9 month old with constint breathing problems?
Answer:
Have you considered having your home tested for mold?
A few years back there was a "child abuse" case with a child of similar symptoms. The doctors had ignored Mom, as usual, and eventually called DCFS. Of course, when they took the child away she got better because she was in a different home. So, of course, they assumed it was all Mom's fault. Finally Mom and Dad also had the same symptoms because the mold continued to multiply. It turned out to be mold in their home. I don't remember the names of the people, but it was all over the news at one point.
You might consider testing for mold spores in your house. It couldn't hurt.
Ask your doctor about putting her on a probiotic to help populate her intestines with good bacteria and boost the immune system. It worked wonders for my son. Make sure you get a reputable brand though, especially one with the bacterial strain Lactobacillus GG like Culturelle.
Cystic Fibrosis is something that you and her father have to be carriers of for her to have the disease. There is no other way she could have it. When I was in college they said if you lick her forehead and it tastes salty then she may have CF. I assume that has been eliminated as a possibility though right? So my next question is are you a smoker? Is she around alot of smoke elsewhere if you aren't? And was she a preemie? If she was a preemie then her immune system isn't strong enough to be able to fight off things as simple as a cold like you and I, so it kind of sits there and can turn into RSV ( a really bad cold that requires hospitalization and is only seen in preemies up to about 2 years old) If she is around 2nd hand smoke, you need to remove her from that environment. This problem will continue and not get any better until she is away from the smoke if that is the case. If I know all the details I could give you a better answer. Feel free to email me if your still seeking answers or want more info. As for her O2 being low in the ER, if its smoke thats causing it her O2 will be normal. Even with RSV the O2 isn't always low.
First of all, if you have not already, I suggest you see a pediatric pulmonologist ASAP. They can be your best resource in helping to identify the problem. Your story sounds very familiar to me...
You mentioned wheezing. What about fast breathing? Sucking in in the rib area or neck when breathing? Cough?
My daughter will be 2 in September, and she has been ill since she was a newborn. In a way, we were "lucky" in that her disease was severe enough for them to pay attention and not put us off for months.... We knew before my daughter was a month old what we were dealing with.... Since my daughter's diagnosis with interstitial lung disease, I have spoken with several people who have stories just like yours, however. Many of those children are found to have a specific ILD diagnosis. ILD is rare in kids, so regular doctors just don't recognize it until the kid is very very sick. Keep in mind, I am just a Mom like you, not a doctor, so I am not trying to diagnose.. Just throwing another option out there. But many of our ILD kids are first thought to have CF, and pediatricians are left scratching their heads when that test comes out negative...
I am attaching some links below that you might want to take a look at....
And as a Mom who has dealt with nebs every 2-3 hours for a long long time now (as well as tons of tests, tummy problems, lung biopsy, home oxygen use, home pulse oximetry, meds meds meds, hospital stays, ER visits, etc.), I do know just how exhausting everything can be. If you have any questions or if you just need someone to talk to, you can email me directly at avk713@yahoo.com.
One thing that worries me is that you say that your daughter's saturations are not "low enough." How low is that? They may be lower at night when she is sleeping, and if you ignore the low sats, it can set your daughter up for a whole lot of other problems such as pulmonary hypertension and possibly eventual heart and lung failure. With my daughter, we are encouraged to keep her saturations at 94% or above at all times. She is now able to do that during the day with no problem, but at night, she still dips, so she still wears her oxygen. We are hoping that we will be rid of the O2 by the end of summer.
I am sure this is probably the most poorly written, rambling response... LOL. Have a lot I want to say and can't seem to spit it all out... :-) I hope it turns out that I am way off, but I'm just throwing another option out there. I do wish you the best of luck with your daughter. Take care, and please do see that pulmonologist!
i dont know how to help but i hope she gets well soon im sorry i cant help .i am to young to help. i am only 9 so i dont know what to say.but , i have breathing probs 2. but when i go to the docter with mmy dad they dont really seem to care either . i think normallly they will only help if you have severe probs. i sugest you go to the emergency, it might be costly but its worth it . tell the emergency docters all the syptoms and problems. they should care unlike other normal docters.
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