hello my son is 15 months and has been diagnosed with sleep apnea, i have notiched since he was 6 months of age, but only last month was the prob actaully found
i have found him not bretahing and lifeless on the 5th october and he was in hopsital for 9 days
i relaly hope i can get the support i need here, as im so scared for him hes still only a baby
look forward to talkiing to u all
love natalie
hello new here
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Natalie,
Welcome. You must be a very concerned mom. This is the first time since I've been on this forum that I have read of a baby with apnea. Did the doctor tell you why they think he suffers with it? Is this something hopefully he will outgrow in time perhaps when his airways enlarge as he gets a bit older? Do they have him on some type of ventilator? I cannot imagine what you are going through right now. But it's a blessing that you found him when he was in the breathless state and got him the help he needed, and a huge blessing he was diagnosed and you and his doctors are now aware that he has it.
I don't know how much advice you are going to get here as far as treatment goes as there all young and older adults on this forum, although I promise you will get lots of caring, support and encouragement, and as much information about the condition as you want. I want to make sure you know about the search function at the top of the page where you can put in a keyword and then do a search for established threads on that topic. Also, the CPAP FAQ and the CPAPopedia can help clarify certain things you may not be familiar with. Also, the wonderful people here are always ready and willing to help you figure out the answers to questions you may have by researching articles and items on the Internet and providing helpful links to a lot of different OSA-related topics.
Please let us know how your son is doing and post any time to share your concerns or stories or to vent your frustrations or anxieties. Even though we may not have the answers you need, we do have a lot of people here with very supportive shoulders who will always be here to listen and hold you up. My prayers are with you and your family that your son's problem resolves and he has a long and happy life ahead of him. Best of luck.
Welcome. You must be a very concerned mom. This is the first time since I've been on this forum that I have read of a baby with apnea. Did the doctor tell you why they think he suffers with it? Is this something hopefully he will outgrow in time perhaps when his airways enlarge as he gets a bit older? Do they have him on some type of ventilator? I cannot imagine what you are going through right now. But it's a blessing that you found him when he was in the breathless state and got him the help he needed, and a huge blessing he was diagnosed and you and his doctors are now aware that he has it.
I don't know how much advice you are going to get here as far as treatment goes as there all young and older adults on this forum, although I promise you will get lots of caring, support and encouragement, and as much information about the condition as you want. I want to make sure you know about the search function at the top of the page where you can put in a keyword and then do a search for established threads on that topic. Also, the CPAP FAQ and the CPAPopedia can help clarify certain things you may not be familiar with. Also, the wonderful people here are always ready and willing to help you figure out the answers to questions you may have by researching articles and items on the Internet and providing helpful links to a lot of different OSA-related topics.
Please let us know how your son is doing and post any time to share your concerns or stories or to vent your frustrations or anxieties. Even though we may not have the answers you need, we do have a lot of people here with very supportive shoulders who will always be here to listen and hold you up. My prayers are with you and your family that your son's problem resolves and he has a long and happy life ahead of him. Best of luck.
Last edited by Sleepless on LI on Sat Oct 15, 2005 8:36 pm, edited 1 time in total.
L o R i
Hi Natalie,
What a scare - amazing that such a young bub has been diagnosed with SA/OSA
You can be sure you will get all the support you need here. There are so many good folk who will take it on themselves to make sure you get good advice and best of all support.
Welcome
DSM
What a scare - amazing that such a young bub has been diagnosed with SA/OSA
You can be sure you will get all the support you need here. There are so many good folk who will take it on themselves to make sure you get good advice and best of all support.
Welcome
DSM
xPAP and Quattro std mask (plus a pad-a-cheek anti-leak strap)
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Guest
I googled infant sleep apnea. There's a lot of info. This is interesting:
OSA, the most common type of sleep apnea, occurs when the throat muscles and tongue relax during breathing and partially block the opening of the airway. So-called central apnea is more prevalent in infants and is believed to be associated with immaturity of the central nervous system. The more serious OSA is relatively rare in infants and is sometimes implicated in sudden infant death syndrome (SIDS).
