Luke's Tuberous Sclerosis Page
Megan's Story |
 My daughter Megan was diagnosed at birth with TS, because she went blue at birth. They feel that she had a seizure about 20 seconds after birth and since her body wasn't ready for the outside world yet.. she stopped breathing and went blue. They were able to revive her very quickly but after about 15 minutes she had a seizure and that is how this all started. We live in California in Scotts Valley near Santa Cruz and for some strange reason I decided to have my daughter in a level 3 hospital "just in case" and it proved to be the best decision I ever made. My pregnancy was very uneventful and there was no reason to believe anything was wrong with the baby girl I was carrying. My labor with Megan was much easier than that of my son Jordan who is now 8 years old. Megan was born with 4 tubers; 3 in her heart and one in her brain in the left frontal lobe. The 3 in her heart have not been giving her any trouble and they appear to be shrinking already. She visits her cardiologist every three months and they measure them for size and hopefully they will continue to shrink until they are gone. The tuber in her brain was causing her a lot of trouble and she did not actually come home from the hosptial until she was 6 weeks old. At the hospital they put her on Phenobarbitol, Dylantin, Klonopin and Tegretol. It was the combination of the Phenobarb and the Tegretol which got her seizures under control which allowed us to take her home. Megan remained seizure free for about 3 weeks but then had breakthrough seizures and has been having them every sense.. We had heard about Vigabatrin from our Neurologist and went about getting some, so now she is on a combination of all three medications. Megan was having approximately 20-30 seizures daily. Cognatively she seems to be doing fine, but her motor development is suffering from all of the seizure activity and the high medications. When Megan was still in the hospital we were approached with the concept of surgery, and at that time we were completely against the idea. We wanted to give the other approaches a chance before doing something so drastic. After 3 months of uncontrolled seizures (20-30 daily) we wanted to entertain the idea of surgery more seriously. We met with another Neurologist at Stanford who had been providing guideance to Megan's treatments and along with he and Megan's primary Neurologist we all decided that surgery was Megan's only hope for a somewhat normal life. We were not sure if the surgery would happen at Stanford or UCSF but it was later decided to go to the Lucille Salter Children's Hospital at Stanford. There we met her Neurosurgeon and started preparations for surgery. It was probably the most frightening, nervous, up and down emotional roller coaster ride of mine and my husbands life. I had thoughts of the worst happening and I just wanted to get the whole thing over with.. when ever I was unsure if we were doing the right thing and Megan would have a seizure.. then I knew we were doing right by her. As her parents we needed to give her this chance - even if it only meant a chance of fewer seizures. Her Brain surgery was on March 11, 1998 at Stanford. Her surgery lasted 6 hours and handing my little 7 month old baby over to those doctors was the hardest thing I ever had to do. The nurse practitioner came out hourly to give us updates on the surgery - which actually helped my state of mind. Not only were they doing the resection of the tuber, but they were also doing the cortical monitoring which her Neurologiest was taking care of.. and aparently they were able to get the entire tuber. They said it was about the size of a large marble but smaller than a golf ball. Megan's recovery to date has been tremendous ! She was only in the hospital for 5 days and I have only seen one episode which I thought might be a seizure, but they are still not sure. She took all of her medications by mouth the night of her surgery and the next day she was drinking milk out of a bottle.. 9 ounces for her first feeding. She had some swelling near the eyes and of course still has the scar but continues to improve daily. Just in Taylor's story.. it seems like Megan has come out of a cloud that she was in. Megan's awareness was the first thing we noticed right away because she is still on all of the same medications. We had no idea that the seizures were having that large of an impact on her awareness - because she seemed to act as though they didn't bother her. Most of her seizures were only lasting 1-2 minutes. (focal seizures) We know that we are not out of the woods yet. Megan still has to recover fully from her surgery which they feel takes about 6-8 weeks. Then she will have to go in for a repeat MRI and a EEG which will be probably sometime in May 1998. I personally am just very happy that I still have my daughter and that she is doing better than we were told just after she was born. I know that each day will bring something new to us.. I just want to do right by Megan and give her every opportunity available. We pray every day that she won't get any other tubers, but if she does we will deal with them as they come. We don't know what caused the disease. We are now suspecting that my son Jordan who is 8 may also carry the disease because he has the skin lesions and a small rash on his cheeks but at this stage we are not testing him - for emotional reasons.. he got very scared after her birth so we will wait to test him when we all go in for the genetics testing. I am pretty sure I am the carrier but have no symtoms to my knowledge. Our family as with all other families affected with the disease are just waiting patiently for a cure.. Tamera, Tim, Jordan and Megan If you wish to reply to this, please do so to Megan's mom, you can e-mail her at xxxx This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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