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

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    Old 01-26-2006, 07:06 PM   #256
    babiespalace
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    Re: SCARED-please help, 3 year old asthma out of control?

    Oh all of Melanie's doctors are from our childrens hospital. Really the only place I can go most doctors not in childrens don't have the knowledge with ped like we need. This is our only help-is the doctors we are dealing with now. If they can't help-there is no one else around here I know of that just deals with peds.

     
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    Old 01-26-2006, 07:15 PM   #257
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    Re: SCARED-please help, 3 year old asthma out of control?

    I have had Melanie to 4 infectious disease doctors. The last one said she thought she was the wrong doctor. Melanies lab work was unremarkable-except a few low pnuemonia levels-which no one is concerned with. She has had all the shots with another pneumonia shot. I don't know why no one will test for CF, but at this point I am thinking she doesn't have it either. I think it is the cilia and I definitly know she has a problem. Also when I researched both-they are very simialer but are caused by different genes.

    I don't know what i would do without you guye. We have got so far since I started posting in the begining. Although it is finding the right doctors to do the test I want. That seems to be the biggest problem. That is why I keep changing doctors. Someday I will get her all the best doctors. it is just taking forever to find them. I guess it's 1 out of a lot of doctors. I wish I could just find one doctor that did it all-but I doubt that would ever happen.

     
    Old 01-27-2006, 08:32 AM   #258
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    Re: SCARED-please help, 3 year old asthma out of control?

    I'm sorry you're getting the run around. The fact that they're saying the HIB and the Pseudomonas are normal is kinda odd. Yes, they do occur naturally in the environment, but most people don't GET pseudomonas. DS has cultured pseudo since he was three months old and has been on tobi nebs since then. He also cultured HIB and was recently put on zithromax for that. Maybe in his case because he has CF they are more proactive -- he also sees an infectious disease doctor for his primary CF doctor.

    I did notice when we were in the NICU that even though we were at a children's hospital, there was a HUGE difference in the care received by those who were part of the CF team -- respiratory therapy, peds doctor, dietary, social work vs. the regular nurses, regular rts, neonatologist and pulmonologists -- they didn't have a clue about the disease.

    I keep thinking if you could find someone who treats CF to look at the symptoms. A friend of mine has a teenage daughter with some asthma/lung problems -- could never get a clear diagnosis; however they go to a cf clinic for treatment because she has some of the same symptoms, requires some of the same treatments/medications. Worth a try.

     
    Old 01-27-2006, 08:34 AM   #259
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    Re: SCARED-please help, 3 year old asthma out of control?

    Hi Shelly,

    Glad to hear from you. After reading your update I went on line and typed in Ciliary Dyskinesia and Cystic Fibrosis and there are some similarites when in comes to cilia not working properly. Here's a defination I found about Ciliary Dyskinsea.

    "Primary Ciliary Dyskinesia (PCD) is an inherited disorder characterized by defective cilia, resulting in impairment of ciliary motion."

    I found a Yale University News Release that had some interesting comments about Cystic Fibrosis and cilia. Here's the part I found interesting.

    "Researchers studying Cystic Fibrosis lung disease initially thought that the problem was with the movement of cilia, but this turned out not to be the case because when the sticky mucous was removed the cilia moved normally."

    "Although the cilia are present in Cystic Fibrosis, they either lack or have defective chloride channels that are unable to regulate the water environment."

    "Professor Joel Rosenbaum said the finding means that researchers should again look at the role of cilia in Cystic Fibrosis, not in terms of the cilia's ability or failure to move the mucous out of the lungs, but rather at how the cilia are sensing the water environment."


    I also pulled up a persons name at the Indiana University Department of Medicine who's clinica interest were Cystic Fibrosis and Ciliary Dyskinesia. The name is Aruna Sannuti in the Pulmonary Division.

    They might can give you some information about either subject.

    I hope this helps a little. And keep insisting that they do that genetic testing.

    Hugs,

    Kim
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    Last edited by BYHOPE1113; 01-27-2006 at 08:36 AM.

     
    Old 01-29-2006, 07:51 AM   #260
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    Re: SCARED-please help, 3 year old asthma out of control?

