We live in TN. Chris, myself (Leslie), baby brother Christian (2yrs) and Keegan have entered into a new world about the pituitary gland! Keegan is 5 years old and has just begun kindergarten
at a local private Christian school. Keegan absolutely loves sports. He has always loved any and all sports having to do with a ball and he's great at them. I think his favorite would have to be baseball. Although he was by far the smallest child on the 5/6 yr old team this past summer (2009), he had the highest batting average to everyone's dismay!
Keegan was born on 2/6/04 in TN. He was 7 lbs 6 ounces and 19.5 inches long. He was perfect. Shortly after arriving home from the hospital, he began to have severe and daily vomiting. Keegan's growth was normal for several months until around 5-7 months old. I had been able to feed him while asleep, relying on the natural sucking reflex up to this point. The pediatrician kept telling me that although his father is 6' tall and I'm 5'8" that we can still have a genetically short statured child.
My mother's intuition just didn't believe that. I kept proding and proding until I was referred to a GI doctor. The GI doctor tested Keegan for GHG, IGFD, etc., cancers, allergies...; you name it and he was tested and retested to the point of exhaustion. After having esophagitis, ulcers, GERD and
other horrible GI problems, we were finally able to diagnose an intestinal malrotation at 13 months old. This finding led Keegan to have a 6 hour operation to loosen the adhesions holding his tract in a severe and uncomfortable manner. Although the intestinal tract can never be reversed from the malrotation, it can be "helped" to let food and liquids get through easier. (The GI doctor went in to do an endoscopy/colonoscopy and was able to see the malrotation.)
By this point, the doctor and myself both thought that we had our "ah-hah" moment and figured out why Keegan's growth had stalled and we were ready to get him back on track. At 16 months of age, the GI doctor went back in to place a G/J feeding tube and perforated his jejunum with the scope. This resulted in another and longer 12 hour surgery to resect part of his jejunum and repair the other damage. My little boy was in such a state! He made it through and we were able to feed him
via the tube. So, one would think that he would GROW! When he did NOT grow, the doctor (GI doc and pediatrician) said...he needs even more nutrition through the tube. Yet again, we tested and retested to find nothing. (At 11 months old the IGF's were tested and one was low and the other the low end of normal-but never retested because we found the malrotation)
So, here we stand at this point with a 2 1/2 yr old who is unable to take anything by mouth whatsoever (severe food/mouth aversions due to over feedings), he now has a G tube had still vomits when overstuffed with pediasure enteral formula! At age 2 1/2, I decided that no matter what, I wanted him to be as "normal" as possible and that didn't include a feeding tube. All I could think about was him starting school and how would he get his nourishment if I weren't there to do the tube.
So, we went to Atlanta, GA to The Marcus Institute to deal with the severe feeding aversion. His
aversion was like nothing most folks even know about. They would say, "oh, my little one is picky, too." That's just not the case when you go through something that we did. Keegan and I stayed in Atlanta for 2 months solid at the outpatient clinic. It worked! By the time we left, he was no longer requiring ANY substance through the feeding tube. What an incredibly difficult journey
and so trying that I almost gave up...but he succeeded!
At this point, Keegan's growth was still so slow. I wish that I had known that there was a certain amount of growth expected of an average child because I would have then had the amunition I needed to figure this out faster. The doctor's repeatedly told me that it must be genetic. It never once dawned on me that it could be hormonal. At Keegan's 5 yr old checkup, his pediatrician said that he was "flatlined" on the growth chart, AGAIN.
This prompted a trip to the Endocrinologist. Our town only has 2...and I was referred to Dr. B.
She immediately tested for the IGF "things" I call them and found that they were low...not even on the chart. She ordered an MRI that was scheduled for 4 1/2 months later. When Keegan developed daily headaches, I acted as any mother would and caused enough uproar to get it moved to June 30th, 2009. This was the bad day. We found that he was GHD due to a craniopharyngioma (brain tumor). At this point, it is the size of 2 acorns and we are being treated at St. Jude Children's Research Hospital in Memphis, TN.
Keegan is currently stable, although he does have peripheral vision loss, but we are willing to risk the loss of some vision to get him to grow to make surgery safer! Keegan stands 38" tall and weighs 32 lbs. I've always focused on the weight rather than the height because that's what the doctors did. Now, I know better. Dr. B. (pediatric neurosurgeon) and Dr. K. (Radiation Oncologist) at St. Jude's Children's Research Hospital in Memphis, TN think that we no longer have time to "play" with. At this point, we are scheduled to return to St. Jude in February to have a biopsy and major brain surgery. Keegan will have to have the tumor removed, but the doctors need him to grow, grow, grow. He will never regain the GH that he's lost and when he does have the surgery, he will end up hypopit or panpit. He's got a long road ahead of him...but we're ready for it.
Update: February 23, 2010
Keegan is out of surgery in for a CT scan. Keegan is fine, but the surgery did not go well. The mapping and MRI guidance was "off" based on his small stature and when he went to make the first incision on the tumor, CSF fluid poured out (spinal fluid). This means that it wasn't the tumor, but the dura surrounding the brain. The operation then had to stop and a fatty deposit was removed from his stomach to close the fluid leak from his brain.
Update: February 24, 2010
Dr. R. was convinced that what he sliced open was in fact the tumor/cyst. The CT scan from yesterday also indicated that it was the tumor/cyst. Well, the tumor/cyst that Keegan "should" have had or was most "likely" to have had should have been filled with a substance much like black motor oil. In fact, THE SURGEON DID SLICE OPEN THE TUMOR/CYST AND IT DRAINED 100% SPINAL FLUID. THEY GOT IT!!!!!!!!!!!!
The is a MIRACLE beyond all expectations, it proves beyond a doubt that prayer works, prayers are answered and miracles do exist in our modern age. I am forever humbled by the grace of our Lord.
So-here are the facts. The surgeon thought that he sliced the lining of the brain, the dura. In fact, he was on the right spot and it was the tumor/cyst. A craniopharyngioma/rathke's cleft cyst should have been filled with the black goo, but when the surgeon sliced and spinal fluid poured out, they freaked out and closed shop because they thought they were wrong. It turns out that there is an even more rare cyst that can occur in this region called an arachnoid cyst. This type of cyst is full of SPINAL FLUID. So, that being said, the results of the latest MRI reveal a "popped" cystic sack just hanging out. There is NO pressure on Keegan's optic chiasm, there is NO pressure on Keegan's carotid artery AND all we have to do is follow the sack with MRI's to see if/when it comes back. I kinda laughed when the very giddy Dr. B. said all this to me and said, "too bad they closed the cyst back up." At this point, I don't care!!!!
