Hi! I'm so sorry you are going through this. Is the asthma doctor a pediatric pulmonary specialist? Even if he is, I think I would be looking for another one. It doesn't sound like this one has your DD's asthma under control. You can call the local Children's hospital to see who they recommend.
Is she nebulized with albuterol? I would ask that she be switched to xopenex immediately. It works better (IMO), lasts much longer and would probably help her sleep better, plus it is much easier on the heart (which is why she should be on it in the first place).
The ENT is another good place to start. I'm fairly certain that my problems keep re-occuring because of sinus issues. I'm going to see my ENT on Monday.
On the subject of white/tan BMs. Since the liver tests came back fine, I would say to look at what she is eating/drinking. Gummi bears can cause that and so can certain juices. I found out about the juice first hand, after I took my DS to the ped for the same reason. They did blood work to test his liver etc, and it came back neg. I went home and looked at everything he had to eat and drink for the previous day or two. That's when it dawned on me that he had been drinking juice boxes that I had not purchased before. Juice boxes went away and BMs went back to normal. From now on, only the neon blue juice, at least then I'll know why DS's BM is blue . :D
Hi again! If they haven't done a CT scan of her sinuses, they really should. I have had lung infections on and off (mostly on) since Oct/Nov and finally had an asthma attack in Feb because of one. I didn't know I had asthma before then. After months of antibiotic treatments etc, my pulmonary doc ordered a CT of my sinuses (even though I have no pain, pressure, fever etc) to try and figure out why I kept getting infections. Lo and behold, I have sinusitis. Now I go in to the ENT on Monday to see where I go from here.
As far as you DD, honestly, at this point, I would be looking at taking her to a center of excellence for pediatric asthma/pulmonary treatment. Do you know of one close to you? If not, you could contact the local hospital or perhaps do an internet search to find one.
When are her results coming back from the allergy testing? I think that might go a long way in figuring out this problem too.
Try not to panic. I know how scary it is to have a sick child and to feel helpless when they are sick. It will get better though. You just need to find the right treatment and doctor.
On the albuterol - all I know is that is harder on the heart than xopenex. When I was given albuterol via nebulizer it just caused me to have heart palpitations and the shakes. It really didn't even help my breathing. When they gave me xopenex, it helped immediately, lasted longer, and I didn't have and tachycardia or shakes.
This forum is excellent with great people. Thank you everyone for helping and a little update.
We seen a new asthma specialist yesterday. They changed her albuterol to xopenex, her flovent to pulmicort 1mg twice a day, put her on nasonex, and patenol eye drops.
the other meds she is on:
prevacid 15 mg
singular 5 mg
zyrtec 1 tsp
he is going to do skin testing for allegies and wants to check her IGG abd IGM to mycoplasma pneumoniae. Not really sure if I think she has that. From what I have read it is pretty short and her asthma has been out of control for a very long time.
I haven't got her most recent blood work back and hoping to get it soon.
But this doctor said her eyes are very irritated and she appears to have allegies, sinusitis and reflux.
I feel like I am getting somewhere.
How long does it take for pulicort to work. He feel she wasn't getting any of the steroid from flovent. She is too young. That could be a big factor.
babiespalace - talk to her ent on monday regarding sinus flushing. Many swear by it. I do it, but I think I am not doing it correctly, so I will be talking to my ent on monday myself. Basically, it is using saline or some other solution (there are many "recipes" on this board) to flush out the sinuses thus clearing out infection and keeping them infection free.
If your DD is only seeing a pediatrician you need to find her a pulmonary specialist immediately. General peds as well as internists (IMO) do not have the knowledge base that specialists have. Their focus is too broad. She should be followed by an ENT, an allergist and a pulmonary specialist. At least that is how I feel as far as my own treatment is concerned. Heck, I also go to an endocrinologist to boot.
I'm glad she is on xopenex now. I think she will get a lot more relief with it. As far as the pulmicort - I know they say up to a week or two, but I believe that it could be as little as a couple of applications. I was on it for a while before switched to advair. Honestly, I think I'd rather be back on the pulmicort.
Have you seen any improvements with the latest med changes? I hope she gets some relief soon! You too! Keep us posted!
