Febrile Seizures

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New, and not sure what I'm doing, but would like to get and give support.

Hi everyone,

I'm probably not your typical new member, as my son is now 23 years old, and doing well. I am not.

When he was born, he was diagnosed with a congenital heart defect, followed by hundreds of febrile seizures daily, C.P., and reactive airway disease. The breathing issues were the most life threatening. He (and I) spent 28 months briefly out but mostly in-patient, at CHKD hospital. The next 4 years saw us gradually home more than in-patient.

Immediately, it became evident to me that the doctors DO NOT know everything. There were so many mistakes made by his health team...

At 5 days of age, I was told by his neurologist ( who I later became very close to), that my child would "never walk, talk, say "mama", and would be in a vegetative state always, if he were to survive"

My son was given his last rites four times before he was 5 months old. I was told repeatedly that he would not survive overnight.

Only other parents that have gone through similiar can understand the devastation of this journey.

I am a veteran early childhood special education teacher. I have worked with profoundly disabled children. Until my son was born, I sometimes wondered why parents would choose to keep their extremely disabled child alive via medical intervention. After his birth, all I prayed for was that he just breathe. I get it now.

I was extremely lucky. My son surpassed all negative prognosis. He has grown to be physically healthy (although heart issues are still a concern), very intelligent, and is graduating from college, after being awarded an academic scholarship.

I know I won the lottery. He will be leaving home soon, to pursue his career/life.

The thought of him not being here, where I can take care of him is crippling. He is my whole life. I cannot sleep or eat. Although I try not to, my mind will not stop imagining all the horrible things that might happen to him.

Is this normal for a parent that has raised a medically fragile child?

My daughter is 6 years older and was always healthy. I do not have these issues with her being away from my sight.

I actually feel like I need mental health help to adjust to my son leaving the "nest".

Encouragement, insight, any connection to other parents would be greatly appreciated. I do not know how to navigate this site, but will learn.

If I can help anyone else with my educational, and life experiences, I would be honored to do so.

21 reactions 19 comments

Pregnancy Fears #Pregnancy #CPTSD #DissociativeIdentityDisorder

Hello everyone.

CW: medical, pregnancy, C-section, cPTSD, DID, trauma

I am struggling really hard right now. Normally I take CBD and Bupropin to help with my syptoms of cPTSD/DID. I just learned that I am about 4-5 weeks pregnant and while this is a good and planned for thing, I was not prepared for how hard the anxiety and pain would return when I stopped using CBD a few days ago, when I got a positive test.
I will not take an SSRI, I had a horrible experience with them a few years ago and other than "well, just try a bubble bath" I can't find many safe options. (Even the SSRIs come with higher chance of risk than CBD, which is interesting since they are deemed safe to take while pregnant) I am not asking for suggestions as I knoe this is not the appropriate place to ask for medical advice, I just really need to get this off my chest.

My first pregnancy and delivery were a complete nightmare. My doctor messed up and I wound up feeling everything during my emergency C-section (brought on by a seizure that happened because he put me on pitocin, knowing that I am prone to febrile seizures) and nerve damage in my back from their fumbled attempts to numb me. The excuse was that they proceeded as such due to me being Blackfoot (American Indian) and that I wouldn't feel it as much as other women due to my genetics. I doubt I have to tell most of you that's completely false, I feel pain just as much as a Black, White, Asian, or any other type of woman. So I am dealing with those anxieties added to the usual mix of cPTSD/DID symptoms.
I am very fortunate to have an amazing partner who is so supportive and loving. He's doing everything he can and our older kiddo is 11 now, I refuse to burden them with all this, but they realize I am not 100% right now and are also being incredibly wonderful and helpful. I also have my service pitty Nike who never leaves my side and is laying with me and keeping me somewhat calm as I write this.
I cannot turn to my parents or other family, we don't talk as they are the reason for my brain damage, chronic pain and cPTSD/DID.
We already love this baby and want them so much, I just wish I knew how to better manage my symptoms. I have made an extra appointment with my psychiatrist to see if they can help.
Thank you all so much for taking the time to read this. I appreciate y'all and everything I've been able to learn and share here.