SCARED-please help, 3 year old asthma out of control?
Hi I had a question about my 3 year old daughter. She has pretty severe asthma-at least I think. She sees a asthma doctor although I don't think he is listening to me. Most nights my daughter sounds horrible, wheezing, crackles, and rhonchi throughout her lungs. She grinds her teeth and twitches all night. The albuterol does not help, but sometimes moving her different ways-she clears up. Any ideas? She is maxed out on all of her medications. She is on prevacid once a day, flovent 220 twice a day, zyrtec 1 cc daily, and singular 5mg. Usually during the day she don't wheeze-maybe once or twice a week she has an episode.
Other problems: Bowel movements changing colors-white/tan.?? and has a hard time with bowel movements, although she usually goes daily.
tests they did:
adnoids-came back good
blood test for liver-came back good
Rencent infections in the last 2 months: pneumonia, 2 ear infections, infected cut on finger, viral infection.
2 hospitalizations in nov 04 and feb 05 for asthma.
Recently took blood for common allegies, pneumonia level (last year it was low), and sma7
no results yet
What could this be, do you have any ideas? She has been so sick for so long and I don't know how to help her or what could be causing her to get like this at night.
Should the asthma doctor be doing something else? He hasn't ruled anything out.
Her main doctor refered her to an ENT (ears nose throat doctor)
any ideas or help would be great-thank you so much for your time
Re: SCARED-please help, 3 year old asthma out of control?
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 .
Last edited by celtic_mom; 05-10-2005 at 05:56 AM.
Re: SCARED-please help, 3 year old asthma out of control?
I'd first look into allergies. I know you said that she had blood drawn for it, but would it be possible for her to get skin testing done? The skin testing is more accurate and you get the results quickly.
If she doesn't have many allergies, get a sweat test done, possibly with genetic blood testing. The sweat test rules out cystic fibrosis, which is a genetic lung and pancreatic disease. You mentioned that her bowel movements are tan/white -- are they formed or are they loose/greasy?
And I'm not sure if you mentioned if she's gotten her immunoglobulin (IgM, IgA, and IgE especially) levels checked -- it'd be a good idea to get those levels drawn too.
IgA and IgM antibodies are responsible for fighting infection, and IgE causes allergies.
Re: SCARED-please help, 3 year old asthma out of control?
Thank you so much for replying. My daughter was already tested for cystic fibrosis. I asked her asthma specialist if he could do the skin testing for allergies. He said he would prefer to do it when she clears up. She has been sick since nov. He said we would do common ones through her blood.
Last year she had the IGG and IGA testing. He told me last year her IGG's were low and this year he said that last year they were fine. I am confused about that. Also her pneumonia level was low last year and she got a shot. They just retested it and I should get the results next week sometime.
One thing I do know-she has been so congested ALL winter and still is. I don't know why. I try to suction her nose out-but I am not very good at it. Could this trigger and attack?
On the subject of her bowel movements-have you ever seem a bowel movement after barrium? That is what it looks like and the same consistancy. I haven't bought anything out of the ordinary. And her bowel movements are like this for months and months.
Also, I have notice a few times her asthma got way out of control. Her eyes were red and drainage came out-very little throughout the day. Her pre-school sent her home thinking it was pink eye. And every once in a while she says her head hurts.
Last year all of her asthma attacks were triggered by viral infections. My baby is sick constantly. This year the viral infections aren't the only cause and I can't pinpoint anything.
I did just read an article ear infections could be caused from allergies.
I have schedulaed an appt for tomorrow to see a new asthma doctor and next week she sees a ENT.
I am just so frusterated and scared-I don't know what to do. Should I ask her albuterol to be switched? What kind of heart problems do they cause??
Re: SCARED-please help, 3 year old asthma out of control?
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.
Re: SCARED-please help, 3 year old asthma out of control?
WOW!!! You sound like your talking about my 2 1/2 year old. My daughter has severe asthma and it took about 9 months to get it under control somewhat and we still work hard every day to keep it that way. On her first birthday we rushed her to the hospital with her first asthma attack. Scared the life out of me. We tested for everything under the sun to rule out other things besides asthma and we established that she definately has asthma and she also has a Polymorphism called M470V which causes a lot of sinus problems.
We have actually made ALOT of progress in the last year and a half and haven't had to go to the hospital for about 7 months now, before that we were averaging once a month.
When CF/Pulmonary specialist did the genetic testing for CF she also asked that she be tested for any know polymorphism. She tested negative for CF but positive for two M470V polymorphisms (one she got from me and the other from her dad) According to our doctor children with M470V tend to have more pneumonia and/or sinus & ear infections that the average normal child.
