Help! Pediatric apnea

Julie · Post by **Julie** » Mon Jun 06, 2016 9:41 pm

There might not need to be a lot more tests up front, not unless the others were done long ago... at least the neurologist should be able to put some things into perspective for you, make some sense of them, whether or not new testing is done. Keep calling weekly re the cancellation, reminding them it's about a child, and just keep doing the best you can at home.

Janknitz · Post by **Janknitz** » Mon Jun 06, 2016 11:00 pm

Have seizures been ruled out?

ChicagoGranny · Post by **ChicagoGranny** » Tue Jun 07, 2016 6:33 am

Tmatthews80 wrote: our sleep doctor said she wanted him to do a 24 hour EEG

When an adult undergoes an in-lab sleep study, the electrodes are hooked up to the scalp, and an EEG is performed for the whole night. Do you know if this was done during your child's study?

Tmatthews80 · Post by **Tmatthews80** » Tue Jun 07, 2016 6:42 am

I believe seizures have been ruled out. Nothing like that has shown on a study.
When we had our first two sleep studies, they had him hooked up to a million wires all over. This last study at a different lab maybe used 10 sensors? It was awful. They kept coming off all night, and I am not really certain they were on good when they were on. I am just so puzzled as to how this study shows NOTHING. when a study just two months prior still showed: central, mixed, obstructive, hypopneas, and periodic limb movements. We are seeing the SAME symptoms that we have seen all along. How on earth can this study be completely clear? I mean, don't get me wrong, I want him to be healed. I just don't understand why we are seeing all the same symptoms!

ChicagoGranny · Post by **ChicagoGranny** » Tue Jun 07, 2016 7:59 am

False negatives in sleep studies do sometimes happen, especially if the patient does not sleep much, and there exists these types of difficulties:

Tmatthews80 wrote:They kept coming off all night, and I am not really certain they were on good when they were on.

Tmatthews80 wrote: I am just so puzzled as to how this study shows NOTHING. when a study just two months prior still showed: central, mixed, obstructive, hypopneas, and periodic limb movements.

Was the adenoidectomy between the two studies?

malacia

This is a combining word. What type of malacia do you suspect?

Tmatthews80 · Post by **Tmatthews80** » Tue Jun 07, 2016 8:33 am

He had a sleep study in December which showed severe apnea. His adenoids came out in January, and that's when they found all 3 kinds of malacia. It was discussed to do a surgery on his epiglottis, but we declined because we didn't feel comfortable with the doctor. He had another study in the same hospital (different unit) in March which showed mild to moderate apnea and periodic limb movements. Then, we went to this different doctor where we moved who wanted a sleep study done. He just had one mid-may that's showing nothing.
I spoke with the lady who scores the studies who says she's been in sleep for 37 years, blah blah done all this research. She is adamant that she doesn't believe he ever had apnea and is trying to get in touch with the previous lab to get the info. He does move around a lot and jerk, so she wants us to stop worrying about his breathing and snoring. She did say that GA is one of the worst place for allergies, so if he has breathing troubles some nights could be worse than others because of that. She is absolutely adamant that he does not have any sleep disorders. I don't even know what to believe.

Julie · Post by **Julie** » Tue Jun 07, 2016 8:37 am

I wonder if anyone has thought to try your son even for 1-2 nights on an OTC antihistamine to see how he sleeps. If allergies should be the problem, that little experiment could clear things up fairly quickly in terms of an answer, tho' can't actually rule out apnea.

ChicagoGranny · Post by **ChicagoGranny** » Tue Jun 07, 2016 11:57 am

Tmatthews80 wrote:She is absolutely adamant that he does not have any sleep disorders.

"No one is so sure of himself as the person who is wrong."

Tmatthews80 wrote:She did say that GA is one of the worst place for allergies, so if he has breathing troubles some nights could be worse than others because of that.

It is easy and quick to test for allergies. Any good ENT/Allergist can do it.

ChicagoGranny · Post by **ChicagoGranny** » Tue Jun 07, 2016 12:00 pm

Tmatthews80 wrote:She did say that GA is one of the worst place for allergies

She may be doing a lot of shooting from the hip. Only one city in GA made the top 100 list - http://www.livescience.com/39786-100-wo ... rgies.html

Tmatthews80 · Post by **Tmatthews80** » Fri Jun 10, 2016 5:30 am

[quote="ChicagoGranny"]
Re: Help! Pediatric apnea
by ChicagoGranny on Tue Jun 07, 2016 11:57 am

Tmatthews80 wrote:
She is absolutely adamant that he does not have any sleep disorders.
"No one is so sure of himself as the person who is wrong

Thank you for this! I spoke with my pediatrician (who is awesome) who spoke with this lady and acted like she was a little nuts. He kept reminding me that she has no facts to back up what she is saying. She says the facility in VA isn't accredited, but it is. Anyways, we went to a feeding team yesterday for some other issues, and the lady there believes that my son has severe reflux. She said it could cause apnea or apnea symptoms. This would actually explain a lot. Has anyone heard of this?

Julie · Post by **Julie** » Fri Jun 10, 2016 6:33 am

Acid reflux - GERD - does accompany apnea in many people, but does not cause it... though it often arouses, if not awakens people and is often known as 'silent' GERD because of that. I would not rush to put a child on e.g. PPI's before more investigation, but I might look hard at his diet, e.g. does he have pop just before bed, or milk (which is actually acidic to some extent and does not cure ulcers)?

Tmatthews80 · Post by **Tmatthews80** » Fri Jun 10, 2016 8:17 am

I have actually read several studies showing that severe reflux can cause spasms of the airway which can cause apneas or apnea symptoms. That could be consistent with why events aren't showing on studies. At this point, we have looked at his diet (which we are very strict about), and we just need some answers

Janknitz · Post by **Janknitz** » Fri Jun 10, 2016 12:05 pm

How about putting him on a recording pulse oximeter at night for a week or so at home?

If he's having desats, that's good evidence for any doctor to pay attention to. And if he's not, it might make you feel a little better.

Vadim · Post by **Vadim** » Mon Jun 13, 2016 1:33 pm

I can tell you this: I suspected that my son has trouble sleeping years ago. He wakes up easily, sometime he sleep-walks, often he snores, he's tired in the morning, often has headache in the morning, now he is gaining weight rapidly... We did test him, of course. Tests did not show that he has apnea. However, few times he tried to sleep for couple hours with my machine (when he felt tired during the day) and he said that he had such a good sleep...
Anyway, I'm going to buy him his own machine under my name. My settings are 5-20, and with auto-adjustment it's good for practically anybody. Waiting for these ignorant doctors to alarm or worry or do the test properly will take many years, while the child is suffering.

So, if you have a CPAP machine at home, let your kid try it, under your careful supervision. See if he feels better.

I can't recommend you to follow my decision of buying machine, but you might be more determined toward diagnosing him better if he tells you that machine helps him to feel better.

All the best!

Janknitz · Post by **Janknitz** » Mon Jun 13, 2016 2:08 pm

Vadim,

WE ARE TALKING ABOUT A 20 MONTH OLD INFANT in this case, not a child or teen who can communicate well.

Under NO circumstances should anyone be applying a CPAP machine set 5 -20 cm on an infant without medical supervision. It may be safe for an older child or adult, but may not be safe for an infant.

It may be "just air" but there are entirely different safety concerns for an infant.