Babiespalace - I know how frustrating dealing with doctors on your child's behalf can be. My DS was a micro preemie, so needless to say, even 7 years later, I'm still dealing with different specialists and therapists daily. What you need to keep in mind is YOU are the customer. Some docs (and it sounds like this ENT is a prime example) have developed God complexes that make them think that they are doing you a favor by seeing you. When I go to a doctor like that for myself, I don't go back a second time. The problem is for child specialists you are limited.
Anyway, I think tubes are a good thing for many reasons, and if your DD is having drainage problems this will definitely help keep her from getting ear infections on top of everything else. Also, I agree 100% with BYHOPE - get her to a pediatric pulmonologist now. Don't wait to find out if the ENT is right - that just takes too much time and she needs relief NOW.
Do you nebulize her with the xopenex before bedtime? I'm also not a medical expert in any way, but my BF's 2 son's both have asthma and when they are having problems she was told to nebulize before bed to open their lungs up.
Did the ENT say anything about a decongestant? You might want to try some OTC children's antihistamines and decongestants to help dry her out a bit.
One last idea - Is there anyway to prop up the head of her bed at night? I think this would help as well. When I had really bad problems earlier this year, I found propping myself up helped me breath, and therefore sleep, better.
My baby has started on xopenex last week and I give it before she goes to bed, then I give her the pulmicort about a 1/2 hour to hour later. Because I know she will start will breathing hard and wheezes. It doesn't seem to help during the night and I can only give it every 6 hours. No one has recommened her being on a decongestant, but I did have her on one and she finished the whole bottle and I figured it wasn't working. I prop her head up every night about 30 degrees sometimes higher. It seems that she breaths the best on her stomach. Not that that says anything.
I am so frusterated-why can't I get any answers from these doctors. No one looks at the big picture. I am really starting to think her reflux maybe the cause. I don't know what else it could be.
Her ped recommended he see the ENT to look at her vocal cords and throat for deformaties, or some kind of obstruction. When he asked why I was there and that I should have seen all these other doctors prior it took me off gaurd. How was I supossed to know that?
What should the ENT be doing for her? Because I have no clue. I told him she sneezes yellow drainage and thought it was a sinus infection, but he was not worried at all about it and didn't put her on anything. Is that normal. Doesn't yellow drainage mean infection?
You guys are great. I have learned a lot being on here and want to thank everyone for helping me.
Her surgery is schedualed for next thursday and they said recovery will be 5 days at least.He said it should help her breathing at night, but he can't guarentee it, because he isn't sure what is causing it. :o( I am so wore out and scared every night that she is going to stop breathing and not start again.
How common is that? She always starts again, but it scared the heck out of me.
If that is all they have you doing then you are in SERIOUS need of a pulmonary specialist for her asthma.
On a good day here is my daughters regiment: (when she's not sick and taking an antibiotic) This is just our normal day to help keep things under control
Morning:
Zyrtec - 1 tsp
Sudofed - 1 tsp
Prilosec - 1 capsule emptied into yogart or applesauce
Xopenex + Atrovent in nebulizer
When our pulmonary doctor added the Atrovent it really helped my daughter
Flovent - 4 puffs
Mid Day:
Sudofed - 1 tsp
Zantac - 1 ml
Nighttime:
Zyrtec - 1 tsp
Sudofed - 1 tsp
Zantac - 3 ml
Singular - 4mg
Flovent - 4 puffs with aerochamber
Xopenex + Atrovent in nebulizer
Now that's a good day, here's what we add when she's actually coughing a fair amount and I hear some wheezing:
Xopenex every four hours
Atrovent every eight hours (so every other time I give her a breathing treatment I give her the Atrovent)
Here is a bad day and were calling the doctor because I really don't want to end up in the emergency room at night:
Xopenex every two hours
Atrovent every four hours (again, every other time she gets the Atrovent)
If we have been fighting an attack for a while and it's getting worse, if her respiratory rate is greatly elevated and she's having difficulty breathing then here's what I do:
Xopenex 20 minutes later I give Xopenex and Atrovent
20 minutes later I give Xopenex again.
If she doesn't show improvement then we are on our way to the ER. To be perfectly honest I'm on my way to the doctor or ER before it gets to this last stage but the doctor said we needed to have a plan just in case.