The ENT removed her adnoids and put tubes in her ears. That helped alot, however the tubes come out and when they do she starts having major problems again with her asthma because all the excess mucous triggers her asthma. Her third set of tubes just came out and they are wanting to try to get through the summer with having to put new ones in but I don't think its going to work. She's already having a little trouble with her asthma, I find I'm using more medicine to keep it under control.
They tested for allergies and the skin test didn't show she had any but the doctor said because of her young age she needs to be retested. Apparently the allergy test are less accurate on small children. They are going to retest sometime in the future because they are fairly certain she has allergies.
They have her on Zantac for acid reflux - this will trigger asthma. If my daughter doesn't have her Zantac at night she cries out more at night. Don't get me wrong she doesn't sleep well anyway but it's definately worse if we miss her Zantac.
The doctors HIGHLY recommend sinus washing. We do it but not as often as the doctors would like us to. She throws a royal fit. I can't blame her.
Her is her list of med's
Flovent - 4 puffs twice a day (110mcg)
Zyrtec - 5cc's twice a day
Singular - 4mg once a day
Zantac - 4 cc's at night
Sudofed - 5 cc's three times daily
There are other triggers to her asthma but sinus problems is definately our biggest.
By the way we just lost our Pulmonary specialist who did an excellent job helping my daughter. She just moved to Omaha Nebraska. She is in practice there now. Her name is Dr. Bettina Hilman. If by chance you are in that area, I HIGHLY recommend her. She is a one of a kind and Excellent. Nebraska now has the best CF/Pulmonary doctor in my opinion.
Last edited by BYHOPE1113; 05-12-2005 at 11:12 AM.
Re: SCARED-please help, 3 year old asthma out of control?
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.
Re: SCARED-please help, 3 year old asthma out of control?
BYHOPE1113
what exactly is M470V polymorphisms and how is it tested. My daughter was tested for cf but not that. I am from Pittsburgh, PA. I don't even know if she should see a pulonologist? How do you know. They have her seeing an ENT on monday. We are at the doctors 1-2 times per week for some kind of infection, or her asthma. Also what is sinus flushing?? How do you do it. The doctor we seen yesterday he said he could see the draining going down the back of her throat. My daughter just started recently with the ear infections. She has had two in the last 2 months. And she has had reflux since she was born. SHe wake up a lot during the night. She grinds her teeth and jerks all night. And 2-4 times wake up crying and very irritable. I feel so helpless.
Re: SCARED-please help, 3 year old asthma out of control?
The Pulmicort is by mask in a nebulizer, right? She'll probably get a LOT more steroid that way. Just make sure that you wipe her face after each Pulmicort treatment -- it's notorious for causing thrush (and for little kids, the thrush appears on the face as well when the mask is used).
Hope no one minds that I'm answering this, but I might as well. M470V polymorphisms are found through cystic fibrosis genetic testing. From what I understand, they are almost like CF mutations, but it's not proven that the polymorphisms cause CF...they can cause CF-like symptoms, however. It's been found that some people with asthma can either have CF polymorphisms or carry a CF gene.
You said you're from Pittsburgh? Is there a children's hospital there? If not, in Phila******a (not sure how close that is to you [not sure why it's being censored either]) there is a children's hospital with an excellent group of pulmonologists who specialize in pulmonary disorder s, particularly asthma and CF.
Re: SCARED-please help, 3 year old asthma out of control?
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!
Re: SCARED-please help, 3 year old asthma out of control?
thank you, I will look into a pulmonologist. She is only seeing her pediatrian and an asthma specialist. Also she hasn't see an ENT yet, but I have an appt on monday.
As far as the medication changes. She seems like she is breathing a lot better tonight. Her preschool said she was much more active and happy today. I think she is getting releif. Although her congestion is still very bad. I can feel and hear it ratteling around in her lungs. Any suggestions with the congestion?? I don't hear any crackles or wheezes-which is wonderful. I might actually get a little sleep tonight.
On a happy note. I got her lab work back. Everything looked good.
The only thing that was abnormal was her:
hematocrit 42.1 high
RDW 16.7 high
Lymphocytes, Absolute 1700 low
Eosinophils, Absolute 0 low
Re: SCARED-please help, 3 year old asthma out of control?
Sinus flushing is supposed to help with congestion. I have had some luck, but since I have been pretty lax about it, I still find myself congested all the time. I'm really not an expert - you could post a thread specifically about sinus flushing and see if you can get more input.
Personally, I would go with an OTC decongestant until she sees her ENT on Monday. I've always used the children's sudafed fast melts. Unfortunately, they knock my kids out, so they can only take them at night. You should check with your pharmacist, they can be helpful in this area.
