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By Diana
Kathryn came out limp and pale. The Neonatal ICU team was called in and gave her oxygen and helped her get started. This was my worst nightmare, because I had worked at the hospital and attended high resk deliveries with the team who was resuscitating my baby! She perked up and they let me hold her. Then they checked her blood sugar and it was very low. (I found out later that this is one of the clues of hypopituitarism). They took her to NICU and started an IV and tested her for an infection, because she remained floppy and inactive, and I had cultured group B strep, and was treated with antibiotics during labor. Kathryn was started on antibiotics, and presumed to be septic, although her cultures never revealed any infection. Her blood sugars continued to be low, so they started glucose in her IV fluids. Then Kathryn developed severe hyperbilirubinemia, and was under three banks of lights for several days. The doctors couldn't believe how stubborn her bilirubin levels were, which I found out later was another sign of hypopituitarism. She was too floppy to eat and was tube fed for three days. Then she became a good little eater. She was sent home at 5 days old, with phototherapy light and an IV, because I knew I could care for her at home.
Kathryn developed feeding problems after being home for 1 week. She was diagnosed with Rotavirus, that tore up her lining in her stomach and intestines. She had blood in her stools, and scared us to death! She also began to have problems with reflux. She was started on Zantac and Cissapride, and eventually would not tolerate even my breastmilk! We ended up on a formula called Pregestamil, at 20.00/can, and worked around lactose intolerance for the next two years. At 9 weeks old, Kathryn had her first of many ear infections. She had frequent upper respiratory infections, and just seemed to be ill most of the time. As a few more months went by, I noticed her left eye was turning in, and that she didn't seem to be doing the developmental things that my son Sean did as a baby. For the next few months, I would just hold her and look at her and grieve, because I just knew in my heart there was something else wrong with her. She seemed to run fevers for no reason, and got overheated very easily. Knowing now what was going on with her, it amazes me she never went into adrenal crisis or had a seizure. Her guardian angels were working overtime! At four months of age, I mentioned to her doctor that she wakes up at night to take a bottle at least two times. I also noticed that she seemed more thirsty than hungry, and sucked down that nasty formula like it was the best thing she ever had! Her lips were often parched and dry, and she would cool down after a bottle. Kathryn was gaining weight well with all of that formula intake. My instincts told me to give her water, but I knew giving a baby too much water can dilute the sodium levels and cause seizures. Kathryn kept gaining weight, and I was giving her 8- 8oz bottles a day. At 6 months old, her left eye was really turning in. We made an appt. to see a Pediatric Opthamologist, but it took two months to get in. Finally, we went in for our appt. and the opthamologists optometrist dialted her eyes and said he saw a "halo" sign, which could mean she had small optic nerves. He also mentioned deMorsiers Syndrome and hypopituitarism, but Kathryn wasn't small and it would be something for the Opthamologist to discuss with me. We went away with a prescription for eyeglasses to correct farsightedness, and patches for her good eye. The opthamologist saw her 4 weeks later and never mentioned any abnormal findings on the optic nerves, and scheduled her for eye muscle surgery.
Kathryn was becoming more and more thirsty/hungry, and was soaking through her diapers at night. After a few weeks of changing her diapers several times a night, I remembered what the optometrist said about hypopituitarism and DeMorsiers Syndrome. I knew about Diabetes Insipidus because of my medical background. I called her pediatrician and he ran some tests, and Kathryn was referred to an Endocrinologist and diagnosed with pan-hypopituitarism. She was put on Synthroid, Cortef, DDAVP, and Growth Hormone. Her eye muscle surgery was postponed until we could get her straightened out, thank God! She sailed through it. She had an MRI that showed normal brain structure. Kathryn also started to see a Developmental Specialist for her delays in gross motor, fine motor, and speech. She started getting early intervention services with PT, OT, and Speech/Language Therapy. She learned to walk with a walker, and was walking independently at 27 months.
As Kathryn started getting older, it was apparrent that she had some sensory integration challenges. She hated going from an upright position to lying flat, hated her baby swing,couldn't handle bright light, and wouldn't touch her feet to the floor or bear weight. We worked extensively with an OT who specialized in sensory integration, and still continue to work on these issues with Kathryn. Kathryn has alot of auditory defensiveness, and recently got some ear plugs to help "tone it down" a little.
Kathryn was diagnosed at age 2 1/2 , with SOD. The Opthamologist finally got a good look at her optic nerves and said they were pigmented, and agreed with the diagnosis of SOD. Her vision is very functional, but she lacks depth perception and some peripheral vision. She attends Childrens Center for the Visually Impaired, and is learning how to compensate for her visual deficits. Kathryn also has problems with her hypothalamus, that regulates her body temperature, sleep and appetite. In addition to being insatiably thirsty with DI, she also is insatiably hungry. We are trying to maintain a 1000 calorie diet, which is a challenge for a toddler who is constantly hungry. Kathryn is cognitively normal, and is a smart and loving little girl. She is truly special, and has been through more in three years than most people go through in a lifetime. We have been truly blessed to have her.