I haven't had to give her treatments every two hours in a while but I really believe it's because we have her allergies and reflux somewhat under control.
Call that Pediatric pulmonolgist today. Good Luck and keep me informed, who knows you new doctor might find the cure and I want to know if they do.
I find it interesting that several people have more than one child with the same problem. I have a 4 1/2 yr and a 2 1/2 yr old and they both have asthma and chronic sinusitis. My youngest is much worse. She's been hospitalized 8 times where my oldest one has never been that bad.
Babygirl66:
By the way, the Albuterol can make children hyper and jittery. If you find your kids having trouble with it, ask about Xopenex. It's basically Albuterol with out the bad side effects, it's been great for us. Especially when you have to give it every four hours. Xopenex doesn't raise the heart rate like Albuterol does.
This is the first month my daught hasn't went to the ER. She was going about every 2-4 weeks. She had two hospital admissions also. Once for severe asthma and the second this year for her uncontrolled asthma and pnumonia.
I have been waiting for the new asthma specialist to call back. I called him yesterday, but he hasn't called. My daughter is starting to get worse again, and I ask him on voice mail what I should do if I should try something else for her acid reflux, decongestant?? I have no clue. I really had faith in this doctor but now I am not so sure. He was supposed to call today about her lab work that came back. So, of couse like always I don't know what to do. I don't have any asthma action plan-no one ever made one for me. All I know the Xopenex he said no more than three times a day!! And he told me not to give it unless it is an emergency. Well I consider every night an emergency-because her lungs wheeze almost every night. The other last night-she was wheezing pretty bad and had a lot of crackles in her lungs. She cleared a little. Now you can hear all the congestion in her lungs.
She sees her ped tomorrow so i'll see what they say. Her surgery is thursday-so hopefully she will be stable enough to go through it. I am really scared and feel really bad she has to go through this. I just hope we aren't doing this for nothing.
I'm in shock!!! The doctor actually told you not to use Xopenex more than three times a day? K gets Xopenex twice a day no matter what because it helps keep her under control but when she's having trouble she can get every two hours that's 12 times a day. You really need that Pulmonary Specialist, I think you'll start to see an improvement if you can find a doctor that will give you the medicine's you need to help your daughter.
I'm sorry but Xopenex only three times a day is baloney. I know better and my daughter is 2 1/2 so they can't tell you it's because of her age!!! From what you've described on the board here my daughter 1 1/2 years ago sounded just like yours. It does get better, I promise but you've got to find a doctor willing to help you get there. A good pulmonary specialist will definately help.
Since meeting the other parents online with children that have asthma and knowing first hand how hard it is to get doctors to take you serious and actually help, I have seriously thought about going back to school to be a Respiratory Therapist so I can help educate other parents and learn more for my own two children that have asthma.
Shelly, I'm here for you if I can help with anything. God Bless You!!!
Thank you so much. Last night she actually had a good night. Tomorrow is her surgery. I am so scared about it. I called the new asthma specialist 3 days in a row with no answer. I feel like this is helpless. And I liked this doctor. I am almost out of the nasonex and I called him because the one night Melanie got so bad she was wheezing and crackles and I asked him what I should do. Should I give the xopenex or what. I asked if this could be from her acid reflux? And he was supposed to call and tell me what we need to do with her lab results. That was on friday he told me he would call on tues. Now it is wed. and I have no answers and no help from the doctors. I feel like I am at the old asthma specialist again. No one ever calling back-no asthma action plan, nothing.
To my knowledge none of those would cause constipation but everyone is different so I suppose it's possible. I would think the Amoxicillian would cause diarehea if anything.
You know I've never got a clear picture in my head of how to tell from the drainage whether it's infection of just mucous. I've always heard if it's yellow/green then that is a sign of infection but I don't know for sure.
As far as the nose culture that was done by the ENT at the same time they were putting tubes in her ears for the third time. They had to put her to sleep to do it so they just decided to do the culture when they had to put her to sleep to put tubes in anyway. This way she didn't have to go under twice. That's why I thought if they were going to take her tonsils out that would be a good time.
Be careful on the Sudofed, don't give her too much. The most I give it to K is 3 times a day. 1 tsp x 3 times daily. I guess it's like anything else you can get too much of a good thing.
