Toe Health Update

Lung Function: Fantastic

We have actually had many visits to OHSU and the CF clinic this winter, but not for any ill health. Over the past few years, Toe has had some anxiety issues. It became enough of a concern that we felt it warranted a psych evaluation and were referred by our CF social worker. We spent late November and December doing three visits to OHSU to have Toe evaluated. The good news is that he is experiencing anxiety symptoms, nothing more serious, and that it is manageable. But, while he was being evaluated, Toe was diagnosed with ADHD. This is not a surprise and we are happy to have it on our radar, but it has been ANOTHER learning curve to hurdle. We are now facing decisions about how to best proceed.

We were given many options of scientifically proven remedies to try and had to sort out the order in which we would try them (or which ones we would skip). It was a tough decision, because the last thing we want Toe to do is have to take more medication. However, when we looked at the other options (fish oil, an elimination diet of artificial colors, martial arts or yoga, therapy, medication), we began to realize that 1) It might take a variety of solutions to help Toe 2) He's not in bad shape now, but as school becomes more focused, with more transitions (Jr. High, especially), Toe will really begin to struggle 3) As much as I love the idea of Toe taking yoga or martial arts, that involves other people, the potential for germs, etc. It also is another thing to add to a schedule full with school, breathing treatments, and medical appointments.

We have opted to start with some of the fast-acting medications to see if some could be a quick, effective fix to help Toe, partnered with therapy from the psychiatrist at OHSU who is doing Toe's med management (and coordinating with our CF team). We tried Concerta (a Ritalin derivative) over Christmas break and there were some benefits, but also some problems. We have ruled it out. Next we try Aderall. We are looking for a real benefit without altering Toe's amazing personality. If we don't see that, we will stop. In the meantime, we are trying some other things systematically. We've added fish oil and not noticed much of a difference, but it doesn't seem to be hurting.

I know there are many alternative medicine type things out there, but with Toe's CF we really want to stick with things the doctors recommend. His body reacts differently to many things that are considered herbal or "natural." We will be doing counseling therapy at OHSU and probably adding some kind of mindfulness training when the weather is better and there are fewer germs in the air.

We want to provide support for our amazing, sweet boy, so that as he grows, he has the tools he needs to meet the challenges of structure, routine of school and jobs.

In the meantime, in January, we went to CF Clinic and had a full check up plus a meeting with the gastroenterologist for the stomach aches Toe has been experiencing (severe enough to come home from school multiple days).

When your appointment is at 8:30 in the morning, you sometimes see a fantastic sunrise. You also do breathing treatment and PEP in the car.

Toe's lung function is fantastic. His lungs are in great shape, as is his BMI. The gastroenterologist put Toe on two medications - one for daily use, and one to take when he has the stomach aches. This puts Toe at FIFTEEN medications. Some are vitamins or supplements, but all are prescribed for specific reasons. Others are disease-specific medications that can only be acquired from specialty pharmacies. This is not fifteen pills a day - he covers that in two meals. This is fifteen different medications - to be swallowed or inhaled. The kid can swallow six capsules in one go. He does two and a half hours of breathing treatments per day. He does all of this because he knows it keeps him healthy.

And he HAS been healthy. I hate to jinx it, but Toe has not had antibiotics since April or May of last year. As CF is a progressive disease, we take these stretches with gratitude and appreciation.

Testing for lung function in the Respiratory Therapy lab