I don't know if you will remember me, but I have a baby that we thought had asthma, and comes to find out, he had a vascular ring, and so it was repaired. Since then we have been in and out of the hospital. I think we are really close to figuring out what is left, and whether or not it is concerning. The baby is still very pallor, sometimes even bluish. But, his 02 is good when he is awake. What we have found, is that he periodically desaturates (oxygen levels plummet) to 80s, 70s, and he has even gone as low as 64% and 68% on two different monitors and many different probes. We have a printout and a download that shows he is doing this. More often in my paperwork, but the proof is there. Our FP was the one that ordered the monitors and specialty appts. But, the baby has been through many tests that doesn't show any explanation for his symptoms still the 02 desats have actually gotten worse than those that sent us there last time.
I have believed he has sleep apnea since it seems to fit, but the last study (done under duress) only showed "benign central apnea". And, our FP even agreed he may need another one. But, when she saw the downloads, she said that the machines can be very inaccurate, and that we needed to discontinue them because they were obviously making me sick. I had the flu after my 7 chilren got it. All I want is another sleep study. If they say that one is normal, we will just chalk his color to having slight compression of the artery around his trachea. And, pray that it never becomes a problem. But, since his condition is so rare, people seem to be out of their element with him.
Six other health professionals I have spoken to, and I believe these numbers are dangerous and explain a lot. But, there isn't much left to explain it. So, my doc wants to d/c the monitors. In my panic, I called the pulmo dr, since we had an appt for Oct 1, and they called me back in 15 min, and bumped up our appt for Thurs.
I am not putting him back in the hospital unless he orders another sleep study. I am fine if they let me keep the monitors. I have proof enough, and putting him in wouldn't do any good until he starts doing those numbers nightly. Once he is out of his element, he behaves fine, because he doesn't sleep deeply. It is very rare for a 9 mo old to have apnea, so he is either growing into it or out of it.
Anyone have any experience with sleep studies and sleep apnea? Position doesn't seem to make a difference, because if it did, we would just do that. And, the voicebox and trachea laziness has, is supposedly not enough to cause obstructive apnea, but I am sure I witnessed one episode of OSA, since my DH has that. Any advice would be great.
Thanks to everyone with such helpful advice. The baby has already had 2 tests on his heart, and so we know that is fine. I had worried about strokes, because of the sounds he makes at night, but the drs in St. Louis said he isn't symptomatic of that. And, he isn't regressing, just not talking as much as he used to, and it seems he does less noise when he isn't feeling well.
So, we went to the ped pulmo dr today, and he said it seems he really does need another sleep study. But, he sounds great for the vascular ring repair and breathing is great. He said that his immunity may be better, but that it isn't surprising that a baby with this condition have it much worse when it comes to wintertime and viruses when he DOES get sick. So, we just need to know that.
At first, they made an appt for Nov 20th, but my FP said that wasn't soon enough to call back. The pulmo ped did say in his notes that we needed a semi-emergency appt, so they bumped it up to Oct 16, which is good news. They will determine how quickly he needs it from that appt.
I finally got my FP to order the apnea monitor, and then she turned me into DFS. Of what I have gathered, she or the nurse did try to say that we were asking for "unnecassary testing", but they wouldn't follow up on that kind of complaint, so then they said we were giving him too much albuterol, when he hasn't had that med since before surgery.
So, the lady said she was bewildered by this call, and she will close it up soon. They have his records, that we have followed the docs to the T, and only wanted the apnea monitor until a sleep lab appt was made, and if they order a study, great. If they don't see a need, that is fine too.
So, we will be writing the senior dr and may have to move all of us if I don't feel the dr is safe.
Have any of the specialists you have seen been a pediatric cardiologist? The vascular ring is a congenital heart defect and I would hope that they have referred you to one. I really don't know what else could be causing his O2 sats to drop, but if he hasn't had a full cardiac workup than there could be something they are missing. Good luck with this and I hope they find out soon.
well, i'm a peds nurse so i wonder if it's a true spell? depending on where the probe is...we put ours on the foot, toe, or finger, usually the toe on one that little, and if they cry, roll over, eat, wiggle that toe in any way, get their diaper changed, it shows a desat that isn't a true desat. always look at the baby, not the monitor. but if he is symptomatic; that is, turning blue, anxious or irritable from air hunger (and not just from being messed with at night), gasping, blue or pale lips and finger/toenails, then yes, he is not getting enough o2. and if he has a fp, not a true pediatrician, i would change that immediately. like 5 minutes ago. pediatricans specialize in children and children with special needs...family practice dr's do not. and always go with what the highest ranking dr says...in this case, the pulmonologist. if he says continue the monitors, continue them. this is his life work and he will know better than the fp dr. good luck!
