Posted By Posting
Aug 30, 2010
dcd
Info about Sleep Studies?
I would love some info about sleep studies. Kylie has been on the Nutramigen for 2 weeks+1 day and the Prevacid via Buffer Babies for a little over a week. I think she is improved overall, but she is still sleeping terribly, up 3-5 times a night. Last night was absolutely awful as she was up every hour if not more. I don't know what's going on with her - I can't tell if she's having pain or if the waking has become a habit. Sometimes it seems like she's in pain or is uncomfortable; sometimes it just seems like she's complaining and restless. If she is having pain, I'm not sure if it's the reflux or something else.

1. What does a sleep study entail, exactly? 2. How do you get a sleep study done? Does your doctor have to order one? Would that be her family doctor or our GI? 3. Are these studies done at the hospital or at home? 4. What symptoms would have to be present before a doctor would order the study? I don't think she has apnea but I think it's possible she could be aspirating a little since she does have a nagging nighttime cough which has become junky-sounding. Would a doctor order a study based on this and the fact that she's struggled with reflux and is continuing to wake up so often, or would there need to be other factors in play? If so, what? 5. Are these studies covered by insurance? If not, about how much do they cost? 6. What would the sleep study be able to tell us? Is there a better way to find out what the sleep disturbance is all about?

She has not had a probe placed. Not only am I not crazy about doing that, but I can't imagine how that would even work for us. She was crawling before she turned 6 months old and is the busiest baby I have ever seen. How would it ever stay in?

Thanks for any feedback...

Aug 30, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We have not had a sleep study so someone will chime in on that I'm sure.

As far as keeping a probe in, Jedd had an NG tube for 8.5 months so it is possible to keep those tubes in place. The nurses are very knowledgeable about how to keep them taped just right. And, if a child won't keep their fingers away, they will use "no nos" to keep the child from being able to bend their elbows for a time.

Have you tried getting a dose for Mylanta and giving that at the night time wakening and see if it helps at all? Just another idea to help sleep time go smoother.

I would think that over time, if you are seeing improvements already, the improvements will continue to get better, even the sleep time will.

Aug 30, 2010
haylee bug
Mother of a reflux baby
sleep info
I'm not sure where you live, but I live near St. Louis; therefore, we are fortunate to have St. Louis Children's Hospital within 45 minutes of our house. They do have a nurse line that is available 24 hrs a day/7 days a week who are answer questions. If you want to give them a call just for advise their toll free line is 800-875-0679. I have never had a sleep study for my daughter, have thought about it many times as she is a RESTLESS little sleeper most nights, but I believe you just need a physican referral. It can be your general physician, it doesn't have to be a GI doctor. Sorry I couldn't be of more help. Good luck. Ellie http://www.stlouischildrens.org/content/
Aug 31, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
1. What does a sleep study entail, exactly?

Lorenzo has had 2 -- one at 15 months and one two months ago at 38 months. Pediatric sleep studies entail an overnight stay at a hospital or sleep lab. They have you arrive in the evening (no prep required, except it's best to not let them nap so they'll actually go to sleep) and attach wire leads to the head, face, chest and legs. They also apply a sensor under the nose and two straps around the chest/stomach to monitor respiratory effort. It seems kind of impossible to imagine that a baby/child can sleep with all that stuff on, but incredibly, most do (even my sleepless wonder slept for 5 1/2 hours the first time and 6 1/2 the second time). Lorenzo didn't resist the placement of the leads much, except the under the nose sensory in the first study, because he had a pH probe in already and wanted noting to do with anyone doing anything around his nose. At the hospital we went through, they came around and woke him up around 5 am to remove all the leads. It took about two weeks to get results.

2. How do you get a sleep study done? Does your doctor have to order one? Would that be her family doctor or our GI?

Although I believe that, technically, any doctor can refer you for a sleep study, for kids it is generally a pulmonologist, and ENT or a Neurologist who does the referring. I suspect this is because all three are required to have some training in sleep science, so they are considered a better authority on who should have one than a GP. You can ask at your GI/Pediatrician's office if they ever do referrals for sleep studies.

3. Are these studies done at the hospital or at home?

For children they are (or should be) always done at a hospital or lab.

4. What symptoms would have to be present before a doctor would order the study? I don't think she has apnea but I think it's possible she could be aspirating a little since she does have a nagging nighttime cough which has become junky-sounding. Would a doctor order a study based on this and the fact that she's struggled with reflux and is continuing to wake up so often, or would there need to be other factors in play? If so, what?

