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A 4 year olds journey to sleep apnea

So, I am new to this group and would like to intruduce myself: my name is katie and I have 3 wonderful, active boys ages 9,7, & 4, & we live in Mobile,Al which is in the United States. The whole reason I came to this site is about my 4 year old named Andrew. He is living with Obstructive and Central sleep apnea and even though he has been diagnosed with it no doctor can tell me the one answer I want the most. WHY? I will say that they believe he will grow out of the older he gets, they say 5 to 6 years. He has been through more then any adult I know, he even stopped breathing on the operating table when he had adnoid and tonsils taken out, I had to fight two doctors who just wanted to put a trach tube in perfectly healthly (by day) little boy, he just couldn't do the most important thing he needed to do at night BREATH. Thankfully, we now drive 5 hours away to a children hospital in Birmingham, Al where we found a wonderful doctor who diagnosed him and said don't worry "I will CPAP him and he will be perferctly fine, you will just have to adjust your life alittle bit", and so, that is what we have done.Night by night I set my alarm twice a night and get up and check to see is mask on or off,if its on GREAT, mom turns around and back to bed, if mask if off YUCK mom turns on small light sits Andrew up puts the mask back together because if the mask is off you can bet Andrew has torn it all to pieces getting it off, puts mask back on and says 123 here it comes and knows the air is getting ready to come out so for comfort I guess he puts both hands on his full face mask and holds on tight. And then mom goes back to bed. My hope and dream is that one day I won't have to set the alarm clock and Andrew will sleep all night with his mask on, but until that day I am prepared to do what it takes even if for the next 5 years I have to get up 1,2, or 3 times a night. Besides, why wouldn't I do it for him, I have to be his voice and after 2 surgeries, countless 5 hour drives to the childrens hospital, numoruss doctors either tellling me nothing is wrong with him or how lucky I am that he is even alive and that he shouldn't be here,not to mention he has Left Ventricular Hyertriphy on his heart that was caused by his sleep apnea and that the CPAP will stop.

I am so happy I found this group because unless you have a child with sleep apnea then you really can't understand what I am going through, so many people don't even know that Andrew has it because to him in the day he looks and acts perfectly normal, I'm the one that looks like somethings wrong from not getting a full nights sleep.

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Comment by 99 on January 30, 2016 at 1:30

i have just arrive in uk from my holidays in pelham alabama and will be going again shortly, however i digress

  • get the little lad to run around and possibly lose weight as this my help as for his mother change the colour of your light bulbs to red as red is less disruptive to your sleep
Comment by carol murphy on August 20, 2011 at 0:23

Hi

 

How did Andrews sleep study go in May ??How is he now hes been on Cpap a while

Comment by katie on May 6, 2011 at 3:24
Andrew has been on CPAP for about 2 1/2 almost 3 months and he is doing well I believe. We go back to the hospital on the 19th of this month for a sleep study on the CPAP.The doctor wanted to give him enough time to get adjusted to the CPAP machine. He is getting better the doctor told me for a n adult it takes 6 to 8 weeks of using it every night  to get adjusted so be prepared for a child to take twice as long. I feel the same way as you said carol about nights when you do get to sleep all night...you feel almost worse, like last night he kept his mask on all night which is only the 3rd time in these last 3months that he has done, I laid awake almost all night, like I was just laying there waiting and thinking. I agree with you about when they were babies, I would lay there and just watch his chest completly stop moving and hold my breath with him and then when he started breathing again I would start and I would tell the peditrician and he would say alot of babies have some form of apnea but I knew Andrews was not normal, Oh and when he was alseep and breathing I could close his bedroom door and close mine down the hallway and still hear him snore thats how load it was, and the doctor would just kinda laugh it off. Did your Travis keep a very bad runny nose before his adnoid & tonsils came out because Andrew did,his nose would just run green snot and after a ton of antibotics the peditrican finally said oh I think he has allergies but never would refer him to a ENT or allergy specialiest to even see if that was it. I had to take matters into my own hands and thankfully found 1 doctor that said you have 2 other children I believe you know if something is not right. If I took him today to the peditrican he would still not believe that he needs a CPAP or that anything is even wrong with him. But Yes, to answer your question Andrews appitite has went through the roof since starting CPAP & his energy levels, I have even noticed that he is talking more. I think he just has alot more energy. I know that doctors believe that it could cause facial problems with like their chin growth and some doctors said it could misshapen the face but his doctor now said to lets cross that bridge when and if we get their, he said if it does occur he will need his jaw broken but hey, my thought is sleep on CPAP and have1 last surgery to break and fix his jaw or lose my Andrew forever or slowly kill his heart or deprive him of a active life because he is so sleepy to me its a no brainer. I love that I have found someone to talk to, because everyone around kinda forgets that I don't sleep all night with a 4 year old and that Andrew even sleeps on a CPAP and that when he does go to the doctor for his check ups it 4 hours away and that I have 2 other children to take care of and work and my husband travels and works out of town alot so it leaves me to kinda be a single mom. So, I know I have talked alot but this is just kinda of a blessing in disguise for me, I so needed this.Thanks Carol I look forward to having many conversations with you :)
Comment by carol murphy on May 5, 2011 at 23:04
Hi Katie thank you so much for posting your story about your son Andrew.... your story is similar to mine in that I have a 3.5 yr old called Travis who had Obstructive and Central apnea since the day he was born I would lie awake watching his breathing and when I did eventually sleep I would often be woken by his apnea alarm this went on until December last year when he was 3 years old and we finally found out what caused him to obstruct so badly he has Laryngomalacia ( a floppy larynx which collapses into his airway when he breaths in) they operated on this with Lazer treatment and  He also had his tonsils and adenoids removed to allow as much room in his upper airway as possible he was obstructing so badly he retained CO2. To watch your child struggle to breath at a time when they are meant to be resting in sleep is hard and like you we were told so many times that he looked great during the day my slogan was " Its only when he sleeps" ..... when someone doesnt see something they often dont believe it . Your story is also like mine in the view that we were told a Trachy was in the near future if Travis continues to fail to thrive they think he burns of too many caloried when working to breath at night however we have educated ourselves and found a doctor willing to at least let us try CPAP first if he needs it . The drs view was alot of children do not tolerate it however my view is you dont know until you try and every child is different . I hope that Andrew adjusts to Cpap so you can at least get a few nights of restful sleep though the odd night this happens with me I feel awful almost like I have a hangover probably as my body is in shock from sleeping more than a few hours :) How long has Andrew been using cpap for ? Have you noticed an improvement in Andrew even subtle ones.  Look forward to sharing your journey and being here if you need to vent x
Comment by Kath Hope on May 5, 2011 at 12:40

Thanks for your story Katie, and we're glad you found us too.  Just as we adults like the support of each other, so it goes without saying that you parents do too!  It's a hard job you have putting the masks on your little ones too, as it's always easier to put it on yourself.  Maybe this forum is a place we can attract more parents to, as like you say, it feels lonely.  Having said that, there must be 1000's and 1000's of youngsters out there struggling with their sleep as their parents don't know the signs to look out for.  Your children are very lucky!

By the way, you're 6 hours behind us - I know this as my newest supplier for the Hope2Sleep sales shop is from Alexander City in Alabama - a lovely guy who runs his own sleep clinic out there.

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