Hello, I am new here and in search of any help I can find for my lil girl. She is 4 years old, and weighs 24 pounds, she is about the height of a 1 year old and still wears 12 month clothes, that being said(as if thats not scary enough) she has been sick her whole life, wheezing, coughing, bronchitis, allergies, asthma, stomach pains, constipation, and now some really weird lookin poo. She was first sent to UAB at 2 and had a sweat test, the doc told me he was almost certain that was what was wrong, because her fingers and toes are funny lookin, he says its clubbing, anyway, her test was negative, and he pretty much sent us on our way. Thing is we have been pretty much fightin for her life since then, she has been in the hospital probably 100 times since then. <img src="i/expressions/face-icon-small-sad.gif" border="0"> The doc she goes to now is a family doc and has pushed every antibiotic, breathing treatment, steriod, and stomach med you can imagine down her and nothing is workin. We just left the hospital tonight with yet another Upper respitory infection her 3rd this year and its only february, he oxygen level was between 90 and 92 percent and she has been caughing so hard for so long she is just plain exhausted, she makes me want to cry when she tells me I cant breathe mommy my caugh hurts and she doesnt even have the energy to get up and walk around!! Yet the doctors tell me over and over again that its just viral give her a few days, only the days turn into weeks and months and she never gets any better, she is so tired and I am so afraid for her!! After one of our recent er visits with a "part time" er doc, and her o2 level being 90% after 4 breathing treatments, that something was seriously wrong, he gets us a "God Sent" appointment at UAB one more again for a test for CF. My question is , if it is not CF what is wrong with my baby, I have looked and looked and looked for answers and they all lead me right back to CF, but why didnt it show up and HOW do I get her the help she needs sooo bad??? Right now, she takes a breathing treatment every 4 hours and is on 2 inhalers, zyrtec, palgic, previcid, prednisone, mirilax, lactulose, and a liquid caugh medicine that was actually an over the counter med called delsom(Ithink). Her tinyness I can handle, her stomach aches and not wanting to eat and even vomiting after she eats I can handle, but when she is fighting through caughing and choking just to breathe, I lose it, what can I do???? Please help any information you can think of to help her caugh or to help her breathe will be appreciated greatly!! Thank You for listening. Oh and our app is the 21st of this month so any thing I should request or ask them to do other than just beg them to please do something!?!?!
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- Thread starter WindeeW26
- Start date
Hello, I am new here and in search of any help I can find for my lil girl. She is 4 years old, and weighs 24 pounds, she is about the height of a 1 year old and still wears 12 month clothes, that being said(as if thats not scary enough) she has been sick her whole life, wheezing, coughing, bronchitis, allergies, asthma, stomach pains, constipation, and now some really weird lookin poo. She was first sent to UAB at 2 and had a sweat test, the doc told me he was almost certain that was what was wrong, because her fingers and toes are funny lookin, he says its clubbing, anyway, her test was negative, and he pretty much sent us on our way. Thing is we have been pretty much fightin for her life since then, she has been in the hospital probably 100 times since then. <img src="i/expressions/face-icon-small-sad.gif" border="0"> The doc she goes to now is a family doc and has pushed every antibiotic, breathing treatment, steriod, and stomach med you can imagine down her and nothing is workin. We just left the hospital tonight with yet another Upper respitory infection her 3rd this year and its only february, he oxygen level was between 90 and 92 percent and she has been caughing so hard for so long she is just plain exhausted, she makes me want to cry when she tells me I cant breathe mommy my caugh hurts and she doesnt even have the energy to get up and walk around!! Yet the doctors tell me over and over again that its just viral give her a few days, only the days turn into weeks and months and she never gets any better, she is so tired and I am so afraid for her!! After one of our recent er visits with a "part time" er doc, and her o2 level being 90% after 4 breathing treatments, that something was seriously wrong, he gets us a "God Sent" appointment at UAB one more again for a test for CF. My question is , if it is not CF what is wrong with my baby, I have looked and looked and looked for answers and they all lead me right back to CF, but why didnt it show up and HOW do I get her the help she needs sooo bad??? Right now, she takes a breathing treatment every 4 hours and is on 2 inhalers, zyrtec, palgic, previcid, prednisone, mirilax, lactulose, and a liquid caugh medicine that was actually an over the counter med called delsom(Ithink). Her tinyness I can handle, her stomach aches and not wanting to eat and even vomiting after she eats I can handle, but when she is fighting through caughing and choking just to breathe, I lose it, what can I do???? Please help any information you can think of to help her caugh or to help her breathe will be appreciated greatly!! Thank You for listening. Oh and our app is the 21st of this month so any thing I should request or ask them to do other than just beg them to please do something!?!?!
