Lauren's History and An Update

I remember the day I found out I was pregnant with Lauren like it was yesterday. We lived in Boyd, Texas at the time. Dave was a history teacher and a coach and I was in college and a substitute teacher. On this particular day I didn't have classes and nobody had called me to sub. Dave had already left for work and I was making the bed when a wave of dizziness washed over me. Somehow I knew right then that I was pregnant. I got dressed, ran to the little grocery store there in town, bought a pregnancy test and was back home taking it within thirty minutes.

When I saw that it was positive I couldn't wait to get up to the school and tell Dave. We had lost a baby due to miscarriage and somehow things just felt empty after that. I knew this would make him as happy as it had already made me. When he walked into the office and saw me standing there holding a cute little pair of baby booties he picked me up in front of the entire office staff and swung me around and around. Then immediately pulled me into a little office used for meetings, put his arms around me and prayed for God's protection over me and our unborn child. Little did we know how very much she'd need those prayers.

Early in the pregnancy I started bleeding and was put on bed rest (much later...and after three more miscarriages we found out I have a Bicornuate Uterus). Then later I developed Preeclempsia and was put back on bed rest. Looking back I guess the Preeclempsia was pretty severe. I was so young though and so optimistic. I guess I really couldn't imagine anything bad happening to me or the baby. I managed to carry her to the 37th week and at that point a stress test was done and something was wrong (honestly I don't even know what it was) and they decided to induce labor. They started the drip at five p.m. on a Tuesday and I had her at two p.m. on a Thursday. She didn't open her eyes when she was born. I thought she was sleeping (again, I was so young). They took her away without her ever crying or 'waking up'. Still I thought everything was fine. Many hours later I heard the doctor calling for a care flight. When they said the baby's name I started screaming for someone to come and tell me what was going on (this was literally seven or eight hours after she was born and nobody had told me she was sick). I heard my mom out in the hall telling Dave that he had to tell me. I heard him crying (for the first time ever) and saying he didn't know how. Finally he came in and told me she was very sick and they didn't know what was wrong. Her Apgar had been a two. That's bad.

Long story short on her birth (well sorta short) she was care flighted to Oklahoma City where Dave was told she wouldn't make it through the night. She had Group B Strep. Her lungs were not working. Her collar bone was broken (and various other problems). They said if she somehow pulled through this she would probably be brain dead. God worked a miracle (the first of many) and she came through the illness seeming to be perfectly healthy.

At six weeks we went to her first visit with her new Pediatrician. That's when we were told something was wrong with her heart. She ended up needing open heart surgery. We had that done the week before Christmas when she was 13 months old. She slept the entire first year due to three holes in her heart.

Then the next four years were great. She seemed so healthy and everything was going fine. Then Lauren started to develop breast tissue. It really worried me so I took her to the pediatrician who said it was just baby fat. I had my doubts but tried to put my worries aside. When she started developing pubic hair later that year (in kindergarten) I knew something was wrong. I made an appointment with a pediatric endocrinologist myself and found out she was in precocious puberty. They did an MRI to look for tumors. When none were found it was determined that this was idiopathic and we needed to just treat the symptoms. They told us her growth plates were closing early and that it would take a few inches from her adult height. They predicted she'd be 5'7" even with the inches she lost. I'm only 5'4" so I thought that sounded great! The next visit they did another bone age and found she'd only be 5'4". I was still okay with that. The next visit they said she wouldn't even make five feet tall and that her bone age was that of a thirteen year old (she was six by now) and that her growth plates were closing already. Then she started her period. When she was SIX.

At this point we put her on Lupron (a truly awful drug and I still wonder if we made the right decision putting her on it). The Lupron put her in menopause and stopped the puberty process. She took it once a month in the leg and each shot cost us $1921.00. Our insurance did not cover it. It was not easy, but of course she was worth every penny.

Eventually we moved and her new Endocrinologist took her off the Lupron. She was nine at the time (I think). Almost immediately Lauren got very, very sick. She had so many symptoms that I didn't know what type of doctor to take her to. She had hot flashes, facial flushes, tachycardia, high blood pressure, major headaches, dizzy spells, gushing nose bleeds...I could go on and on, but you get the idea. We switched Endocrinologists again because I really felt like her problems were related to her endocrine system somehow. We found a fabulous new doctor (he didn't take insurance, but I stayed with him because he was the best around). Finally we got another brain scan done and they found a Pituitary Macroadenoma. It was so large that it had broken through her Sphenoid Sinus Cavity and filled it.

She needed brain surgery. Wow. That was a scary time. Our new endo ordered copies of the original brain scan that they took years before and on it they saw the tumor. Granted it was small at the time, but it was there. They had missed it. Anyway, we got the surgery set up at Presbyterian in Dallas with a Surgeon our endo really liked. We did the preop and filled out all the forms.

Then the night before the surgery we got a call from hospital administration. They canceled the surgery. We were in shock. They said she was too young for a surgery at their hospital and that we needed to go to Dallas Children's and have it done there. We had to start all over. We got everything set up at Dallas Children's and then THEY called right before the surgery and said the last MRI they ran showed the tumor was almost gone. PRAISE GOD. The doctors said that when they put her back on Lupron it must have starved the tumor of the hormones it needed to grow and it shrunk. We gave God the credit (as we should have).

Since then we've dealt with several health issues. Lauren has epilepsy. She has seizures every day of her life, but we have them under control now with several medications thanks to her great Neurologist. Her endo put her on a regimen of medication formulated to help her grow (and stop the growth plates from closing). It worked. She did make it to 5'2".

Fast forward to the present. Lauren has been having dizzy spells again and getting really sick to her stomach after every meal. We are not sure what that is about. She also has terrible back pain. We've tried buying new pillows and even a new bed. Nothing helps. She is to the point that she is asking to just sleep sitting up in the recliner to try and stop the pain. She also has awful pain in all her joints (especially in her knees). This is what led us to the doctor's office recently. She's been hurting like this for a really long time so I finally decided we need to figure out what is going on.

The rest you know about. He sent her for a MRI of her brain because some of her symptoms (sometimes her pupils don't match up, half her face droops and she loses feeling on the left side) sound like MS and she has some suspicious spots in her white matter. He also ran blood work for Rheumatoid Arthritis due to the genetic possibility that she has that and he sent her for a nuclear bone scan. Well the office called yesterday and said he really wants to see her again after Christmas, but didn't give any results. I couldn't wait another week. No way. So I went in and got copies of all the test results. I needed them anyway to send to all her specialists in Dallas.

This is what I found out. The spots are still on her brain, but they haven't changed. MS can't be ruled out, but the Radiologist doesn't really feel like that is the problem. Yay. There is also NO SIGN of the pituitary tumor. Praise God again! The blood work was normal. Another big thank you to God. The bone scan showed that vertebra L2, L3 and L4 were damaged somehow and an MRI was suggested. The report said it could be Degenerative Disc Disease. Hmmm. Not sure why she'd have that. She is 13. However it does explain the back pain. It also showed a problem with both ankles. No clue what that is about either. Her knees didn't show anything and they hurt way more than her ankles. Sooo...that's all I know until I talk to the doctor after Christmas. I am really afraid this is all just a bunch of complications from the Lupron. She is off it again, but it is some really harsh stuff. I just want whatever they find to be treatable so my baby will feel better. She is such a good girl and handles it all very well, but she shouldn't have to live in pain. I'd gladly take it on myself so she could be pain free for once in her life, but unfortunately it doesn't work that way.

Thanks for your prayers! I will keep you updated as I find out more.