Nasal continuous positive airway passage (nCPAP) is the most common effective treatment for sleep apnea. The patient wears a mask over the nose during sleep and pressure from an air compressor forces air through the nasal passages. The air pressure is adjusted so that it is just enough to hold the throat open when it relaxes the most.
The major disadvantage of nCPAP is that about 40 percent of patients have difficulty using it for a long period of time. Facial skin irritation, drying of the nose, abdominal bloating and sore eyes are among the side effects reported.
Although nCPAP has been demonstrated to be effective in treating OSA in infants, Frances McNamara, PhD, and colleagues at the University of Sydney’s David Read Laboratory wanted to determine the effectiveness of long-term nCPAP therapy in infants at home. They also wanted to see if nCPAP could be considered as an alternative to other treatments, including surgery. And, they wanted to learn the effects of increasing age and development on both OSA severity and the requirements for specific levels of nCPAP.
Twenty-four infants with OSA participated in the study. They had clinical histories that included a family history of SIDS, an apparent life threatening event (ALTE), or facial and upper airway anatomic abnormalities.
Researchers reported that 18 of the infants were treated successfully with nCPAP in their home for a period of from one to four years. They noted that five of the infants, each of whom had conditions that involved anatomic abnormalities, received continued nCPAP therapy because repeated diagnostic polysomnographic studies showed persistent obstructive apnea during sleep. In nine infants, obstructive events were completely abolished.
The authors said that, in general, infants tolerated the CPAP and the nasal mask very well. There were no problems reported by parents concerning the CPAP pressure or the mask itself. There were no reports of any facial skin breakdown or skeletal changes in any of the infants during treatment. It was also reported that nCPAP therapy caused increased daytime alertness in each infant.
Researchers found that a significantly higher CPAP was required to prevent obstructive events during sleep as each infant grew older, but sleep-disordered breathing in many of the study infants improved with age.
The researchers concluded that nCPAP therapy was shown to be effective in the management of OSA in infants, regardless of the believed site and mechanism of obstruction. They added that nCPAP is effective as a short-term treatment for infants who have OSA for a transient period of time and it is effective as a long-term treatment for infants with facial and upper airway anatomic abnormalities. They also noted that nCPAP was a safe alternative to the placement of a nasopharyngeal airway or surgery and it served as a temporary treatment for infants who would eventually require surgery.
"Our findings stress the need for regular follow-up because the amount of OSA and the level of nCPAP needed to prevent obstructive apnea often change with age and development," Dr. McNamara said.
From:Infants With Obstructive Sleep Apnea Treated Successfully At Home
I'm sure you're reading everything you can get your hands on. From the short search I've done, it appears CPAP therapy is very successful in treating this problem for your little one.
Best of luck to you!
OSA, the most common type of sleep apnea, occurs when the throat muscles and tongue relax during breathing and partially block the opening of the airway. So-called central apnea is more prevalent in infants and is believed to be associated with immaturity of the central nervous system. The more serious OSA is relatively rare in infants and is sometimes implicated in sudden infant death syndrome (SIDS).
Nasal continuous positive airway passage (nCPAP) is the most common effective treatment for sleep apnea. The patient wears a mask over the nose during sleep and pressure from an air compressor forces air through the nasal passages. The air pressure is adjusted so that it is just enough to hold the throat open when it relaxes the most.
The major disadvantage of nCPAP is that about 40 percent of patients have difficulty using it for a long period of time. Facial skin irritation, drying of the nose, abdominal bloating and sore eyes are among the side effects reported.
Although nCPAP has been demonstrated to be effective in treating OSA in infants, Frances McNamara, PhD, and colleagues at the University of Sydney’s David Read Laboratory wanted to determine the effectiveness of long-term nCPAP therapy in infants at home. They also wanted to see if nCPAP could be considered as an alternative to other treatments, including surgery. And, they wanted to learn the effects of increasing age and development on both OSA severity and the requirements for specific levels of nCPAP.
Twenty-four infants with OSA participated in the study. They had clinical histories that included a family history of SIDS, an apparent life threatening event (ALTE), or facial and upper airway anatomic abnormalities.
