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First post - CSA suspected, 19 month old, upcoming slp stdy

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Joined: Fri Jan 06, 2012 12:57 am
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Fri Jan 06, 2012 1:15 am Post
Hi All,
This is my first post, but I have been reading and reading. I have a 19 month old (my 3rd child). She has been a mess since birth and had been diagnosed and stamped with a lot. She was a full term, 8lb 7oz healthy kiddo. She slept well for 3-4 months. By 3 months she had a mess of what seemed to be GI related symptoms. I could write a book on the next year, but it was so many drs, 2 out of state visits, 5 general anesthesias, scopes, biopsies, removal of all food except prescription amino acid formula, diagnosis of reflux then retracted with negative ph probe, diagnosis of eosinophilic esophigitis which they are now thinking is not accurate.

When she was 16 months we spent a week at a GI clinic in Colorado. At the end the GI said we should see a neuro. From 4 months through now (19 months) our daughter's sleep has been off the charts horrid. She wakes every 5 min to hour, all night. They kept telling us it was GI related, but her scopes are now clean and they this it is unrelated. She wakes screaming horribly. We have tried everything. She went through stages of waking and screaming and thrashing. We worked with an OT that threw up her hands. Then they said it was sensory related. But it isn't. Something is causing a fast and violent waking, constantly. She does not snore or breath loudly. It is not reflux. It is not GI. Her development has been in spurts, due to her health stuff, but she is currently all caught up and right where she needs to be. She is far ahead as far as motor skills for a 19 month old. She has some weird things...one eye occasionally tracks funny, she goes through spurts of head banging, sometimes she puts her head in her hands and says OW. But then she will go a week or two without anything but the sleep issues.

Our ped finally referred us to neuro and has requested a sleep study, as she wondering about central sleep apnea. I have been googling and some things I read sound like it, and some make me thing it isn't.

Anyone have any input? Do these sound like CSA symptoms?

Many thanks,
Joanna
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Re: First post - CSA suspected, 19 month old, upcoming slp s

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Fri Jan 06, 2012 3:01 am Post
((HUGS)) That's a lot to cope with, especially with two additional children...

I wouldn't immediately think CSA, but you will probably get some valuable information from the sleep study regardless -- it may, however, not be what is expected, so be sure to get a hard copy of the complete results from the study. There is an enormous amount of information contained in a sleep study, but not very many physicians are skilled at puzzling together results that do not fit into the typical presentation.

I'm glad you've been referred to a neurologist. That, and the sleep study, are excellent next steps.

When you say the OT "threw up her hands" what does that mean? How long was your daughter in OT? Was she believed to be a sensory seeker or avoider?
Was the pH probe an Impedance Probe? Did it show no reflux, or just no acidic reflux?

My son woke every 10-60 minutes for over a year, and then every 1-2 hours until he was over three years old (he's four now). We thought it was all due to his reflux, but that proved (eventually) to be mostly unrelated to his nighttime arousals/awakenings. Then we identified his sensory issues, and got some great help with that, but that didn't fully resolve the sleep issues, either. Then I read "Trauma Through a Child's Eyes" by Peter A Levine and Maggie Kline, and most of the puzzle pieces came together. He had PTSD from the combination of medical trauma and sensory sensitivity. We have been working with him for about nine months with the somatic experiencing techniques Dr. Levine developed and the change has been completely miraculous -- not just with sleep, but with so many aspects of his life. Now, as he approaches five, we are seeing that he also probably has Asperger's Syndrome/Autism Spectrum Disorder -- or at least a remarkable number of similar behaviors -- and that, too, is associated with truly horrible sleep patterns. The beautiful gift in discovering the relationship between SPD and PTSD with him has been that, much of what we have been doing to work with those issues have given him a huge head start in dealing with many aspects of AS/ASD I don't know if our experience will prove anything like yours, but, at a minimum, I definitely understand life with that kind of sleep disruption ( many, many ((HUGS)) to you and your family), and I would be happy to talk more with you about anything from my son's experience if you think it might apply to or be useful knowledge in relations to your daughter's experience. I cannot recommend highly enough, regardless, the Peter Levine book, as it is applicable for all parents and is, in my opinion, invaluable for parents of children who have undergone a lot of medical interventions.

Please keep us posted as your quest continues.


Re: First post - CSA suspected, 19 month old, upcoming slp s

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Fri Jan 06, 2012 11:40 am Post
Thank you for the reply! I agree, that we will learn something regardless, from the sleep study.

When we spent our last week in Denver at the eosinophilic disease clinic, the did a "impedance and pH study", via the ng probe placed. It found no abnormal acid levels and no excessive reflux episodes. She has also been on a high dose PPI (several actually) since 4 weeks of age, none have helped. They also have medicated for and chased/tested for motility issues, and most every other GI issue. She has been on atarax, periactin, 2 antisposmotics, and some others. Nothing has touched her discomfort.

Every Dr looks at her nighttime videos, history and says...."wow, something really isn't right with your kid...and we have no idea what it is". One OT labeled her sensory seeking. One said avoider. Then changed her mind later. We have been doing OT and feeding therapy 1-3x weekly for months, including a lot of side work. My mom gut says it isn't a classic SPD issue. She is sensory sensitive when she feels bad. And when she doesn't feel as bad she couldn't care less.

I will definitely check out that book and hopefully learn something from a sleep study. :)
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