SCARED-please help, 3 year old asthma out of control?

BYHOPE1113

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.

babiespalace

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.

BYHOPE1113

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.

celtic_mom

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.

babiespalace

Thank you guys.

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. ( 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.

BYHOPE1113

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.

mom9302

My 2 year old son was the same way and his doctor had tubes put in his ears and the asthma attacks have almost stopped completely. It was a God send for us. I hope your little one gets better really soon I know how hard it is when your child is having severe trouble breathing.

babiespalace

thank you guys. I am going to see a pulmonologist. She was on atrovent last year and it really helped her, but the same asthma doctor told me he doesn't prescribe it on children at home. I said you did last year and he didn't say anything. That is another reason why I changed doctors.

I am sitting here crying because I just don't understand why she is still like this. Last year at this time she was completely asthma free and I took her off all meds. She only had one mild attack over the summer and started back up in nov and has been sick ever since.

Her eyes have been red since (with rings around her eyes) and her nose stuffed and coughing. She was short of breath most of the winter but doesn't seem so much short of breath now. I guess because it is getting warmer.

I wanted to ask-she started snoring about 2 months ago. Does that mean anything. Loudly too. Could this be acid reflux. She is currently taking prevacid 15 mg, but not sure if it is working or not.

I really hope I start getting answers from these doctors. I am starting to break down and feel like I'm doing something wrong. Being on here has gave me a lot of hope and new ideas. I just hope we can figure it out. She has been sick way too long. She has been on orapred a lot this winter for extened periods. Once a month or more. It has been at least a month since she was on it last, but it has done something to her immune system because she keeps getting infections and some of her blood work showed it.

Thank you guys for all of your input!!!

babiespalace

[QUOTE=BYHOPE1113]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


You know no one has ever gave me an asthma action plan???? I wonder why. No wonder I am always stressed and don't know what to do.

What does a pulmonologist do??

celtic_mom

Hi babiespalace - a pulmonologist is essentially a lung specialist. When I had my asthma attack, I was getting no where with my regular internist. They kept putting bandaids (so to speak) on the problem. They treated the symptoms and didn't even look for a cause. I made an appointment immediately with the pulmonary specialist, unfortunately it took nearly 6 weeks to get to see him. As soon as I did though, I knew it was worth the wait. He took charge of my treatment and let me know that we would get to the bottom of things.

As it turns out, he was the one who sent me to get a CT of my sinuses, which proved to be the culprit in my case. Turns out I have chronic sinusitis, which was the trigger for my asthma. Actually, now I'm being told I may not even have asthma at all. It could have just been RAD due to constant infection. I don't know, I'm not getting my hopes up on that one, but you know, as long as I know what triggers my asthma, I feel like I'm one step ahead.

Now, back to your DD, from what you describe, I'm wondering why no one has ordered a CT of her sinuses. It may be nothing, but since you mentioned the recent infections, including pneumonia, it reminds me of my recent ordeals. You would think the ENT would consider this, but I think they wait until they see "x" number of infections in a row. Regardless, I think if you find a good pulmonary doc, he/she will be able to lead you in the right direction.

Bottom line is something is triggering you daughter's asthma and finding a good doc is key in getting her relief and treating her going forward. Keep us posted and good luck!

BYHOPE1113

Now I'm agreeing 100% with Celtic Mom. My daughter has had four CT Scan's so far and all of them show her sinus's are stopped up, even the last one we did.

Chronic sinusitis is definately a major asthma trigger for my daughter too.

babiespalace

I left a message to scheduale an appt to see the pulmonologiost today. Who should I ask about the CT scan? I think they should have done that. Or should I wait to see the pulmonologist?

You guys are wonderful!!

BYHOPE1113

I suppose it could be done by any of the doctors. K's first was ordered by her pediatrician. The second, third and fourth was scheduled by the ENT at the request of the Pulmonologist. So they were all involved in it. Which ever one you feel most comfortable talking too. In our case the doctor put K in the hospital for the weekend and on IV steroids so she would be improved enough to have a CT on Monday morning. She was having another asthma attack. They will probably want to sedate her so they can get good pictures. K's first CT she was sedated but she wasn't for the other three. I prefer the non sedated CT's, but the doctor might not recommend that on the first one.

The doctor might not think to much about you getting advice from us Mom's on healthboards but, oh well. We Mom's and Dad's have to stick together for the good of our kids.

babiespalace

I'm not sure who to ask. Really the only people I truly like is her ped. and her allergy specialist-which is very new. We have only seen him once. The ENT I am not sure about-with him acting like we shouldn't have been there, I don't feel I can trust him-even though he is the one that is doing the surgery.

Do you think I should just call him anyways and suggest a ct scan of her sinuses be done?? How do I ask for something like that?

thanks again
hugs
shelly