I am so sorry you are having these issues. I am an RN and would be petrified with the numbers you reported. I have a little girl who was having physical problems--nothing remotely close to your son's, but the docs kept telling me she would grow out of it. Nothing to do. She was just constipated, blah, blah, blah. I knew, not as a nurse, as a mother, something wasn't right. I had one doc tell me that there was nothing to do and basically dismissed me!! Well, I kept plugging away getting 2nd, 3rd, and 4th opinions. Come to find out, my daughter had a congenital defect that was FIXABLE! I finally found a doc who listened to me. He did 2 simple x-rays and tadah! we had a cause for her problems. Since then, she has had corrective surgery and now is perfectly normal. What I am trying to say to you is if you know deep down in your heart something isn't right, chances are you are correct. If your doc won't listen to you or dismisses you, get another opinion. Keep seeking opinions until someone listens and gives you an answer. Preferably, it would be an answer that if fixable, but at least an answer. Don't let docs blow you off. Be insistent. I don't know why they have such problems with ordering tests. It's not like it comes from their pockets! Anyway, I pray you get some answers from your pulmonologist. If not, go to your nearest major children's hospital--even if you have to travel a bit. Good luck to you. Let us know how your baby is doing. God bless!
Have you considered taking your baby to National Jewish Hospital in Denver?
It may be something to consider since the doctor's you have been seeing have not been able to figure out why his O2 drops and your FP seems to have shut the door on the idea that there is a problem from what you've said above. They have a number you can call and talk to a nurse about the situation to see if they even think it would be helpful to bring him. I called about my daughter because she was having a lot of problems this past year and we found out her trachea was collapsing and closing off her airway and they were very helpful. This is the link to their website with contact information http://www.nationaljewish.org/patient-info/become/index.aspx
Another thing I wanted to mention to you is that I have talked to several doctors this year that I know on a personal level who have all told me that it's much better to have young children, especialy those with medical problems, see a pediatrician when at all possible rather than a family practice physician because they are more likely to identify serious conditions in children from what they have learned through training.
please read as much as you can about apnea. It is not rare for a 9 month old to have it, rather rare that they diagnose it that early. Many scientist now believe that a lot of SIDS cases were the result of a child with apnea. Are you having the apnea test done at a sleep study facility or at the hospital? Insist that you go to an apnea center, not the hospital. Apnea can mimic stroke, heart attack, heart failure, can irregular blood pressure, and much much more. If this is what you think he has do not let anyone tell you different until you have another test. Let us know how the appointment goes today.
I don't have any experience with apnea or sleep studies but I can sympathize with you not being able to find a doctor that can figure things out. We're having a lot of problem with my 3 m/o right now and can't seem to find a competent GI doctor to help us. So sorry you're going through this! I know it's never fun and always terrifying.
Have you seen a cardiologist? My son has a congenital heart defect and his color is "dusky". His normal O2 is 77-83. I would request a echocardiogram as soon as possible! We see the cardiologists at Children's Mercy and are very happy.
I am an RN and have dealt with sleep apnea patients as well as my husband having it. I would recommend seeing an ENT doctor as well. Don't know where you live, but if in St. Charles area I highly recommend Dr. Karen Boone ###-###-####. She is great with children and gives 100% to her patients. Apnea could be related to his tonsils, adenoids, etc. I believe she would take a closer look at all info.
C.
Got the obstructive apnea info that is below online. My thoughts: The fact that the human growth hormone lets down while we sleep, it is important that your 9 month old sleeps, and continues to grow indicating enough sleep. As long as the obstructive apnea symptoms are not of a long duration and he continues to grow, it could be more exercise would get oxygen flowing and take some of the blue pallor down. Standing, balancing, tummy time with an exercise ball, walking is good when little hands hold your fingers. Mama will need a back, knee, or butt massage depending on how you spot baby.
Obstructive Apnea
A common type of apnea in children, obstructive apnea is caused by an obstruction of the airway (such as enlarged tonsils and adenoids). This is most likely to happen during sleep because that's when the soft tissue at back of the throat is most relaxed. As many as 1% to 3% of otherwise healthy preschool-age kids have obstructive apnea.
Symptoms include:
snoring (the most common) followed by pauses or gasping
labored breathing while sleeping
very restless sleep and sleeping in unusual positions
changes in color
Because obstructive sleep apnea may disturb sleep patterns, these children may also show continued sleepiness after awakening in the morning and tiredness and attention problems throughout the day. Sometimes apnea can affect school performance. One recent study suggests that some kids diagnosed with ADHD actually have attention problems in school because of disrupted sleep patterns caused by obstructive sleep apnea.
