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Parenting after a Loss
9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
For the newer PAL members, about my son if you ever wondered...
Lovesinthehouse on SAL mentioned in a previous post that she didn't know what the acronyms in my siggy stand for. I just realized that maybe you guys wouldn't know his story, even though most of the ladies with older babes on PAL are pretty well aquainted with it. The acronyms stand for Tuberous Sclerosis Complex and Infantile Spasms.
Tuberous Sclerosis is a genetic mutation that causes tumors to grow in his organs. Most commonly in the skin and brain. He has numerous white skin spots and small bumpy tumors, not really ugly, just there. And he has about 30+ poppyseed sized tumors in his brain which cause several different issues. He has developmental delays and multiple daily seizures. He also has a few larger tumors that may grow at some point and block his cerebral spinal fluid causing encephaly. We have had 4, soon to be 5 MRIs, a PET and CT scan in his short life. We have had more than 10 EEGs, and 3 hospital stays, one for a 37 hour EEG, and another for a 72 hour EEG. The third hospital stay was to learn how to inject him wih ACTH a human growth hormone that is supposed to control Infantile Spasms. It didn't work. We are still currently searching for the right combination of meds to control both his IS and his focal seizues.
He has had several types of seizures since they began when he was 1 month old. The most serious of these are the Infantile Spasms, which are associated with a regression of skills..meaning that a baby who has learned to sit, roll over, crawl, etc, will suddenly forget how to do these things. So far, luckily for us, he has had IS for 8 of his 13 months, and we have escaped a true regression, at least in the gross motor skills. There is no cure for TSC, and the only option is to treat the symptoms. In his case, the seizures. We have tried and discarded about 5-7 different anti-seizure meds as ineffective, and he is currently on 3 different anti-seizure meds, for which we are attempting to find the correct dosage to gain control of the seizures. Every week we change the dosage or add a new drug, and every single week our hopes are raised, and then dashed as he continues to seize.
Most recently, there is some concern of a tumor is his heart causing runs of premature ventricular contractions, for which we are doing a Holter monitor study later this week.
Development-wise, he is pretty much on time with his gross motor skills, but is behind in his fine motor skills, and significantly delayed in his speech skills. We count our blessings everyday that he is not worse off than he is, but it is so hard to see others his same age, leaping ahead and learning new things so quickly, when each day can be such a struggle for Linc.
Thanks for reading & caring!
9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wksThis discussion has been closed.
Re: For the newer PAL members, about my son if you ever wondered...
I actually didn't know the full story either. Linc is such a beautiful boy, and I celebrate every one of his accomplishments with you! He has one of the best smiles I've seen on these boards!
I will continue to hope for a new solution for Linc.
#2 & #3 Due 8/25/12
Surgery for ectopic pregnancy June 3, 2008
******
BFP #2 September 25, 2008
Baby boy born June 4, 2009 at 40 weeks
8 pounds 13 ounces and 23 inches
******
BFP #3 February 6, 2011
First U/S February 25, 2011 = TWINS!!!
Boy/girl twins born October 4, 2011
(read it. you know you want to.)
anderson . september 2008
vivian . february 2010
mabel . august 2012
You and Linc are often in my prayers. You really are an incredible mama with an amazing little boy.
On an unrelated note....look at your ticker creeping up!!! Continued good thoughts for your pregnancy!
this, we love kinc.
umm, yeah - time for me to go to bed... we love LINC!
Thanks so much for sharing that. I didn't know the full story either. You are your husband are fantastic parents to Linc! He is such a lucky boy to have parents like you. He is soooo sweet and simply adorable!
Thanks for sharing
I will keep you all in my prayers! Big hugs