More news about her MRI

Now that we've had a little time to research this and learn some things, I can write a little bit more. Most of her spine is fine, everything normal. However, they found that she has epidural lipomatosis. This is a tumor-like, fatty tissue that can develop around the spine. It's in the thoracic region in her spine. It's rare, found more in men than women, and usually not until later in life. Which obviously makes her case even more unusual. It can develop on the spine from long-term steroid use or obesity.

Now, in Peanut's case, she's had some steroids in her life, but not a long-term use of them. More than likely, I would have to say that she's developed this due to her obesity. So this does nothing to explain her weight gain at all, instead, this is a result of the added weight. It can cause further problems, both neurologically and physically. The best way to fix this is losing weight, yet we still can't get that to happen. Even though she's becoming more active, not fighting us all the time, and eating even better. There's always a chance that she'd need to have surgery, but we're not even thinking about that yet.

We got this information from Dr. K. who is filling in for her pediatrician Dr. S. who is on vacation. She was returning my call since I had inquired about the MRI results. I guess Dr. S. started her vacation right after Peanut's test. It was nice of Dr. K. to at least call me back and give me the information. I need to get the results passed along to the neuro-ophthalmologist, so he can check things out. And then when Dr. S. gets back next week, we need to discuss her ultrasound. The techs at the hospital told the central scheduling that they can't do an u/s on a 5 year old, for the adrenal glands. But I know that Dr. S. said that's the best way, and I'm thinking she had something specific in mind.

For today, we had a visit with her pulminologist and opthalmologist. Both said she's doing fine. Her breathing is good, no problems there, Dr. A. said she's all good there. And then Dr. M., her ophthalmologist, said that the patching of her right eye, to strengthen her left eye, is helping. He found a slight improvement in her left eye's strength. So that was a good thing! We just need to keep doing that. And we'll see both of them again in 2 months. We also did a 24 hour urine collection that Dr. S. ordered 2 weeks ago. This will be testing a bunch of her hormones to see if there's anything going on there. Which is something we thought that Dr. G., her endocrinologist, would have ordered a long time ago.

Sooo... I will update more once we get more information from the appropriate doctors. I really don't know who we'll be seeing to deal with this. We're still researching, reading, and finding out more info ourselves. Thanks for all the thoughts and messages!