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Hey Torimom, small world, my son is 20 also. I am gonna have to check into that tussinex. May just be what we need. Sensory issued are the worst, but as you know, we find a way to deal. He is actually feeling a little better, so hopefully this finally passes. Thanks so much for your...

Thank you Aboveallislove. You and your son are in my prayers also. Hope he gets back to his baseline fast and is back outside plsyibg with his friends. Take care

Thanks Luna Faith. I did call and they want to try one more round of oral antibiotics while he is doing the Tobi. He is going back in next week for a repeat Pft to see where we are. If symptoms continue to worsen I am to call and they will bring him into clinic earlier or ER if after hours...

Thanks guys, I will. He is on allergy medicine, but it's probably his sinuses.

His has gotten a lot of congestion in his nose as the day has worn on along with the cough. So I guess I'm gonna wait and see where this heads in the next day or so. i think he gets more confusing by the day, lol. He's just tired of not feeling himself at this point. Hopefully with the...

Oh one other thing kenna 2, yes he does have reflux and takes daily Meds for it. But at this point anything is possible so I'll for sure to ask about that. Thank you everyone

Thank you so much everyone for the great advise. Learning the huff cough is at the top of the list at are next appt. I think this could be super helpful for him. The hydrocodone idea is a great one, but he had a codine allergy, but I will ask if there is something comparable he can have...

They did not find anything on the culture, but he is not very good with it. He has autism and this is a huge sensory issue for him. He has never cultured anything really bad. Only a coupke times did he culture anything requiring antibiotics. I can't remember what they were, but nothing thst...

Gammaw, thank you for replying. He has been on antibiotics for a total of 9 weeks sine mid December. First time was 2 weeks, followed by 3 weeks then 2 weeks and is now finishing another 14 days. This is his first time ever having Tobi. They do not know want bug he is fighting. He has not...

My son has been having drops in pft's for a while now. He has not been completely well since mid December. He had a clinc visit 2 weeks ago and decided it was time to try Tobi. At clinic he barely was coughing (geting over a chest infection), but did have a pretty good drop in function. An...

LL, it's not thst you are not always concise, just that this cf stuff can be very confusing sometimes. Hoe you have a great day.

Wow michaelp397, your treatments keep you busy. I am going to bring up the podhaler at his next appt so see what the think. He already does vest 2x, albuterol, hypersal, pulmocourt 2x and pulmozyme 1x. He also has lymphedema and spends 1 hour a day hooked up to a pump. Now adding Tobi. How...

Thank you LL. I was hoping you would weigh in. I am grateful for your knowledge on this question, and all your replies I see to other members questions. I'm not gonna lie, I sometimes have to read your answers a few times until I completely understand, lol but have definetly learned a lot...

Yes definetly tested at an accredited cf facility. Same hospital as my son. The child is 3. I haven't heard anything back from my relative today yet, but I kinda thought what you said about the higher number meaning cf. thanks for responding, I appreciate it

I ask this question after a relatives friend asked me. Her child had a sweat test and the results were a 58 and 73. She asked if this is considered positive since it's Friday and hasn't spoken to the doctor. I said I honestly don't know and didn't offer any opinion. I was just wondering what...

My son has the m470v, which is not considered to disease causing. They have not found his mutations, but had a positive sweat test. He has tons of gi symptoms with the need for a g tube and recently been experiencing bouts of DIOS. Gaining weight gas been a huge issue. lung wise he has had...

That's exactly what I was thinking now Ratatosk. He will definetly like the extra video game time.

15 minutes isn't too bad. I'm sure he can handle it after he gets use to it. The hard part will actually be the 28 day on/off routine for him I'm thinking. He hates change, lol. One of the tough things with autism. I'm sure there will get lots of bribing and rewards at first. Thank you so...

Thank you ethan508. I was wondering how long it takes to neb the Tobi. Hoping it won't keep him tied down much longer then he already is. He does albuterol, pulmocort, hypersal and vest 2x day with pulmozyne 1x. Adding Tobi 2x is gonna be a lot for him, but will hopefully adjust quickly.

Thank you so much kenna2. I understand things better. Also thank you for the heads up on the hearing, I was not aware of this. I will be sure to keep this in mind if he continues on with this med. they have been alternating Cipro and bactrum but it just isn't kicking it out like it use to.