Child Rum & her MRI results

[CaroPhoenix]

Not sure how many people read my letter in the "Dear ..." section. I had mentioned that on March 25, 2011, Child Rum was to go to DC Children's National Medical Center to get an MRI and bloodwork done. Just a routine thing that we hadn't done until now as the developmental pediatrician we had previously didn't tell us we needed to do so.

So I got a call from Child Rum's neurologist yesterday. I actually missed the call, but she left a message. In the message, I was told that the MRI looked "fine" except for a "mildly enlargened pituitary gland". I have no clue what that means exactly. I know what the pituitary gland does (I googled it). However, I don't know what it means for it to be enlargened. Does that explain why my daughter at the age of 7, is 4 feet 5 inches tall?

I let the Doctor's nurse know that I would be home all day today and asked the doctor to call me on my home phone. Well, I think I got a call from the doctor on my cell phone, but my cell phone decided to blitz on me at the time the phone was ringing, so I missed the call.

Right now, I'm freaking out. I've tried to call the office, but no one is answering me. I'm afraid to leave the house in case the doctor chooses to call my house phone and I'm not home.

This might be nothing and that with mediation or whatever, her pituitary gland will be just fine, but I'm a Momma, and I worry. Too much. But I worry.

[RecoveringKinkoid]

Hey, Rum, I know how it is to be a fretful mother. I'm thinking about you, and please try to keep us posted.

[CaroPhoenix]

Talked to the doctor

The doctor called me back!

Okay .. this is going to be a little convaluted.

She gave me the names and numbers of 2 different endocrinologists. One is with Children's Hospital and the other with a private practice. I'm going to call the Children's Hospital one first and see how fast I can get in with Child Rum. Dr. Lateef (the neurologist's name) felt is was very important we make the appointment as soon as possible. The endocrinologist might order more blood work and another MRI (concentrating on the pituitary gland itself). This probably does explain why my daughter is so tall and developing early.

Also, there's something else about Child Rum's brain. When you look at a normal brain, you see two halves, the left and right, and they are connected with a bunch of fibers. Child Rum is missing part of the front fibers of the connection and that controls her communication skills. There is nothing we can do for that. Though now, because we have this medical documentation, we can get more services through the school.

Not sure what to make of it. Right now I'm not doing too good. I have to call the endocrinologist and all I want to do is cry.

[surreal20]

Everything will be fine! Keep telling yourself that, bc it will be.

Take a deep breath. Call the dr, and make an appointment. It all works out in the end. Someitme sit just takes a long time to get there.

Be thinking of ya.

[Elspeth]

Many many hugs to you and Child Rum. I can only imagine what you are going through. And the posters before me are right everything will be fine. Keep us posted.

[KiaKat]

That's interesting about her corpus callosum. I know most of the time, autism can't be related back to a brain structure defect, but if hers is due to that, perhaps it's more easily treated, or maybe there are some better coping mechanisms.

I've always found the brain fascinating, sorry for the geek moment there.

*hugs* to you and Child Rum. I imagine it's probably a little exciting to finally have something tangible to point at as a potential cause.

[Amina516]

Oh, Rummy. Im sorry. Stay strong, keep up on your research, ask lots of questions and continue to do whats right for your daughter.

[AnaKhouri]

I'd be flipping my shit right about now too. It's always worst when you have to wait on things and they can't tell you specific details right away, your brain goes to all kinds of bad places.

My son had a fever once (he's only had one) and I didn't sleep all night, it's like seeing a giant pair of scissors poised to shear your heart in two.

Hugs and crossed fingers to you and your daughter!

[CaroPhoenix]

Thank you everyone.

I made an appointment with the pediatric endocrinologist. It's for June 21, but the appointment setter said she put us on a waiting list to see if we can get something before then.

I've calmed down enough (tuna pasta salad is a comfort food for me - and yes, I'm an emotional eater).

No matter what, she's the same Child Rum she was before I heard the results.

Plus, all the blood work that would be needed to be acted upon if there was a problem all came back normal, so there is a good thing, right?

The genetic tests (like the one for Fragile X Syndrome) will take a little more time to come back, but Dr. Lateef said she'd give me those results too.

I've also sent a prayer request to the Basilica of the National Shrine of the Immaculate Conception. I'm thinking of also having them light a candle for her too.

I'll keep everyone updated.

Thank you again.

[Mikkel]

That's interesting about her corpus callosum. I know most of the time, autism can't be related back to a brain structure defect, but if hers is due to that, perhaps it's more easily treated, or maybe there are some better coping mechanisms.

It will probably help her that they have discovered that. I'm sure it will go well.

[RecoveringKinkoid]

I was gonna say the same thing...nothing's really changed, just now you know some things that are scaring you. Child Rum is still the same Child Rum.

Look at it this way, having a concrete thing they can point to and say "here's this child's situation" ought to be a lot more easier to take care of than what usually seems to happen with autism, which is "We have no idea why your kid is like this."

[blas]

Thinking of you, Rum!

[Dreamstalker]

That's interesting about her corpus callosum. I know most of the time, autism can't be related back to a brain structure defect, but if hers is due to that, perhaps it's more easily treated, or maybe there are some better coping mechanisms.

There've been lots of studies showing that the brain can regrow pathways around damaged areas (dad suspects that's what happened with me; looking back at it my 'improvement' was more rapid than could be explained otherwise).

Look at it this way, having a concrete thing they can point to and say "here's this child's situation" ought to be a lot more easier to take care of than what usually seems to happen with autism, which is "We have no idea why your kid is like this."

Yup. The "we don't know" camp tends to gravitate toward chemical solutions which tend to do more harm than good if the child doesn't actually have what the meds are supposed to treat.

*HUGS*

[DGoddessChardonnay]

Hang in there, Rummy. We're all thinking and praying for you.

[Shpepper]

Rummy, I am so happy for you that you now have a place to start with more options for Child Rum. Get a copy of her mri files and carry them with you. Then if someone says they don't know why something is the way it is, you can show them. I did that with mine for awhile. The look on peoples faces when you pull out pictures of your brain is priceless. But beware, as I have come to know Child Rum over these boards, she may want to decorate her room with the pictures.

I am glad that the new doctors office is trying to get you in as soon as possible. Hard as it is not to worry, remember this, at least they didn't tell you they were clearing space on the schedule for you to come in the same day. She is able to wait for an appointment.

*HUGE PEPPER HUS* to both of you and please keep us updated.

She is who she is and that won't change, knowing the background and possible causes, may just make helping her a little easier.