Update on Michael

Michael had his echocardiogram on his heart, and it was normal. Praise God. So the chest pain appears to be muscular in nature. Not that that makes Michael feel any better, but at least it is not more serious.
Michael also had a visit with the hematologist for his Evan's Syndrome, and his platelets on 05-29-08 were 212 (still normal). The doctors were able to wean Michael off the Prednisone, and he has done well with that.

Michael saw endocrinology the same day. Some of the things of concern were Michael's growth curve, which appears to be tapering off, his headaches and vomitting, and the pain in Michael's sides and back.

Michael's growth is extremely delayed as well as his development. His growth factors in his blood work were low, and his bone age is also 2 and 1/2 years delayed. Michael will be starting Growth Hormone in a couple of months.

Children can have short stature due to premature birth, intrauterine growth retardation (IUGR), and failure to thrive among other things. The doctors suspect Michael has had all of those based on what we know from his background. Growth hormone can often help these kids. Children with IUGR if it is caught by the time they are 3 years old, can be treated and grow to normal heighth. If it is not, then often they are very very short.

Growth hormone is given as a daily subqutaneous injection, and Michael would start at 12 years old and continue the injections until he completely stopped growing maybe 18 years old.

The endocrinologists also wanted to rule out tumors of Michael's brain, hypothalamus and pituitary, and ordered an MRI stat. Michael had that done last Monday, and PRAISE GOD that came back NORMAL !! Waiting for that was a killer. Can you imagine a doctor telling you 'we need to check for brain tumors'? Glad they did, and glad he doesn't.

And then, a lot of blood work was drawn. Michael's thyroid is holding its own right now. Good news. His Cortisol level was only 1.4 though. Cortisol is a hormone released by the adrenal glands. ACTH in the hypothalamus in the brain triggers the release of cortisol. Cortisol is critical to life. You absolutely have to have it or you go into shock and die. Normal levels of Cortisol in the blood range from 6 to 23 depending on the lab that does the test. So, Michael's is really really low. Cortisol helps regulate metabolism, stress, immune function, sodium and potassium, and not enough of it can cause many symptoms such as lethargy, weakness, nausea, vomitting, high fever, lack of appetite. We are crossing our fingers and hoping Michael's cortisol is low because he was on Prednisone which may have surpressed the levels. Prednisone, in my understanding, can cause this also though.

Michael struggles with not feeling hungry, not feeling thirsty, nausea, vomitting, feeling tired and weak. So, we are keeping an eye on him. The important thing is to make sure Michael does not go into Adrenal Crisis where the body is not making enough Cortisol to sustain life; that would be very dangerous. Endocrinology is going to do an ACTH stimulation test to check if his body makes enough cortisol. We will be glad to know those results.

He still struggles with all kinds of joint pain, sun exposure, heat intolerance, bright lights, loud noises, touch taste and smell sensitivities, and GI problems. We are learning how to cope with each and how to help him each day. Still not done with the testing for autism.

Michael is just tired of being sick. But at least we are having more good days than bad days right now.

Blessings to all,

Jennifer