My Son Has Downsyndrome and a Heart Murmur and Now He Needs Tubes for His Ears

yes do it, it will stop the infections and will in the end also keep him from loosing his hearing. Been there also.

Hi V...
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My son also has Down syndrome and is on his second set of tues. He had his frist set put it at 7 weeks old. He did great, and continues to do great! I would definetly recommend tubes to just about any child with Down's. Not only with it stop the ear infections, it should stop the runny nose, the cough if he has one and the upper respiratory infections if he gets those like my son did. I thought my lil guy had allergies too but the last set of tues he had placed they also took out his adenoids and he hasn't had a cough or a runny nose since! Tubes are also good for their speech development, since he has chronic ear infections that means he has chronic fluid too which will make him talk later. With all the fluid in his ears he hears things as if he were under water, and that's not a good way to learn how to talk. So even though it is scary having you baby put to sleep even for a few min. it is well worth it in my opinion.
HTH

My Daughter also has a disablity. She is going to have tubes in Aug. again for the 3rd time she has had over 5 ear infections since Feb. Strep throat about every month. When she had the tubes they were great. Hers fall out for some reason, but the surgery is simple. It really only takes 5 minutes. I know you are scared but don't worry it's for the best. Your child will be much better. make sure you get Ear plugs Even washing his hair can give him ear infections. We got a pair for 8bucks at my ENT. My daughter just went through 6.5 hour open heart surgery. trust me tubes are a breeze! We just got over a bloody left ear so bloody it looked like a foreign object was in it. So we may see you in the operating room. :)

Please don't worry. My son, who also had down syndrome had tubes put into his ears. It did take him longer to come out but I am REALLY glad that I did. He has not had another era infection since.
Little about me, I am a Mom of 4 the oldest being my 10yr old with downs, 6yr old girl, and 4 yr old twins (boy,girl twins)
please check out
www.changingmindsfoundation.com I have has him on this mixture and it is AMAZING!

My oldest son had ear tubes when he was 13 months old. It was a piece of cake. The worst part was when he was coming out of the anesthesia. He cried for about 30 minutes because he was unsure of why he was feeling the way he was. (This is what the doctor told me.) Also, it is VERY COMMON for children to cry when they come out of anesthesia. I believe this because between my two kids, we've been through ear tubes and two hernia surgeries and they both cried for about 30 minutes after coming out of anesthesia. Once the crying stops though, they are perfectly normal again. They can eat, play etc. It's really an easy procedure. By the way, after the ear tubes, my son never had another ear infection. Good luck with whatever you decide to do and I'm sorry that you have to go through this stress. I remember stressing about it too when it was happening to me.

Hi V.! Don't be afraid God is with you guys!
I agree with your doctor! Since your little one is getting ear infections do get tubes put in!! My little brother has downs syndrome and I remember he'd cry all night long because he was constantly getting ear infections. My mother spoke with his pd and she too strongly advised putting tubes in his ears. You have to keep in consideration the ears, nose, and throat are connected, so it's likely if it's not draining from his ear that is almost 100% why he is getting a stuffed up nose! Clean his nose with a warm wash cloth and if he lets you use a bulb syrnge to clear his nasal cavities. The last thing you want is for it to drain into his lungs and then him catch rsv (trust me, downs kids have a higher risk of rsv because of the e,n &t)
I would also talk with your pediatrician and see if she can refer you to an ear, nose, and thoat specialist. Another thing, if you haven't already, look up the Easter Seals for your local area. They were angels!! They helped us so much with my little brother! He had therapists for his motor skills and speech and they even had a special school they were sending him to and he loved it! You can also see if you can register with "Any Baby Can". My grandmother used to volunteer with this organization and they specialize in special needs families with counseling and therapy. It was wonderful.
You should look up the "Downs Syndrome Association" you can get alot of information for yourself and your family. My mother and brother are a part of this and they have recieved a ton of information on available resources for him. He gets to go to summer camps and everything now and he has sooo much fun (:

God bless you and your family, I know it's not always easy for the world to understand a Downs baby but they are so precious and so loving! I pray this helps you out a little bit!

Blessings

Hi V.. My son had tubes put in at 9 months old (5 ear infections over 2 months prior). I was terrified to have him under anesthesia so young but everything was fine. The procedure itself only took about 15-20 minutes. He is 3 1/2 and his tubes finally fell out about 6 months ago. He did have a couple of ear infections while he had the tubes but they were minor and antibiotic ear drops cleared them up. Goodluck and Godbless!

