Research!
I am new here as well. My daughter has had epilepsy for 13 years. Although she is an adult now, and infant epilepsy can be a different ballgame, I strongly encourage you to research as many alternative approaches as you can find (within epilepsy forums like this one or those associated with other seizure disorders e.g. celiac disease). If you’re not doing it already, find every name of every "disease" that can cause infant seizures - google “infant seizures”. Search for those forums. Epilepsy can be a very long road with many obstacles and detours (primarily due to the mystery of the disease and side effects of drugs). Above all - don't rely only on doctors to give you all the answers and don't rely on drugs to solve all the problems.
I have spent many many hours researching for case history/testimonies as to what works to reduce seizures, more than just drugs. It’s obvious that many parents of seizure afflicted children are finding better ways to manage things than most doctors (in my opinion and assessment based on researching these forums): NUTRITION IS KEY! My daughter had all kinds of issues as a baby. And a gluten allergy. The doctor said she would grow out of it. It has taken me this long to connect some of the dots. I believe gluten is a significant trigger for her seizures now, and that it has always been a factor in our family’s health history.
I also believe ALLERGENS ARE KEY TRIGGERS and eliminating them is key to health. I also believe they are totally underestimated when it comes to how they effect every disease. Consider your baby's immune system. Consider allergens, toxins, nutrition, and do your research. Allergens cause inflammation which can become serious if one's immune system can't handle it. If the allergen isn't eliminated, continued exposure causes more inflammation and continues to spread to other organs... the brain is no exception. What is the threshold level? All bodies have a tipping point. I am certainly no doctor nor am I saying this is the case for you and yours, just consider some of these things. Add up your medical history, your parent's medical history, sibling’s, the dad’s history, etc. See if you can connect any dots.
A mother knows their child better than anyone. Pay attention to everyday symptoms e.g. rashes, stomach upset, fever, ear infections, etc. Keep a daily journal on diet, symptoms, treatment, etc. This is your child's medical history! Always ask yourself, could it be a reaction to something your baby ate? How long after the snack was the seizure? write it down ....chemicals/additives/soy/gluten? That may be an allergen clue. Our food chain is full of all kinds of stuff that builds up in our bodies and creates inflammation.... Do the research. Whatever is in one's body during pregnancy, the baby gets. Genes also play a role in immune deficiencies and disease. It’s all connected.
What I have found that is also alarming is that many people realize years after they were diagnosed, that it may not have even been epilepsy, after years of the drugs... and side effects... family upsets... dangers... etc. Just be careful. Search “infant seizures” in forums and you will get threads that talk about it. Read every comment you have time to read and when they post a link, check it out. You never know where the answers will come from.
There is so much to learn, but keep on keeping on. This forum seems to have a solid community for support and offers case history/testimonies as to what works for them, more than just drugs. I just can't say it enough though.... Research. And don't forget to take care of yourself! There's lots of alternatives for depression/emotions/worry/stress relief that do not have the side effects or dangers/dependencies found with brain/psychotic drugs. And please - don't forget to treat yourself to a massage once in a while. Relax. There is hope.
I encourage you to read this post and other comments, if you haven't already. I haven’t been in the forum long enough to add links, but the title of the sticky thread is: What I've Learned from E-Patients Print it out and give it to your doctor!
If you haven’t already, you might also want to check out the GARD diet for your own health. It’s not a diet in the traditional sense at all. It’s another good starting place for more research. It’s not up to doctors to find the answers, it’s up to you. Best wishes!
I'm trying not to get too excited about the idea that she won't have seizures as I know it is possible that they will start up over again.. We still don't know does she actually have epilepsy or is this just something that she will grow out of..early days still! It is also possible that if this is epilepsy that it will start up again later on.. I can only cope with this by being realistic and not living in too much hope.. at least then I won't feel so bad if they start up again!