hi all
will try and keep this short  
im new hear and just thought i would say hello.
my son had his first sleep study done at great ormond st this wk and it showed csa.

he didnt sleep too well as the child in the next bed screamed most of the night but in the time he did sleep ok he had 33 central sleep apneas. his lowest sats were 84% but i dont know all the other figures as not had a letter yet. this was just what they told me.

my son was born at 26wks and has a number of diagnosis although still causes mischief  
he is now 3 1/2yrs old. he is on oxygen at night and when asleep and also when he has a cough or cold due to chronic lung disease. he also has small lungs, reduced lung function and cld.
he also has esophegeal dysmotility so the dr is convinced he also has osa as he clicks sometimes when he breaths and we know that the saliva pools in his throat. although he is hopeful that in the future he will learn to swallow more effectively.
my son has good nights and bad nights, he can have sats at 97% all night in air and then the next night he can have sats of 83% all night on 1.5litres of 02 through nasal cannula. so its very varied. unfortunately for us he wasnt like this for the sleep study and had a perfect night (how typical eh ) but at least they found something.
we have also noticed at home when he has a bad night we know he has apneas but he also hardly looks like he is breathing at all as its so shallow.

sorry im waffling here  
im new to this as i thought he had osa but if im honest thought it wouldnt be csa. they said he is like a baby with his breathing pattern as often he took a sigh before the apnea and that it isnt normal in a 3 1/3 yr old.

ill shut up now  
nikki

welcome.  Feel free to jump in to conversations and ask questions too~
tim

Hi Nikki and welcome!  Your story sounds very similar to mine.  My son is 19 months old and was diagnosed with OSA at 13 months.  We did the T&A to remove his very large tonsils and adenoids and then went back for a 2nd sleep study which then revealed CSA.  He also has motility issues in his esophagus due to being born with esophageal atresia (esophagus was in 2 pieces when he was born and was stretched and sewn together at 3 days old).  He also sighs right before his apnea events.  

Do you have an appt with a neurologist?  Or have you seen one yet?  We had an appointment for this week but had to reschedule due to my grandmother passing away last night.  Our appt is now April 18th.  

Please keep us posted on your findings as your situation sounds so similar to mine.  

Take care,
Sara

hiya

thanks for the replies

sara lovely to hear from you and also nice to know my son isnt the only one with esophegeal dysmotility !!!!!
i have never come acroos anyone else with that condition.
my son is gastrostomy fed and had a fundo op very recently for reflux but the dismotility is still giving us problems with getting enough feed into him, do you have these issues???
we dont have a appointment to see a nurologist so im guessing we wont get one. just been told that hopefully he will outgrow it all but he is already 3 1/2yrs old and to be honest i have no idea if he will outgrow it seeing as he has always done that.

sorry to hear that your little one had problems at birth and sorry he too has dysmotility issues as its no fun.
also very sorry to hear that your grandmother passed away too  
would love to hear back from you
nikki

Thanks for the kind words.  Much to the doctor's amazement, Emerson has always been able to eat through his mouth.  However, many of the kids born with his birth defect are G-tube fed so I've read about it quite a bit.  Many of these kids also have the fundo done to help with reflux.  So you are not alone!!!  Although, sometimes it feels like it.  Emerson gets Prevacid to help with his silent reflux.  He still gets food stuck at his repair site on a regular basis as there is no motility to help push it down.  He now knows how to cough it up or yawn and push it down.  Most of the time, he coughs it up.  I cut up everything very tiny, but he loves to shovel food into his mouth so we're working on taking small bites.  There is another mom on this site (mummy2hollyandmatthew I think is her screen name) whose son also uses the same hospital as you (I think).  They also suffer from some of the same issues you and I have described.  You may have a lot in common with her and she's usually very helpful.

I find it hard to believe that they are not doing any further testing on your son.  I know it's frustrating when they tell you it's something he'll outgrow.  WHEN???? is what I always want to know.  I'm not an expert by any means, but you might find some comfort in at least seeing a pediatric neurologist.  Good luck to you.

Sara

hiya thanks for your reply

i know nat (nathollymat) and i speak to her very regularly as charlie and mathew are similar in a few ways.

the only follow up we have is we have been told to call back in 6mths for a repeat sleep study and maybe some other tests as they are wondering wether he is doing something called shunting whereby the blood bypasses the lungs. but the tests for that are horendous apparantly so we have left that for now.
they did say we can call back earlier if things get worse though.

he had a great couple of nights when having the sleep study but like i say at home he can be horendous!! last night he was great on just a little oxygen but the night before he was alarming a lot.
what would a nurologist do that they havent already???? we know charlie has damage to his brain due to his problems and early stressful start but they said that they werent too worried about doing an mri scan at this point.
i also know from experience that an mri scan can mean something and nothing as my daughter had one when she was 5mths as she had encephalitis as a baby and it showed damage to the lining of her brain and the only problem she has is being deaf although they did prepare us for a child with disabilities.

is 33 central sleep apneas a lot???? and obviously that was an unsettled night due the the child crying in the next bed, baby opposite having suction every 5mins ect so it was far from peaceful in there!

sounds like your son has done amazing with his feeding given his problems. charlie doesnt really eat anything although will chew some food and loves to play with it.

nikki

Hi Nikki,

I guess I didn't realize you already know Charlie has some brain damage.  So you're right, I don't know if seeing a neurologist would do any good at this point.  Emerson hasn't been diagnosed with any type of brain damange so that's what we're not sure of.  He wasn't premature at all, but he did have an episode where he stopped breathing after one of his surgeries and had to be revived.  There may have been some brain damage as a result causing his CSA.  I'm only guessing at this point, but that's why we're anxious to see the neurologist.  

I don't know if 33 apneas is a lot or not.  Emerson only slept about 3 hrs and 45 minutes during his last study and had 4 recorded CSA's.  However, I heard him do it at least twice before they even hooked him up.  But I do think different environmental factors can make a difference - like the excessive noise and just sleeping in a weird place.  When we go for sleep studies, they are at a hotel and I have to get Emerson to get to sleep in a big queen size bed.  He loves his crib, so that's kind of difficult to get him to go to sleep and stay asleep.

Please keep me posted on everything!

Sara

This is my first time here and your story is very similar to mine charliefarley.  My daughter was born at 27 weeks and has suffered dysmotility and also has OSA.  She has brain damage from a grade IV bleed which was confirmed by MRI at 20 months.  Before that happened the doctors could only speculate she had damage as could we.  I think you should keep pushing them for an MRI scan.  you say you already know your son has damage because of his early start, is this confirmed from previous scans?  What kind of damage does he have and to which part of the brain?  Not all early babies have damage purely because of their early start, even those that have an IVH so unless it has actually been confirmed to you I would not think damage is set in stone.

hiya

no you are right not all early babies even those that have had ivh dont have brain damage.
the reason that we know he has damage is because of the dysmotility.
the esophegeal dysmotility is because the connections in the brain to that part have been damaged. this was by a peadiatrician by the way.

i have tried pushing for an mri but they see no need to do one.
as they say it can show no damage and be lots of problems or can show extensive damage and the child can be fine.
although it may be something that they want to look at later on.

does your little one get any help for  the osa??

does your little one suffer from dysmotility or is it foregut/ esophegeal dysmotility?
i know that dysmotility is quite common in early babies but there isnt many with esophegeal dysmotility so if it is that i would be interested to know how you deal with it.
nikki