Post by Deleted on Mar 22, 2017 11:50:15 GMT -5
Hi there!
I havent been around in a long time on any of the boards, basically due to life just being plain busy. Hope all is well with all of you! I'm having a tough time and in need of a good vent right now...and some support from people who get it.
I have a 4yo son dx'd with epilepsy, SPD, and mixed developmental delay. Original dx was developmental coordination disorder, but then he started having seizures. So after the epilepsy dx, the DCD dx kind of became null and void. But other than seizures, he has a speech delay as well as fine/gross motor delays, and definite sensory differences (hes a sensory seeker). We've had an eval done by his developmental pedi who has concluded that he's not on the autism spectrum, which i guess is how we got stuck with a mixed dev delay label.
He's on Keppra (500mg 2x/day) for the epilepsy (along with 100mg b6), which was going pretty well up until last week when he had his first breakthrough seizure since initial dx in june of last year. They upped his meds, so that combined with the after effects of a seizure have left us dealing with some awful behavioral stuff. Meltdowns (not constant, but when they happen they can be intense sometimes), inattention, even more sensory seeking, and pretty damn oppositional most of the time. Shits been tough. We've been in close contact with the neuro, his teacher at the preschool, as well as his slp, ot and pt. I went to a school function today and left almost in tears. He was all over the place. Couldnt attend to the activities with his peers, couldnt sit still for more than a minute or 2, bumping into people, running down the hallway, etc. I feel horrible. I feel like my kid is "that kid". His medical team and school team have been wonderful with him, but i still cant help but feel horrible seeing him struggle. Its difficult to distinguish whats a developmental phase, a side effect of an irritable brain from the seizure, or a med side effect. Im not quite sure if i should ride this out a while, since maybe hes still acclimating to the med increase, or if i should get him an appt with the neuro or developmental pedi to discuss this and other options.
Sorry if I'm rambling. Guess i needed to just put my thoughts somewhere. This sucks. I feel pretty damn stuck and unsure whether I'm making the right decisions right now. My heart breaks for my kid, seeing him struggle. My heart also breaks for my 2yo who gets put on the back burner bc im busy dealing with my SNs 4yo. Does this ever get easier?
I havent been around in a long time on any of the boards, basically due to life just being plain busy. Hope all is well with all of you! I'm having a tough time and in need of a good vent right now...and some support from people who get it.
I have a 4yo son dx'd with epilepsy, SPD, and mixed developmental delay. Original dx was developmental coordination disorder, but then he started having seizures. So after the epilepsy dx, the DCD dx kind of became null and void. But other than seizures, he has a speech delay as well as fine/gross motor delays, and definite sensory differences (hes a sensory seeker). We've had an eval done by his developmental pedi who has concluded that he's not on the autism spectrum, which i guess is how we got stuck with a mixed dev delay label.
He's on Keppra (500mg 2x/day) for the epilepsy (along with 100mg b6), which was going pretty well up until last week when he had his first breakthrough seizure since initial dx in june of last year. They upped his meds, so that combined with the after effects of a seizure have left us dealing with some awful behavioral stuff. Meltdowns (not constant, but when they happen they can be intense sometimes), inattention, even more sensory seeking, and pretty damn oppositional most of the time. Shits been tough. We've been in close contact with the neuro, his teacher at the preschool, as well as his slp, ot and pt. I went to a school function today and left almost in tears. He was all over the place. Couldnt attend to the activities with his peers, couldnt sit still for more than a minute or 2, bumping into people, running down the hallway, etc. I feel horrible. I feel like my kid is "that kid". His medical team and school team have been wonderful with him, but i still cant help but feel horrible seeing him struggle. Its difficult to distinguish whats a developmental phase, a side effect of an irritable brain from the seizure, or a med side effect. Im not quite sure if i should ride this out a while, since maybe hes still acclimating to the med increase, or if i should get him an appt with the neuro or developmental pedi to discuss this and other options.
Sorry if I'm rambling. Guess i needed to just put my thoughts somewhere. This sucks. I feel pretty damn stuck and unsure whether I'm making the right decisions right now. My heart breaks for my kid, seeing him struggle. My heart also breaks for my 2yo who gets put on the back burner bc im busy dealing with my SNs 4yo. Does this ever get easier?