P.S. - If your not using Atrovent for Melanie, ask the doctor about it and see what he thinks. It can use it every other time you use Xopenex. It has really helps Karly.
Thank you. I don't know why I didn't think of that.
I am sitting here and I just listened to her lungs and she has the sonorous rhonchi sound again. I never asked if I should treat it with xopenex or not. The info I found called it a mucus plug in the upper airways, but it sounds all through her lungs. It doesn't seem to help when I give the xopenex.
However the doctor feels it is her aspirating nasal drainage. I do keep her proped at night and sometimes it helps. I think I am going to try to call tomorrow and see what he says
I've never heard that from any of our doctors. Xopenex is basically Albuterol that has been altered to reduce the negative symptoms like raising the heart rate and causing the jitters. I have heard that oral steriods like Orapred can stunt a childs growth if given over a very long period of time, but short 5 - 7 day courses don't have long term side effects unless done repeatedly.
Then you have to look at it another way. If you didn't use the Xopenex or Orapred (when needed) she would be in worse shape. Sometimes you just have to do what you have to do. I know my mom kept stressing out over the Orapred but we didn't have a choice. She was wheezing terribly and the only way to stop it was with Orapred.
Hi Shelly, I don't know why they told you to wait either, maybe because he wanted to see what her sinuses look like completely antibiotic free.
Who was this anyway? The asthma doc? Did you find a new ENT? If you haven't, you should call for an appt now. It takes time to get into see them, I wouldn't wait to talk to any other doc about it. Then call back every day to see if they have any cancellations. That's how I got in to see my current ENT. My first appt wasn't supposed to be until July 7. I called the next day and got a June 24 appt. The next day I got a June 1st appt!
Albuterol and even xopenex to a lesser extent are hard on the heart. Over time it can be damaging (at least that is what the respiratory therapist at the hospital told me). That is why it is so important to get this under control where she has fewer and fewer episodes that require her to use them.
BTW - I can't remember if she is on any type of decongestant or not. If she isn't you may want to try giving her some children's sudafed before bed to see if that helps. I have found that I need to take it constantly to keep my sinuses from draining into my chest, especially at night.
I might have said that wrong. I read it on the enet somewhere, but I may have interpreted it wrong. Now I am thinking maybe it ment there is more of a chance of fatality using more xopenex, because the asthma is out of control. I am not sure but I can't find it now.
Melanie isn't doing too well tonight. She is wheezing. I am giving her xopenex now and hopefully it will help. She is breathing weird.
CT scan came back today and the asthma doc called me. Her CT scan showed changes in her sinus and adnoid cavity. I don't understand that since her adnoids came back. Anyways he said she has a severe bacterial infection. I am guessing in her sinuses. So-all of the infections since October have been secondary infections from this. That is why she isn't getting better. I started Omnicef today-and I hope it is going to work. He said it was pretty strong and he is going to keep her on it for a month. I am not sure what will happen if it doesn't work.
He came up with rhinosinusitis and he said allergies are the trigger, but I don't know how he knows when they haven't found any allergies. He said we may not find the allergy. I asked if we could test for chemicals and he said there was no way to test for them. I pray this works. I am so happy we finally are getting somewhere. And if it wasn't for you guys my little baby would still be sick and no one really doing anything!!! Thank you guys so much-
I'm online tonight if you need anything. I am so glad you got the CT. It sounds like the way he says he see's changes in the adnoid cavity is that he is seing they are gone but that's just a guess. At least you've got down to the diagnosis of sinusitus. However I'm sorry to here Melanie isn't doing well tonight.
What exactly do you mean she's breathing funny. Have you heard the term retraction? Is that what she's doing? Retraction is when you can look at her tummy and see it basically caving in and out because she is gasping for breaths. You can also normally see it in the front of the neck too. If this is what you mean then don't wait to long before you take her to the ER, especially if she doesn't respond to the Xopenex. Have they ever given you a prescription for Atrovent or Ipatropium Bromide. Now is the classic case time to use it along with the Atrovent. With Karly it really helped pull her out of an attack a few times. It didn't work every time but sometimes it did. Atrovent is the brand name and ipatropium Bromide is the Generic name.
I'll keep my computer on and check back in a little bit to see if I can help.
