This symptom is a mystery. Please help!

[anonymous]

Hello everyone,

I am trying to help my son through what is becoming a very big problem for him. For the past year my 8 year old son has begun having epidisodes..maybe 3 to 5 minutes in duration, where he clutches his chest and says he can't breathe. He sounds like he is in abdominal pain when he does it. I tend to think the pain is coming from somewhere lower in his chest, although he cannot verbalize this. This pain starts and stops very quickly and then he goes on with his day. He has had abdominal pain before and his disease has, so far, been more digestive than respiratory, but these short little epidsodes are freaking us both out. At first I thought it was his heart, but I do think that is digestion related. However, why the short episodes? I have found no pattern...after meals, before bowel movement, after activity,,,,nothing. They come and go at all different times of day. Now they are getting so intense that they are making him cry and his school is having me pick him up to come home. His clinic has suggested giving him prevacid earlier in the afternoon to make sure it is on an empty stomach, but that has not helped. Andrew is in the 10th percentile for weight,,.has been since birth, and his tummy has always seemed a bit distended to me. Any suggestions? Has anyone else gone through these short "bursts" of pain? Thanks in advance for your stories. Tonya

 

[anonymous]

Hey,

I have had similar pains. Are you sure though, that it is his stomach/Gi tract? Could it be his lungs?
I have had sharp stabbing pains come, when they happen, I can't breathe, or even move. They stay from 15 seconds to 1 minute. Then they go. They also have no specific time of day, they just happen.
I was told that it is probably carbon dioxide trapping in my lungs. The lugs are far down in the torso, further than we realize. And the intestines get all smushed up against the lungs, making me feel sometimes that I'm having Gi pain when it's actually lung pain.
I hope you find an answer!

Christian

 

[JazzysMom]

I have had terrible "attacks" of pain in the past. Because it never happened when I needed proof we never figured out what it was. It could be constipation (even if he is having bowel movements) which is pushing on something (I was having SEVERE lower back pain due to this), gall bladder, need enzyme adjustment/change or change in how he eats! U need to keep a log (I know another thing to do) of what he eats/when, how is stools are in that time period & when the pain begins. See if you can connect the dots. Have tests of any sort been done? How are is lungs in general? O2 sat, pfts etc. One definite thing I have found out this last year is that symptoms of pain dont necessarily have to do with a problem in the area that the pain is located. Our body reacts in so many ways that its hard to say at times.

 

[debs2girls]

My little girl has also had this type pain...we cant tell if it is her heart, lung, stomach or what...she is currently wearing a heart monitor so we can see what is going on there when she is having this pain...but since she is only five, I dont think she is doing this thing correctly, so we may be wasting 30 days of wearing this...we will find out on March 1st what is going on.
Hope you find out soon too.
Debbie

 

[anonymous]

Thank you all for your thoughts. It is good to know others experience this same sort of pain and question if it digestive, heart, etc. I now have a couple more questions I can ask our doctor when we go back on Feb. 15th. We have played with enzymes and I have kept a journal of these experiences, but find no pattern. Andrew's lungs are in good shape, but his pfts have shown what our doctor calls "air trapping", so the comment about carbon dioxide trapping was very interesting. Thank you. This has been my first post to this board and I plan to visit often! It is so nice to share experiences with others who know what you are talking about!
Tonya

 

[EmilysMom]

This happened to Emily when she was little but it scared the hell out of me. She came to me and said "it hurts here (pointing to her mid to lower chest) like little pins sticking me. She was probably about 3 maybe at the time. I told her to lay down and let me know if it got worse. I called my mom and asked her to come and look at Emily. She had 6 children so I figured she would know what was happening. She only lived about 3 miles away. By the time she pulled into the driveway, I had called 911 because Emily had come back to me with huge tears and "giant scissors sticking in her". The medic, police and ambulance all arrived and her blood pressure and heart rate were very high. Her skin was mottled which was really weird. They couldn't seem to find any reason for what was happening so they decided to transport her to the hospital. They called to request morphine for her to cut the pain which by now was incredibly intense and to try to calm her (and mom) down a bit. By the time we got to the hospital, everything had returned to normal. They did some tests and sent us home. They never found out what it was and luckily it never happened again.
I know my story wasn't much help, but it just goes to show you that CF does alot of weird stuff without explanations!

 

[thelizardqueen]

Every once and awhile, I get severe stomach attacks as well. The docs have told me that its usually severe gas and bloating that cause the pain to travel from my abdomin to my chest area, or sometimes constipation.

