Please I Need Your Help!!!!

Updated on April 19, 2007
N.J. asks from Jefferson City, TN
12 answers

Not to long ago I posted a question about my son who was having alot of breathing issues,everyone was so helpful here is what has been going on since,he has seen numerous docs about his breathing,in and out of the hospital for broncitis and more,one doc will tell me one thing and one something else,finally I had my pcp refer me to a respitory specialist who after being very attentive to everything I had to say concluded that he has refulx(had been treated for that in the past) and it had traveled up into his nasal passages causing scar tissue to form and make them very narrow and inflamed causing them to be sensitive to infection which leads me into him now having his 5th ear infetion(he is only 6mons)she said they are all connected(ear nose throat) one gets infected causing the other to do the same and then traveling into his lungs,also the x-rays revieled a little "fuzz"(asthsma) in his lungs which she says she has hopes he will grow out of. She also said he is a mouth breather which is very uncommon and she thinks he has started because he can't breath well out of his nose,this is why he had a hard time brestfeeding and a hard time eating out of a bottle for long periods,he is now on an inhaler every morning,singular and zyrtec every day,nasalnex every morning,prilocect-?(for reflux)every night, and antibiotics for his ears.He also still does not sleep longer than 2 hours at a time,we are hoping that will change soon.Do you have a similar story??Any advice for ways to handle this situation??It all seems so much to deal with,all these meds to give and percautions to take,I feel so overwhelmed! I am relieved she has somewhat pin-pointed the problem since other docs we have seen act like i'm crazy and say hes fine,or even this is just asthsma deal with it...but with my other kids managing the
house and pets and just everything I feel so stressed out,I know its not as serious as some conditions but I feel lost on how to deal with not having a perfectly healthy baby
My husband is supportive he goes to all the doc apts and such but he does work 50-60 hour weeks so hes not there when the baby needs meds or when hes not sleeping because he can't breath well or he wont let me put him down even when he is sleeping because he is used to being help so much from the times he has been really sick,and I can't let him cry or he can have an attack,so any other moms out there going through this?? Am I just crazy?? Thanks for any input.

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So What Happened?

Thanks to all of you,they have tried him on a nebulizer for the past 4 months before they switched him to an inhaler...went back to the doc today he still has an ear infection...the doc said we would have to wait 4 weeks and if it didnt clear up by then,then he would have to be put on a series of anti-biotic shots for another 4 weeks before he got tubes...My oldest had tubes when she was 1 and I dont remember her having to do that...

THIS [v] PART IS NOT AN UPDATE IT IS THE PREVIOUS QUESTION(S) I POSTED ABOUT MY SON,2 MONTHS AGO,JUST A LITTLE BACKROUND INFO IF IT WILL HELP.
(BACK IN FEB)
I went to the doctor today,the 3rd time in 2 weeks,because my son has been sick with what I was first told was a cold,I have been seeing the nurse pract. who told me to just give otc cold med,I told her I was very concerned about his weezing but she said he was fine that it was just "baby noises",well she was wrong I went in today and seen the reg. doc who was very shocked and said he had never heard a baby weez like that I explained to him that this had been going on long before he got sick but has worsened since,he also has ear infections in both ears and rsv,the doc explained that he thinks he has respatory distress and put him on 2 diff. meds for a breathing machine and antibiotics,he asked if athsma-? runs in the family my older children are fine and the only person I can think of that has it on either side in my little sister. Also neither my husband or I smoke,and it is not allowed in our home. To me(family even noticed)he has always had breathing problems of somesort,since day 1 at the hospital his lips turned blue but the nurse said it was brusing from birth{he was a c-section}then he spits up terribly and was treated for reflux for his 1st 3 months, Even before he got sick simple things seem to make him out of breath,ie...laughing to hard,eating a bottle without stopping to breath(sometimes while eating he jerks back and gasps for air),leaning forward while sitting and playing ect...I am so nervous about this I don't want to put him down because i'm afraid he will stop breathing,this being difficult because I have an 19 month old,if I do lay him down,however,he is elevated. It's so sad because he is such and even still a very happy baby,always smiling and "talking" and hes a big boy already 20lbs and 30in and on top of all this my poor baby has cut in 2 teeth!! If anybody has any advice or has had similar problems with their child any help will be greatly appreciated!!!Thank you-N.

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L.R.

answers from Auburn on

Poor baby and mom!
Have any of the doctors recommended nebulizer treatments? You can do them in the home about once a day to help him breath. If not, why not ask the doc about it.

