This was originally a message of advice but i am posting it here for anyone who can use some advice on "lung hygiene".
Many children require supplemental oxygen but oxygen is very drying and if your child is on it continually then the dry air will actually promote lung infections.
I suggest the following which you could choose one or all of them:
Inhalation:Your child most likely (because of the excess lung secretions) requires inhalation with terbutaline or ipratropium bromide -like medications, either intermittently or frequently.
The Hadassah hospital children’s center for treating cystic fibrosis In Jerusalem have gone from adding 7% saline(sterilized “sea water” from nasal spray) in inhalations (instead of 0.9%)to as high as 23% saline (the amount in the sea water nasal spray) because it better promotes the excretion and expectoration of thick mucus. Personally this is how I have been treating my son for many years.
Adding "in-between" inhalation sessions with more than the standard 1-3 cc
Summary: multiple sessions of saline rich inhalation a day.
Humidification: An Hydrogometer is essential to know if the room air is properly humidified. Small electronic ones, like used for a cigar humidor are cheap and accurate and portable. What the best humidity is is difficult to say but should probably be between 60-70%. I would not recommend less than 55% and this is especially relevant for those that heat in the winter with radiators. There is discussion whether “warm” humidifiers are safer than “cold” (ultrasonic) ones. In the end it’s a personal choice. Warm humidifiers produce copious amounts of vapor and will humidify a large room very well. In a smaller environment you must keep a window or door open. Furthermore the warm variety is usually not adjustable whereas the ultrasonic kind is. The ultrasonic kind though takes much longer to humidify a larger space but is therefore more useful in small spaces.
Summary: room humidifiers are essential.
Medications: There are medications to allow thinning of mucous. It is wise to consider prophylactic usage of either carbocysteine or N-acetyl-cysteine as well as treatment wise when there is some form of repiratory infection.
Anti-biotics are essential to fighting off serious infections but the proper timing, i.e. when to use, can be difficult and which antibiotic to choose is also a critical and difficult decision. Overuse of antibiotics is especially a problem for multi complex handicapped children who usually eventually have chronic colonization of Klebsiella, Pseudomonas Aeruginosa, Serratia Marcescens as well as others.
Inhaled antibiotics have not proven to be successful with handicapped children, again possibly due to their inability to inhale forcefully on request. I personally tried inhaled Gentomycin for Segev on more than six separate occasions for periods of between three to six weeks each time and found no benefit in treatment or staving off a recurrence.
With chronic infections more aggressive antibiotic choices need to be made. Segev for example has been taking Ciprofloxacin since he was six years old and yet this drug is actually forbidden to children under 12 (or even 16) and especially contraindicated for children whom suffer epilepsy since it can induce epileptic attacks. Yet Segev never had any bad side effects nor did I ever see his seizures increase when using this antibiotic, which was always for a period no less than 10-14 days.
But as always proper timing of antibiotic use is essential and chronic use will increase the likelihood of more severe side effects. Ciprofloxacin for example carries the danger of causing spontaneous rupture of tendons.
Nevertheless he has built up resistance and since it is not always possible to wait for sputum culture results we have gone over in time to using a combination of both Ciprofloxacin and amoxicillin clavulanate together. Even this has proven ineffective at times and as a last resort used Ceftazidime (Fortum ) at home but this requires injections into the muscle three times a day ( there are reports of two injections daily being equally effective)for a minimum of ten days. Injecting into the leg of a child who then will scream from pain and thrash about with the needle still in, or begin seizing is a harrowing experience that having done it as a course of treatment, will never do again. The option is admittance to hospital for two weeks.
Oreganol oil: sold in the US as “p73”, there are several manufacturers that produce pure oregano oil, personally I use “Bakto Eden oregano oil” from Bakto Flavors (north Brunswick NJ, USA) as I find it is even stronger than the p73 triple concentrate. It has been shown to fight Pseudomonas lung infections and I personally have seen its benefit after daily administration to maintain a comfortable status quo vis a vis recurrent lung infections. After about four months of daily dosages Segev went over oneyear without needing antibiotics!