Do it, do it, do it!!!!!! It's a very common procedure and they put them under with a "twilight anesthesia." There is very little given because they are only under for 5-10 minutes. If it makes you feel any better, have the procedure done at a pediatrics surgery center where the anesthesiologist only deal with kids. We are SOOOOO glad our daughter got her tubes. It was an on going battle with fluid in her ears. Being on antibiotics all of the time isn't great for their bodies and he will finally be able to hear consistantly. On a side note, have you considered putting him on probiotics? ...I say that because it sounds like he's been on his fair share of antibiotics. You can buy the powder at HEB and mix it into his drinks. My kids have been on them for over a year and I feel like they have been much healthier since. Good luck and don't stress about the tubes. They are a great thing!!

It is a super fast super simple surgery and my two kids have been better than ever since tubes- don't be afraid - do it for that sweet boy of yours! You will be happy you did! Seriously it is so fast you won't have time to finish your cup of coffee!

Our son has had 4 sets of ear tubes. He was about 2 yrs. old, the first time. Yes, it can be very scary. It has been well worth it. We didn't want to risk, him having permanent ear loss, speech problems, and a hard time in school.

Let the nurses know, that he has a heart murmur. They are good about asking about any present health conditions.

Good Luck.

so glad to hear the murmur seems to be healing. our son had tubes at 10 months. i know its super scary but it really lasts for ten mins! you give him a hug go to the waiting room and ten mis later they ask you to come get him. he will be very cranky right when he wakes up. the tubes arent a cure all but they did help tremendously. i would also take him to get a second opnion about the allergies. God bless.

Hi V.-althought my children do not have tubes I have many friends who's children do and they have worked great. My understanding is that this is a very common procedure. Dr. Joe Edmonds is a great doctor here in Houston and has put tubes in many friends children's ears.

Hi V.,
I am an old mother of two very young kids. I had mine late in life. I can hear you and know what you are going through. My oldest son is 6 years old and has autism. He had been congested most of his life until I had an x-ray done that showed his adenoids were very enlarged. The ENT doctor was fantastic. He works on special kids a lot and one of the other doctors at the surgical center also has kids with autism. Anyway the surgery went great as the staff were wonderful. The gas was candy sented and was not frightening at all for my son. The doctors and nurses were nice and very experienced. I was very glad that he had it done. Have you had his soft tissue x-rayed to see if it is his adenoids? It may be worth it. My son is so much better now. He is not at all congested.
We loved the doctor and I have no regrets of having it done.
The staff will let you stay in the waiting area until he goes in and usually until he is asleep. It is harder for us than for the kids mostly.
Good luck.
W.

i cannot stress enough about how wonderful ear tubes are. my son was on antibiotics for 11 months straight until they recommended them. as soon as he got them, he started to walk and talk and no more waking up at night with painful ears. don't be scared--your son will be in good hands. and he will go home a happy and healthy child.

Hey there V.,

My daughter also has down syndrome, she suffered with ear infections also and received her first set of tubes at 18 mths of age and then again at 2 1/2 yrs old. We noticed an immediate difference in her "hearing". We had not realized that she was not hearing lower tones....

She was out for about 10 minutes but was somewhat "punch-drunk" for a couple of hours. I was also terrified for her to be put under but like I said it was just amazing for her.

Good luck,
Debra

My son had tubes placed in both ears in March. He was 9 months old at the time. I always thought he was a happy baby even with all of the ear infections he had prior to the surgery. But what a difference there was in him by the time we made it home from the surgery. (It did only take 10 minutes) My son was so much happier compared to before. It was amazing how much relief he must have felt from having all that pressure removed. The ENT said it was some of the worst ears he had seen in awhile. His ears drained pus for about 4 days afterwards.

Also I noticed that your son has Down's. I didn't know if you knew there was state programs out there that your son might be eligible for that would provide him with nursing car, therapies, dental, Medicaid, help for you with him as he gets older etc. If you are interested, let me know and I'll give you the state link. I work for a company that provides those service through the state. There is a waiting list for these, but definately worth it. The best part is it is free to you and if he gets in one of the programs, it is his for life as long as he is in Texas.

my lil girl just got her ears done in may an lord im tellin you that im so gratefull!!!!!! she has really bad allergies so does me her father her grandmother an THE DOG HER BFF lol... shes only 15mth the procedure is olny 30 if even that long.. i will tell since may i have not had any problems an she was gettin them almost every other month!!!!

You are absolutely right--your special son is a huge blessing. You will see that more and more as he develops. I know that for a fact as we were blessed with a special needs child 27 years ago, and I have never regretted that he was born "special".

As for the tubes, just be sure your doctor is aware of his heart murmur, even though it is closing up. He may need to take some antibiotics before the surgery. The surgery, itself, is fast, but the results are ENORMOUS! (in a VERY good way.) You will be amazed at how your child's temperament and reaction to his environment will change for the better. He will be hearing you more clearly, and he'll be so happy about that! My son had tubes put in when he was about two, and they helped him so much.