Researchers reported that 18 of the infants were treated successfully with nCPAP in their home for a period of from one to four years. They noted that five of the infants, each of whom had conditions that involved anatomic abnormalities, received continued nCPAP therapy because repeated diagnostic polysomnographic studies showed persistent obstructive apnea during sleep. In nine infants, obstructive events were completely abolished.
The authors said that, in general, infants tolerated the CPAP and the nasal mask very well. There were no problems reported by parents concerning the CPAP pressure or the mask itself. There were no reports of any facial skin breakdown or skeletal changes in any of the infants during treatment. It was also reported that nCPAP therapy caused increased daytime alertness in each infant.
Researchers found that a significantly higher CPAP was required to prevent obstructive events during sleep as each infant grew older, but sleep-disordered breathing in many of the study infants improved with age.
The researchers concluded that nCPAP therapy was shown to be effective in the management of OSA in infants, regardless of the believed site and mechanism of obstruction. They added that nCPAP is effective as a short-term treatment for infants who have OSA for a transient period of time and it is effective as a long-term treatment for infants with facial and upper airway anatomic abnormalities. They also noted that nCPAP was a safe alternative to the placement of a nasopharyngeal airway or surgery and it served as a temporary treatment for infants who would eventually require surgery.
"Our findings stress the need for regular follow-up because the amount of OSA and the level of nCPAP needed to prevent obstructive apnea often change with age and development," Dr. McNamara said.
From:Infants With Obstructive Sleep Apnea Treated Successfully At Home
I'm sure you're reading everything you can get your hands on. From the short search I've done, it appears CPAP therapy is very successful in treating this problem for your little one.
Best of luck to you!
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Sleepless on LI
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- Location: Long Island, New York
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neversleeps
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- Location: Minnesota
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Sleepless on LI
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- Location: Long Island, New York
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Born Tired
- Posts: 327
- Joined: Fri Sep 30, 2005 7:49 pm
Hi Natalie,
Welcome. Hearing why you needed to join us makes most of our problems seem so insignificant! Will be praying for your Drs to have wisdom in treating your baby, for you to have the grace you need to handle each and every day, and for your baby that the Lord keep a special watch over him.
I do think there may be somebody else here that said her child is on CPAP. Can't remember who--sorry. Maybe they will read this post and reply.
Praying for you to have peace in your heart.
Love,
Esther
II Corinthians 12:9 "And he said unto me, 'My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.'"
Welcome. Hearing why you needed to join us makes most of our problems seem so insignificant! Will be praying for your Drs to have wisdom in treating your baby, for you to have the grace you need to handle each and every day, and for your baby that the Lord keep a special watch over him.
I do think there may be somebody else here that said her child is on CPAP. Can't remember who--sorry. Maybe they will read this post and reply.
Praying for you to have peace in your heart.
Love,
Esther
II Corinthians 12:9 "And he said unto me, 'My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.'"
My husband says, "Esther is not a morning person---and it goes downhill from there."
I Thes. 5:16 "Rejoice evermore."
I Thes. 5:16 "Rejoice evermore."
Natalie,
That must have been very frightening!
http://www.apneasupport.org has a special pediatric section. Look into it as well.
Good luck.
O.
That must have been very frightening!
http://www.apneasupport.org has a special pediatric section. Look into it as well.
Good luck.
O.
