Inside HBC

Specialist uses threat of social services

I have decided to switch pediatric pulmonology specialists.

A few weeks ago I received a call from a nurse from Fairfax Pulmonology (our specialist) relaying a social services threat from Dr. Osborn.

Being threatened by Valentino’s specialist doesn’t seem like a healthy functioning patient/doctor relationship.

Because I had canceled and rescheduled two of Valentino’s visits, Dr. Osborn wanted me to know that if I didn’t bring Valentino in by the end of the week, they would contact social services.

After the fear, anger, frustration AND confusion subsided I tried to share my thoughts on the situation and my decision, as Valentino’s mother, to reschedule his appointment.

Valentino had finished a round of antibiotics and switched to an albuterol MDI inhaler last month and was doing great. Then he got a little fever and sniffles that were not CF related. The fever and sniffles were teething related. Valentino had been up all night and was fussy and the last thing he needed was to be at the specialist being poked and prodded for several hours. So, I decided to cancel and reschedule his appointment. I explained to the receptionist that I was canceling because he was not feeling well due to teething and appointment would probably just be traumatic instead of helpful.

Shortly after I hung up from rescheduling the appointment, I received a call from the nurse threatening to contact social services if I did not bring Valentino in to the specialist.

It is outrageous that this is the state of affairs in the western medical model. Threatening parents instead of having a discussion and voicing their concerns and offering me the opportunity to understand their viewpoint and then share mine, and then perhaps subsequently meet in the middle. Perhaps I would have agreed to take Valentino in to see Dr. Osborn immediately.

The most important issue, for me, is that I am Val’s primary caregiver.

I see him every single day and watch his health closely. I am the mother that knows the difference between a lung infection and my teething baby.

I also have the medical records where Dr. Osborn recorded that I always adhere to the chest PT and medical regimine and seem to be handling the care of Valentino quite well since his diagnosis at 7 weeks old to his current 18 months.

Why then, is Dr. Osborn’s mode of communication to threaten me by relaying a message through a nurse? And why is there no discussion and sharing of viewpoints? No doctor or state agency should be able to force me to parent in a certain manner when it is clear, and I have the medical records that state, that I am a devoted, loving, and competent caretaker for handling my son’s CF?

Mother’s intuition vs. medical system

Navigating the western medical model while also listening to my own intuition regarding Val’s health is a trying task.

I have been very hesitant to give Val the vaccinations at the pace the pediatrician and specialist would like. I have him started on vaccinations but am behind on the entire list of “required” vaccinations.

Because of my determination to space out the vaccinations, our pediatrician sent a letter withdrawing from Val’s care. The specialist  also is upset and angry that we are without a pediatrician and that we are behind on his vaccinations.

I have seen Val take in a lot of medications already at only 16 months old: creon, antibiotics, steroids, albuterol, and laxatives. I feel that it would be dangerous and careless to assume that his nervous system would be able to handle vaccinations without some type of repercussions.

I’m not entirely refusing vaccination. And I don’t ever go against recommended treatment regimines for Val.

Yet when I raise questions about the safety of the vaccinations I am met with hostility instead of information. Should there not be any discourse regarding my child’s treatment plan? Should I not have a say in what goes into his body and the pace at which it happens?

I am the one who goes home with him and watches him daily and knows his breathing, his digestion, his moods and his response to his medications. So why should I not be allowed a voice in his treatment plan?

Pulmonologist update: lung status May 2010

Tuesday, May 25th we had our routine pulmonologist appointment. Val is fighting a cold or flu and perhaps a lung infection? The nurse did a throat swap/throat culture and we are awaiting the results. In the meantime his new medication routine is as follows:

nasal spray (1 in each nostril daily)- to handle the constant runny nose.

antibiotics- 2 week round of antibiotics

Albuterol via MDI (metered dose inhaler)- 2 puffs every 3 to 4 hours as needed. Once his cough subsides we can cut back on that. It is far easier than 10 minutes of nebulizer every 3-4 hours. Holding a mask over a 16month old for 10 minutes of nebulizer has become almost impossible.

We will get the results of the throat culture and blood work back next week and will post the results then.