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N.H.

answers from Memphis on

Have they removed his adnoids (sp)? that seemed to help my daughter a lot. She was having a lot of the same problems. I have taken out most of the carpeting in my house that also helped. Also when she turned three she to be sick less and less. Trust me - I sat for what seems like all of her life just holding her when she was sick.

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N.A.

answers from Montgomery on

Hi,

I feel your pain. My daughter had reflux as a baby (she is seven now), and vomited 20 or more times a day. She also had breathing problems, which her first doctor attributed to asthma. I told the doctor that I didn't believe she had asthma. I have a nephew with that condition, and I knew that her symptoms were much different, and she didn't 'wheeze' like those with asthma did.

Well, the pediatrician said she was the doctor, and she knew it was asthma, and prescribed use of a nebulizer 4 times a day, which I did, and my wonderful daycare owner did, until finally, I decided to get a second opinion.

The doctor I took her to next immediately diagnosed a nasal infection. Gave her a prescription and it cleared up right away. No more so-called asthma, and no more nebulizer.

It is good that you have taken your child to get more than one opinion.

My thoughts right now is that it is quite possible that your baby is having breathing problems simply because he may be allergic to your pets. If he has a severe allergy to pet dander, it is possible that it would cause a lot of his breathing problems, which have led to some of his other problems.

Another thing you might want to check on is the possibility that there is mold somewhere in your house, possibly in his bedroom. Some types of mold can cause very serious health problems, particularly in babies and young children. Mold can and does grow in many homes, and is not a sign that it is dirty or unclean. I would get someone to come out and check (a professional), it wouldn't hurt. The money it would cost is worth it to ease your mind.

Is your baby's crib located below a ceiling vent? One thing to think of is that the air is blowing directly on him, which may cause dust particles to go up his nose and in his mouth. Even the cleanest houses have dust particles, and especially when you have pets, even if the pets are not indoor pets, every time you pet them or touch them, you inadvertantly bring pet dander inside with you.

If it turns out to be a pet allergy, you will need to get rid of the carpeting and go with flooring and other things in your house that are allergy-friendly. There is lots of information on the internet about these issues.

I hope your son gets better soon. My daughter went through multiple hospital tests and a lot of medicines for her Reflux, including some which later was recalled and banned from being prescribed. Fortunately, I had seen a reaction to the medicine, and had taken her off of it myself before it was recalled, or she might have suffered permanent damage. She finally 'grew out of it' when she was about a year old.

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L.S.

answers from Huntsville on

Been there and done that with my daughter! I know how you feel! Your not alone and neither is your little boy. My daughter was in and out of doctors for "Bronchitis" and was constantly put on steroids "Orapred or Prednisone" until I finally said enough! I told her pulmonologist and allergist/immunalogist that I was going to B'ham or Vanderbilt and someone better refer me. She was on 6 meds a day, plus any meds from being sick and it was getting ridiculous and they were getting richer and our baby was getting sicker! She had a CT Skan done after I made the "threatning phone call" and it revealed chronic blockage in her sinus cavity. We were then sent to an ENT(Ear,Nose,Throat) doc 2 weeks later. He told me the same thing about acid reflux and recommended her adenoids coming out, sinus irrigation of the cavity and an immune defeciency disorder test (which is about 5 viles of blood drawn). So we did! Operation was a piece of cake, she almost immediately looked better and he said there was so much junk covering her adenoids and in her cavity - it was one of the worst cases his ever seen. I'm happy to report her asthma is now from chronic to minimal and she hasnt been sick with Bronchitis or Upper Respiratory Infection since the surgery! We did take her off the antacid just to see and she hasnt needed it. But I highly recommend Dr. Jasper Castillo with HSV ENT Associates. He has an office in Madison and HSV. I learned through this experience with her (3 years experience dealing with this) that the doctors work for you. She is allergic to cats so we did get rid of a cat. Also, her blood tests reveal that she didnt have any antibodies to Strepneumochocal viruses(Strep,Pneumonia, Upper Respiratoy Infections....) but she was given a shot so hopefully her body is presently building those antibodies. Her pediatrician said it is very common. Its given to them at 3, 6, 9 and 12 months in a form of a shot (Prevnar) and for some reason her body didnt take to it. But, good luck and I wish you the best. I hope I was able to give you some advice.

