Burning sensation question

[gijanet]

As usual with Katie, I don't know where to put this, but need to ask the experts who have had OHS for some input...........

For the second time in a month, Katie has complained of chest pain in the vacinity of her ribs and a burning sensation in her lungs(she says her lungs, but I'm not positively sure that she really knows what lungs are )

The first time was about three weeks ago and just slowed her down for a little while. The second time was today, and it hurt so bad she started crying. This kid has a high tolerance for pain (doesn't even cry at lab arm draws or finger pokes anymore), so I know it hurt. After it quit I grilled her a bit. She had been sitting at the computer playing when she knocked her stuffed frog (her gaming partner ) off the desk. She twisted and bent down to pick it up when her ribs started hurting, and then she said her lungs were on fire. Again, I don't know if she really knows if it was her lungs that were hurting or if the pain was just in that general vacinity. It subsided fairly soon after. I also asked her if it hurt to breathe or was hard to breathe, and she said no, but I don't know again if that would really compute to a six year old, especially after the fact. Since this was the second time, I'm concerned and need some input.

What do ya think? With Katie's surgical history and unique wiring, anything is possible. Blood is not pumped to her lungs; it sort of drains to her lungs after circulating throughout the rest of the body, but I don't see how that would have been impaired from just twisting and turning...........dunno! Guess it's possible. I am really hoping maybe this just might be a scar tissue issue. Maybe the twisting and bending caused a pulling on the scar tissue of her chest wall ? Has anyone felt anything similar to what Katie was describing??? Could stretching scar tissue adhered to the chest wall feel like burning...........or does this sound more like a lung issue, as in blood flow to the lung-type issue...................

Thanks for any insight you might have. I am going to try and get hold of Katie's PC tomorrow, but tomorrow is not one of her clinic days, so may take a day or two to track her down. Hugs. J.

 

[Ross]

Sounds to me like a good case of heartburn. Did she eat anything spicy? I know sometimes I used to get it for no reason at all. The only other thing would pleural effusion, but she said she can breath alright. I think I might listen to her lungs and see if you can hear any water sloshing.

 

[geebee]

I don't know, Janet, but I have had some pretty painful "twinges" from twisting and/or bending. Some have lasted a few seconds and some a few minutes and then slowly subside. My cardio says scar tissue pulling or tearing. I had a bad spell earlier this year that lasted for a few weeks. The pain is not unlike "burning".

I think touching base with the doctor is in order but, since it subsided, I would think scar tissue or a pinched nerve from Katie's actions.

 

[Phyllis]

Hope you touched based with the pcp by the time you read this Janet and it is simply a case of scar tissue or a pinched nerve- hugs coming your way.

 

[Lynlw]

Boy My answer will really help you...not ,BUt my thoughts were the same as Both Ross and Gee. I get heart burnand sometime when i bend it gets bad.And Justin has complained of what Geebee described over the years.
helpful aren't I? lol Lyn

 

[Trinityheart8891]

Janet,
that sounds to me like a scar tissue problem! I have them alot, it could also be heart burn, but I think if its her ribs its probably more likely a scar tissue thing. twisting, starting a lawn mower, weed whacking any of that kind of thing gets me bad.....

but, that said, I'd get ahold of her cardio first thing, just to make sure.....

Morgan, 20

 

[twinmaker]

My first thought was also GERD. Sometimes, when you bend over, the acid can really jump up into the esophagus. It feels like your lungs or chest is on fire. Am anxious to hear what the doc has to say. My grandson had GERD from birth to almost a year, and I have it. It can really be painful. LINDA

 

[Guest]

Janet,

I agree with others ... sounds either like scar tissue issues or GERD, etc.

Either way ... hope you are able to talk to the doctor and go from there.

Thoughts/prayers coming Katie's way....and for you, too, of course .



