We have had a LONG journey so far and Braxton is only 20 months old! We have been to pediatricians, pediatric neuroligist, family practice doctors...everyone seems to have a different opinion but until you have a child that actually is suffering from breath holding spells or seizures that are related to breath holding spells....you just can't understand! I think this is a great place and I would love to discuss some things with some of you that have been going through this just to know I'm not alone!
My name is Mandi and I am the mother of 2 wonderful children. Kylee is 3 and Braxton is 20 months. Below is our story thus far:
A healthy baby boy with no complications at birth, we thought we were in for a typical road. At age 6 months Braxton started screaming one day after becoming angry and passed out!! I was distraught watching my baby PASS OUT at the age of 6 months…his lips turned blue and he literally passed out for a short time! Something was wrong with my baby!! I took him straight to the doctor and they told me it was nothing more than breath holding spells. After research and several more spells later I felt I could deal with that diagnosis. Shortly after we tried everything to curb the spell when we saw it happening, we would blow in his face/mouth, splash cold water in his face, try to distract him with toys/games, etc. and nothing worked!! The breath holding spells continued, sometimes 1-2 a day, sometimes only 3-4 a week. When he got hurt/injured they would occur and they were always more likely when he was overly tired or getting increasingly hungry.
In June of this year he bumped his head on the door frame of the bathroom and began to scream. We knew it was going to lead to a breath holding spell so we immediately laid him down in a safe location (which we have always been told to do because it gets blood to the extremities faster and ensures he will not harm himself during the spell ) but instead of passing out…he started convulsing/seizing…arms and legs were jerking, facial muscles were jerking, eyes wide open but expressionless. It was like he was starting but his eyes looked empty! I was on the phone with 911 in seconds and my husband immediately scooped him up and awaited instructions. When the ambulance arrived he had come to and they determined that it was likely due to a breath holding spell and he was probably hyperventilating. They didn’t take him to the hospital for evaluation, nobody assessed him at that time, but I followed up with my pediatrician and they said the same thing the EMT said, “since it occurred when he was angry and he has a history of breath holding spells, that was what it was!” In my heart I KNOW it was something more than that!
Since that time he has had 5-6 spells with seizure/convulsive activity. I finally got my pediatrician to refer us to a pediatric neurologist for a consult and we had an EEG conducted. During the EEG he fell asleep, did not have a breath holding spell and did not exhibit any “seizure activity.” His EEG is totally normal but I am not convinced! The other day I was finally able to get one of his seizures on video. This seizure lasted almost 4 minutes!! This is the first time I have ever seen one instead of being “in the moment!” I showed it to a family practice doctor that said it was a Tonic Clonic Seizure (Grand Mal).
After watching the video back I just sat and cried….I want my baby to be ok…I want my baby to be better…and I want answers…I want to know I’m doing the right thing for him…I want to be able to put him to bed at night and know he won’t have a deadly seizure and he’ll still be alive when I go get him in the morning!!! My husband and I are scared to death to discipline him, to put him to bed awake at night because he’ll scream, pass out and hit his head on his crib which MIGHT make him have a seizure…we’re scared and just want help and answers but we don’t know where to turn!! I don’t know where to start, I don’t know if they’re seizures or what’s going on. Once again…I would gladly take all of this away if it meant my baby could live everyday normal.
He will be 2 years old in February and still doesn’t talk…I’ve had him evaluated for speech and they can find nothing wrong but I cannot help but wonder if these breath holding spells/seizure activities have something to do with his delayed speech. What if all of these breath holding spells are causing irreparable damage to his brain, are the seizures causing irreparable damage?? We’re so concerned and NOBODY is giving us answers.
We just saw another neurologist that told us we can put him on an anti-depressant!!!!!! I CANNOT put my 1 year old on an anti depressant! He told us the anti-depressants could make him more irritable which could make him have more breath holding spells. This would probably lead to more seizure activity since all of his seizures are associated with his breath holding spells or injury!
Anybody have any advice or stories similar? I would love to be able to talk to some of you that have been through this or are going through this! As a parent you feel so helpless!
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