New here, how do you handle the wait?

miranda040

Hi, I am new to this board. My 16 month old daughter has had a few seizures over the past few weeks. We had to take her to the ER for one that lasted 15 minutes and was accompanied by a very high fever. The others were not as long nor did they happen with any illness or fever. The pediatrician sent us for an MRI and EEG and both came back normal. We have now been referred to a pediatric neurologist. We are still waiting to get an appointment scheduled. I feel lost because it is taking such a long time to get things accomplished. I know every parent wants things to move quickly, but  how do  you cope with the waiting? I haven't slept well since all this started because I am terrified of another seizure occurring while she is sleeping. Please tell me it gets easier. Being in Limbo sucks!

 

gimmietimmies

The only answer I've got is you just do. I finally learned to let go of things I had no control over, since worrying didn't change the outcome. That, and we spent so much time at the hospital that it seems expected for things to take forever and I get shocked when things move quickly.

kcisthebombdotcom

Welcome. I also have a little girl that has seizures. She had her first one about two months ago (that we knew of anyway as her staring spells were actually seizures).

unfortunately I can't give you much hope of the fear subsiding anytime soon or the impatience of everything taking so long. You can't do anything but just cope. Some days are better Than others. Like everything else it will get easier with time. 

ally81698

Since this is new to you, it's easier said than done, but you just have to believe in yourself that you are doing everything you possibly can be doing in order to make things better.  We just found out that my DD has seizures while she's sleeping as well as "undetectable" ones while she's awake.  Very scary since we can't tell they are happening.  If I were you, I would find another pedi neuro that will take you quickly.  Explain to them that your DD is not currently being treated by a neuro and that you need an appointment asap.  Once you have that appt, it shouldn't take long to get another EEG scheduled.  They will probably recommend a video 48-hour EEG, which will give them better insights.  Is she on meds to control the seizures?

meldoo2002

Ours has gotten better, but waiting is SOOO hard.  Both my boys started having seizures after they turned 3.  Joey 4 days after, Nathan 3 years 6 months.  The past year was really tough with appointments, EEGs, MRIs, more seizures, medications/changes, etc.  They both had a number of seizures and medication changes over a few months.  It was really hard.  They only occur when they are sleeping, but sometimes at nap, sometimes at bed so leaving them with anyone made me very uncomfortable... you never knew when it would happen (obviously).  We have video monitors set up on them when they sleep now that we can see from our phones even if we are out of the house.  As time has passed I worry a little less and have stopped checking on them non-stop ... Joey (knock on wood) hasn't had a seizure in almost a year and Nathan in 7 months so yes it's been better.   Does the fear go away... no.  But it's not controlling my life like it was a year ago.