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
WRMNshowcase.lego.HO.model.MCs.RT.CHD = http://www.chevyasylum.com/cort
"Wouldn't you like to get away?" ... Gary Portnoy ... 'Where Everybody Knows Your Name'

 

[ALCapshaw2]

Janet,

Have you tried antacids, either solid or liquid? If it's GERD, that can help to releive symptoms AND diagnose the problem.

If it's GERD, hold Acids (Juice, Sodas, Caffeine (including CHOCOLATE, my downfall), Peppermint, tight clothing, and tell her NOT to bend over.

Whatever it is, get it Checked Out with her PCP or ???

Hope you are able to find a reasonable explanation!

'AL Capshaw'

 

[gijanet]

Thank you guys so much...............

Thank you guys so much...............

my famous battle cry..........I knew I could count on y'all for some ideas. I had a chance to sneak in here this morning and read some responses. Before Katie claimed the computer, I shot off an e-mail to her Ped Card. I figured that was easier than trying to relay all this by phone to her nurse and then have Mary Beth relay that to her PC and then reverse it. Haven't gotten a response yet, but am not surprised as I think she checks her e-mail first thing in the AM. If I don't hear anything by tomorrow, I will try the phone route. I am so grateful for your input as I was able to voice my concerns a bit more coherently and did add that I checked her heart and it was only slightly elevated and was clicking away quite rhythmically and slowed down once Katie settled down.

Ya know, GERD never entered my mind. Surprising, since Katie does have the malrotation (her stomach is on the right side)and had necrotizing enterocolitis within 48 hours after birth; after that life-death battle which involved a potent IV triple antibiotic cocktail for ten days, she was on reglan and zantac the first two years of her life, along with a predigested formula. Ya think that might have crossed my mind, huh? Can we say, "brain damaged!"? or old-timers one! But question for you GERDers: would it go away that quickly? Her pain subsided within ten/fifteen minutes, and then she went right back to torturing her guinea pig with "love." And she doesn't eat spicy foods, not a whole lot of anything at one sitting, but does drink lots of juice. Hey, with all those capped teeth, it can't hurt the enamel any. And she has been on aspirin since birth........dunno what toll that takes on her stomach lining long term..............sigh! This is one of those quandaries with our heart kids - is this a common ailment in a not so common kid or is it something to be alarmed about? I'm still leaning toward the scar tissue thing..............hoping it is something that simple anyway and sounds like (from y'all's responses) that this could be a real possibility.

Thanks again so much. I really value your support and input. Will let you know what I find out. Hugs. J. P.s. Haha! Al, yeah, right! Tell Katie not to bend over - that's like telling a bird not to fly. Tonight she was a live arcade. She had all of her carebears lined up on top of the couch against the wall. She would throw a ball knocking them down off the couch. THe next thing I knew, Katie was perched right up there amongst them. She then would throw the ball at herself, "knocking" her off the top of the couch, onto the couch, and then onto the floor...................sigh! See why I have aged twenty years in the last six................much love. J.

 

[Trinityheart8891]

Janet,
yes heartburn could/does come and go (I had GERD to the point where I was puking almost every day, and subsequently had a laparoscopic nissen fundoplication to "fix" it (they put 3 sutures in my diaphragm, and wrapped the top part of my stomach around the bottom of my esophagus to tighten the little "valve" in there (its really just a sphincter which is just muscle that tightens to close an opening kinda like a drawstring garbage bag)) I would think she would say something about "puking in her mouth" if it were GERD and it was happening while she was bending over.....

if its scar tissue advil and heat really really help the idea is to get rid of the inflammation and use heat to help it stay loose, and heal faster

hope this helps

 

[ALCapshaw2]

AH, the Joys of parenthood!

"Aspirin since Birth"... hmmm, THAT could be a factor.
I *assume* you are giving her the 81mg child's portion.
Do you use enteric (coated) aspirin? That doesn't dissolve until in enters the colon, thus (hopefully) sparing the stomach and not aggrivating GERD.

15 minutes does seem a bit Fast for GERD to clear up, especially 'on it's own'. It will be interesting to hear what her Docs have to say.