Last edited by celtic_mom; 05-13-2005 at 05:03 AM.
Re: SCARED-please help, 3 year old asthma out of control?
thank you, I did read about the sinus flushing. I am a little scared to do it on a 3 year old. I think she may have a sinus infection. When I looked into her nose it was yellow dried. She is producing a lot of drainage.
Re: SCARED-please help, 3 year old asthma out of control?
Sorry it took me so long to get back to the board, but I see that swimfast has already address the M470V issue and she's right. M470V can have some the same charactistics as CF but it's not been proven to be CF. From what I understand CF patients tend to have alot of digestive problems as well as mucous problems. M470V is genetic alteration and not all that uncommon in our population, it has simply not been studied extensively until recently.
Our doctor said they found when studying patients with Chronic sinusitis that a large percentage of people with chronic sinusitis also had at least one M470V polymorphism.
How do they test for M470V:
Our doctor drew a vile of blood and sent it to Ambry Genetics in California. Ambry ran two test: One for CF and the results were negative
The second for any known polymorphisms
she was positive for two polymorphisms (M470V/M470V)
one she inherited from me and the other from her dad
There really isn't a cure for M470V because it really isn't a disease. Our doctor says finding out she has two M470V polymorphisms is more of an explanation of why she keeps getting ear infections, sinus infections, pneumonia (all of which triggers her asthma). Patients with M470V just are genetically inclined to get more of these things than the average person because there is excess mucous.
If you find anything new out please pass it along. By the way I found it interesting that my ENT and my pediatrician didn't have a clue what M470V was until our Pulmonary specialist found it. If we hadn't seen a specialist with knowledge about CF I really don't think we would know about this M470V.
Last edited by BYHOPE1113; 05-16-2005 at 08:47 AM.
Re: SCARED-please help, 3 year old asthma out of control?
Thank you, I am going to have to mention that to the asthma doctor until we see a pulmonologist.
We seen the ENT today. He made me feel like we shouldn't be there at first. I told him what was going on and all of her problems and he said well why hasn't she seen a pulmonologist and GI doctor first. I said I don;t know her ped recommended she see you and told him that it sounded like a large airway obstruction when she is sleeping. He wan't her throat and vocal cords checked. I didn't know what to say.
Then when he assessed her he said she had a lot of fluid in her ears. I said yeah she has been like that for months and has had two ear infection. He took her to get her hearing checked and the fluid in her ears. Her hearing was a little off and there was thick fluid in her ears that isn't moving well. He also noted her adnoids were a little enlarged but nothing too much to be concerned with.
He recommened tubes be placed in both ears, her adnoids out and said he would look at her vocal cords while she was under and would be able to tell if she is having acid reflux problems. That is the the extent of it. He wants to do it next thursday. He said if she is still breathing the way she is at night then we will need to see a pulmonologist and GI doctor. But he doesn't want me to see them until he is done with the surgery to see if this cures her.
I am going out of my mind. I stayed up most of the night last night. She has so much problems at night. She gasps a lot and her lungs sound like they stick then she quits breathing for 2-8 secs and gasps again??? Her last asthma doctor said it wasn't sleep apnea becauseshe would stop breathing for longer peroids. My baby woke 4 times last night and when she wakes she just cries and is so irritable. If they don't find something soon and correct it-I am going to lose it. I can't tell you the last night I slept good. It was before Melanie was born.
Re: SCARED-please help, 3 year old asthma out of control?
I can can almost hear the deseration in your writing and I understand where you are at and where you are coming from. I've been there and I'm still there. Take a deep breath and get ready a few more reactions like that from other health professionals out there. But don't quit looking for help. Sooner or later you'll find a doctor that cares and has experience with this. You just have to keep looking and don't take no for an answer.
I'm at work right now but I'll write back shortly and I'll gladly help in anyway I can. Remember, I'm not a doctor by any means this is just one mom's experience to another mom, but I've had to fight HARD to get my daughter to the point where we are now and I'll tell you everything we do to stay out of the hospital. Now granted were at the doctors office about 2 - 3 times a month but at least were not in the hospital.
Is she getting breathing treatments during the night? How often? What breathing treatment medication is she on?
I'll get back on the board as soon as I can.
P.S. My mom and dad had the kids Saturday night because it was my anniversery and she said my daughter kept waking up crying and coughing and I told her "Welcome to my World" but I got a good nights sleep. It's like that every night!!! No rest for the weary!
One more thing, don't wait on the pulmonologist make that appointment today.
Last edited by BYHOPE1113; 05-17-2005 at 07:29 AM.
Re: SCARED-please help, 3 year old asthma out of control?
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.
SCARED-please help, 3 year old asthma out of control? 