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
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mummy2hollyandmatthew
- Posts: 7
- Joined: Sat Oct 15, 2005 3:25 pm
- Location: essex
thank you
wow thank you so much for the reply's
at the end of my message i says about a machine, matthew isnt on a machine at the mo
right i will give u all the info i know, and then u will understand matthew abit more
since he was 6 months old, we bought a angel care alarm( dont know if u have heard of them) they r a sensor pad which goes under the mattress and detects bretahing movement, if no breathing movemnet is detected after 20 seconds the alarm will sound
since we have bought it its gone off, i have been on at matthew paed for months now saying something isnt right, when the alarm goes off and we go into him, hes brething had never stopped, just very slow, with his skin very pale and his body freezing
in june we was taken into our hosp for 5 nights for them to see what was wrong, all the connected him to was a sats machine, after 5 nights they sent us home saying there was nothing wrong with him and to stop uing the alarm, i didnt do that as i knew he had a prob but couldnt get no one to listen to us
in august matthew was seen by a neurolgist at another hosp in london, as he was having episodes like seizures, they decided that while he was there they would do a sleep study
the next day the respiratory doc came round and said yes matthew does a prob when he sleeps he takes a few breaths then pauses with only slight decreases in sats dropping
they said although he has a prob they also found he had reflux, so was hoping it was the reflux causing this pauses in breathe, he was started on reflux medication and would be reviewed in 2-3months (december)
well in 19 days since coming home from the hosptal matthew alarm continued to alarm on 17 occasions in 19 days i contactedmy gp as matthew local paedis useless and he agreed that was to mnay times and december was such a long time to wait
so he got onto london but they said they wouldnt see matthew til december, so he was taken bk into our local hosp for 2 nights where ntohing happened again and we was sent home
then last week on the 5th oct matthew alarm went off at about 8.30pm and i found him not breathing, blue around mouth and nose and hands and very floppy, i thought he was dead, i tried to stimulate him but nothing worked, i continued to do this for a couple of minutes then he started breathing again, but he still wasnt right, the ambulnce came and took us to hosp
they connected him to a sats machine again every time he slept, on 2 occasions when matthew was sleeping in the day he was having apneas where his 02 levels where dropping to 87% but hes colour was not changing so the nurses said he didnt need nothing to help him and the apneas where only lasting 10 seconds which was normal
anyhow after 7 days at our local hosp they finally had a bed in london, which was on tuesday night (12th oct) on the high dependcy ward, we was there 2 nites where one nite they carried out another sleep study and it still showed the same probs as b4 with with only slight decreases in 02
on wednesday 13th oct sleep they connected matthew to a sats machine but also it counted his bretahs per minute, a child should b about 20-40 breaths per minute the alarm was set togo off at 11 bretahs
and all night matthew bretahs where between 6 per minute and 0 meaning he stopped bretahing so the nurses had to keep stimulating him, hes o2 or pulse never dropped through out these episodes, so he wasnt just doing it for 10 seconds, he had stopped bretahing for a whole minute
anyhow sorry this is so long, on thursday the 14th oct we saw the nurolgoits and got the news which wasntgood
they looked at matthew sleep study in more detail and found the problem to be with the main central part of his brain, hes airways r fine theres no blockages so its the brain, im gutted, hes only 15 months and i was so hoping it was reflux causing this
matthew needs to go bk inot hosp to have a mri under GA as he wouldnt cope with sedation, he also needs a Bulbar EMG, a sleep EEG, hes had 3 EEG'S but all in the day when hes been awake so they wnat to see what he does he sleeps, they also think he has a genetic disorder so he needs to be reviewd by then
we have had ti tough since matthew born he was 4 weeks early but my god hes realy suffere with his health
wont go into tthat now as ive gone on enough lol hope ur all still awake
so that is the story so far, if u want to know more ask away, i dont mind
take care and thnaks for all ur messages
love natalie
at the end of my message i says about a machine, matthew isnt on a machine at the mo
right i will give u all the info i know, and then u will understand matthew abit more
since he was 6 months old, we bought a angel care alarm( dont know if u have heard of them) they r a sensor pad which goes under the mattress and detects bretahing movement, if no breathing movemnet is detected after 20 seconds the alarm will sound
since we have bought it its gone off, i have been on at matthew paed for months now saying something isnt right, when the alarm goes off and we go into him, hes brething had never stopped, just very slow, with his skin very pale and his body freezing
in june we was taken into our hosp for 5 nights for them to see what was wrong, all the connected him to was a sats machine, after 5 nights they sent us home saying there was nothing wrong with him and to stop uing the alarm, i didnt do that as i knew he had a prob but couldnt get no one to listen to us
in august matthew was seen by a neurolgist at another hosp in london, as he was having episodes like seizures, they decided that while he was there they would do a sleep study
