My DD8 has had 24/7 nausea for 5 1/2 months with a few recent episodes of vomiting. After 3 1/2 months, she started having abdominal pain. Joint pain that has escalated, resulting in episodes of knee joint pain in the morning or after prolonged rest so bad that it hurts too much to walk. She also started having a sudden slew of muscular-skeletal/tendon pain/injuries and several months of constant back pain, while previously she was active with no injuries. She also developed severe headaches with it that are responding to better hydration and physical therapy, though still problematic. Eye pain with double vision is part of the picture, too. The double vision likely is her having trouble controlling her strabismus, but seems tied into headaches.
We saw GI at Vanderbilt. He said he couldn't explain all her symptoms, but he could explain the nausea as Eosinophilic esophagitis. Kids with EoE seem to often have joint pain and headaches, too. He said he thought the abdominal pain was IBS and that he always recommends the child see a pain psychologist to "help the brain heal the gut" if it is IBS to learn relaxation/stress management/pain management, etc. He said he frequently sees generalized over-sensitivity if the kid has IBS, with frequent headaches, too.
GI scheduled an endoscopy and colonoscopy, though he doesn't suspect she has IBD. Though I was confident she did NOT have constipation, he said the abdominal x-ray showed a lot of stool and recommended daily Miralax to see if her symptoms improved. The labs to date are normal, with the exception of CRP. CRP is 40% above the upper limit of the normal range.
We had a brand new ped. due to ins. changes, with visit #1 being the GI and neuro referral. Visit # 2 was yesterday to discuss a rheum. referral. She asked me about the GI visit, and I told her that he suspected EoE (my interpretation of I can explain the nausea as EoE). She interrupted and said, "I read the report, and he said your daughter needs to see a psychologist." I agreed that he had recommended a pain psychologist if she has IBS to "help the brain heal the gut." I tried to take he wind out of her sails and said I thought employing relaxation and stress management and emotional regulation techniques to help her better manage the pain and help with symptoms would be helpful. Ped. then proceeded to tell me how "CT scan is normal. Labs are all normal. You're running around to all these doctors and nothing is wrong. She just needs a psychologist."
She agreed to give her a rheum. referral if I wanted it. Vanderbilt gave me a pretty immediate appointment. But I am concerned that her referral will state "nothing is wrong but psychological." Her referral to GI stated my daughter was not ill.
I'm changing peds. She also snickered at me, which I found derisive, and I feel uncomfortable with a ped. who would NOT want a child with double vision to see an opthal. or a child with headaches so severe and unresponsive to pain med that she required 4 ER visits to NOT see a neuro, normal CT or not.
Would you wait until the scope is done and hopefully have a diagnosis OR do you think the CRP 40% above normal is enough that the rheum. will be willing to examine her, without dismissing her and castigating me before she even walks into the room if the ped. has referred us as strictly psychological issues.
I'm getting a copy of the GI report, too. But I cannot imagine that he would schedule a colonoscopy and endoscopy if he had concluded that her problems were strictly psychological. I didn't find his presentation of his policy of recommending psychol. for IBS offensive or dismissive, so it's hard for me to imagine his report being so, though I haven't read it.
A friend who is a ped nurse recommended asking his nurse what the report stated and explaining our ped's interpretation. She said she would ask why invasive tests are scheduled if Dr. Acra actually thought her symptoms were all strictly psychological. (We don't know that is what Dr. Acra said in the report; he didn't say that to me.) Would you do that?
I know from reading posts that many of you have went through very frustrating, rocky journals trying to get proper diagnoses and care of your children, so any insights you can share would be greatly appreciated. I tried to stay very calm and respectful, though I have no intention of returning. I hoped that would at least avoid escalation.
Thank you!
We saw GI at Vanderbilt. He said he couldn't explain all her symptoms, but he could explain the nausea as Eosinophilic esophagitis. Kids with EoE seem to often have joint pain and headaches, too. He said he thought the abdominal pain was IBS and that he always recommends the child see a pain psychologist to "help the brain heal the gut" if it is IBS to learn relaxation/stress management/pain management, etc. He said he frequently sees generalized over-sensitivity if the kid has IBS, with frequent headaches, too.
GI scheduled an endoscopy and colonoscopy, though he doesn't suspect she has IBD. Though I was confident she did NOT have constipation, he said the abdominal x-ray showed a lot of stool and recommended daily Miralax to see if her symptoms improved. The labs to date are normal, with the exception of CRP. CRP is 40% above the upper limit of the normal range.
We had a brand new ped. due to ins. changes, with visit #1 being the GI and neuro referral. Visit # 2 was yesterday to discuss a rheum. referral. She asked me about the GI visit, and I told her that he suspected EoE (my interpretation of I can explain the nausea as EoE). She interrupted and said, "I read the report, and he said your daughter needs to see a psychologist." I agreed that he had recommended a pain psychologist if she has IBS to "help the brain heal the gut." I tried to take he wind out of her sails and said I thought employing relaxation and stress management and emotional regulation techniques to help her better manage the pain and help with symptoms would be helpful. Ped. then proceeded to tell me how "CT scan is normal. Labs are all normal. You're running around to all these doctors and nothing is wrong. She just needs a psychologist."
She agreed to give her a rheum. referral if I wanted it. Vanderbilt gave me a pretty immediate appointment. But I am concerned that her referral will state "nothing is wrong but psychological." Her referral to GI stated my daughter was not ill.
I'm changing peds. She also snickered at me, which I found derisive, and I feel uncomfortable with a ped. who would NOT want a child with double vision to see an opthal. or a child with headaches so severe and unresponsive to pain med that she required 4 ER visits to NOT see a neuro, normal CT or not.
Would you wait until the scope is done and hopefully have a diagnosis OR do you think the CRP 40% above normal is enough that the rheum. will be willing to examine her, without dismissing her and castigating me before she even walks into the room if the ped. has referred us as strictly psychological issues.
I'm getting a copy of the GI report, too. But I cannot imagine that he would schedule a colonoscopy and endoscopy if he had concluded that her problems were strictly psychological. I didn't find his presentation of his policy of recommending psychol. for IBS offensive or dismissive, so it's hard for me to imagine his report being so, though I haven't read it.
A friend who is a ped nurse recommended asking his nurse what the report stated and explaining our ped's interpretation. She said she would ask why invasive tests are scheduled if Dr. Acra actually thought her symptoms were all strictly psychological. (We don't know that is what Dr. Acra said in the report; he didn't say that to me.) Would you do that?
I know from reading posts that many of you have went through very frustrating, rocky journals trying to get proper diagnoses and care of your children, so any insights you can share would be greatly appreciated. I tried to stay very calm and respectful, though I have no intention of returning. I hoped that would at least avoid escalation.
Thank you!
