I have a long story so bear with me... i will try and keep it short.
This is all reguarding my 4 yo son.
He was diagnosed with GERD as an infant and was on Prevacid for the first 2 years. It helped some, but never took all the crying away.
Starting early last year he had a bad stomach virus. Vomiting watery diarrhea, pain, fever etc.
Ever since has had loose stools, lower right abdominal pain and gets tired pretty easily.
At first it was only every 2 weeks or so that we noticed him complaining of the pain. We had stool tests for parasites, c-diff and infection. All came back neg. Then he had another "attack" as we call them. Debilitating lower right pain, some vomiting, low fever and very tired. Was told it was still from the virus over 1.5 mths before and he would be fine.
Had a few more of these attacks along with decreased appetite up until Jan of this year, when i got sick of them telling me it was still from the virus over 7 mths prior...
Had a full blood workup as they called it. CBC w/diff, chem 14, thyroid, crp, esr, ggt and the tests for celiac disease and IBD. There were tons of them. The only abnormals were his monocytes (slight elevation), AST (slight elevation), ESR was high normal, vacuolated neutrophils and the Anti Cbir1 ELISA was at 38 (high).
Was told it was prob nothing but to schedule an appt with a gi dr. Had an upper Gi series (looked good), an endoscopy( slight narrowing of esophagus and inflammation in the stomach) and a sigmoidoscopy (looked ok). Was told it was only reflux again and put back on prevacid. Not sure that GERD causes lower stomach pain, but tried it. Still never got better and has had more "attacks". He is now not wanting to do things he loved and he is so sad.
Since he vomits with some attacks the gi dr ordered a MRI of his brain. Brain looked good, but entire sinus cavity was very inflammed. So they now think vomiting is from post nasal drip and still ignore the pain and loose stools. Was put on zofran to control vomiting. @ months later was also put on Levsin to help with pain. I actually think it did help a bit, but he has now been taken back off it due to a new GI Dr.
Had a really bad attack in May. Was hospitalized for it. fever, vomiting, naswty diarrhea and horrible abdominal pain. His labs were abnormal as follows: very elevated WBC, high normal amount of bands, elevated CRP, elevated protime, low normal albumin, low normal protein, slight elevation of AST. Had an abdominal u?s to rule out appendix. It showed multiple lymph nodes in the lower right quadrant were enlarged and decreased visibility of liver. So they tested him for several viruses and hepatitis. All negative. Was told it was a tummy bug and sent home. More stool was done there and the calprotectin was also high (121). No parasites or growth. Urine normal. i am getting extremely frustrated and upset. They are now trying to tell me his pain must be in his head, b/c tests look ok.
A friend of minews little girl has CD and told me to look into it further. I cannot believe how much this disease sounds like him. Had a recheck ultrasound and liver looks better, lymph nodes are going down, but still a few enlarged in that area. Blood work has improved for the most part, but his pain has been down as well. They did do a new test called LDH which was elevated, but we are to recheck that in 2 weeks.
What I am wondering is if this sounds like I should push further diagnostic tests for Crohn's Disease? I am getting so drained and so is he. I hate to have to put him through all of this and have them just give up. Any advice or help would be wonderful. So sorry about the novel and please ask if you have further questions.
Thank you so much if you made it this far!