the next day the respiratory doc came round and said yes matthew does a prob when he sleeps he takes a few breaths then pauses with only slight decreases in sats dropping
they said although he has a prob they also found he had reflux, so was hoping it was the reflux causing this pauses in breathe, he was started on reflux medication and would be reviewed in 2-3months (december)
well in 19 days since coming home from the hosptal matthew alarm continued to alarm on 17 occasions in 19 days i contactedmy gp as matthew local paedis useless and he agreed that was to mnay times and december was such a long time to wait
so he got onto london but they said they wouldnt see matthew til december, so he was taken bk into our local hosp for 2 nights where ntohing happened again and we was sent home
then last week on the 5th oct matthew alarm went off at about 8.30pm and i found him not breathing, blue around mouth and nose and hands and very floppy, i thought he was dead, i tried to stimulate him but nothing worked, i continued to do this for a couple of minutes then he started breathing again, but he still wasnt right, the ambulnce came and took us to hosp
they connected him to a sats machine again every time he slept, on 2 occasions when matthew was sleeping in the day he was having apneas where his 02 levels where dropping to 87% but hes colour was not changing so the nurses said he didnt need nothing to help him and the apneas where only lasting 10 seconds which was normal
anyhow after 7 days at our local hosp they finally had a bed in london, which was on tuesday night (12th oct) on the high dependcy ward, we was there 2 nites where one nite they carried out another sleep study and it still showed the same probs as b4 with with only slight decreases in 02
on wednesday 13th oct sleep they connected matthew to a sats machine but also it counted his bretahs per minute, a child should b about 20-40 breaths per minute the alarm was set togo off at 11 bretahs
and all night matthew bretahs where between 6 per minute and 0 meaning he stopped bretahing so the nurses had to keep stimulating him, hes o2 or pulse never dropped through out these episodes, so he wasnt just doing it for 10 seconds, he had stopped bretahing for a whole minute
anyhow sorry this is so long, on thursday the 14th oct we saw the nurolgoits and got the news which wasntgood
they looked at matthew sleep study in more detail and found the problem to be with the main central part of his brain, hes airways r fine theres no blockages so its the brain, im gutted, hes only 15 months and i was so hoping it was reflux causing this
matthew needs to go bk inot hosp to have a mri under GA as he wouldnt cope with sedation, he also needs a Bulbar EMG, a sleep EEG, hes had 3 EEG'S but all in the day when hes been awake so they wnat to see what he does he sleeps, they also think he has a genetic disorder so he needs to be reviewd by then
we have had ti tough since matthew born he was 4 weeks early but my god hes realy suffere with his health
wont go into tthat now as ive gone on enough lol hope ur all still awake
so that is the story so far, if u want to know more ask away, i dont mind
take care and thnaks for all ur messages
love natalie
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Natalie,
You are not boring anyone (I'm sure I speak for us all) with your story. It's is rivetting, in my opinion, as this is not the usual thing we hear on this site. I just wish it weren't so for yours and Matthew's sake. Try to hang on until they finally come to a conclusion as to what they can do for your precious little one. Like Allen said, thank the Lord above you are such a great mom and are doing everything you can, regardless of what these hopts. had told you, because you know there is something going on with him. He is a young, strong little fighter and he will keep on fighting with a mom like you on his side. It's a blessing this wasn't happening in infancy to such a degree and that he's now a little older and stronger at 15 months to fight what is going on.
I'm sure it feels like the world around you is unfair and it must be very hard to handle. I know as a mother of three myself that we, as moms, would trade places in a hearbeat if we could with our children when they're ill. Unfortunately we're not given the option. So the next best thing is to stay by him, give him all the comfort only mommy can give him and make sure he is getting the best care by the best doctors until they can give you an accurate assessment of what can be done for him.
Don't give up hope. Where there is breath, there is hope. Please continue to write to us and don't feel the length of your posts matter. They don't at all. I'm sure I speak for everyone here when I say we feel so helpless in this matter, but can only offer you our support, which is unconditional.
My prayers are with you all. May God watch over Matthew and the rest of his family and keep you all safe and well.
You are not boring anyone (I'm sure I speak for us all) with your story. It's is rivetting, in my opinion, as this is not the usual thing we hear on this site. I just wish it weren't so for yours and Matthew's sake. Try to hang on until they finally come to a conclusion as to what they can do for your precious little one. Like Allen said, thank the Lord above you are such a great mom and are doing everything you can, regardless of what these hopts. had told you, because you know there is something going on with him. He is a young, strong little fighter and he will keep on fighting with a mom like you on his side. It's a blessing this wasn't happening in infancy to such a degree and that he's now a little older and stronger at 15 months to fight what is going on.