Hello, I am new here and in search of any help I can find for my lil girl. She is 4 years old, and weighs 24 pounds, she is about the height of a 1 year old and still wears 12 month clothes, that being said(as if thats not scary enough) she has been sick her whole life, wheezing, coughing, bronchitis, allergies, asthma, stomach pains, constipation, and now some really weird lookin poo. She was first sent to UAB at 2 and had a sweat test, the doc told me he was almost certain that was what was wrong, because her fingers and toes are funny lookin, he says its clubbing, anyway, her test was negative, and he pretty much sent us on our way. Thing is we have been pretty much fightin for her life since then, she has been in the hospital probably 100 times since then. <img src="i/expressions/face-icon-small-sad.gif" border="0"> The doc she goes to now is a family doc and has pushed every antibiotic, breathing treatment, steriod, and stomach med you can imagine down her and nothing is workin. We just left the hospital tonight with yet another Upper respitory infection her 3rd this year and its only february, he oxygen level was between 90 and 92 percent and she has been caughing so hard for so long she is just plain exhausted, she makes me want to cry when she tells me I cant breathe mommy my caugh hurts and she doesnt even have the energy to get up and walk around!! Yet the doctors tell me over and over again that its just viral give her a few days, only the days turn into weeks and months and she never gets any better, she is so tired and I am so afraid for her!! After one of our recent er visits with a "part time" er doc, and her o2 level being 90% after 4 breathing treatments, that something was seriously wrong, he gets us a "God Sent" appointment at UAB one more again for a test for CF. My question is , if it is not CF what is wrong with my baby, I have looked and looked and looked for answers and they all lead me right back to CF, but why didnt it show up and HOW do I get her the help she needs sooo bad??? Right now, she takes a breathing treatment every 4 hours and is on 2 inhalers, zyrtec, palgic, previcid, prednisone, mirilax, lactulose, and a liquid caugh medicine that was actually an over the counter med called delsom(Ithink). Her tinyness I can handle, her stomach aches and not wanting to eat and even vomiting after she eats I can handle, but when she is fighting through caughing and choking just to breathe, I lose it, what can I do???? Please help any information you can think of to help her caugh or to help her breathe will be appreciated greatly!! Thank You for listening. Oh and our app is the 21st of this month so any thing I should request or ask them to do other than just beg them to please do something!?!?!
M
Mommafirst
Guest
Wow -- you have been dealing with a lot. Shame on your doctors for not figuring it out. All those hospital stays and every single CF symptom?!! When you go to UAB you should insist not only for a sweat test but for genetic blood work as well. You should ask about genetic sequencing for the entire 1600+ possible mutations, because there are some more rare mutations that would give you a low sweat test read despite the fact that she does have CF.
If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
M
Mommafirst
Guest
Wow -- you have been dealing with a lot. Shame on your doctors for not figuring it out. All those hospital stays and every single CF symptom?!! When you go to UAB you should insist not only for a sweat test but for genetic blood work as well. You should ask about genetic sequencing for the entire 1600+ possible mutations, because there are some more rare mutations that would give you a low sweat test read despite the fact that she does have CF.
If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
M
Mommafirst
Guest
Wow -- you have been dealing with a lot. Shame on your doctors for not figuring it out. All those hospital stays and every single CF symptom?!! When you go to UAB you should insist not only for a sweat test but for genetic blood work as well. You should ask about genetic sequencing for the entire 1600+ possible mutations, because there are some more rare mutations that would give you a low sweat test read despite the fact that she does have CF.
<br />
<br />If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
<br />
<br />Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
<br />
<br />If you exhaust all those possibilities and they still say no CF, do NOT let them just push you away. These are serious symptoms, if it isn't CF it is something else that needs care. A good pulmonologist should test for Primary Ciliary Diskinisia or Schwachmann Diamond Syndrome if they rule out CF.
<br />
<br />Good luck, you and your daughter deserve answers. She could be doing so much better if she just had the right care. ((((HUGS))))
AleksandraKaczynska
New member
Push for a genetic test, lung x-rays and pft's and stomach usg. Even if her sweat test is normal and they find nothing in genetics - the symptoms are very serious - and r=they alone can be basis for dignosis and treatment - if not this center try a diffrent.
Good luck with finding answers.
Good luck with finding answers.
AleksandraKaczynska
New member
Push for a genetic test, lung x-rays and pft's and stomach usg. Even if her sweat test is normal and they find nothing in genetics - the symptoms are very serious - and r=they alone can be basis for dignosis and treatment - if not this center try a diffrent.
Good luck with finding answers.
Good luck with finding answers.
AleksandraKaczynska
New member
Push for a genetic test, lung x-rays and pft's and stomach usg. Even if her sweat test is normal and they find nothing in genetics - the symptoms are very serious - and r=they alone can be basis for dignosis and treatment - if not this center try a diffrent.
<br />Good luck with finding answers.
<br />Good luck with finding answers.
antonette1279
New member
I would have them test right away for RSV.....My daughter had this EIGHT times and I had to insist they test for it....This is a very very rough virus on the respiratory system...I would have them do that ASAP...I hope your little one feels better soon
antonette1279
New member
I would have them test right away for RSV.....My daughter had this EIGHT times and I had to insist they test for it....This is a very very rough virus on the respiratory system...I would have them do that ASAP...I hope your little one feels better soon
antonette1279
New member
I would have them test right away for RSV.....My daughter had this EIGHT times and I had to insist they test for it....This is a very very rough virus on the respiratory system...I would have them do that ASAP...I hope your little one feels better soon