!!!!! Good Luck and let me know how it goes.....I hope she gets better! Carla
Nov 11, 2004
jenny
help
Hi I was wondering if you could give me more info on Chelsea. My son Patrick is 28 months old and about to have his second fundo. He also has subglottic stenosis in which he has had three dilations done so far. His first fundo failed before he was one (done at 51/2 weeks). I am so worried that doing a second fundo will be unsuccessful and not help his respiratory problems. With every cold he gets he gets croup and the last episode he has on September 1st was probably the scariest. His airway was so minimal at the time they said they probably would not be able to intibate him (luckily it didnt come to that). After the doctors talked alot of tracheostomies. My dilemna is that no one can say for sure if the fundo will help him respiratory wise. He eats and he is thriving and he is happy. He is on a lot of medicine though. I would really like to know your story with the stenosis and fundos. Thanks for your support and advice rlewissd@yahoo.com
Nov 11, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Jenny
Hi Jenny, Chelsea's subglottic stenosis is not severe; it hasn't required dilations. We did both fundos for many reasons; the stenosis was just one of them. It has not helped the stenosis, and we knew it wouldn't- stenosis is a separate problem. However, hers was caused by scarring from severe reflux; so attempting to stop or at least minimize her reflux prevents more scarring from happening. This was one of our main goals. More reflux would make her scarring worse. Was your son born with the stenosis? Because she has floppy vocal cords, a floppy diaphragm, a reactive upper airway (trachea, larnyx, and vocal cords) and also has chronic sinus problems in addition to the subglottic stenosis, (she also had apnea that DID go away with the end of the reflux), they all worked together with the reflux to put her in a bad place. The reflux was the original trigger, but then these problems became their own separate entity over time. It wasn't just one thing that made her bad off, so it wasn't just one thing we had to try to fix. Thinking of the fundo in that way may help. We had to try to stop the trigger. We did not do so thinking that all the other problems would go away. In fact, the other things haven't changed at all because they had already become their own separate problem. However, now that the reflux is under control (today at least- we take it one day at a time!), we can focus solely on the other issues. They respond better to medication because the reflux isn't there to aggrevate it. We can know they won't get worse, because again, the reflux isn't there to aggrevate it. In addition to all the above things, Cheslea didn't sleep well with the reflux, had the apnea spells, would have screaming fits, and did not eat well. She was sick all the time even with all the meds, even at 2 and a half. Her speech is delayed and it is suspected that it is related. We did the fundo for all these reasons. However, Chelsea handles the fundos REALLY well. Based on how she handles it, we would do it again if needed. Not to say we want to though!!! We are hoping we get some longevity out of this one. Her 1st one lasted 3-4 months. 8 months later, she had her 2nd one. The surgeon put in limiting stitches this time- 7 of them, attaching her stomach to her diaphragm and attaching her esophagus to her diaphragm. He said with children that are at risk for chronic herniations (like Chelsea) they have found that so far, these limiting stiches have prevented it. It made the eating part of the recovery take longer, but we were okay with that, as was she. Now she is doing well. She still takes Prevacid daily. She takes Pulmicort everyday in a nebulizer to prevent extra swelling in the subglottic area. She takes Atrovent in a nebulizer to decrease mucus secretions. We add Broncho Saline to that when needed. We also have Xoponex when needed. She takes Nasonex nasal spray everyday to prevent mucus secretions. When she is sick, she also takes Afrin nasal spray for 3 days per illness. She takes Orapred when needed, and Atarax-a prescription antihistamine when needed. Whenever she gets a runny nose, she needs all of it- including the nebulizer every 4 hours. One of her huge problems is that the constant mucus secretions cause a bad cough. The cough herniated her 1st fundo. We now work hard at preventing that from happening again. So as you can see, her problems are multi-faceted- we finally found a combination of meds, combined with the fundo, to keep it all under control....but it is ALOT of meds!!!!! For this reason, she is having a sedated CT scan of her sinuses on Monday to see if she has any blockages. She has frequent colds that need all those meds to keep it from being anything else but a normal cold. Her sinuses clearly are not draining properly. Now that the reflux is under control, her stenosis and reactice airway are under control with the meds, we are now focusing on getting her sinuses under control- hoping we can get it all working well at the same time and hoping that with each thing we improve, she will experience a little more comfort and relief. Write back with more questions you have- I don't know if I answered them all. It's hard because there is so much info!!!! Tell me more about Patrick too if you want. My email is tccgorecki@cox.net Carla