Treatment for obstructive apnea involves keeping the throat open to aid air flow, such as with adenotonsillectomy (surgical removal of the tonsils and adenoids) or continuous positive airway pressure (CPAP), which is delivered by having the child wear a nose mask while sleeping.
Remember that as a sleep deprived Mama, you can be a hazard to yourself and others and you won't even recognize it. You need HGH too. When baby sleeps, you sleep (no exceptions) Your ability to overcome these challenges will require your brain to be a healthy brain for the strength and self-discipline it will take to hurdle your way. Baby needs fresh air and deep breaths while exercising. You will both gain more energy from it. And both of you should take multi-vitamins as long as they don't interfer with medicines.
Have they checked his heart? My baby was having similar issues and we found out he has a heart defect that required surgery. You might want to have your doctor look into that if they haven't.
I really don't have any suggestions for you, but I just wanted to let you know that I can understand how you must feel. My baby boy is almost 8 months old, but at 8 days of age, he came down w/ a SEVERE case of RSV and spent almost a month on a vent in Children's Mercy PICU. He then spent a month at home on oxygen, and our pediatrician encouraged us to hang on to our sat monitor due to ongoing issues/concerns with his health (all resulting from damage due to the RSV/intubation). We've seen a pulm at Children's Mercy and he was really nice. We're going back in November for follow up. We have a pediatrician who is wonderful and I can call whenever I have a question or concern. It seems whenever my son sees a specialist, we end up leaving with more questions than answers and it can get so frustrating! My advice is to make sure you have a pediatrician you trust and trust your gut/heart. If I had not listened to that little voice in my head, without a doubt, my son would not be here right now. Best of luck!
Sorry no advice but a friendly understanding. My oldest had sleep apnea from 2 weeks until 18 months and then disappeared. We had monitors with us 24 hours a day. She was bluish at times also. At age 7, her fingertips, lips and toes went blue again and would sensation in her legs after sitting in her desk at school for any length of time. We had many tests done but no results. She is 19years old now and stil has sleep issues but never had an accurate explanation.
Good luck,
D.
I agree with what someone else said about the cardiologist. I would take my child to Children's Mercy since they are the best. Sometimes the monitors at home can be inaccurate at times but I would demand another sleep study because along with the O2 desaturation at night on the monitors you mentioned that your baby is blueish, suggesting that there is a problem. There are two types of sleep apnea and if you do any research online they are central sleep apnea and obstructive sleep apnea. With central apnea the signal to breath in does not make it to the proper place and there is no effort to take a breath. With obstructive sleep apnea there is something blocking the airway (extra skin or tonsils) and there is an effort to breath in. Both types can be treated but the treatments differ. I would demand another sleep study to figure out which one you child has and how to treat it. Just remember that this is treatable and they will need to determine if the O2 levels are dropping low enough to warrent treatment. My prayers are with you and your family. Please keep us updated with what happens.
My husband has sleep apnea and I believe he's had it since he was a child and has been treated for it within the last 5 years. He did not sleep well during the sleep study, but it showed up right away. I think another sleep study would be a good thing for your son and it sounds like there is definitely something underlying to cause his oxygen to go down like that. I also don't think sleep apnea in babies is that uncommon. I believe there are studies linking it to SIDS and because my husband has such a severe case my pediatrician gave me some info to read so that I can keep and eye on my 10 month old. Is there a way you could do a sleep study during his afternoon nap? Or by bringing in his crib? Those things might help him get into a deeper sleep while there. It sounds like you are doing everything you can so please just keep it up. Don't forget to listen to your heart. Momma's know when something is off. Keep trying to make them hear. We are behind you. Vent as often as you need to and good luck!
I know you have spoken to some 6 health professionals but were any of them specialists for this area, and specific condition? Not just some General Surgeon. If I were you I would be looking on the internet for some doctor that actually has dealings with the vascular ring situation, even if he's out of state. We had all kinds of problems when my son started having chest pains, shortness of breath and rapid heart beat, and none of the doctors we were dealing with were familiar with Pectus Excavatum enought to know what tests he should have had. I had to go online, research and then DEMAND that they give him the proper tests because of the problems with the chest wall constricting the lungs and the heart.
It is really imperative to have the right doctor, not just some surgeon who hasn't had any real experience with the condition. That being said, I know getting the doctors to do the right tests is like pulling teeth. I had to fight them to get them to get a stress test and not just a resting pulminary on my son. Because he was having the problems when he exerted himself physically, not when he was sitting on the couch.
Stick to your guns and make them give the sleep study. And try to find a specialist.
