Son in pain for 7 months. Need advice

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Hello,  Sorry in advance but this will be a long post.  I'd love some advice!  Long story short, my son was sent to ER in January with severe abdominal pain.  CT Scan showed mesenteric lymphadonitis and slight inflammation of the appendix. Appendix was removed.

A month later he was really sick again and ended up having Mycoplamsa in his throat.  All through the summer he had stomach pains.  Speeding up to currently, his pain is so bad for about 3 months.  Had multiple CT's done which only ever showed constipation.  They did a week long clean out even though he always had a bowel movement daily.  Now he struggles to have bowl movements and takes Miralax every day.  I swear the clean out just made things worse. 

We switched pediatricians because his previous one gave up on him and said he needed counseling.  His stomach pain is so bad i can't rest my arm on him, he has difficulty bending over, difficulty walking, he can no longer participate in PE.  He doesn't play with his friends much outside anymore because every movement hurts his stomach.  The pain is located around the belly button area.

He had an endoscopy done which showed high eosiphinills at the base of his esphagus.  This indicates a possible food allergy.  Gastro doctor said he doesn't feel that would cause such severe pain.  He only thinks IBS and again he suggested counseling.  Both the pediatrician and the GAstro refuse to order an MRI.  Gastro doctor ordered a Calprotectin test to check for inflammation and I just gave the stool sample today.

I feel like no one believes my son and my son feels so defeated and is tired of being in pain.  We've gone the probiotic route, peppermint oil, acid medicaiton, prescriptions from ER, etc.  Nothing helps.  I've called a therapist today to have him talk to someone about his pain.  He also has a ticking disorder that is REALLY getting out of control.  His ticking is usually brought on by illness and stress and I'm sure hurting for so many months cannot be easy for a 12 year old.  

I feel lost that I haven't been able to help him.  Do you all have any ideas of what is going on?  I'm praying the poop shows high inflammation just so finally we have a reason for his pain but  I'm afraid it will show nothing.

Any advice?  Thank you for reading htis long post!!!

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4 Replies

  • Posted

    I'm not really helping with my reply sorry but I would like to let you know that your not alone, I am in a similar position with my daughter (14). It is now 14 months without a diagnosis., she has been admitted to hospital so many times I can't count, filled with pain killers in the ED and sent home because they can't find the cause.

    While many doctors have said they think Crohns the colonoscipy/endoscopy showed nothing. She has lower right pain, vomiting and fainting when it is bad. She is just out of a 5 day stay in local hospital where they attempted to ease her pain, constipation and constant vomiting, (we left with a psychologist referral). The doctors do believe the pain is severe at times and decided she needs help to get through the pain until someone finds the cause.

    Meanwhile she's ok yesterday and today and is attending school with only diarrhoea.

    She is also on amitryptaline which is to block the nerve pain to the brain, I believe this is easing her severe bouts as now it only happens every few weeks rather than weekly.

    I just wish we could find the problem instead of masking it with pills.

    I do hope you get help and answers soon because it is so hard to see your child in pain and not be able to help them.

    Good luck

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  • Posted

    Hi Mitchele, he has appendix problem even it is slight inflamation, it  can cause death if it erupts. You should ask doctor to have surgery. It seems worse everyday that is why he cant walk or eat or play. Go and ask them for surgery, cut that part out and he will be Ok. I have friends who has the same thing and after the surgery, he becomes fine. So ask the doctor why cant they have him admit into hospital and do the surgery on it? Request for a surgery. If you leave it there, it will erupt and it  becomes too late.
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  • Posted

    This is a bit late but did you find out what he has? I have had crohns since I was 9(now 19) and I can say I went through the same and still do. I've been through 5 different medications and told my doctor none help and it's getting worse, yet they can't seem to do much for me. I've asked if they can do another MRI or scope, and they say they don't see much other than a bit of inflammation. Does he have a GI specialist? I would suggest getting him referred. Mine has helped me with a lot!

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