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L.B.

answers from Decatur on

I understand. My daughter and I both have asthma. She didn't get her inhaler until 2 1/2. They said she was to young. We were in the hospital 9 times between they age of 6 mos. and 27 mos. She had to have an oral steroid (my doctor gave me refills, have the 6 time in the hospital bc of the fact i needed to start them immediately when she started coughing and wheezing, and the doctor's office might not be open at that time.) pulmicort twice a day and albuterol breathing treatments every four hours. Finally it's been 17 months since we've been in the hospital. all we have now is singular and albuterol inhaler. She goes to preschool and plays outside. She is doing much better, but this time of year sucks bc of pollen and flowers etc. Hopefully your son will grow out of it, Bryley is much much better. She hasn't had to go in to the doctor since her 3 year check up. Our doctor used to see us atleast twice a month before. Good Luck.

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S.

answers from Memphis on

You are being such a good mommy to your little one...I know it is frustrating, but keep on top of the doctors. My friend's third baby had a lot of those same issues; his began with RSV but went into the same thing you are describing. You might want to look into allergies. She had him tested at around 7-8 months per her dr.s suggestion because he was still having all of those issues. He ended up being allergic to most everything, including his formula. So his body was producing all of the mucus and junk trying to fight the allergens off. She has to keep him on a strict "diet" but he is much better now. Good luck to you; get some rest when you can...

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S.M.

answers from Nashville on

Hi N.,
First of all, hang in there - you are doing a great job with your baby. My baby has suffered from most of what you are describing so I understand how overwhelming the illnesses and medications can be.

My son is 20 months old and we still use the nebulizer (alternative to an inhaler b/c my ped said he was too young for an inhaler so I'm surprised to hear your little one has one). Anyways, he gets Pulmicort in it every night which is a preventive medicine for asthma and asthma-like symtpoms. It works great. When his chest feels gunky and his breathing is labored, we give him Xopenex (it's like albuterol) through it also. I know he had to be on the Pulmicort for a couple of weeks before it started working. I don't know what med you've got in the inhaler, but it just may need some time to work.

Also, my son in on Prevacid for reflux. We've tried several meds before we found that this one worked the best. So if you feel like his reflux isn't under control, then ask to try a different med - they can built up a tolerance very quickly to them also.

We had to have Emerson's tonsils and adenoids removed at 14 months because they were so enlarged. He also had multiple ear infections but the big issue for us was sleep apnea. But since then, he hasn't been nearly as congested and not a single ear infection. Your baby is a little young for the surgery, but that's always an option later on.

This winter has been much better than last year. Things should get better as he gets older. Someone mentioned testing for allergies and that's not a bad idea. Lots of kids are allergic to things in formula so you never know.

Hang in there! It will get better and I bet once the ear infections go away, he'll sleep a little better. We couldn't let Emerson cry either because of so many problems/surgeries on his trachea but he finally slept through the night around 10-11 months old. Good luck and let me know if I can help you out anymore.

S.

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V.P.

answers from Chattanooga on

Wow! N., I am having a hard time reading this much info and I DO feel bad for you! Okay, just to let you know, I am a pediatric nurse, and to put this nicely, your child should not be officially diagnosed with asthma before the age of 2 years. Okay, but I'm not a physician, just FYI.
Also, if your child is having this many issues with allergens, "asthma", and ear infections (which can be triggered from excess mucous from histamine release caused by allergic triggers) if this were my child:
I would number one: get rid of the pets. I know this is hard, and you may ignore the advice, okay, some people would. I am only saying this because pet dander is a leading allergen in the environment, and you owe it to your child to do what is BEST for him, not the pet. It would also decrease YOUR stress to have one less thing to care for.
Number two: Your baby is on a LOT of medications for its age. Of course follow your pediatrician's advice, but may I ask where is your pulmonologist? How long has he been in practice? And does he specifically see pediatric population? Just wondering....
One more thing, I agree completely with the other mother that stated her infant was improved by removing milk protein from the diet. In fact, milk protein is a common allergen, and can cause increased fluid to remain in the ear drum, thus resulting in chronic ear infections. However, (and this is again my personal opinion) hold off on the ear tubes for as long as possible. My daughter had five by the age of one, and she had tubes placed, and we took her off cow's milk with some improvement.
She is now seven years old, has a permanent hole in her eardrum that was patched with surgery two weeks ago. If the patch fails, she will have another surgery to use some of the skin from her ear to piece over the ear drum. She also has chronic calcification in that eardrum, which usually doesn't occur until old age. Yeah. Tubes are NOT the end all answer to chronic ear infections.
Hope this helps,
V., RN

