Mighty Meghan's Journey: June 2014

Wednesday, June 4, 2014

Last Tuesday was Meghan's last day of speech therapy, and Wednesday was her last day of PT/OT until she begins preschool in September. They were very bittersweet days! It is SO different not having the therapists coming to our house twice a week! We sure do miss them! I forgot to take a picture of Meghan with her speech therapist, but remembered to take a picture of the PT/OT ladies. We made Meghan's therapists a little thank you gift.

We got results from Meghan's growth hormone stim test. Meghan had 7 blood draws to measure how much growth hormone her pituitary gland produces. Meghan's results were: 2.9, 1.5, 1.5, 5.6, 3.9, 3.2 and 6.2 ng/ml. In order for her Endo doctor to officially diagnose someone as having true growth hormone deficiency, the peak number needs to be 5.0 ng/ml or under. Meghan's peak number was 6.2. Normal is 10.0 ng/ml and up. What her numbers show us is that growth hormone is being produced, but at a pretty low amount; hense Meghan's growth issues. Since Meghan's peak number was 6.2, which is a low number, she does qualify to receive growth hormone shots. We are going to wait until August and we will meet with the Endo. At that appointment, she will evaluate Meghan and we will discuss treatment to make sure we are all in agreement. She sent us information to read about hormone therapy that she would like us to read before we meet in August. There are definite pros and cons to GH therapy! If we all agree to try hormone therapy, we will do a one year trial first. If her body accepts the growth hormone and she grows, we will continue for 10 years. If her body does not accept the growth hormone, we will stop. I am glad that we have answers on her suboptimal growth.

Miss Meghan had her 3 year pictures taken a couple weeks ago. Here are some of her super adorable pictures. Her brothers even got to join in on the fun!! I just looooove the sparkles in her eyes!!!

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This blog has been created to keep friends and family updated on the medical journeys we embark upon with Meghan. We will share updates on doctor appointments, therapy sessions, how Meghan's life is affected and how life as a family is affected. Please Note: The medical information on this blog are from our experiences and should not be substituted for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

When Meghan was 9 months old, she was diagnosed with Hydrocephalus (secondary to Aqueductal stenosis) and Chiari Malformation - both are incurable brain conditions.

At 13 months, Meghan was diagnosed with Syringomyelia throughout her spinal cord.At 22 months, Meghan was diagnosed with Hemihypertrophy of the entire right side of her body with a secondary limb length difference involving her legs, and Grade 2 Hydronephrosis of her right kidney.

Other diagnoses Meghan has are: failure to thrive, macrocephaly, global developmental delays, apraxia of speech, hypotonia, syndactyly, degenerative disk disease, growth hormone deficiency.

Hydrocephalus - Cerebral spinal fluid (CSF) surrounds and protects the brain and spinal cord. Hydrocephalus occurs when there is an abnormal accumulation of CSF within the ventricles of the brain. As CSF builds up, it causes the ventricles to enlarge and can increase pressure within the brain. There is no known way to prevent or cure hydrocephalus. Hydrocephalus is treated surgically by the insertion of a shunt. A shunt is a flexible tube that diverts the flow of CSF from the head into another region (most commonly the abdominal area) of the body where it can be absorbed. Shunts commonly include valves to regulate CSF flow based on pressure and/or body position. If left untreated, hydrocephalus is usually fatal.

Chiari Malformation (CM) - A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the bottom of the skull toward the spinal cord, putting pressure on the brain, skull and spine.

Syringomyelia (SM) - A chronic disorder involving the spinal cord. The condition occurs when cerebral spinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Hemihypertrophy - A condition in which one side of the body, or a part of one side, is larger in size than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis. For those that have a secondary limb length difference, there are two main surgical options, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally.

Hydronephrosis - aka water in the kidney - is swelling (dilation) of the urine-collecting structures of one or both kidneys due to obstruction of urine flow from the kidney. This can impair kidney function. If left untreated, this condition will progress to kidney failure.