Epilepsy. I remember wondering what I would do if someone I loved had a seizure. I think this was in college when I was reading about what a seizure was and the different types. I know I never thought I would get to know so much about seizures. I have never found a statistic but I do know that in many different places there is a fact alluded to (so perhaps it is not a fact but more of a theory or hypothesis) that seizures are more common in FASD (Fetal Alcohol Spectrum Disorder) people. I certainly know that they are common in our house. Of our 9 children, 4 have epilepsy. Two of them have intractable epilepsy (or epilepsy that is not controlled by medication). The one with the most issues is doodlebug. I usually try to use doodle and baby J as my light hearted posts but honestly have to point out that these are 2 of my children who have multiple medical issues and they both have seizures. Doodle takes 3 different seizure meds. These can cause him severe nose bleeds (and knock on wood we have not had one in a while) and do make him very sleepy at times. He sleeps about 14 to 16 hours a day. However, on the days his seizures are bad he can miss most of the day.
I wish there was some magic to be able to tell what will set the seizures off but so far I have never found a pattern to any of my children’s seizures. I do know that temperature and stress for doodle definitely can have a negative impact. For baby A it seems to mainly be light invoked. For baby J it is only when his meds are low now and for KayKay it is the same. I just know that I hate to see how hard this added feature of FASD is for some of my children and know I am not alone.
Parenting the prenatally alcohol exposed child can come with many hurdles. A lot of them are behavioral but there are many medical issues also for these kids. Even my “healthy” children had constant ear infections. I know for a while we were on a first name basis with the ENT and had a child in for ear tubes almost monthly. Shellybell had 7 sets. Then there is the children affected by spasticity and rigidity (diagnosed with cerebral palsy). The issues with lungs, heart (bless the Lord none of mine have permanent heart issues), bones, joints, etc. The list can go on and in our home it does. Some children with FASD can have incredibly complex medical issues. I know that most of mine who have the serious medical issues were premature but not all of them were so it is not just due to them being born early. Alcohol is like a solvent and it can and does affect every part of the developing fetus. I usually talk a lot about the damage to the developing brain but want to point out that this is not the only organ affected.
When I initially read about FASD the only things really pointed out were the behavioral challenges but for a lot of parents they are also dealing with the medical challenges. Just like with the epilepsy I have 4 children who are dependent on G-tubes for nutrition. This can be due to swallowing issues (as it is with 2 of them) or it can be a general failure to thrive where they just literally don’t understand being hungry or the need to eat and would starve to death. It is just as important to provide support to others with the medical issues as the behavioral. I know for birth families the medical issues can bring out an enormous amount of grief and guilt and for the adoptive families at times it is an enormous amount of anger and grief. Watching a child suffer is never easy and so the need to have help with these emotions is extremely important. So let’s get past blame and shame and make sure to remember to support each other on this journey. While FASD is 100 % preventable and spreading the word for prevention is very important once the person is here let’s just provide a circle of support to make sure that we provide help along the way.