Saturday, April 18, 2009

Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening.

will be using this as a reference when people need a reason why they should pro-actively treat asymptomatic children. Thanks Amy for the heads up!

Saturday, April 18, 2009

Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening.
Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening. PD, Brennan S, Gangell C, de Klerk N, Murray C, Mott L, Stick SM, Robinson PJ, Robertson CF, Ranganathan SC.Division of Clinical Sciences, Telethon Institute for Child Health Research and Centre for Child Health Research , University of Western Australia, Perth, Western Australia, Australia; Department of Respiratory Medicine, Princess Margaret Hospital for Children, Perth, Western Australia, Australia.

RATIONALE: The promise of newborn screening (NBS) for cystic fibrosis (CF) has not been fully realised, with improvement in respiratory outcomes unclear. We hypothesised that significant lung disease was present at diagnosis.

OBJECTIVES: To determine the extent of lung disease in a geographically-defined population of infants with CF diagnosed following detection by NBS.METHODS: Fifty seven infants (median age 3.6 months) with CF underwent bronchoalveolar lavage (BAL) and chest computed tomography (CT) using a 3-slice inspiratory and expiratory protocol.

MAIN RESULTS: Despite the absence of respiratory symptoms in 48 (84.2%), a substantial proportion of infants had lung disease with: bacterial infection detected in 12 (21.1%), including S. aureus (n=4) and P. aeruginosa (N=3); neutrophilic inflammation (41.4 x10(3) cells/ml representing 18.7 % of total cell count); pro-inflammatory cytokines with 44 (77.2%) having detectable IL-8 ; and 17 (29.8%) having detectable free neutrophil elastase (NE) activity. Inflammation was increased in those with infection and respiratory symptoms however the majority of those infected were asymptomatic. Radiological evidence of structural lung disease was common with 46 (80.7%) having an abnormal CT; 11 (18.6%) had bronchial dilatation, 27 (45.0%) had bronchial wall thickening and 40 (66.7%) had gas trapping. On multivariate analysis free NE activity was associated with structural lung disease. Most children with structural lung disease had no clinically-apparent lung disease.

CONCLUSIONS: These data support the need for full evaluation in infancy and argue for new treatment strategies, especially those targeting neutrophilic inflammation, if the promise of NBS for CF is to be realised.

Monday, April 13, 2009

Forever N Ever N Always

Whether its the adoption stories, the spiritual side of things or the great photography this blog I recently discovered is really capturing my interest, mind, and heart so I thought I would share.

Saturday, April 11, 2009

Prednisone Perk

Ok so I have had yet another allergic reaction to my allergy shots. This one not so bad as the first.


After the first one I went back down a level and worked my way up to maintenance level, this is my second shot at this level with no reaction last time. This time it burned SUPER bad going in again and I thought 'uh oh' but then countered with the thought that it was unlikely to happen a second time and I was just being paranoid. Hmm maybe not.

Those photos are taken 7 hours after my allergy shot. This time I started on 60mg prednisone immediately because doubling up on all the allergy meds (claritin, allegra, singular and triple doses benadryl dried me out and negatively impacted my lungs). I dont want to let it get out of control again, sast time I let it spread to below the elbow and up around my shoulder blade before we tried steroids and it spread further before they took affect getting down into my fingers and on palm my hands--not fun. My arms were huge swollen hot red lumps ta boot.

So the big question for me is why all the sudden now, I have been at this maintenance dose for 17 months! There are, unfortunately, no clear answers. The allergist while unsure why now said it can sometimes be associated with level allergens in the air being high and then you are exposed to that and the dose is too much cumulatively for your body to handle and tree pollens were very high with this second go round. I reacted to both shots but he said once reaction starts it would react to everything and the one arm definately reacted moreso to start with.

He thinks maybe I cant tolerate (frow whatever reason) the full 0.5 maintenance dose and was thinking of reducing it. I also asked how being pregnant would impact this because I feared having a reaction when I was pregnant as we plan to try again very soon. I did not want to take the chance nor did I want to take steroids etc on the flip side the shots help my lungs adn I want to stay healthy during my pregnancy. He said the protocol for allergy shots when pregnant (they are consdiered safe) is to cut dose in half and come 2x as often so 0.25 every other week instead of once per month. This introduces less allergen to your system at once but still gets the same net exposure over month, less at once means you are less likely to 'overflow your bodies capability handling it'. He said he had never had a reaction with this plan so we would try it for me irregardless of whether I get pregnant this spring or not.

Now for the bonus. I was just getting over a nasty head cold and knew I had a bit of residual in my lungs and sinuses I hadnt been able to get out. The steroid burst seems to be helping out with this immensely I am getting ALOT out and have taken advantage of the reduced inflammation by flooding my body with HTS in middle today along with the regular and I have also finally gotten some good sinus clearing. Steroids are NOT my friend dont get me wrong, I get emotional, jittery, anxious, and hungry but the 6 day course is not bad and is doing my lungs nicely so maybe, perhaps, it was meant to be because I truly do believe that everything happens for a reason!

Monday, April 6, 2009

Groundhog Day Resolutions ...take 4

First this groundhog thing rocks because I have never made it this long on tracking a large set of goals regularly, I finished tracking past couple years but never checked back periodically so thats a big bonus accomplishment.

LOOSE WEIGHT-F no real excuses here just completely sucking. I was doing well then let life get in the way and to boot last week I completely banged up my knee to the point barely walking let alone working out back on wagon this week.

FLUSH MY PORT ON SCHEDULE F Duh why am I so dumb about this?

FIND MORE EFFICIENT NEB SANITIZATION A+ I have been buying 4 jugs distilled and using it for boiling/nasal rinses. If you havent look into a pasta pot, super easy.

Determine a new peak flow range- On hold again, first steroids now I have a nasty cold affecting things.

Buy some breathe right masks for cleaning, dusting, etc DONE B+ plus wore them to clinic, need to improve on wearing in basement.

Buy allergen bedding and pillows! DONE (but had to ditch my expensive allergy pillow I know have an allergen cover over my normal pillow and am in search --sort of for a new pillow)

Start eliminating alot scented products from cleaning/beauty regimen. B+ Have went 100% green on cleaning, looking for a bleach substitute, looking for laundry alternative. Beauty regimen I now have the magazine/website need to actually set aside money in budget and do it.

Adding another to my list....

Research air purifiers and see if I should get a couple. F not started