2 Questions


#1

My son Yonatan is 2 years old with C-ACC. He is developing great in everyway. I have 2 questions for everyone:

  1. Does anyone think thst sleeping issues have anything to do with ACC? My son has not slept through the night since the day he was born, always wakes up 1-2 times per night for no reason and has a hard time falling back asleep after that. I am going to see a specialist on June 18 about that.
  2. Breath Holding Spells: I know they are associated with Anemia and Lack of sleep but it also has alot to do with the brain function so I wonder if again, it has anything to do with ACC. My son has several episodes per month - not a fun thing to watch but he does not control it.

I am just trying to reach to other parents and individuals and see if there is anything new we can learn.

Thanks :o)

Rinat
(Mother of Yonatan, C-ACC)
South Florida


#2

Hi Rinat,

About C-ACC and sleep issues being related, I cannot say 100%. In my almost
9 month old daughters case (also C-ACC) she has slept through the night
since she was 2 weeks old, BUT she suffers of Central and Obstructive apnea
this is when their breathing patterns are interrupted in their sleep that
can cause them to wake up from their sleep. Central apnea is when the brain
doesn’t send the signal to breath so the child might skip a few breaths
therefore the breathing pattern is interrupted and causes discomfort,
obstructive apnea is when there is something physically obstructing the air
ways it can be excessive mucus, or saliva or something similar.

About the “Breath Holding Spells”… I get really touchy when it comes to
this, one because my daughter started having these episodes that BACK THEN
they called BREATH HOLDING SPELLS or TEMPER TANTRUMS and… “listen
carefully” NOW they call them A.L.T.E APPARENT LIFE THREATENING EVENTS. Let
me describe her episodes a little so you can judge for yourself if they are
similar, Brianna my daughter would grasp for air (yes these would be
triggered by crying) she would cry so hard she couldn’t catch her breath so
you would see her grasp for air, not make it, turn colors, from light blue
to purple to almost black… it seemed impossible for her to catch her
breath, and “sometimes” would faint from the lack of oxygen to her brain…
EVERY DOCTOR and EVERY NURSE would tell me that it was breath holding spells
and that they are common in children 6 months to 3 years… I wanted to
believe them… but I DID NOT, I kept taking her back to the hospital when
they started coming more frequently up to 6 times in a day. I video taped
the doctors letting her have an episode, video taped their faces, my baby
having this episode, and asked them on video "You’re telling me that my
child is deliberately holding her breath because she is “mad” until she
passes out? He did not answer me on video… the next day he started running
more tests on her… they did an upper GI/ swallow study test which showed
that my daughter had been aspirating her formula into her lungs (very small
amounts) with every bottle SINCE BIRTH… and because of C-ACC her esophagus
was too weak to notice so it didn’t bother her like it would you and I if we
accidentally get liquids into our lungs we would choke or cough… she did
not so this was slowly damaging her lungs which caused her to not be able to
catch breath when she cried… So never again did I hear it was breath
holding spells, now my daughter suffers of “apparent life threatening
events”. Something to keep in mind, because these episodes are very scary to
watch for a parent. Just look into these spells a little more make sure
there is nothing more to it, my daughter now has a feeding tube because of
this. By the way… YES it is possible for your child to just be having
breath holding spells, and YES a lot of children do have breath holding
spells… but when your child has a brain condition as ours do… don’t take
it lightly it could be something related to C-ACC. Best wishes to you, hugs
to Yonatan.

Thanks,

Araceli Sandoval
9 month old Brianna’s Mommy
Complete Agenesis of the Corpus Callosum Chromosome abnormality Intestine
Mal-rotation (corrected) G-Tube/Feeding Tube Severe Constipation Reflux ALTE
episodes (Apparent life threatening events) stops breathing and faints
developmentally delayed approx 3-4 months
Central and Obstructive Apnea

-----Original Message-----
From: yonidani06 [mailto:agenesiscc-cpt9329@lists.careplace.com]
Sent: Friday, June 06, 2008 4:50 AM
To: asandoval@shaxon.com
Subject: [agenesiscc] 2 Questions


#3

My daughter Ella has pretty much never slept through the night. She is now 14 mo and it is just killing me. She will wake up anywhere from 2-5 times throughout the night. Mostly we just have to put her pacifier back in her mouth and she’ll go back to sleep but it is just so hard on me. We have started giving her melatonin and for a while we felt it was helping (only waking up 1-2 times rather than 4-5) but now she hasn’t been doing so well again.

If anyone has any advice it would be great! I can’t imagine continuing on like this.


#4

It took my Rafi until he was almost 10 to sleep through the night. He has a combination of excessively deep sleep when he does sleep and irregular waking. He had a sleep study and the doctor claimed even though he was awake from 1-5 am there was no problem, that he was fine. This was 3 yrs ago. I would definitely have this checked out.

About “breath holding,” Rafi is also prone to drops in his heart rate associated with low oxygen saturation in his blood and vomiting. Initially some docs told us that this had to be seizures, but it appears it is more related to migraine. We are still trying to figure out what is going on (some possibility there could be a metabolic or a mitrochondrial disorder) in order to prevent these events instead of treating them. Interestingly, if you can get him mad and his adreniline goes up that stops them.

Jane in MN


#5

I don’t know about the breath holding. I’ve experienced the sleep issues though.

My son was a very difficult sleeper fo a long time. He was 10 months old before I could even put him down to sleep. Up until then he slept next to me nursing all night and waking me several times. Or he’d sleep in the sling while I did the household chores, that was his naptime. LOL

When he was 10 months old I read the No Cry Sleep Solution by Pantley (she has a toddler book as well I’ve heard) and I started to be able to lay him down for 15-45 minutes before he’d wake up. Eventually he started making it for longer stretches, and would even go back to sleep on his own without fully waking during phases of light sleep.

He’ll be three next month, and while his sleep is still different than it was with my first, it’s much better. He usually wakes in the early morning, we bring him in with us, and he goes right back to sleep until it’s time to get up.

I found that a good snack before bed was helpful, we give him oatmeal or applesauce with flaxseed or extra virgin coconut oil mixed in. The best nights of sleep he’s had were after days full of vestibular stimulation and fresh air. He also improved immediately with a heavy knit blanket and I’m planning to buy one with weights.