I'm sure it feels like the world around you is unfair and it must be very hard to handle. I know as a mother of three myself that we, as moms, would trade places in a hearbeat if we could with our children when they're ill. Unfortunately we're not given the option. So the next best thing is to stay by him, give him all the comfort only mommy can give him and make sure he is getting the best care by the best doctors until they can give you an accurate assessment of what can be done for him.
Don't give up hope. Where there is breath, there is hope. Please continue to write to us and don't feel the length of your posts matter. They don't at all. I'm sure I speak for everyone here when I say we feel so helpless in this matter, but can only offer you our support, which is unconditional.
My prayers are with you all. May God watch over Matthew and the rest of his family and keep you all safe and well.
L o R i
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Twinsanity
- Posts: 11
- Joined: Fri Oct 14, 2005 6:46 am
- Location: MI, USA
- Contact:
Natalie,
I know what you're going through. My youngest two are twins. I was put on hospital bedrest (after being on bedrest at home the whole time) at 25 weeks when my son's membrane ruptured. We were able to keep them in for 5 more weeks. Because he didn't have enough fluid to "practice breathe," my son's lungs were weak and he needed immediate ventilation. He extubated himself after 24 hours, then they tried him on CPAP but he took that off too (can't imagine why ). Finally tolerated O2 canula.
After many ups, downs and generally terrifying mom and dad, our son and daughter came home on heart and lung monitors at 5 weeks. My son needed O2 at feedings because he'd desat...but "they" wouldn't give us a pulse ox monitor for him. Though most alarms seemed to be loose leads, something was very wrong with our son. I insisted to our ped that baby boys are not supposed to be blue! Somehow, he didn't see the color in his office. It was frustrating to not be able to get anyone to listen!
Almost a month after their homecoming, my son's alarm went off repeatedly one night. We put him in bed with us, stayed awake all night so we could stimulate him over and over again. The children's hospital was an hour away and the local hospital was a horrible place. By morning, I went to prepare our daughter's feeding and heard Kai's alarm again. Waited for it to go off but it didn't. I ran back through the house and found my husband holding Kai in the air calling his name and blowing in his face. The alarm finally stopped. Kai was very dusky. I put on his O2, cranked it up and rushed him to Children's. They immediately asked how long he'd been that color. Always?
He was admitted. Over the next few days we found the twins had contracted RSV (a common cold virus, very dangerous for preemies), that Kai had BPD (broncho-pulmonary dysplasia--lung damage resulting in scar tissue, usually from prolonged mechanical ventilation), severe "silent" reflux and some other things. He came home on continuous O2 and a myriad of meds.
We moved to a different states when the twins were two, they're seven now. Kai has "developmental delays" and "mild cerebral palsy" (mild brain damage due to oxygen deprivation as an infant?) but he's doing very well with special ed services (most would not know of his issues just to look at him). He's still on inhaled meds for asthma/reactive airway and they help him, especially with colds and such. However, he flops around in his sleep and often, I find him sleeping sitting up. He's not been on O2 in years and the monitors are long gone but I suspect this is apnea related. I think it's easier for him to breathe sitting up.
Because his sister had recurrent bouts of strep and tonsilitis, doctors listened when I reported her snoring and daytime tiredness. Her tonsils and adnoids were removed a year and half ago. She's doing much better but Kai still flops and sits. The stupid ped (now retired so we no longer have to deal with him, other docs and PAs in the practice are better) tells me some kids are just active sleepers.
I saw my sleep doc this week and suddenly realized that he's a pulmonologist. He's a truly wonderful, caring doc who really listens (rare for this area). I talked to him some about Kai during my appointment and he wants to see him. I'm really excited about the possibility of finally seeing some light at the end of the tunnel.
Hopefully, you will find some answers soon and know that feeling soon as well.
I know what you're going through. My youngest two are twins. I was put on hospital bedrest (after being on bedrest at home the whole time) at 25 weeks when my son's membrane ruptured. We were able to keep them in for 5 more weeks. Because he didn't have enough fluid to "practice breathe," my son's lungs were weak and he needed immediate ventilation. He extubated himself after 24 hours, then they tried him on CPAP but he took that off too (can't imagine why ). Finally tolerated O2 canula.