Don't fear. Trust your doctors--they know what they're doing. Also trust God--He especially knows what He's doing giving this special little boy to you.

My heart goes out to you V., and your little boy. Having repeated ear infections is not fun.

Children have very small ear and sinus passages. Simply because they have smaller heads. This means it is easier for them to get blocked and suffer consequent infections.

I highly recommend you take your son to a cranial osteopath. Osteopaths manipulate systems via our nerve endings on our skin. It is very gentle and perfect for children. It is totally non-invasive. You could probably even avoid the pain of surgery this way.

Make sure it is a CRANIAL osteopath, not just an osteopath.

This is not some weird type of alternative medicine with no scientific validity. Osteopaths train at recognized universities, such as University of North Texas.

Check for allergies first!

I know you've received a lot of great advice, I just want to add my 2 cents. Even though babies with Downs have more specific health concerns, ear tubes are a very routine procedure. Yes there are always risks, but sometimes it helps to know that this is a procedure that is done all the time with few complications. Make sure to ask the ENT or nurse any questions you have concerning the procedure.

Good luck, and I'm sure it will go smoothly and it will definitely make future issues with his ears better!

Do it.. Ear tubes changed our lives. Our daughter was always ill with congestion. It was awful. The fevers were the worst. My husband really did not want her to have the procedure. He did not like the idea of anesthesia. He said she just seemed too little. I knew she needed them, but my husband hates hospitals. When our daughter lost almost all of her hearing in one ear, I showed the results to my husband and then he agreed we just had to do it.

We gave him a valium and had his mother there with him during the procedure. Our daughter did great and my husband survived with out having a stroke. As parents, we just have to do what is right for our children. We have to find that inner strength. You can do this. Our daughter quit having all of that congestion. It changed our lives. My husband admitted he wished he had agreed to the procedure earlier.

I am sending you strength. Your child will do great.

A good friend of mine has a gorgeous little angel girl that happens to have Down syndrome. She used to ALWAYS have a runny nose. My friend ended up putting her on Zyrtec and taking her off of cow's milk and giving her Soy milk instead. After a couple of weeks of being on the allergy med and soy milk her runny nose cleared up.

I do have three nephews that had tubes for their ears. Afterwards my sisters didn't complain so much about their kiddoes being sick with another ear infection all the time. Good luck to you. God bless you and your angel baby!! Yes I truly believe that those with Down syndrome are God's angels in disguise.

The facial structure of children with Downs leave them ESPECIALLY susceptible to ear infections and other associated congestion. I had a hard time making the decision myself, but the surgery was the best thing for my daughter. You will face many more challenges with your special child...take the easy answer this time!

One thing I want to say about allergy meds...they CAN cause behavioral changes in some children. My daughter has been on singulair and zyrtec and within 36 hours of starting I see distinct changes--it is like my girl has been abducted by aliens! Just something to keep in mind if you see any changes.

My daughter too has Down syndrome. She's eight months old. She has chronic nasal congestion and I foresee us having tubes at some point as well. Their ear canals are just smaller that other kids. Kids tend to have short eustachian tubes anyway. My biggest fear of tubes is just keeping water out of their ears afterwards. When she hits four or more infections a year, we'll be getting tubes. Speech development is a hurdle we face with Down's and fluid in the ears is also a hindrance. We certainly don't want to add any reason for delays.

The tubes will be greatly beneficial and I think y'all will be glad you did it in the long run.

My niece and nephew have both had major issues with ear infections and had to get PE tubes. It was a good thing for them. Both constantly had pain and fluid on their ear drums making it to where they couldn't hear. Since they had the tubes put in they haven't had any more ear trouble. They do have to wear ear plugs even in the shower though. It sounds like your son does need the tubes. His ears might hurt more than he can communicate to you. Also with that many infections it can cause permanent damage. I'm glad that the murmur is healing. I pray that God guides you to the best decision for you darling boy!

My little girl had tubes put in her ears on May 5th. The procedure was very fast, the nurse took her and Dad and me to the back to get her vitals and stuff then they gave her some liquid medicine to make her sleepy. She layed down, they took her to the back back and put the IV in AFTER she fell asleep (i liked that), and hubby and i walked in to the waiting room and like 10 - 15 mins later they called us in to the recovery room where she was sitting awake! she was still a little sleepy. Daddy carried her to the car then in to the house where she slept for 2 or 3 more hours but all in all...it was worth it. she is 8 now but i think she has had at least 6 ear infections in 1 year and at the most 14. And she has not had any since the surgery so I am glad we had it done