 

[anonymous]

My son who is 20 had pains like these when he was younger and was finally determined to be reflux disease. He was on med for it when he was an infant and then got better but when he was about 10 or so he was put back on med and has done well since. Currently he is on 20mg nexium which he says is a miracle medicine. Susan

 

[anonymous]

I, too occasionally have these sharp, needle stick type pains up around my heart. When they are happening I feel paralyzed and can't move until they subside. I also notice that sometimes when I have sat for a long time & go to stand up that I sometimes get these pains and I have to wait for them to go away before I can stand up-right. I think in my case it is gas because after these pains, I feel like I have to burp or the other<img src="i/expressions/gas.gif" border="0"> and that makes me feel a whole lot better.
Hope

 

[anonymous]

If the PFT's are showing "air trapping" then there is lung involvement - there is something going on in the lungs to cause the air to get trapped - so the lungs are not normal.

 

[debs2girls]

I have a stupid ?.....how do they test for pft's? they have never done that for/to Cheyenne. How can they tell if you have "air trapping"?
Do you think we are wasting our time with the heart monitor?
Thank you,
Debbie

 

[EmilysMom]

They don't test for pfts. PFTs are a test. It stands for Pulmonary Function Testing. They have the kids blow into tubes to determine a whole bunch of factors to see how well the lungs are working (or not working) up to par. That'a s very brief (rather stupid, non-technical) explanation

 

[JazzysMom]

With a 5 year old the chances of it being heart related is unlikely, but as with anything else not impossible. The PFT's would help a lot. How the lungs respond to different breathing patterns done during the test (panting, quick & hard blow out, slow & long blow out etc) is how they determine if small airways are restricted, if there is air being trapped etc etc. I know that each doctor begins pfts at different ages, but if your daughter is a good listener & can follow instructions then she should be able to do a pft. It can be physically draining as U will find out when she does do it. But not invasive....

 

[debs2girls]

Melissa, we know that she does have a murmur. She had a hole in her heart when she was born, but thank the Lord, it closed up and she didnt have to have surgery on it.

 

[anonymous]

My daughter with CF has had "mystery pain" in the past. On one occasion it turned out that she had a partial intestinal blockage called intussusception. It is where the blockage is pulled into the adjacent intestinal section. When the intestines touch together there is excrutiating pain. When they come apart the pain stops. The blockage did show up on an x-ray. Just a thought. She has also had pain in the chest area that turned out to be pneumonia.

 

[TonyaH]

Thanks to all who have responded to my message. I am enjoying this board very much and just registered to join. I have been asking our doctor for a year about Andrew's chest pain and I have had more response here than I have anywhere else for the past 12 months. I don't think I have been as vocal about this to the doctor as I should have been. I am going to share all of this with her in detail when we see her next and after hearing from all of you, I think she will be able to figure out what is really going on and find something that can help him. Thanks again!

 

[anonymous]

I know that I have "attacks" & sometimes they are 30 seconds & sometimes 5 minutes. At first everyone was saying anxiety attacks but I told the Dr. that I get them when I'm sleeping or watching t.v. I won't even be thinking about anything stressful & BAM! I can't move literally, or even breathe. It hurts to breath & it hurts not to. We have heart problems in my family, but my EKG looked good. Then he mentioned this thing called "disoltonomia" ( I think I spelled it wrong). It is where the body doesn't know the difference between calm & excitement. You know when you get scared or mad your BP increases, your heart races, you get dizzy...& of course when you're calm it doesn't. Anyway, He said my body was having attacks for no reason & said something about beta blockers. I still get them frequently, but with everything that has been going on with me I haven't gone back. I was pregnant at the time & I'm not big on meds while I'm pregnant. But I hope this helps. I probably didn't spell it right though.
-Paige, Madelyn's mom

 

[anonymous]

Paige,

Thank you so much for posting - what you experienced sounds exactly like a problem that I have had off and on now for 2 years. I have been to every specialist under the sun (heart is fine, pancreas, gallbladder,lungs, etc.). My pain also hits when I am lying down and many times it hits at 2 a.m. when I am sound asleep. When it wakes me up my heart is racing and the pain feels like a charley horse in my chest - I literally cannot move and like you said it hurts whether you breathe or not. I have had short episodes and one that lasted for 30 minutes where I was literally lying in a fetal position in the bed until the pain went away. The first time it happened I thought I was having a heart attack and my husband called 911 - by the time they got there I was fine and my EKG was normal. I will definitely look into the "disoltonomia" and mention something to my doctor (who is also bewildered - along with 3 specialists).

I swear they thought (and I thought at times) that I was going crazy - but, this pain is real.