The two most common reasons for a child to be referred for a sleep study are snoring and observed episodes of apnea or signs of oxygen desaturation (turning blue). Sometimes a child who shows other signs of sleep troubles, particularly excessive daytime sleepiness, will be referred, but I have to warn you that a lot of doctors are not well versed on the relationship between reflux and sleep disorders, so it can take a lot of pushing to get one done if you don't mention evidence or signs of apnea. The sleep study alone would not tell you if her sleep was being disturbed by reflux, nor if she was aspirating, but it would tell you if her sleep was being disturbed by respiratory issues or involuntary body movements. You can do a sleep study combined with a pH probe, which can correlate sleep disorders with reflux, but as I mentioned, that can pose problems in terms of the child's acceptance of all that's required.

5. Are these studies covered by insurance? If not, about how much do they cost? 6. What would the sleep study be able to tell us? Is there a better way to find out what the sleep disturbance is all about?

They may be covered by insurance (Lorenzo's were) -- you should check with you specific insurer. I don't know how much variation there is in other places but here in California Lorenzo's cost about $5,000 each.

Here is a link to more information about signs of obstructive sleep apnea. Central sleep apnea generally has fewer symptoms, the most prominent generally being signs of sleep deprivation in spite of average or more than average quantity of sleep. Obstructive and Central Apnea can also both appear in the same person.

http://www.sleepeducation.com/Disorder.aspx?id=71

To be honest, if you don't currently believe she has apnea, and you don't see anything on this link (or others) that suggests that she does, I would be more inclined, myself to just have a pH Impedance Probe done. When you do one, you also keep a journal (sometimes written, sometimes on an attached computer) where you note things like sleep disruptions, so they can correlate reflux to specific symptoms you are concerned about. That would also give you information about the coughing, because it can tell you if the coughing is directly related or associated with a reflux episode. Then, if she does have a lot of sleep disruptions related to reflux, you might want to further explore having a full sleep study done.

When she wakes, is she crying and upset? Is it hard to get her back to sleep, or relatively easy? How much does she sleep in the average 24 hour period?

Aug 31, 2010
dcd
Thanks so much for all the info and resources. I will do more looking into this.

Lorenzomama, she is usually just very fitful and restless. Most of the time she'll start whimpering/fussing and it will turn into a fullfledged cry unless we go in there and replace her pacifier (even though she could replace it herself if she could find it). She is pretty easy to get back to sleep. Usually just replacing the pacifier does it. Sometimes I lay my hand on her back for a minute. It's rare for her to start screaming; it's rare that I actually have to pick her up out of her crib to comfort her. We do bring her to bed with us several times a week - but that's because by the 4th wakeup of the night, we can't make the trek across the house anymore. If she's in bed with us, at least we don't have to get up to comfort her.

I just don't know what's going on; what's waking her up? She will usually sleep for a chunk at the beginning of the night (she goes to bed so early at 6:30-7 p.m.), but then will start waking up sometime around 9-10-11-12. Then she'll just keep waking up, all night long. Sometimes every hour or less.

We've tried putting her to bed later, or putting her down for an early nap and then waking her up, thinking maybe she was getting too MUCH sleep (though we know she's not since she isn't great with daytime naps). But she protests every time and it never goes well. This is a baby that has definitely set her own bedtime and knows when she wants to go to sleep.

When she wakes up in the night, usually her eyes stay closed and sleepy. She's not "up" and alert and awake - you can tell she *wants* to be asleep, not awake.

You mentioned something about involuntary body movements... I wonder if that could be part of the problem. She is such a wiggly, busy baby. When she was younger she slept beautifully, but I think that's because she was swaddled. She loved to be swaddled, really tight. That was also before her reflux got really bad. Her crappy sleep started as soon as the reflux got bad. I see this looking back, but at the time I didn't know what was causing the sudden sleep disturbance.

She sleeps for about 1.5 hours at daycare - but this is dispersed over 2 or 3 naps, so it's not good solid sleep. The she "sleeps" at night from 6:30-7 p.m. to around 6 a.m. - but this is also very disturbed sleep. I want her to get good quality sleep. I know it can't be healthy for her to wake up so often.

What does Lorenzo do when he wakes up at night?

Aug 31, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Honestly, my guess is that Kylie, like Lorenzo, has a number of things going on that influence the quality of her sleep. I know you've been exploring the allergy connection to her reflux, and the same may be true of sleep. I know a lot of moms who, when they hear that a baby is waking frequently and seems uncomfortable during sleep, their first question is "what is she allergic to?"

There's a syndrome called Periodic Leg Movements, which causes a person's legs (usually, though it can be other parts) to twitch and move during sleep in such a way that it disrupts the flow of sleep.