Passionfruit & Papaya

Passionfruit:

The juice of passionfruit reduces cancer cell growth (research underway on this)

Contains phenolic acids and flavonoids known to be anti-microbial (key for CFers)

High in carbohydrates and simple sugars (great for weight gain for CFers)

Full of Vitamin C, A, & Potassium

Seeds of fruit are vital source of fiber

Studies have found that passion fruit extract helped provide relief for those suffering from asthma–the antioxidant found in passionfruit reduces allergies and inflammation, coughing, and wheezing

Papaya:

Contains papain–aids digestions

Papaya juice can help break down mucus

Rich source of antioxidant nutrients;; carotenes, vitamin C & flavonoids, B vitamins, folate and pantothenic acid, pottasium & magnesium & fiber

Contains unique protein-digesting enzymes including papain and chymopapain. These enzymes reduce inflammation

Is a Vitamin A rich food which helps promote lung health

hola from Costa Rica- breathing easy

Cystic Fibrosis is a disease that is caused by a defect in a gene that controls the amount of salt and water that line the airways of the lungs. Without sufficient lubrication, mucus builds up and blocks the airways, providing a fertile home for bacteria.

CF patients who surf, say they feel better and can breathe easier after being in the salt water.

Researchers found that inhaling an intensely salty solution — almost twice as salty as the Atlantic Ocean — improved patients’ lung function and slowed the progression of the disease, according to articles published in 2006 in New England Journal of Medicine. Australian doctors found that 41% of those who received the treatment avoided serious complications — such as weight loss, coughing up blood or a dangerous infection — compared with 16% of the other patients. The solutions helped remove mucus from the lung for at least eight hours, according to the UNC study of 24 patients, also published in the journal.

I’m starting Val early on exposure to salt water…with a vacation to Costa Rica. So, here we are taking daily walks on the beach and playing in the sand and surf.

Hasta luego! I’ll keep you posted on his lung function and digestion as our trip progresses.

Great article from USA today:  www.usatoday.com/news/health/2006-01-18-cystic-fibrosis_x.htm

regulating digestion with papaya and passionfruit juice

We are in Costa Rica and Valentino’s digestive health is exceptional. I have not had to give Valentino his Creon enzymes and Valentino has two regular bowl movements at the same time daily.

When Val was originally diagnosed with CF, he was clearly a kid that would have severe digestive issues. We’ve already had several scary treks to the emergency room where Val was given enemas. He routinely has either diarrhea or constipation and very odorous bowl movements.

As I’ve learned to adjust the enzyme doses to accommodate the amount of fats in his food, I’ve still been unable to find a happy medium. Val is either constipated and screaming in pain or has complete diarrhea and daily diaper explosions.

Since arriving in Costa Rica, Val has eaten fresh fruits, vegetables, chicken and fish. All the foods are locally grown.

Jean-Baptiste, our cook while we are in Costa Rica, served us a delicious juice on our first morning here. I filled two of Val’s bottles with the juice. Because it is so hot here and Val is sweating constantly, I hoped sipping the juice all day and eating salty foods would keep his salt levels in check. I had no idea the results of Val drinking the juice would far surpass simply staying hydrated. Val has had completely normal digestion/bowl movements that first day of sipping on juice all day. He drinks approx. 8-12 oz. of juice throughout the day.

Jean-Baptiste informed me that it is a juice blend of two fruits known to aid digestion–passionfruit and papaya.

Now we are at the end of our week stay here and I am thrilled and amazed to see Val’s digestion totally regulated without the use of his prescription enzymes. I will continue juicing papaya and passionfruit when we return home and see if this keeps his digestion balanced.

There has been many mornings over the past year that I’ve woken to either a diaper explosion all over the crib or to Val screaming in pain from constipation. I’m excited to see if using natural digestive enzymes found in papaya and passionfruit provide the same results as the do here in Costa Rica where the fruit is locally grown, fresh and Val is also exposed to the salt water and salt in the air.

Crazy for Coconut Oil

Our latest treatment method with Valentino is coconut oil, coconut oil and more coconut oil.

Coconut oil is said to benefit the lung function and help with weight gain and digestive issues. I’m not sure yet how coconut oil can benefit lung function. I have read some information that says it is ant-viral and anti-fungal. So I’m thinking the coconut oil helps fight infection. I will continue to research and post links as I find substantive research. If anybody already has links to reputable informational sites, please let me know.

