I am listening to Jason's cough and feeling like I am going to jump out of my own skin. I can't think straight. Every cough is like a - I don't know what - I feel like I am losing it. There isn't anything to do for him. He has had all of his meds and pt. He is blowing his nose as it is like a faucet. It is running down the back of his throat - that causing the cough that also causes the need to blow his nose. His throat is raw. We know the drill. I just feel so horrible for him. It just shouldn't be this hard - I HATE this disease!!!! I know I am preaching to the choir. I cannot stop my tears now. I don't know what else to say.... I know I don't need to explain myself - I am sure so many of you have felt the same. I just don't know what to do. It seems like my reserve just isn't there .... Oh I hope and pray maybe some rest will help - he needs to rest.... hopefully tomorrow will be better. No infection as of yet. This spring has been HORRIBLE - the reactive airway disease portion of the cf - I could scream if I had the energy - all I can do right now is try to stop my own anxiety. This is the place I come to.... Ugggggg!!! I just wish I could do something, anything - just to let him get some rest. Thanks for listening. I need to be stronger again. Hopefully I will be.
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very on edge
- Thread starter JoAnn
- Start date
M
Markus
Guest
Sorry to hear about your son. I really dont know how you feel since I have always been on your sons side of things but it must be a terrible feeling not being able to help him. My mom was always worried when I had a bad cough I assume she felt like you are. Keep your head up !
Have you had him allergy tested? Nose running like a faucet (as long as its clear) sounds like allergies.
That sounds like me when I was 9 years old and developed allergies. I would cough so hard that I would throw up. I would wheeze so hard I sounded like an accordian.
Then I got allergy tested and got rid of the cat, stopped riding horses, and put allergy encasings on my matress and pillows.
I have been taking allergy shots since I was 19.
For me, CF was my diagnosis, but my real problem was allergies.
Now my lungs are at normal lung function (FEV1 of 99%) and I KNOW it is becaues I got my allergies under control.
That sounds like me when I was 9 years old and developed allergies. I would cough so hard that I would throw up. I would wheeze so hard I sounded like an accordian.
Then I got allergy tested and got rid of the cat, stopped riding horses, and put allergy encasings on my matress and pillows.
I have been taking allergy shots since I was 19.
For me, CF was my diagnosis, but my real problem was allergies.
Now my lungs are at normal lung function (FEV1 of 99%) and I KNOW it is becaues I got my allergies under control.
Hi Mark - Thanks for replying. You and Julie are amazing people individually. Your babies are so incredibly blessed to have you. Sometimes it just helps to know someone understands. I have been searching the site and have come up with some ideas. I am also going to call the dr. tomorrow and go over things with him to see if we are missing something. Unfort. I am pretty sure it is just a part of his condition that we are going to need to do trial and error to find what helps him - and I am sure that is going to keep changing. Thanks again!! Oh and Congrats on graduating!!!
Hi Amy - He was allergy tested a few years back; however I think you may be right. He uses flonase and claritan - I don't thing they work well for allergies for him. Flonase works well when he has congestion and polyps. He took singulair and stopped when he started advair - I am wondering if that might help him. I am going to check with the Dr. Thank goodness for all of you and for this web site - I'll just keep on searching. Thanks again! I think for tonight, I'll do our norm - he can sleep sitting up next to me. Alb. trtmts every 4. Water and tissues...
Flonase has alcohol in it. It can give your son headaches and nose bleeds. Try nasacort AQ in stead. the thing about nose sprays is that they should be used all the time... they take about 2 weeks to fully work. This will help a ton with the post-nasal drip.
Claritin is crap and works for not many people. Switch to Allegra.
Additionally, what type of allergy test was it? Just a blood test? If it was, I recommend a full work up skin test.
Claritin is crap and works for not many people. Switch to Allegra.
Additionally, what type of allergy test was it? Just a blood test? If it was, I recommend a full work up skin test.
I know exactly how you feel! That is why it is good you have this site you can come to. Life with CF is like a rollercoaster, but that means there will be up times again. Remember that and try to be positive. I know there were times I felt so helpless too and felt like I couldn't stand it anymore, but somewhere we get the strength again to move forward and be strong for our kids. You are strong and will get through this too. I am thinking of you....
momofjosh
momofjosh
JoAnn,
We ALL know what its like to listen to the coughing, and it DOES make you feel like jumping out of your skin.
I agree with the others about allergies. My kids have that same kind of cough when their allergies kick in. As long as its not a lung infection, try giving him a little Delsym. Its a cough suppressant and even though we're not suppose to use them, it will help him sleep. If he need the rest (and you need the rest) its a good thing every so often. Benedryl helps too.
Stay strong.
We ALL know what its like to listen to the coughing, and it DOES make you feel like jumping out of your skin.
I agree with the others about allergies. My kids have that same kind of cough when their allergies kick in. As long as its not a lung infection, try giving him a little Delsym. Its a cough suppressant and even though we're not suppose to use them, it will help him sleep. If he need the rest (and you need the rest) its a good thing every so often. Benedryl helps too.
Stay strong.
This past spring, Max developed a head cold and it turned into a productive cough. We increased his cpt and at one point, I called the local CF clinic. They told me "cfers cough" there's nothing they could do. I kept trying to explain that he rarely coughs and besides this was a different cough, it wasn't postnasal drip, that it sounded like when I've gotten bronchitis in the past. Fortunately two days later we had a CF clinic appointment in the City with our regular doctor and he heard that cough and prescribed cipro. Compared the cough to a smokers cough. We stopped at the pharmacy on the way to the hotel and got the script filled. By the end of the weekend, the cough had cleared up.
Maybe your son needs a little extra something. Contact the clinic and see what they suggest. If it sounds different than normal. It very well could be allergies -- I seem to have an increase in sinus problems and I've noticed Max is stuffed up, but the stuff is clear. Good Luck. L
Maybe your son needs a little extra something. Contact the clinic and see what they suggest. If it sounds different than normal. It very well could be allergies -- I seem to have an increase in sinus problems and I've noticed Max is stuffed up, but the stuff is clear. Good Luck. L