Janet, have you thought about going into medicine (in your next life) ? ;-)

'AL Capshaw'

 

[geebee]

Janet, have you thought about going into medicine (in your next life) ? ;-)

Heck, Al, Janet is in medicine in this life - she just isn't getting paid for it. In fact, she actually has to pay for it.

 

[gijanet]

Oh, you two are a hoot!

Oh, you two are a hoot!

Although I sometimes do feel like I should be getting a small kickback from someone...........instead of a small kick in the backside from someone! I do so wish I had gone back to school to become an RN..........sure would have come in handy............oh, well, next life...............maybe I'll get around to that book then, too............sigh!

WEll, as luck would have it, Katie's card is out of town. Waco, at one of the outreach clinics...............so, we did talk to Mary Beth, her nurse, and relayed all the symptoms, etc. Not sure how much registered, although I did inform her that I had e-mailed her PC with all of that info. She said that her PC rarely checked e-mail when "on the road," so I don't expect we will learn much until next week. We have a lab draw next week ( her PC still insists on one every two months, despite our home testing), so we should find something out by then, if not sooner. She did say that if we were really concerned to take her to her PCP, but I don't think we are in any type of crisis mode...........just a cautiously concerned mode, so we will probably wait

Oh, and Al, we are still doing the baby aspirin. Katie cannot swallow pills yet, although we give it a shot about every two months. Her gag reflex is really sensitive......I guess from being vented so many times. I will definitely be grateful when she can, though, as I would like to switch her to the coated aspirin and it would be nice not to have to crush up her coumadin and mix it with water in a syringe. Hey, and we wouldn't have to pay major bucks to have her captopril compounded..............but that will all happen someday.............about the time I get my first retirement check...........heehee! if I live that long!

Many hugs and will let you know what I find out..............WHEN I find it out. THanks for the feedback as always. Much love. J.

 

[gijanet]

Trinity.........

Trinity.........

"puking in her mouth" if it were GERD and it was happening while she was bending over.....hope this helps

I just saw this. Katie has mentioned " I threw up in my mouth" before and on several occasions, but not this time. It's interesting that you explained your fundo. I was curious when I read that in your sig line as we were "threatened" with a fundo or a mickey button or both when Katie was about six weeks old. (On the light side, I never could remember the word fundo for some reason. I kept telling people the docs wanted to "fondue my kid." heehee!) Anyway, we could not get that kid to hold down much of anything. WE had the bout of nec, then her first surgery, the BT shunt, and then another less severe bout of nec. Then we just could not get her to retain much of anything. WE would feed her 30-40 ccs; think we were doing good and would try and bump it to 60 ccs, and up it would all come. ANd since she had been NPOed so much of the time, she had developed an oral aversion and could care less about eating. We kept a log in the hospital and were having to weigh her diapers, guess how much she had consumed and how much she had regurgitated.........oh, yeah, try that one for fun.......oh, let's see - a two inch wide circle of vomit times two is about an ounce...............sigh! She was on reglan and zantac and Pregestimil ( a predigested formula). She was a failure to thrive case and that kept us in the hospital longer than her actual heart issues at that point. They kept threatening us with the fundo or mickey, but we fought it. Not that it is the end of the world - duh! obviously (it has benefitted you and many others), but for us, at the time, it was just one more thing............just one more thing we were going to have to subject our child to.......shoot! We were still trying to come to grips with all of the heart and heterotaxy issues..............so we fought it. When we left the hospital, we were actually feeding her every hour on the hour around the clock, 30-45 ccs or whatever we could get down her without pushing it and it coming back up. Looking back, it damn near killed us and maybe we should have rethought that. But, we did go home after eight weeks - on probation, Katie weighing just about the same as when she was born, with the understanding that if she didn't gain weight, we would have to come back for either the fundo or mickey button. God decided to give us a break and once we got home, she eventually started taking more in and spitting up less. She never would take more than four or five ounces at a time, but that was pure Heaven after an ounce an hour every hour............

