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Does anyone's child have breath holding spells?

Posted by on Apr. 1, 2010 at 11:26 PM
  • 13 Replies

My son started having them at 9 moths old. His regular pediatrician diagnosed him with breath holding spells and told us it was a behavioral problem. We were not convinced, so we asked for a referral to Primary Children's Hospital so he could be evaluated by a pediatric neurologist.

After some tests, including an abnormal EEG (sharp, slow waves in the frontal lobe of his brain), they diagnosed them as seizures, but could not tell us the cause. They put him on Phenobarbetol, and he remained on the meds for 11 months. During that 11 months, we took him back for follow up check ups, and every other EEG they did was abnormal. He had 3 abnormal EEGs and two normal ones. During the first year since his first seizure, he averaged anywhere from 1 to 10 seizures a day, some mild and some severe. Seeing no change in the seizures, but much change in his personality from the meds, we took him back to his neurologist, and he agreed to take him off the meds. We spent a month weaning him off of the Phenobarb. 

After the first year, the frequency of the seizures decreased dramatically, but they got worse. Last year, around Thanksgiving, after months of not having one, he had a full blown seizure right in the middle of the mall. It was the worst one he had ever had, although not the first one where I had to breathe for him. A crowd of about 20 people witnessed him stop breathing, go into convulsions, and lie there unconcious and not breathing. Once it was over, I counted to 30, and performed rescue breathing on him. I had to breathe for him for nearly a minute before he started on his own. He started breathing right before the paramedics showed up.

The paramedics wanted to take him to the hospital, but I refused service and had to sign a waiver declining treatment for him. The paramedics were very snotty about it, but I politely told them that he was my son and unless they were going to pay another medical bill and ambulance bill in which we got no answers, I was taking my son home.

A very sweet couple witnessed the whole thing, and the gentleman said he was a first responder for the police department carried my bags to my car so I could carry my son. The lady was still crying, and I asked her if she was ok. The gentleman started asking questions about his seizure history, etc. and I told him that the Dr.'s originally diagnosed him with breath holding spells, and explained the rest of his history. He looked so sad, and he said, "That's what they said was wrong with our granddaughter." He said that she had the exact same kind of seizures that they just saw my son have, and that the last one she had put her into a coma for 8 weeks, then she slipped away. She was 3.  I was mortified.

Does anyone else go through this with their child? Does anyone know anything about them?

 

 

by on Apr. 1, 2010 at 11:26 PM
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Replies (1-10):
bubbles041
by on Apr. 1, 2010 at 11:29 PM

 Wow, I have no clue but I would be so scared. Im sorry this is happening to you and your son

Kadillac
by on Apr. 1, 2010 at 11:31 PM

He has not had one since November of last year, but after what that couple told me, I always wonder if the next one will be the last one. It's tough, and most of the time I don't think about it because he's so healthy and rambunctious, but I started thinking about it tonight after reading the post about the lady thinking her baby had died. But, thank you!

Quoting bubbles041:

 Wow, I have no clue but I would be so scared. Im sorry this is happening to you and your son


MixedCooke
by on Apr. 2, 2010 at 2:56 AM

Nope--chatterbox spells

queenamy
by on Apr. 2, 2010 at 3:00 AM

Please give me more detail on to how these breathing spells are.. like when does it happen, how long does it last, does his color change..what makes him snap out of it?

maxensmom
by on Apr. 2, 2010 at 3:03 AM

 oh my god... my sister had breath holding spells when she was a baby. i was young too so i don't remember much. i think she just grew out of it...

i really hope you find some answers and i'm so sorry you and your son have to go through this. the end bit gave me chills.

queenamy
by on Apr. 2, 2010 at 3:04 AM

My daughter had breathing issues along with seizures.. they never told us weather or not the breathing episodes were seziures or what.

She would be either playing, sleeping, awake.. anything and she would just stop breathing. she would have a few of these spells or episodes through out the day and would happen every two or three weeks.

We would have to breath for her and wait till she came out of it and breathed again which would be a few min.

The doctors told us that after loosing so much o2 her heart would get affected by it and eventually stop.

We never thought that day would happen.. not nearly anytime soon.

That day came.. she stopped breathing, her heart stopped and she passed away Nov 20 09, at 4yrs and 2months old.



Amy & Dago

 Parents to Nadia(RIP 09/05-11/09), Sasha, and expecting #3!


 Pregnancy Ticker

pinkmommy3
by on Apr. 2, 2010 at 3:07 AM

My daughter holds her breath when she gets upset but its nothing more than that. She stopped breathing and passed out once.. turned blue, but then started breathing again after she passed out.. but now I just blow in her face when she starts to hold her breath and it startles her into breathing again... the doctors wanted to do testing but it seems like its nothing more than literally just holding her breath.. Im sorry you are going through that though :( It seems like your childs case is much more than just breath holding. I hope you get answers. Good luck!

queenamy
by on Apr. 2, 2010 at 3:08 AM

I dont tell you this to scare you but to really let you know it's important they run more testing on your son. It would even help you if you could get a pulsoxymetrie (measure his o2 and heartrate.. it alarms if it goes too low or heartrate too high, etc)

Kadillac
by on Apr. 2, 2010 at 3:11 AM

Usually some kind of stressor triggers it. Sometimes he is crying or throwing a fit or has gotten hurt, and other times he will just whimper right before one. Like, his last one, we had been walking for a while, and he whimpered and asked me to carry him because his legs didn't want to work anymore. Then, he just went down. He stops breathing first, turns blue, then his eyes roll back and his back arches and his arms and legs go stiff, and his wrists curl in. He doesn't have convulsions, persay, like shaking, but it's more like writhing around. Most of the time, he pees his pants during it. When it's over, he usually groans, his eyes roll around, and he starts breathing shallowly again and his body slowly relaxes. He usually starts crying once it's totally over, and goes to sleep for hours. If we don't let him go to sleep, he is groggy, confused, disoriented, walks like he's drunk and doesn't function right. The last one, he didn't start breathing after his body relaxed, and he went from blue to deathly pale, almost transparent on his lips and fingertips. Sometimes he gets sick and pukes afterwards. Nothing snaps him out of it....we've tried blowing in his face, sprinkling water on his face, smacking his cheeks, sternum rub....

Quoting queenamy:

Please give me more detail on to how these breathing spells are.. like when does it happen, how long does it last, does his color change..what makes him snap out of it?

 

kaileymom79
by on Apr. 2, 2010 at 3:18 AM

My nephew has this. he was also diagnosed at 9 months old with breath holding spells.  Now diagnosed with epilepsy. 

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