Anyone who has children with Apnea ?

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Permalink Reply by RockRpsgt on April 16, 2011 at 23:38

My daughter had apnea. It was corrected with surgery. We were also able to correct her behavior problems at the same time. Well most of them anyway. A 10 year old girl is still gonna be a 10 year old.

 

I hope that it is just a question of anatomy with your 3 year old. I worry about craniofacial deformities when using PAP on children.

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Permalink Reply by carol murphy on April 16, 2011 at 23:42

Amazing how sleep is linked to how they act the next day as you say "normal age " behaviour cant be eliminated :)

My 3 year old has layngomalacia and we just discovered in december he has bilateral vocal cord palsy so yes his upper airway is floppy to say the least

 

I have heard from a paediatrician that Cpap can alter the face structure though he couldnt tell me how long this takes to happen is it a gradual thing ?  I am lead to believe Cpap is the only option over a Trach .... Do you know of other treatment for a child with Obstruction and Central ?

Glad to hear your daughters was corrected

 

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Permalink Reply by RockRpsgt on April 17, 2011 at 1:32

Unfortunately I do not know of any other treatments for children. I do not know if or how long before you might see any bone structure changes with a child. I know with adults it can take years if not a lifetime. In children we have the burden of them growing and developing. Your child presents unique circumstances that must be taken into consideration. With one exception all of the children that I have titrated have been downs patients. With these children the need for a better quality of life overshadowed the side effects. 

 

Good luck! If I can offer any assistance please let me know.
carol murphy said:

Amazing how sleep is linked to how they act the next day as you say "normal age " behaviour cant be eliminated :)

My 3 year old has layngomalacia and we just discovered in december he has bilateral vocal cord palsy so yes his upper airway is floppy to say the least

 

I have heard from a paediatrician that Cpap can alter the face structure though he couldnt tell me how long this takes to happen is it a gradual thing ?  I am lead to believe Cpap is the only option over a Trach .... Do you know of other treatment for a child with Obstruction and Central ?

Glad to hear your daughters was corrected

 

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Permalink Reply by carol murphy on April 17, 2011 at 23:43

Thanks Rock

 

I will ask for any data the consultant has and I truely feel that the side effects have to be a risk worth taking if it means improved health and living life

 

Will keep you posted on the info I get (If any !)

 

Carol

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Permalink Reply by Kath Hope on May 1, 2011 at 22:16

Carol.  Here's a link to a webinar on paediatrics with sleep apnoea.  I've just signed up for it too, but when you put in your telephone no I had to put in my mobile with +44 in front of it, as it wouldn't accept UK phone nos.

 

http://www.hopkinsmedicine.org/healthseminars/international_seminar...

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Permalink Reply by Rachel Dickinson on May 4, 2011 at 10:53

Hi my little boy has just spent 7 weeks in the childrens hospital and has now come home with cpap, he had a polysomnograghy on the 1st march and was admitted to the from the sleep unit where he had been desaturating to 50% for prolonged periods and having bradycaridas, his quality sleep time was less than 1 hour, he did his rounds around the wards while been there, he has had 3 failed supraglottoplastys for laryngomalacia, he also has tracheomalacia and a submucus cleft, he had his tonsils and adenoids out during this stay too, but, unfortunately he deteriorated and ended up back in intensive care he eventually progressed to cpap and was discharged home tube fed and on cpap, the only option left if he detioriates anymore is to have a tracheostomy, im really hoping his CO2/sa02 traces stay stable. he has been referred to maxofacial but not had an appointment yet. cpap has so far been a positive experiance apart from him needing a full face mask and he isnt too keen cos he cant have his dummy! its a bit of a fight at theminute but to see him sleeping with it its unbelivable hes a different boy bless him"!

Hope you get some answers soon.

Rachel

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Permalink Reply by Kath Hope on May 4, 2011 at 14:03

........ what a very long 7 weeks that must have been for you all Rachel.  It must have been such a relief for you to discover CPAP's working for your little boy, and I hope this continues and the trachaeotomy can be avoided!    Please keep us posted as to his progress, and we are all here to support you :) 

Those pictures you posted send a big message out to others too (medics included), as people just aren't aware of how babies and children can be affected by apnoeas.  As we've discussed elsewhere on the forum, weight issues are only 50% of the whole picture, as sleep apnoea can affect anyone of any age!

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Permalink Reply by RockRpsgt on May 4, 2011 at 21:42

Most children are born with some kind of apnea. They typically grow out of it.