Anyway, you would think with all that behind us that GERD would have entered my mind, huh? I do appreciate your input (and all the others)and yes, it helps a lot, as I really think that we are dealing with either GERD or scar tissue and not something more serious. I think that I am just going to have to keep a little diary of these events so we can pinpoint the problem. Until y'all mentioned it, GERD didn't occur to me, so I really didn't bother to make note of what she ate that morning, and, of course, now no one remembers.

Thanks so much for your input. Hugs. J. P.S. Below is my little blue Katie about five weeks old, Christmas 2000, sporting the latest cranial IV and her lovely NICU haircut. We got to go home January 12th, 2001, thank God for that one! I had my breakdown all scheduled for the 13th, so we were able to circumvent that for a while...........heehee!

 

[geebee]

Katie was as gorgeous as she is now and the imp was in her even then.

 

[Emma]

Sorry Janet, only just seen this one.
My thoughts are the same as some others.

Chloe's done this before - complained about 'a burning' and that her throat felt sick (not ness. at the same time!) and acid reflux is really common in heart children as far as I can tell. I took Clo to the doctors about it ages ago and he said there was nothing he could do other than prescribe Gaviscon if it worsened. He said it's to be expected in childen that have taken meds long term to have an acid build up in the stomach(??)

Clo seems to get it at any time or place - not after eating anything spicy, just sort of 'whenever', although normally more in the afternoon/evening. I've never worked out any common factor of food that's come before the 'burning' or sick feeling but it's happening less frequently now.

Hope Katie gets this sorted out and it turns out to be the same as Chloe.

Lots of love to you all
Emma
xxx

 

[Lynlw]

Janet I had to laugh (and shakemy head in a sad way)when I read this part

Although I sometimes do feel like I should be getting a small kickback from someone...........instead of a small kick in the backside from someone! I do so wish I had gone back to school to become an RN..........sure would have come in handy............oh, well, next life...............maybe I'll get around to that book then, too............sigh!

I think you probably know more now than you would of if you went to nursing school. When Justin was in after the surgery for his infection, andseveral services were trying to decide what thelumpis under his arm(which we still aren't sure, butit is still there so we'll have to discuss it next week)One of the fellows said,it doesn't feel like a lymphnode,and Justinsaid Iknow we were just talking about that,and thefellow asked with who and Justin said,"Just me and My Mom",you should of seen the look he got lol , anywayJustin said I used toget nervous the nurses mightnot begood,since you know more than them,but then decided you just know alot,BUT I makesme really nervous, since I try not to think about this stuff, when I feel like "I" know more than the doctors lol.
I have reflux and sometimes the burning is pretty quick and then done. I remeber still how tired those,feeding every2 hour 24/7can make you when you get home, Justin didn'need a findo,but had surgery for his pyloric stenosis when he was 17 days old,when he finally got off the vent post heart surgery and would projectile vomit feet away when they started feeding him.When he got we had thelittle bottles that looked like for a doll andhad to feed him every 2hours,it took about 1 hour to feed him and put him back to sleep (and Don had a broken leg and a cast from the hip down, soeven tho hewould give himevery other bottle,I still had to make the bottle, get Justin, put Justin back in his crib when Don "fed" him,which he had the nerve to say I don't know why you are so tired I feed everyother bottle, bitter?j ust because i can remeber ths clearly after 19 years?lol ))so we would just be done one feeding and 15 min later It was time to start all over again.
it really is amazing what you can survive and at the time,feels "normal" lol
I was sooo happy when they moved the feed furthur apart.
SO let us know when they figure out what is going on, Of course katie is in our prayers,Lyn

 

[Gnusgal]

I haven't been on VR in about 4 days because I had family in town. This is the first I'm seeing of this. So did you ever find out anything from Katie's PC? Hope it was a simple answer (HA!) and Katie's not having any more problems!