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J.D.

answers from Huntsville on

Hi N.-
I feel your pain. My son also has reflux and had 5 ear infections in 6 months before they put tubes in. Our ENT said that the two are directly related because reflux causes fluid to stay in their ears, which makes them prime for an ear infection. Both of my kids have reflux, so we've tried several meds. I agree with the previous poster- ask the doc to try a different med or increasing the dose. As kids gain weight, their dose can shift with even a growth spurt. There is a range of the dose of medication by weight, so you may want to ask if you are able to increase the dose. My son's gastroenterologist said simply put, you just are trying to make a happy baby volcano (spit-up). The reflux is still going to happen although medication may minimize the amount, the discomfort of refluxing, and the acidity (which is directly related to scar tissue). My son is also on Prilosec and has been since about 4 months old.

The biggest thing that made a difference early on for our son was that we figured out that he has a milk protein allergy. We switched to a hypoallergenic, amino acid based formula ($40 a can- like liquid gold). This change alone was dramatic- he finally stopped screaming and writhing in pain.

As far as ear infections- I don't agree AT ALL with what your ped said about waiting longer. Let me clarify, of course I'm not a doc, but I AM a parent, and you know your baby better than anyone else. It got to the point that my son was miserable more than he was happy. Ear infections affected his quality of life- his sleeping (FINALLY slept through the night at 18 months- 3 nights after tubes), eating, speech, hearing, overall demeanor, tolerance of big sis, etc. etc. etc. The list goes on and on. Our ped didn't want to refer, either, but I got referred and the ENT said the guideline for tubes is 3 ear infections in a row was plenty.

Something that really helps me even to this day is to measure out medication when I am the least tired. That way, it's ready to go when I need it. I also make little medicine rows- one for me, one for Dillon and one for Abby. That way the morning just goes much smoother for me. I am VERY careful about identifying the med by putting it next to the bottle.

I would still pursue the referral to an allergist in addition to the ENT. Sometimes alleries are seasonal, and you only need to give the meds in the spring, etc.

Good luck and if you want to talk more, send me a message.

Where are you? We're in Huntsville, AL.
J.

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C.E.

answers from Memphis on

I will keep him in prayer N.. I can imagine how tough this is for you. You and I have a few things in common. I have a 5yr old, 2yr old, and my 4mo old. I wish I can stay home my two youngest but I'm not successful when it comes to that.
Let's just keep your son in prayer and I will have my church family fast and pray for him at the same time you pray also the more will be stronger.
My heart goes out to him and your family but do not fret just keep the faith and hold on.
An ENT is pretty good with all that has happened to him.
You are not crazy, keep going with your gut feeling especially when it comes to your children. I wouldn't care what someone thinks of you, you are a GREAT mother. God will never give you anything that you can not bear. Stay strong and I will continue to pray for your son.

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H.F.

answers from Nashville on

I know first hand what your dealin with my son was doin the same thing he is on a neb. every 4 hrs and so on.. the ear infections my little one had 8 from nov-Feb so i took him to a ENT(ears,nose,troet) doc.. They put tubs in his ears and i use to be one of them moms that thought tubs was a wast of time but they are the best he has not had no ear infections or and bad colds since.. He was born 4 weeks early and now tomorrow we have surgery to fix some thing they doc done when he was born and put him on a ventalter.. They hit his trac and messed it up so now the wonderful ENT doc said he and 3 other docs could fix it but he would be in the hospital for about 5days.. So i would try goin to a ENT and see what they say.. Good luck not sure where you live but i am in nashville,Tn and would be more then happy to let ya know who ours is..

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T.

answers from Chattanooga on

Wow! You have a lot going on. When my son was a baby he had reflux and was on meds for awhile. He laso had several ear infections and had to have breathing treatments for awhile. It is a lot to deal with. If you haven't seen an ENT (ear, nose, throat) dr. yet, you might want to do that too. My son had to have tubes put in his ears because he had so many ear infections. I think the criteria was 5 or 6 ear infedtions in 6 months. He had tubes put in at 14 months and did much better after that. He is 5 years old now and no longer needs any meds on a regular basis (and hasn't for several years now). So, it does get better. You might want to consider elevating the head of his crib a little bit. This will help with the reflux and maybe make breathing easier too. You could also get one of those baby carriers to wear during the day. That way he could be close to you while he sleeps and you could still get some stuff done. Good luck!

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