After many ups, downs and generally terrifying mom and dad, our son and daughter came home on heart and lung monitors at 5 weeks. My son needed O2 at feedings because he'd desat...but "they" wouldn't give us a pulse ox monitor for him. Though most alarms seemed to be loose leads, something was very wrong with our son. I insisted to our ped that baby boys are not supposed to be blue! Somehow, he didn't see the color in his office. It was frustrating to not be able to get anyone to listen!
Almost a month after their homecoming, my son's alarm went off repeatedly one night. We put him in bed with us, stayed awake all night so we could stimulate him over and over again. The children's hospital was an hour away and the local hospital was a horrible place. By morning, I went to prepare our daughter's feeding and heard Kai's alarm again. Waited for it to go off but it didn't. I ran back through the house and found my husband holding Kai in the air calling his name and blowing in his face. The alarm finally stopped. Kai was very dusky. I put on his O2, cranked it up and rushed him to Children's. They immediately asked how long he'd been that color. Always?
He was admitted. Over the next few days we found the twins had contracted RSV (a common cold virus, very dangerous for preemies), that Kai had BPD (broncho-pulmonary dysplasia--lung damage resulting in scar tissue, usually from prolonged mechanical ventilation), severe "silent" reflux and some other things. He came home on continuous O2 and a myriad of meds.
We moved to a different states when the twins were two, they're seven now. Kai has "developmental delays" and "mild cerebral palsy" (mild brain damage due to oxygen deprivation as an infant?) but he's doing very well with special ed services (most would not know of his issues just to look at him). He's still on inhaled meds for asthma/reactive airway and they help him, especially with colds and such. However, he flops around in his sleep and often, I find him sleeping sitting up. He's not been on O2 in years and the monitors are long gone but I suspect this is apnea related. I think it's easier for him to breathe sitting up.
Because his sister had recurrent bouts of strep and tonsilitis, doctors listened when I reported her snoring and daytime tiredness. Her tonsils and adnoids were removed a year and half ago. She's doing much better but Kai still flops and sits. The stupid ped (now retired so we no longer have to deal with him, other docs and PAs in the practice are better) tells me some kids are just active sleepers.
I saw my sleep doc this week and suddenly realized that he's a pulmonologist. He's a truly wonderful, caring doc who really listens (rare for this area). I talked to him some about Kai during my appointment and he wants to see him. I'm really excited about the possibility of finally seeing some light at the end of the tunnel.
Hopefully, you will find some answers soon and know that feeling soon as well.
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Twinsanity,
You certainly have had your share, too. And I know a lot about the special education modifications as I take those hearings all the time in my profession. They can do wonderful things with children with developmental delays, although you have to make sure you are an active participant in their meetings and keep the district honest and on track. If you are not happy with what is going on, make sure you insist on a hearing and get some action taken. They have an obligation to make sure your child is getting the best possible education environment possible and being a parent puts you in a position to make sure they do that.
It is the hardest thing watching our children have problems, especially the types that both you and Natalie describe. We just have to try to pull some positive out of the negative and hold onto the blessings that you have been given. I wish you the best.
You certainly have had your share, too. And I know a lot about the special education modifications as I take those hearings all the time in my profession. They can do wonderful things with children with developmental delays, although you have to make sure you are an active participant in their meetings and keep the district honest and on track. If you are not happy with what is going on, make sure you insist on a hearing and get some action taken. They have an obligation to make sure your child is getting the best possible education environment possible and being a parent puts you in a position to make sure they do that.
It is the hardest thing watching our children have problems, especially the types that both you and Natalie describe. We just have to try to pull some positive out of the negative and hold onto the blessings that you have been given. I wish you the best.
L o R i
Natalie - you couldn't have come to a more supportive place than this. The folks on here are awesome. As posted earlier, your Matthew's problem is unique to us but if anyone knows where to direct you, they sure will. My thoughts are prayers are with you, Matthew and the rest of your family. Please keep us informed on how you all are doing.