I have just read the posts and want to offer my story. I have been through all the same treatments with my son: Zyrtec, Singulair, nebulizers with albuterol, xopenex, countless antibiotics, vaporizers, dust-mite proof bedding....you name it....we had CF testing, ct scans, x-rays and it goes on until one day I went to a new pediatrician. My son had constant coughing, wheezing, nasal drainage, choking on phlegm....barium pudding like stools and I was nowhere. Then this man looked at him and told me something that no other doctor or specialist had mentioned. He said "This boy is allergic to dairy" Immediately I took him off cow's milk, cheese, yogurt, butter, eggs etc and within four days it was as if he had never been sick. Of course I am thrilled but I am so BITTER AND ANGRY that no doctor or specialist before had even entertained the idea of him being allergic to dairy. My neighbor who has a 3 year old daughter with asthma is doing this also. I know it may not be the answer for everybody but darn it I have spent so many anxious moments, days and nights fretting for my boy...I hope this helps someone out there. Do the research on dairy....some of it isn't pretty.
I am Matt's Mom. I have been reading through this thread and everyone's life sounds like mine. My son is seven. He has had his tonsil's out and adnoids and one sinus surgery. We are gearing up for another one. He has severe asthma and has tested positive for m470v polymorphism. Some doctors acknowledge this and others don't. I feel so helpless and every time my son coughs and wheezes I get a knot in my stomach like I wish there was something else I could do for him. He is currently on Flovent, rhinocort, singular and xopenex. Last flair up they added atrovent and dexa methosone. He also has cushings syndrome due to all the steriods. Now they want to test his insulin levels. I almost wishe they could help me with something. He has frequent acid reflux as well. Does anyone find a particular climate better than others?
Thank you so much. Just by reading your thread I feel like I am not alone.
We have always had a problem with Karly sleeping thru the night, even before we knew she had asthma. Looking back I realize that's why she fussed so much but I didn't know that then. I was up about every 2-3 hours. She was so sick between the ages of 1 - 2, if we weren't in the hospital, I was up giving breathing treatments every four hours and I was, like you, exhausted.
I have found that Karly sleeps better if I give her a breathing treatment with the nebulizer either before she goes to sleep or even sometimes after she is asleep. This allows her to breath better, therefore sleep better. If I just use the inhaler it doesn't work as well. I definately recommend the nebulizer.
Xopenex + Atrovent (It takes about 20 minutes but it's worth the extra time)
I also highly recommend the Xopenex instead of Albuterol. It doesn't cause the excessive heart rate and it doesn't give you the jitters like Albuterol.
I do use the Albuterol with Karly sometimes, but I try not to use it at night, because it hypes her up and makes her restless.
Karly's illness has made me so aware of health issues that I'm going back to school for a degree in Nursing. If you had asked me 10 years ago about being a nurse, I'd have told you no on the spot. It's funny how your children can change your mind.
Monday I took a test in Anatomy & Physiology I and I'll find out how I did tonight. I am determined to do this. I told my husband if I like it, I might even go on to be a Nurse Practiciner. (I might ought to learn how to spell it first)
I also use the xopenex. Matt hates the albueterol. Healso hates the neubulizer. He would rather do the inhailer any day but I find the neb. does work much better. I know what you mean about being up every four hours with the treatments. Matt was really sick over Christmas and I had to give the xopenex then wait twety minutes and give the atrovent- no fun.
I think it is wonderful that you are going to become a nurse. My siter is a nurse which helps me ask the right questions. I am a kindergarten teacher. I love kids and enjoy my job as well.
That's the first time I've heard you can't mix Xopenex and Atrovent. In fact none have my doctors have ever told us otherwise and they know I do it all the time.
In fact, now that I think about it, they have prescribed it together. When Karly is really bad here's the regiment our specialist prescribed
If no significant improvement, take her to the ER immediately.
We've had to do this several times. If anybody else out there has any information on this please let me know. I will definately be calling my doctors office to check what the results of mixing the two might be.
I have been told not to mix her Pulmicort with anything Xopenex/Albuterol or Atrovent.
I will call my pulmonologist as well. I was told not to mix xopenex with anything. When Matt is really sick and they add atrovent they tell me to wait between the two treatments. Therefore he needs to do two seperate treatments. What are the benefits of the hypertonic saline?