Nov 17, 2004
Julie
CARLA
Carla - Thanks for your input, Chelsea sounds a lot like Jenn. Jenn also had subglotic stenosis ( I am happy to say I've forgotten how to spell it!) but she had a trach for four months after numerous procedures including both the cricoid split and cricoid stretch. This was fourteen years ago and there have been many medical advancements, thankfully. At eight months old they did a laryngotracheaplasty - reconstruction on her airway using cartilage from her ribcage. That definitely saved her life and she has been trach free since then. That is why the current situation is worrisome, aside from the severely sore throat, actually from her stomach up to her voice box, her airway is itchy, swollen and as you described, triggered at the slightest thing. That 'can't get your breath' feeling sends her into panic. Unfortunately, nebulizer treatments don't help one bit. She thinks it makes it worse? We have an appointment on Tue. Nov. 23 her at our local ENT, out of desperation, and will go from there. We don't have any pediatric specialists here, although, now that she is 14, it may not be necessary, so hard to know. It's not easy to drop everything and run down to Denver, although we will if necessary. Although we are long past the days of vomiting at the drop of a hat, the feeling has come back for her. As you may see in your daughter, the tenacity and perseverance in Jenn is an amazing thing. She is getting all A's in school and is determined to stay on the gymnastics team. Her teachers have moved her to the front of the room so they can hear her better - I sent them e-mails at the beginning of the school year to let them know what is going on with her, and they have been most helpful. Right now I am going to be thankful if she makes it to school tomorrow......
Nov 17, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Julie
Hi Julie, Chelsea almost had the laryngotracheaplasty-but fortunately her airway missed the measurement that they use as a standard to perform the surgery. In other words, it isn't a normal size, but it is not small enough to perform such a major surgery on it. One thing I kept thinking of when I read your post is what you said about her panicking. Anxiety over reflux (or anything for that matter) could be triggering her to have that feeling that she can't catch her breath- a very typical panic attack symptom. I used to have panic attacks frequently and I would get this burning and itching sensation all over my body, and my heart would hurt and I felt like I was suffocating. Then I would panic that I was panicking-if you know what I mean, and it would all get worse. She may be refluxing, and she may equate that with how things used to be for her--she was always sick, always in pain, had trouble breathing, etc.---and then panic over it. The panicking makes the symptoms worse and it goes round and round in a vicious spiral. Because she is a straight A student, very motivated, and determined to not miss school or gymnastics, feeling sick could make her panic. Not only does she already feel sick from reflux (I assume!) but then panicking about having to feel that again, and about missing school and gymnastics cause the panic symptoms and make it all worse. What sends a red light to me about it is that she doesn't feel the nebulizer treatments help---a sign that something else is triggering her "can't catch her breath" feeling. I hope this makes sense. I could be way off....I just had a major anxiety disorder, that I now don't struggle with after long years of treatment. I can relate to that imprisoning feeling of something "attacking" your body and you panicking because you know you have no control over it. If this is the case- using a combination of relaxation methods and reflux meds can really help. Anxiety can make reflux worse, and reflux can make the anxiety worse, so if this is the case, you would need to treat both to help her to feel a lot better. I hope your appointment with the ENT goes well. Hopefully you can get to the bottom of what is going on-whatever it may be. Please let me know! You can email me if you want: tccgorecki@cox.net Good luck, Carla
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