Another thing to consider is her iron level, as anemia can cause restless and disrupted sleep, as can thyroid problems. Sensory Processing Disorder can also wreak havoc on sleep. Here's a link to a symptoms checklist for infants:

http://sensory-processing-disorder.com/SPD-symptom-checklist-for-infants-and-toddlers.html

The way sleep cycles work for infants is they go through a complete sleep cycle, typically, ever 40-60 minutes. This time period grows to 90 minutes in adults. So babies who wake every 40-60 minutes are basically waking at the end of a sleep cycle, when EVERYONE has an totally normal arousal. There are a lot of theories out there about WHY some babies do that, the most popular of which is that it is the parent's fault for helping them and creating a habit. Personally, I reject this theory based on my personal belief that it isn't reasonable to expect babies to get to sleep all by themselves, especially when there are underlying medical issues. It is also, by the way, totally normal for all people to sleep more soundly in the early hours of the night, when there is little REM sleep, and then sleep more lightly later one, when there is more REM sleep.

To be honest with you, a baby waking 3-5 times in 12 hours or sleep seems pretty good, especially if she is not waking in distress. I would be more concerned with the cause of the restlessness, and I believe that all children with reflux should be evaluated for sleep disorders because the connection is so common, and because sleep disorders can lead to so many challenging side effects, including ADD/ADHD.

At his worst, during the first year, Lorenzo woke every 10-60 minutes, usually either gagging, choking or screaming. Until he was 2 years old, he had never slept longer than 3 hours, and that only 2-3 times. He suffers from insomnia, as well, and a lot of the time, when he wakes up, it takes upwards of an hour, often several, to get him back to sleep. I can sometimes hear the reflux happening while he sleeps, and I have observed numerous apnea episodes over the years. He also often wakes with his face in pool of yellowish drool, which I take to be bile. Most of his significant aspirations have also occurred during sleep. He has always slept much less than the recommended amount for his age by several hours.

One final thing to note -- children with active brains, like the ones that meet their developmental milestones early and amaze everyone with their intelligence....they are very often HORRIBLE sleepers. It's like their brains just can't let go of all that they want to accomplish and rest, and an arousal feels like an invitation to get back to business. So, as I said, I suspect Kylie probably has more than one of these things going on. You big challenge is uncovering the one's you can do something about, and accepting the ones you can't....((HUGS))

Sep 02, 2010
dcd
Lorenzomama, you are a wealth of information. :)

Wouldn't it be so simple if it's just that Kylie has a very active brain!? Certainly, it could apply...she is incredibly busy and incredibly alert. She always has been, even as a newborn. Being a first-mom I assumed that was normal until I starting receiving constant comments.

But, I'm thinking this waking has to be related to something else...because like I said, when she wakes she's not trying to socialize or play or anything else - she goes right back to sleep with a little comfort.

I keep thinking about how she slept after her NAET treatments, when they were holding before they fell off - 12 hours straight without a peep.

Perhaps the MSPI is still affecting her sleep then. Maybe the partially hydrolized proteins in the Nutramigen are good enough to make her more comfortable during the day, but are bothering her at night?

We do have our first appt. for the craniosacral therapy on Tuesday. I'm still holding out hope this will help with her sleep on its own and/or enable the NAET to stick (thus, helping with her sleep that way.)

Like you, I worry about the side effects of chronic sleep disturbance/deprivation - like ADD, etc. When I was pregnant I read "Healthy Sleep Habits, Happy Child", which helped me understand more about sleep in children - but which now completely HAUNTS me, considering K's sleep issues!

I'm curious about the connection between anemia and thyroid problems and sleep disturbances. I have no reason to think either could be an issue, but it wouldn't hurt to be able to rule them out.

Do you know how I would go about getting her tested for these things? I think my doctor thinks I'm overly anxious about everything - granted, I did call her A LOT regarding reflux stuff while waiting to get in with the GI. Do you think she is the person to talk to about K's continued sleep disturbance, or the GI? Do I need to be looking into another kind of specialist?

Sep 02, 2010
kavyamom
It is really interesting about the active mind. Kavya is one of those babies and since birth has always had a lot of trouble going to sleep and staying asleep. However, like lorenzomama mentioned there are so many factors. With Kavya, it is the active mind, the reflux, allergies, and who knows what else. Just like Lorenzo, Kavya could get up 8 to 10 times during the first year and putting her to back to sleep could take anywhere from 1/2 hour to 2 hours. The only way I survived was because I had parents staying with me and we would do shifts. Even now at 20 months she gets up 4 to 5 times at night but this is much better than the first year. I think if Kylie goes back to sleep once you put the pacifier or pat her, then I would just bring her to bed with you and comfort her there or you could put the crib next to your bed so you don't have to walk to another room. Also, have you given any new foods? With Kavya, most foods don't suit her and cause her sleep to get worse. With a very limited diet of about 8 foods she sleeps a little better but of course for a 20 month old, 8 foods is not much variety.
Check with your
doctor first!