The only period in his life that he was seriously ill for no more than two days at a time. All good things must come to an end though and he has needed antibiotics again. In his case what must be considered is that after a year on the oregano I gave him a break of five months and only after that period did he become seriously ill again with respiratory problems
Dosage is difficult to establish but I would recommend a range of 3-7 drops 1-3 times daily. The minimum range being 3 drops twice daily for maintenance and the maximum dosage stated as being a short term (3-7 day) adjuvant therapy during acute crisis.
Tests: sputum culture is essential to know what kind of bacteria are most prevalent and to apply the best treatment
Suction: Segev is suctioned every cough, sneeze, throat clearing or time he chokes on his saliva, not to mention of course if he vomits. Suction is critical. In many chronic care facilities, or even PICU’s suctioning is done according to a schedule, i.e. so many times a day, usually at fixed times. I believe this to be detrimental to a multi complex handicapped child’s health. There is also the belief that suctioning 'excessively' actually causes more irritation and production of mucus, more coughing (and often choking due to poor coordination). My experience is just the opposite, only after I increased the number of times suctioning, often also to induce coughing, did I see a reduction in the number and occassionally the severity of my son's lung exacerbations.
Ideally the scheduling to do the suctioning calls for a controlled environment meaning, sterile, while wearing latex gloves and after inhalation/PT therapy. After years of experience I maintain that despite the lack of sterility in doing multiple suctioning ad hoc, it is an effective way to prevent;
1) Mucous form being swallowed which then, in combination with delayed gastric emptying, sits in the stomach and can actually interfere with absorption of AED’s as well as cause nausea that will lead to vomiting.
2) Reflux material from entering the lungs.
Before I adopted the method of suctioning constantly, but with caution and subtlety in
technique, as much as fifty times a day, there would be times Segev would enter into Status epilepticus. Some cases treated at home with nasal midazolam or rectal diazepam and rarely in hospital with intravenous drugs. For about four years now he hasn’t entered SE. Also Segev would have a day or two of making faces, that he was nauseous, and at the end would vomit copious amounts of phlegm. Even if he had just had a meal he would only vomit the phlegm.
Surgery: nissen fundoplication, full or otherwise, is a common surgery for multi complex handicapped children but has a very high failure rate. After some time it releases and reflux again becomes an issue. Repeat surgeries are done although I opted not to for two reasons.
The original surgery for the g-tube and nissen was started out as laparascopic procedure but ofcourse Segev’s little chest couldn’t handle the positive air pressure to inflate the abdomen and his lung collapsed so they were forced to change over to a full open surgery tripling recovery time. As is documented intestinal atresias formed as a result of the surgery a year prior. Segev was taken by icu ambulance but due to excessive waiting when surgery was initiated his small bowel rupturing in three places. The resulting drama is a story I will document another time.
Tracheotomy. This is the one I have been putting off for many years now. After being warned that the collapse of Segev's airway was imminent (continually asserted since 2006) wrapping his neck with soft collars has provided sufficient support to stave the operation, which initially there was also greater fear of him not surviving because of the danger of anaesthesia in light of Segev's central Apnea.
Instead certain techniques have reduced reflux to a minimum, such as posture, i.e.
sitting up during meals and not lying down until hours later.
long drawn out g-tube feedings of 60 minutes or more.
Light finger pressure applied to the area of the pyloric sphincter in order to encourage gastric emptying.
Proper bowel movements. With Segev laxatives don’t work and manual stimulation with a flexible thermometer begins the bowel movement after which he is fine. Allowing too much time to pass between bowel movements builds up abdominal pressure and will easily result in vomiting.
In order to clear out phlegm compression and PT techniques are essentia,l as is postural drainage.
Despite popular thinking people suffering lung congestion have much better clearance of CO2 when lying on their stomach for periods. If at all feasible your child should spend time on their abdomens.
Removing air from the stomach via the feeding tube before each time the child is given liquids or food. I usually pull out between 50 and 150 cc's of air from Segev before a meal. Lying flat usually allows air to escape more easily. Some g-tubes one way valve can be tricky, not letting out air. First try pushing in a small amount (10cc) of liquid and then pulling. If this still doesn't work, (child in sitting position) with the tube inserted and clamp open and a 60cc syringe only one third full hold the syringe high and then massage the feeding tube closest to the g-tube valve; if any air needs to get out a few bubbles will appear. When they do pull the plunger of the syringe and slowly extract the air. Repeat several times.
April 17, 2010