Looking for some advice and help for my 5yo son (long)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

syddesi2
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/20/2008 7:04 AM (GMT -7)   
My son was born at 37 weeks. He was seemingly healthy at the hospital. By 3 weeks old he developed what I thought was a cold ...it was a loud mucussy rumbly cough that also led to wheezing and resp distress. We started hin on breathing treatments and prednisone.  The wheezing comes and goes but the mucus wasthere to stay.  He was tested for an esophageal fistula - came back neg and then a sweat test during his 1st year of life - came back neg.  He has no GI problems other then serious constipation but I attribute it to his medications.  He is on Xopenex twice a day by nebulizer and flovent as well as singulair.  He suffers with chronic mucus but is hardly ever "sick".
He is dx'd with asthma and he lives with the mucus.  recently he was dx'd with pneumonia when I brought him to urgent care for a fever of 104.2. They did a CXR and determined it was Pneumonia....I really didnt believe them because I said...he always sounds like this so I FINALLY brought him to the pulmo after 2 years withiout. She sched an upper GI (normal) and a bronchoscopy.  She said what she found surprised her.  She said deep in his lungs they are clogged with very sticky thick mucus - so thick she could hardly get any for testing.  What she did get came back positive for several bacterias including staph.  We are set to have another sweat test done Monday.
She said the mucus was cloudy - not green or yellow - but she said there was so much and it was so thick - she said it was bubbling up.
He is relatively "typical" sized - no other "markers" - he does have clubbing of the fingertips but as I said he is asthmatic.
 
My question - how often is a sweat test neg and a child comes back to test positive?  What "else" could cause thick sticky mucus in the lower part of the lungswith no sign of illness? 
 
Is this CF?
 
Thank you
Amy

syddesi2
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/20/2008 7:21 AM (GMT -7)   
sorry I also want to add that she said his white count (she called them poly cells) were at 4000 - she said the norm is 100. What does all of this mean.
Im scared
Amy

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/20/2008 8:45 AM (GMT -7)   
Hi there Amy, I'm glad you have found healingwell, and hope we can provide you with any help and support you may need.

Wow, can understand why you're scared.
Every new parent of a child diagnosed with anything has a lot of fear. To not know what is making your child so ill, with no known ways to treat it must be very frightening.

It is possible for a borderline sweat test, to then be tested positive. I don't think it likely for a negative test too come back as positive. Though a negative test depends on what a doctor has believed too be negative in the frst place. Some will say negative, but it is what many believe to be a borderline test. If that all makes sense so far.

CF has many problems and symptoms. The CFTR protein can cause fault in many different parts of the body, which is why everyone with CF is so different and why there is so many problems the gene can cause.
Low weight is a typical early sign of CF, but not a definate one. Depending on the mutation of the gene, and whether any other genes cancel it out, depends on whether CF affects enzyme production. I have friends who don't have a problem with their digestive system at all, and are over weight with CF.
Another thing about CF, is not many people actually look ill with it. Curse and blessing at the same time. A LOT of people with CF look normal, and a lot of the time, doctors will have too treat patients not on what they look like, but how they say they feel, and sometimes on figures such as lung function etc. CF usually involves a lot of guesswork.

White blood cells-I'm not very up on tbh. The other day, when testing my kidneys, they said my white blood cells were up, and said this is a sign of inflamation and infection. Also before deciding on treatment, they always test my inflammation markers. Though don't know excatly what it is they test, or figures etc. If your son has had a lot of infections then it's likely to be causing inflammation in his lungs. I am guessing that this is why his white blood cells will be high.

Really thick sticky brown/green mucous can be down to ABPA. This is like an allergy to something called asperigillus. It can be known to cause hard sticky plugs too form in the lungs. However, if this isn't one of the things they have found in the tests, it is unlikely too be this. It is a fungus though, and it's not often people think too test for it.

Here is a link for an article that explains about Brochiectasis:
http://stanford.wellsphere.com/cystic-fibrosis-article/what-is-bronchiectasis?/213874

This lists a couple of things which may be helpful too you, however it is very hard too understand fully. I just thouht I'd pass this on as a useful piece of info, even if you cannot use it.

Unfortunately, the only way of diagnosing CF is by testing the sweat or testing for the gene itself. I hope the results come back quickly, and that your son recovers quickly from whatever it is causing the problem, and most importantly that it's something easily treatable and not CF.
If you need help on anything please post, just please be aware that any answers you get are probably going too be very CF specific, and therefore maybe not 100% correct as too your sons condition. You are always best asking your sons doctor in cases like these.

All the best
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/21/2008 12:51 AM (GMT -7)   
OH, I forgot about this aswell, it's just come to me;

One of my friends ex-girlfriends, she had really severe asthma. She was hospitalised more often than me and my friend. Though, it was a definate she didn't have CF. She was also wheelchair bound some of the time, due to just running out of air too quickly. She had a lot of infections aswell, and was up on the knowledge of antibiotics, as much as me and my friend.

Just thought I'd let you know that story, because it shows that it doesn't have to be CF your son is suffering with.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


syddesi2
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/21/2008 6:01 PM (GMT -7)   
Thanks for your reply - I saw the note about your friend(which doesnt make me feel too good either) and I wondered if she had the thick mucus as well.  The thing that the pulmo said was the thick sticky mucus clogging his lower airway - she said it was the thickest she's seen. Is there anything else that causes such mucus?  He's had it since he was born?  He's almost 6?  Does Asthma cause this mucus that never goes away? 
 
I guess i'll know soon - we have our sweat test tomorrow.  I am also going to ask for his numbers from the 1st one.  I never got them.
 
Thanks
Amy

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/22/2008 9:17 AM (GMT -7)   
I'm sorry for worrying you further, my reply about my friend was meant to be reassuring, and for some reason seemed to me at the time that it would be. I understand now why it didn't make you feel to great.

Good idea too ask for numbers, at least then you'll know for certain how things stand.

I am a little shakey with my knowledge about asthma. I know how too tell the difference between CF and asthma in my lungs. But I'm not sure if it's quite the same. All I knw is in me, if my sputums green or brown or generally mucky coloured, then it's infection. If it's white it's asthma. The consistancy and amount stays the same though. Things like food alergies can cause changes in sputum production too.

I'm really sorry I can't be more helpful. I want to be, but I just don't know enough about everything else.

Good luck with the testing, I really do hope it goes ok, and there is something that is easy to treat, and just a blip in your son's life.

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 6:59 AM (GMT -7)
There are a total of 2,736,309 posts in 301,366 threads.
View Active Threads


Who's Online
This forum has 151462 registered members. Please welcome our newest member, barbarwhit.
219 Guest(s), 12 Registered Member(s) are currently online.  Details
John_TX, Rebel_runner, Fl Drifter, TotesMagotes, mrs. george, reminder, ASAdvocate, U B Tough, ks1905, fightUC, franko63, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer