The Good stuff! Drugs, Drugs and more Drugs!

Okay….so when I say things like, “more tomorrow,” let’s just have an across the board understanding that may mean tomorrow, however it may also mean next week.
*******This blog post will discuss the drug changes that Maylie has in her new plan, this is in NO WAY a recommendation for anyone else. We have done EXTENSIVE testing to make sure that this is the best plan for Maylie and have complete confidence in the swedish team and their recommendations for May.*********

Well, Thursday of our travels brought the dreaded x-ray. I have been dreading the x-ray for months. Maylie had a cough from June of 2007 to January of 2008, which ended with her diagnosis. This cough was a cough that kept us all up at night, usually involved changing of the sheets due to “spitting up” as we liked to call it a number of times per week, vomiting regularly throughout the day (massive amounts of mucus) and a lack of interest in food or really anything because she was so exhausted from all her body had to do to clear everything with out help. Then in March, she got another cough, never as bad…..but enough to make you twinge about 10 times a day. I have heard from many warriors that this is normal, and I do take comfort in that, but I am also stubborn and want to fix everything. So, naturally, I would want to make this better too. So, needless to say that cough was not acted on quickly by her team and she had it until I admitted her into the hospital in October. With this kind of a year, I was expecting to see things that were difficult for me to accept.

However, we got fairly good news…. May’s xray was “abnormal,” with an increase of marking at the hili and bronchial wall thickening, however he said he thought from her previous doctor records that it would have been much worse, instead it was quite similar to other kiddos her age. YEAH!!

Maylie’s doctor went over all her different plans from each individual that we met with and made sure that we felt like it was feasible and then discussed the biggest change for Maylie….the agressive treatment that puts sweds years ahead in CF health. He put Maylie on a treatment dose (not a prophylactic dose) of flukloxacillin which she will take three times a day, everyday until she is six. The sweds have adhered to this with all of their patients for over twenty five years and have found it to be only advantageous, with the possible side effect of a bit looser stool, which of course we don’t want, but is not indicative of malabsorption in this situation. Luckily, we have not seen this side effect at this point. In adult patients they also see some colitis of the liver if on this dose, but, that has never been documented in children. The reason for a treatment dose of fluxloxacillin? It fights off the most common bacteria in CF childhood, Staphylococcus aureus. (Staph is of the greatest concern to the Sweds, while they treat pseudomonas aggressively as well, they have found staph to be a much more tissue aggressive bacteria) Staying on a treatment dose allows children to spend the first six years with minimal colds, allowing their lungs to develop as normally as possible. The one downside of Fluxlox that Anders brought up is that when ever you treat pseudomonas, you open up your lungs for staph and vice versa. So, diligence is of the utmost importance to stay on top of throat and/or sputum cultures to make sure that you don’t have any bacteria growing. Know that May’s doc said that most US doctors would say that this is a bit aggressive, but he has been using it for 25 years with great success and feels that it is of the utmost importance to the “formative” years of the lungs.

The next part of the treatment is going to be shocking for most, I am sure as it is not like the US model for CF treatment that I am aware of. May’s doc said that a “slight” cough is acceptable while accompanying a cold…for 2-3 days. If the cold improves May will continue as usual with Flukloxacillin, if more cough than change from Fluklox to either amoxicillin with clavulanic acid or trimetiprim-sulfametoxazole for 10 days. (I have not researched their availability here in the US, but he assured me they are forms of it are available) After 10 days back to Fluklox, if the cough continues after 10 days prolong antibiotic course to 14 days, if it continues change antibiotics to the other one from TMS to amoxicillin or vice versa. If the cough persists after all of that, look for Pseudomonas, preferably in conjunction with a test for antibodies for Pseudomonas. Then treat accordingly, via IV antibiotics if necessary. But, NO COUGH is accepted in Sweden, there is now waiting it out or doing extra treatments. Extra treatments will be added, but in conjunction with the above plan.

During the summer months some take their kiddos off Fluklox and some leave them on it, personal preference and depending on how their child is doing at that point.

As far as IV treatment, when necessary they give a much stronger dose of TOBI, but it is done only once a day rather than 3x. They believe that the research shows this to be much more beneficial to patients. In conjunction with the TOBI they give a betalactam antibiotic like Ceftazidime, Meropenem or Aztreonam 3xD. So, in Sweden they generally say that kids are on IV’s 2-4 times a year. While that seems like a lot, as we all want to brag about how little our kiddos are in the hospital or on home treatment, it is essential to remember that they react much more quickly than we do and do not accept any cough. They believe that this is what makes their patients so healthy into their late 30’s and 40’s.

Here is a link to an article written by Dr.Margareta Sahlberg (Maylie’s physio therapist) and Dr. Birgitta Strandvik, in the Chest Journal. The research was done on “Muscular Strength and Function in Patients with Cystic Fibrosis.” While they could not compare CF patients who exercise and those who do not, as they were not going to ask anyone not to exercise for 6 months, they decided to compare CFers who exercise with individuals who do not have CF and do not exercise. The findings were incredible! Check it out, it is on the bottom of the third page.

More later……maybe tomorrow! Hopefully I will get my pictures off my phone today and insert those into another post tonight!

Please feel free to email me with any specific questions about MAYLIE’s treatment plan. I am happy to share and I am very open about her treatment plan.

******AGAIN, this is NOT medical advice!!!!!*********
However, if it helps and leads to greater health for you or your child then my job is complete!