Any suggestions wound help- unknown diagnosis - hold you harmless

[Mblandau]

I am reaching out as I am in desperate need of guidance in regards to our medical needs and insurance. I believe we need to see a pediatric PCP in OHSU Portland. My daughters PCP has been less than helpful/involved- He just sent us to OHSU rehab and psychological pain clinic. They put her on Gabapentin and scheduled rehab. I don't feel we have enough answers to be throwing medications at it- we have been getting PCP care from the GI Specialist in Portland- not her job or scope- although she is trying to help and I am so grateful, I feel like things have been overlooked- many symptoms are not addressed. I need someone with experience in odd symptoms and cases. I used to get notes from school about how she was always smiling. She had such light in her. I am afraid it going out. She doesn't go with/or have friends over- that's just not her!
she is now so depressed she is saying “ I don’t want to be here anymore “ She has had unresolved sickness for 6 months and I’m not sure where to go from here-every time I get a highly recommended physician they are full on JCC patients or don’t take it at all. This is my first experience on this insurance- and although the docs who accept it say it’s good for them - but for the patients, I am inclined to disagree- I have had issues with rudeness and mistreatment of my daughter on this program I have never experienced before. She cried from Portland to Medford thanks to a damaging comment from a surgeon who didn't bother to even look at any imaging or read her history before the consult. Another bad experience. She then tells the GI specialist we do need surgery after totally scaring my child with horrible what ifs and disparaging comments.  I need a doctor who will really look into this- There is just so much going on; severe anemia, supposedly from esophagitis but no one visualized blood in 2 endoscopies -and 2 stool samples without blood and one with very little- which could be from constipation- (now resolved) but definitely not conducive of major blood loss in the esophagus. There should be a good amount in the stool. Pediatric Fibromyalgia or complex regional pain syndrome I feel are easy go away /junk answers- she wakes up drenched in sweat frequently- I mean soaked and has to change her clothes- she was sleeping very little- 3 hr a night for 6 mos, now she sleeps all the time 14 hours? She gets bumped in that area and instantly hits the floor sobbing-Her body is trying to tell us something- I need someone board certified who can take a look- someone with experience and accreditation? I would do anything to have access to this again- why not - because I was laid off and fell on hard times? Should our children have to pay for life’s circumstantial timing??? I don’t know if I should get a social worker or lobby in Salem or where to go next- I am so heartbroken for her. She is the kindest sweet girl, still always thinking of others-and doesn’t deserve such medical neglect- shuttled around with no fix in sight- She has lost all faith in the medical community which will be detrimental in the future- I keep telling her we will figure it out and she says “ they don’t care mom “ “ they can’t fix me” “ I’m scared it won’t go away- it hurts” with profuse sweating, poking sensations in her gut, severe gluteal pain, the anemia/weekly infusions, hiatal hernia, esophageal dysphagia and depression -when are her symptoms enough to get a good doctor? One that got honors in med school /not just got through it- PLEASE I'm begging you.... Help my daughter. I just can't bear to watch this go on any longer.... I am trying to get on my feet and will never bother the state insurance again when I do- a program, a resource, a medical loan program - I will do anything -
I don't know how else to explain the heartache I feel and the sadness in my little girl -who always smiled and now hardly ever does.
Sincerely, Mary Blandau

[uomeasmile]

Mary my heart breaks for you and your daughter. It sounds like you are doing the most important thing, which is advocating for your daughter. I'm sorry I don't have any definitive answers for you. What I would encourage you to do is keep very detailed notes. Gabapentin is a miracle drug for some, but can have psychological side effects. With the constellation of medications, there is also a possibility of drug interactions in addition to underlying symptoms. As draining as this is, keep fighting to find a physician you and your daughter are comfortable with. If you need the doctor to repeat what they have told you, simply ask them. If you feel like they have not done their due diligence looking at her labs and radiology reports, ask questions. Most of all, engage in self care so you are healthy and can take care of your precious girl. Discussing this with a social worker is an excellent idea, and you would have an extra advocate. Blessings to you both.

[Mblandau]

Thank you for your kindness. I am going to consult with an osteopath and if they do not feel it fits then possibly an endocrinologist - I will always fight for her! I as most mom's would do anything to help my baby! Thanks again! M