Abdominal pains

Dear friends,

My son has been complaining from minor abdominal pains since a long time ago, may be from the time he started expressing himself. I say minor because the pain is not too strong, he only stops what is he doing whether eating or playing and stay calm for a while. At the time of these pains he usually pulls his shorts or pants under the waist line, very low as he doesn't want to feel  any pressure in this area.

First I thought maybe the clothes were tight, but actually they were not. Then I investigated the colon but with clinical inspection the doctors said that it is not swollen or enlarged. Actually this subject was left for a while because every time I ask the doctor I had no answer.

One month and half month ago I decided that I have to know why this happenes because it is very often and could happen every single day.

So i started doing stool analysis and it came clear, then I did ultra sound and it was also normal. Though my
son has two small gravels in the gall bladder, their size is not the size that can cause symptoms or pains as the doctor said. I also checked for extra medullary hematopoesis and he had nothing too. I did a test too called heliocobactor (kind of bacteria that cause pain) and the test came negative

I also stopped dairy products and junk food for a while and nothing seemed to work.

 Then the pediatrician wanted me to test for familial mediteranian fever. I was so scared and depressed to hear this especially that I couldn't imagine facing another genetic disease, may be that is why I was not llogging in the site for the last month. You can not imagine how stressed I was waiting to hear the results that took one whole month especially that he had most of the symptoms except the fever. Finally the result  came and he tested negative for the 12 mutations .....THANKS GOD

The doctor only left  diagnosis was that sometimes the hemolysis done by spleen causes these pains (by the way when I ask my son to put his hand on the pain, he just point at his whole abdomen and not a particular place or side) and that is why it was always there

Is this true? Does any one of you feel these pains? If it is thal related due to hemolysis, this means that every thal should have it, right??

Please I need your feed back about this

What I started  three days ago, is giving him 10 drops of red root twice a day on a sip of water, may be this could help, actually I don't know

What do you think?

Manal

Manal,

stomach discomfort is the most common complaint in children, and often when they point to the entire tummy - and the tummy is not distended or hard - it is usually not a cause for concern. 

Lil A has often had the same complaint.  The cleanse that I mentioned seems to have fixed the problem.  His stomach issues and appetite have both improved since then. 

I am so glad that the test came back negative. 

Sharmin 

Dear Manal,

[The cleanse that I mentioned seems to have fixed the problem.  His stomach issues and appetite have both improved since then. ]

Could you please tell me again for the medicine or method that could help alleviate the pain. My son, Amrin, recently had this and I didn't really know what to do. Fortunately it subsided after it lasted for 3 days. Sorry for asking again. Thanks for your help

Cheers,
Souly

Sharmin
Thank you dear for your reply. But was little A having these pains everyday like my son. It is very annoying and it is awful having something so vague.

Souly,
You can read about the method Sharmin was mentioning in the link below
http://www.thalassemiapatientsandfriends.com/index.php/topic,3997.0.html

Take care
Manal

Hello All,

Little Miss A had the same problem for last two years and she points to the same area, i.e. below the waist line. We had done tests and nothing came up. However, we have observed that the pain is higher when she is on exjade and it subsides when there is a break from exjade. We had assumed this is due to exjade, the doctors keep telling us that they can't find anything.

Hope this helps.

hji manal

in my childhood i have this pains a lot....

it is typicall thalpain.....

in my chase my spleen put presure to the

ather organs, and on the other side my gallbladder

let me often hurts....    panos

Thanks Canadian family and Panos for your feedback. It definitely helps

Manal

The spleen and liver of thals will enlarge and as Panos said, it hurts. As far as Exjade use, is the pain accompanied with nausea? And in all cases, does this pain affect the appetite? And does anyone notice that Hb drops quicker when using Exjade. I ask this only because so many people have asked this question and I would like to gather more information about this. It would be very unsettling to learn that this is common with Exjade, as it would most likely mean there was some gastrointestinal bleeding with Exjade. This is a known issue with Exjade but supposedly in less than 1% of users.

CF, good to hear from you. I hope all is well.

Manal, your doctor mentioned hemolysis possibly causing the pain. There is nothing in the medical literature to indicate this as a result of hemolysis, but my own observation here is that your doctor may very well be right. I believe the effects of both hemolysis and ineffective erythropoiesis cause many problems in ALL thals, minor through major, and that this has been ignored by most researchers until recent years and this only after it was discovered that majors with low iron were still having heart disease. The oxidation and nitric oxide (NO) depletion caused by these factors can cause pulmonary hypertension and heart failure in majors and intermedia, so it isn't a stretch to think that other problems may also result from ineffective erythropoiesis and hemolysis. Antioxidants and nitric oxide inducers like L-carnitine are basically essential to thals because of these factors.

Andy, Exjade let hgb drop. This is especially noticeable when one suddenly stops Exjade. I've had the same with desferal and probably I will have the same with Ferriprox. I have not tested that out. I do not believe this directly means one has had gastrointestinal bleeding. Also when Exjade started to work, my platelets would go down.

When I was a kid I had always such pains. We never ever found the source of it. I was prescribed painkillers daily at the end but I never took them as I was afraid of those. It is not a thalassemia problem but a hematology problem. Wether the child has thal, PKD, DBA, CDA, SCD or even AA everywhere I hear the same complaints.

I still experience these pains but they have come less frequent. Please do not ask me why, because I have no idea.

Hello,

Thanks Andy. Everything is fine, little Miss A is taking a three month break from Exjade due to super low ferritin level of 100 only. Yes, the pain is accompanied by nausea, reduced appetite and we have also observed quick drop in Hb. Little Miss A cannot eat well when on exjade and its affecting her general health as well. She weighs only 50lbs at the age of eight.

The symptoms above are very common and I wonder if gastrointestinal bleeding is associated more than 1% with exjade.

Regards,

Gastrointestinal distress, including bleeding is my main concern about Exjade. I too believe that 1% is probably a very low estimate. I doubt most complaints are investigated or reported, but if Hb drops more with Exjade use, bleeding should be investigated.

Thank you Manal for the thread. It is useful. I will try to follow those procedure. My son has no more abdominal pain. However, I will keep any eye on him very closely. With regards to the bleeding, I think Exjade causes this to my son as well, if I guess correctly as it showed in his urine. The HB continued to drop for the two following months. With the medicine it stopped. Now I monitor him very closely if the case recurs.

Thanks everyone for sharing the ideas.

Souly

Same is the case with Lil Z ,she also complains of abdominal pain very often,but docs didn't find anything,her annual scans are yet to be done,and i am hoping they are clear.

Forgive me if I interfere inadequately in this conversation but have you considered IBS?
This functional disorder affects about 10% of the general population and abdominal pain is a very common symptom.
Physical and lab tests come back completely normal (colon has no pathological changes, no signs of inflammation or infection, etc.).
If your son's liver and spleen ultrasound is normal, stool test and colonoscopy OK then it could be IBS.
I also suffer from this condition and get cramps and pains throughout the day. Some days I have diarrhea, sometimes constipation and sometimes the stool is normal but the abdominal pain is always present with different pattern and intensity.

My has daughter has amenia and stomach pains.

All the common causes have been rule out.  The doctor does not believe the amenia and stomach are linked.

The doctors is looking at IBS (Irritable bowel syndrome) and suggest that when the stomach pains occur to write down all activities, food stress ect for the last 24 hours.

With the hope that when you look but this information a common thread maybe found.

Maybe the type diary will you find the cause of the stomach pains.

Catherine