    I actually found the foundation and called them. She said it does sound exactly what her daughter went through and feels that she may have it. I told her how sick she has been and she said that can also kill the cilia. But cilia comes back, If she has ciliary dysinisea it will come back just not function right. 2 more weeks till the result come back. She gave me a doctor here for cf pulmonology she said that should be the first place of choice for treatment with her symptoms

    hugs

     
    Old 01-29-2006, 05:34 PM   #261
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    Re: SCARED-please help, 3 year old asthma out of control?

    Good for you!

    What ever it is causing Melanie's health problems, once you get a firm diagnosis, the doctors will know better how to treat her. Good Luck and let us know how it goes.

    Hugs,


    Kim
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    Old 01-31-2006, 06:27 PM   #262
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    Re: SCARED-please help, 3 year old asthma out of control?

    Melanie sees the pulomologist in march. they must be really busy. At least she isn't having any wheezing episodes right now. Also she sees the ENt in 2 weeks. I'll keep you guys updated. Thank yo so so so much. You guys are the best.

     
    Old 02-16-2006, 09:29 AM   #263
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    Re: SCARED-please help, 3 year old asthma out of control?

    Hey Shelly,

    How is Melanie doing these days?

    Karly's ears started giving her problems over the weekend and I had some medicines at home so rather than taking her to the Dr, I just started her on Ciprodex ear drops and a new bottle of antibiotic (Vantin). Her ears were bad enough and she was running 102 fever so I didn't have any doubts they were infected. I called the Dr on monday morning and told her what I did. I really thought I was going to get a tounge lashing for not taking her to the ER but I didn't. If fact the dr said, good job and let me know if you need anything else.

    I guess she figures we have been around this block enough times, I should be able to figure it out. Karly is doing much better, now.

    Hope things are going well. By the way, we now have another mom who we can bounce ideas off of. See we are not alone!

    Welcome to our little health chat area Bonny!

    Kim
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    Last edited by BYHOPE1113; 02-16-2006 at 09:30 AM.

     
    Old 02-21-2006, 07:46 PM   #264
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    Re: SCARED-please help, 3 year old asthma out of control?

    I just wanted to update everyone. Melanie had her surgery and it went well. We ruled out ciliary dyskinisea. I really thought that was going to be it. I found a lump in my breat I need to get out. With Melanie's appts and now mine. I haven't been able to get on very much. My CT scan looked good. So I'll hope for the best.

    Anyways I met a really great guy that might be able to help me. It just might be the chemicals she was exposed to. It makes sense to ,me. Anyways melanie has an appt at out childrens diagnostic center. I hope they can help. It's for very complex cases and I think it's about time we know whats wrong and get a diagnoses. I'll keep you guys posted.

    hugs
    shelly

     
    Old 02-25-2006, 06:45 AM   #265
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    Re: SCARED-please help, 3 year old asthma out of control?

    Well we went to the dianostic center. She feels Melanie doesn't have asthma. She feels it is reactive airway disease. She is also very concerned with Melanie's sleep apnea and chronic sinusitis. I am not suer what they are going to do at this point. we need to scheduale a vcug for her urine reflux, a sleep study in june-her best month, and a hearing and eye exam. Melanie's behavior's have become worse and she feels it may be due to the sleep apnea. Also she can't tell me exactly what at the school cause all this but there is a trigger there-that has caused a lot of this. I know what it is. But she can't test it. She said there is no way. I don't think there are any doctors around here that could help me with that. But I do know that being exposed that long has cause her some major problems.

     
    Old 02-27-2006, 05:18 AM   #266
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    Re: SCARED-please help, 3 year old asthma out of control?

    My Son also had sleep apnea. His behavior was awful. We took out his tonsils and adnoids and it really helped. He is like a different child behavior wise. We also go some test results back. Matt has two types of immune deficiencies along with the cf variant...and so it goes

     
    Old 02-27-2006, 06:02 PM   #267
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    Re: SCARED-please help, 3 year old asthma out of control?

    I wish it were that simple. My daughter had three surgeries. First was adnoids out and tubes in ear. Second was tonsills out and resected more adnoid tissue. Third sinus irrigation and anothe tube replaced. We have no clue as to why she is having the sleep apnea. I think it is related to the chemicals. Who knows. I am pushing just for a diagnosis. That's all I want.

     
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