 

@Rachel, I am glad to hear that your boy is doing better. The more I read about the trach and the new technology the more I believe it may not be a bad option for some. Search Dr. Mack Jones. He is a good doc and has lived with a trach for many years. He is a member of our sister site and maintains a blog on the subject. Tell him Rock sent ya.

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Permalink Reply by carol murphy on May 5, 2011 at 23:18

Kath .... Thanks for the link looks really interesting :)

 

Rachel..... Hi sorry I asked loads of questions on your Intro page that you had answered here .Gosh 7 weeks is a long time both my youngest boys have LM and have had suproglottoplast I am sorry to read that after 3 attempts it still failed for your little one is that because he was still symptomatic?  Travis my 3yr old also had tonsil and adenoids removed to allow as much room in his upper airway as possible. Travis may be ng tube fed as he is failure to thrive because of his untreated apnoea we will know by the end of the month if this is the next step.

How are they testing your little ones spo2  / Co2 levels ?

 

We were also told a tracheostomy was to be a last resort for Travis if it is needed but we will try Cpap first and wont know until he has his PSG on the 25th of May if this is the next step.

 

i hope you dont need to wait to long for Maxofacial appoint,ent.

Its good to read that so far Cpap has a postive effect so far shame he cant have his dummy

 

What have you noticed different since using Cpap

 

thanks for taking the time to share your story and I will look out for updates from you

 

carol

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Permalink Reply by Rachel Dickinson on May 6, 2011 at 11:43

@rock, ill look him up thanks.

 

@Carol its fine i dont mind at all! im sure i will be asking lots of questions too!

They have no idea why it failed, when he had the first one done in december, the surgeon didnt realise unit he got in there that it was so bad, he did both sides at this time, initally Emil did quite well, he was extubated in theatre and just had some low flow oxygen, he was iv steroids for a few days and he seemed to do pretty well, he was admitted again 2 months later for a polysomngarghy after been admiteed from the sleep unit he went for a scope and he noticed that the LM was coming back, and, there was a bit of scarring to his larynx, so he got rid of the excess and had a look at his tonsils and adenoids but they were small so he left them. He was attached to the sats moniter still and still having desats and bradys, he had a trace with the co2 moniter (its a litle probe that attaches to the ear i'll post a picture) he ws seen by the respiritory team due him still having a high co2 low sa02 during sleep they advised t's and a's removed and despite the ent surgeons (who i might add is an amazing surgeon and i trust him 100% - he gave my daughter hearing!!) saying they were small and he didnt feek it would help they went ahead and removed them, he never really recovered well after this, ive ecplained what he found above and detirioated, but when he ws put on cpap his whole self was so relaxed the tracheal tug the respiritory distress and the look of  'help me' on his face all went, his breathing was so settled his sats settled, heart rate stablisied and co2 settled. 

he has been on it at sleep times since. HE has had to have his pressure incresead and move to full face since been home but he is a different boy, he doesnt cry for hours in a morning when i get him up, his develpoment has come on remarkably, as he is no longer shattered during the day! 

With regards to the ng, he was due to have a gastrostomy in march as he too was failure to thrive due to the breathing problems and the submucous cleft, we cancelled this though as even tho he never progressed past first stage purees he had lots of added calories and managed to eat it despite him having nasopahrngeal imcompetance  (food collects in the space at the bk of his nose), he coped quite well as he had small meals with added calories but had them regular but when he had adneoids out this made the space larger and the first attempt at purees he chocked and aspirated so he is now nil by mouth, until he sees the nottingahm cleft team again he wont be re assesed for oral feeding, but the problem we have here is that the cleft team say repairing the cleft can make his breathing worse, so we are going round in circles at the minute. The ng too is a positive thing at the minute as emil is now growing, it was heartbreaking for me him having the tube as we had only just got rid of emmys, but, to see the difference is amazing, no more coughing with food, clear nose etc. 

HE has just got bk to the weight he was in june last year, he is very small but he has now started growing and we are almost on to a centile! a little bit longer and im sure he will get on the centile instead of his own little place below. How much does your little one weigh and height? Emil is 7.5kilos and 69cms at almost 19 months.

I realy hope psg goes smoothly, where are you having it done?

Rachel

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Permalink Reply by carol murphy on May 9, 2011 at 0:04

Rachel I appreciate your reply and will respond tomorrow Jaydon my 16mth has been poorly all weekend and its midnight so Im going to get some sleep will reply to you tomorrow hope you are all well x

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Permalink Reply by Rachel Dickinson on May 12, 2011 at 11:03

really hope jaydon is ok, thinking of u

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