My grand daughter is having a lot of issues and is considered to be a medical mystery by John's Hopkins and Sinai Hosp in Baltimore, MD. She is on an ng feed 24/7 right now for failure to thrive. No one seems to be able to figure out what she is suffering with. From birth,she has been extremely irratible, she does have Sandifer's syndrome, extreme gerd, esophagitus, she has been having seizure-like symtoms, very rhythmatic, eyes, arms, legs, torso, turns blue, she has had every test she could probably have, 4 eegs, the last being at Children's Hosp in DC for 36 hrs and video monitring, everyone was convinced it's Sandifer's, but seems so realistic. She had 4 episodes yesterday, and apparently unless an episode happens while on the eeg, they can't determine. She has acidic and non acidic reflux. Considering the ng tube to see is surgery would help with reflux, and another eeg, any ideas?
Hello,
I will email you privately too with some other ideas. Is one doctor coordinating her care? When you are dealing with multiple hospitals and specialists, this is very important.
My daughter had very atypical symptoms too and it took many visits to doctors and many questions on my part before everything made sense. Be sure to get copies of all medical records and travel to each appt with a set of records and your home observations/journal.
I will be thinking about you.
Jan
Yes, she has 1 primary gi specialist she is seeing. Because she has had to go to the ER several times, she sometimes sees other specialists. My daughter does keep the medical journal and is taking her records to each appt. She did have a consult for a second opinion and had been transferred to a different hospital 1 time for a neurology consult. Right now she has severe gerd, espohagatus, Sandisfer's Syndrome, and is having seizures, some of which have been disgnosed as neurological. At this point, the gi specialist is saying that she really believes there is something genetic or metabolic that is causing all of these side effects. They will be doing an nd tube for now and then a g-j tube in 2 weeks, which the gi specialist is hoping will be the only thing necessary to give her relief. I guess because she is having the seizures, she is hoping that the surgery isn't necessary. However the surgeon that she has consulting has told us that she is a perfect candidate for the surgery. I guess if the g-j tube gives the desired releif, we won't do the surgery. Then we will have to follow up with the genetic specialist for that series of tests.
Hello Lori,
Excellent-sounds like you are on top of this. I have found that bringing all of my own medical records to appointments really makes a difference. Even if you ask for records to be sent or faxed to a doctors office, the records may not arrive in the file or when the doctor needs them. The doctor is often grateful to have an organzied, sequential record.
My daughter received care from two and sometimes three hospitals at the same time. Not ideal but it can work.
I am wondering why the doctor is recommending a GJ tube and not a G tube? The G tube is more common.
The metabolic/genetic workup makes sense. Sounds like you have an excellent team for your little grand baby.
Best wishes,
Jan