Epilepsy? Breath Holding Spells?

[Rachel_Mamaof2]

We took Audrey, our almost 2 year old toddler, to her neurologist appointment, and I gave her a brief description of what happened (I'm afraid I was nervous and I don't think I had all the details :*( ), and right after her physical exam of Audrey, she said Audrey is having breath holding spells, not epilepsy.  

I said, "I know you're the expert, and I respect your diagnosis, but I have to say that what I saw did not look like breath holding spells, and that she for sure was not holding her breath the second time.  She told me that children don't have to hold their breath to have breath holding spells.  She didn't explain it any further, but she went on to say that the only thing we can do is give her iron supplements if she's anemic, and do an EKG incase she has an abnormal heart rythmn.  I asked about an EEG just to be sure about things, and she said that even if the EEG was abnormal she would not change her diagnosis or treatment plan, and that if she had any more episodes just lay her down and not worry.

HERE'S A LINK TO AUDREY'S STORY:

http://www.medhelp.org/posts/show/614299?personal_page_id=151503&post_id=post_3349310

So now I am at a loss on what to do.  Her primary doctor said epilpesy, she said the breath holding spells, and the research I've done on the matter does not confirm one or the other.  I know I'm not 100% comfortable with the breath holding spell diagnosis, but I'm not the expert.  

With what I've read, the Pallid Breath Holding Spells sounds similary, but has some differences.  Like, She didn't go limp and then seize...she seized right away.  Her coloring didnt' change until after the seizure.  

My feeling is that I'm being brushed off because the seizures were mild...but then part of me really wants to believe the doctor...after all, she is the expert.  

I come to you pleading to know your opinion.  What should I do?  Has anyone ever had the same problem?  

I guess I just want to make sure we have the right diagnosis.  With my first daughter, it took 9 months and several hospitalizations for us to finally get an answer on what was wrong with her....Turner Syndrome...I KNEW something was wrong, and I truly was just being brushed off by seveal doctors until someone HAD to take it seriously because she was on the verge of death.  Perhaps that is clouding my view of the sitation though.  I don't know.

So that is why I am in desparate need of some advice, and  I welcome an input.  

[nagazwife]

I know this was over a month ago, but I want to let you know that my daughter has the same symtpoms and I'm almost positive they are pallid breath holding spells.  It's ONLY in response to a painful stimulus (usually a really hard bonk on the head), and if I blow in her mouth at the very first, it'll almost force her to take that breath in and can avert a spell.  When she breathes in after this, it's very long and sounds like she had been trying to do it forever.  It's very scary for her, I can tell.  

The first time it ever happend she was 14 mos and was running around and her cousin came and slammed into her from behind and she whacked her head on the hardwood.  She cried out, but did not breathe in.  Then she arched her back, her eyes rolled into her head and she started to have myoclonic jerks.  It happened for a long while.  I don't know how long and in retrospect, it could have been very short.  By the time the paramedics where there she had stopped jerking but was very listless and pale.  Very pale.  By the time we had transported her to the ER, though, she was mad and screaming.  By the time they got her off the backboard and let me hold her, she fell asleep.  

Ever since that first episode, we've tried very hard to prevent that.  Abby doesn't really go "limp" perse, but she doesn't move...or she starts to tense up and arch.

We've ruled out seizures, though, mostly because she has no post-ictal phase and she has never had an issue with incontinance during or after the episode.

Hope this helps you some.

[Bhupinder Kaur, MD]

Hello,

As I had earlier also told you,the symptoms that you are describing don’t exactly fit in the criteria of a breath holding spell.Either it is a seizure or a seizure due to epileptic foci due to subdural hematoma.

A seizure occurs when the brain functions abnormally, resulting in a change in movement, attention, or level of awareness.What you are describing can be a generalized seizure.You need to get an EEG or CT or MRI brain done so as to rule it out.

You can log on to the following website to gain more information about generalized seizures: http://www.emedicinehealth.com/seizures_in_children/article_em.htm

I advise you to take a second opinion from a pediatric neurologist and get seizures ruled out.
Hope it helps.Take care and pls do keep me posted on how Audrey is doing.