We have been adding coconut oil to Val’s food, rubbing it onto his body, and in particular massaging it into his belly before bed. I have used the extra oil on my hands to rub into my hair, my face and body. The side effect of Valentino’s new treatment therapy is that my hair looks extremely healthy and shiny and my skin is nice and soft. My chapped lips have also been cured.

As for Valentino, we have been able to stop using the Miralax as his constipation has been eased. We have also stopped using the chemical laden Pediasure and have instead opted for homemade baby food with coconut oil and vitamins added to the food. I’m thrilled to have him off of the Pediasure since the ingredient list is pretty terrifying.

For now we’ll stick to coconut oil, coconut oil and MORE coconut oil.

This morning’s family breakfast:

pureed carrots with coconut oil (Valentino)

scrambled eggs with cheese (cooked in coconut oil) and sour cream on top

For parents of CFers: Tips for nebulizing a 10mo. old

When we first started nebulizer treatments 2 weeks ago, I was introduced to the new regimine by a puppy dog eyed specialist who used his quietest close talking voice to tell me he wasn’t sure how I would make it through the treatment regimine without some help. Perhaps he said that to turn me on to a challenge. I know that tactic. I’m a mom, after all. I’ve used that on my 4 year old to egg him on into trying to do something on his own.

I left the specialists office highly motivated to prove him wrong. Granted, I was sobbing as I left. Sobbing and tapping. (If you don’t know what tapping is, that’s a question for the resident acupuncturist).

Over the past two weeks I’ve discovered that nebulizer treatments can be pretty fun. They are a time to:

1. challenge your creativity

2. act completely silly

3. realize you actually have a great team around you. (I ask anybody who happens to be around if they are interested in giving me a hand in helping my 10 month old sit still while I put a mask over his mouth and nose). Wouldn’t you be up to that challenge?

I’ve discovered that the following things work very well:

1. Put on a movie that involves lots of dancing with bright costumes (Vegas showgirls excluded–not appropriate). We record episodes of So You Think You Can Dance. Valentino loves the music, costumes and dancing and will sit still for the full 10 minutes of nebulizer treatment

2. Ask siblings to help. I enlist the help of Romeo. I bribe him with the promise of legos or a toy from Target and in exchange he has to do jumping jacks, sing, and keep Val giggling through the treatment. (Sometimes Romeo is jumping up and down in front of Val with a frozen grin on his face asking, “Can I stop now? Will I still get the legos?”)

3. Hold your baby on your hip and do squats. Seriously. This way you get a workout in AND a nebulizer treatment AND your baby has fun. I do at least 3 sets of 15 squats. Valentino loves it.

4. Jog in circles (don’t go to far or the nebulizer cord will pop off the machine–keep the circles small).

Good luck! All of the above ideas work like a charm and are quite fun.

Whatever you do, don’t get discouraged or let anybody tell you nebulizing a 10 month old is really difficult.

Do please submit any suggestions or things that you have found useful when encouraging kids to adhere to their treatment regimine.

Changed therapy schedule-nebulizer 3x daily

Today is our 2 week mark for albuterol treatments 4x daily with the nebulizer. Since Val is doing so well, we have been moved down to albuterol 3x daily and chest PT as needed (when we hear any rattling, coughing, or Val trying to clear his lungs).

At this point, Val will hold the nebulizer on his own as we watch Sid the Science Kid.  Romeo picked a Sid the Science Kid DVD that discusses healthy eating. We’ve all been focused on eating healthier in the household. Val’s CF diagnosis has certainly re-invigorated our dedication to healthy eating. Now our whole family is making sure we’re taking in extra omega oils, getting our multivitamins in, cooking with coconut oil, and using the 5 flavors to get Val the salt that he needs. What would I do without all of Gillian’s amazing recipes?

Val holds his Nemo Nebulizer

Seeing the difference- pre vs. post albuterol treatments

wheezing, coughing, swollen eyes, low appetite

bright eyes, chubby cheeks, breathing clear

Many people bemoan how “time consuming” CF therapies are. It is so worth carving out the time & keeping up with therapy in exchange for free breathing. Valentino is cruising around and is full of energy now that he’s breathing clear. I’m thrilled and the time spent on therapy is minimal in comparison to the reward.