SMA Treatment/Care Options

...Under Construction...

*Information is Up on the Amino Acid Diet*

There are many aspects of care and/or treatment available for children with SMA, and there are widely varied opinions as to the "right" course of action.  The decisions parents need to make are difficult, and each family's situations and beliefs will vary.  On this page, I will list all the options that are available that I can, and then parents-along with their doctors or therapists-will need to make the decisions that best work for them and their child.

Parents dealing with a new diagnosis of SMA Type 1 in their children have three basic options of care/treatment.

  1. Palliative Care-  This is the option parents choose if they do not wish to intervene in their child's illness.  A child with SMA Type 1, with no intervention, has a life expectancy of approximately 8 months, with 80% gone by 1 year.   Palliative Care is also known as "Comfort Care".  Parents will choose to use oxygen and pain medications such as morphine to help keep the child as comfortable as possible until they pass away.  This method is for parents who believe their child's quality of life would be poor, so they choose out of love to let nature take its course and enjoy their children with the time they are given.


  2. NIV Protocol-  Also known as "Dr. Bach's Non-Invasive Protocol".  This is a respiratory protocol using a breathing machine called "Bipap" and a machine called a "Cough Assist" to help manage the respiratory issues that are core problems with SMA.  Parents will choose to use these machines as a method of providing respiratory comfort and strength for their child.  The life expectancy of a Type 1 SMA child using the NIV protocol is currently unknown and completely depends on other circumstances as well.  It is not a cure for SMA, there are no guarantees in life or SMA, and the children will still be profoundly handicapped, but it has shown to increase the quantity and quality of many children's lives to date.  The oldest known true Type 1's surviving using these methods were born in 1996.  This method is chosen out of love by parents who do not at the time wish to pursue a surgical option but do not wish to let their child go, and believe they can provide a good quality of life for their child and believe that what they are doing improves the quality and comfort of their child's life, also attempting to prolong their child's life out of hope for the future.


  3. Tracheotomy-  This is a surgical procedure, creating a hole in the throat that provides breathing assistance via a permanent ventilator.  The life expectancy of an SMA Type 1 child with a trach is unknown and completely depends on other circumstances as well.  It is not a cure for SMA, there are no guarantees in life or SMA, and the children will still be profoundly handicapped, but it is possible to survive to adulthood.  This method is for parents who believe they can provide a good quality of life for their child now and in the future, so they choose out of love to prolong their child's life indefinitely out of the belief that their child is happy and simply receiving respiratory support, and out of hope for the future.


  • For Information on the Amino Acid Diet, Please visit HERE.


  • Click HERE to view the Presentation made at Dr. Bach's Conference by Jennifer Majors, PT.  (Thank you!)  Sit back and the presentation will play on it's own, taking about 8 minutes to complete.

  • Or Click HERE if you would prefer to move at your own pace or have trouble with the presentation.  Maximize the screen to see everything better.

  • Please E-mail Ms. Majors for any specific questions you may have on any of the issues addressed in this presentation, and she will be GLAD to help you out as best she can!  Use this as a jumping off place to determine what you would like to find out more about.


Click on the "Issue" in which you are interested for more information:

Feeding Issues
    Feeding Equipment
    Handling Secretions

How & why to start a child on an amino acid diet including  glutamine.


Tube feeding, the  different types of  tubes, their pros and cons.


How to recognize when the swallow is waning and it's time for a tube.


What to expect before & after g-tube surgery


Respiratory Issues
    Oxygen Use
    Respiratory Distress/Pneumonia Care
    Tracheotomy/Permanent Ventilation
    Chest Percussion Therapy
    Recognizing Respiratory Infections

Acute Respiratory care

What to expect and fight for during a  hospital stay as well as links to the studies to back your requests up.

Therapy Issues
Occupational Therapy
        Adapting Toys for their Play
        Grasping Objects
    Speech Therapy
        Oral Motor Exercises
        Word Association
        Speaking around muscle weakness
    Physical Therapy
        Positioning and Equipment
        Contracture Prevention
    Water Therapy
        Help with Movement
        Relaxation, Coordination

Other Health Care Issues
Doctor Issues
        Finding the right physician
        Coming Prepared
        Taking charge of your child's care
        Getting the equipment/care you need
   Home Health Care
       Finding home nursing care
       What you are entitled to

Practical Issues

How to bathe a child as they get bigger.


Things to consider when getting a wheelchair.


How to encourage leg movement.


Stretches, how to stretch and how often to prevent contractures.


Standers, how to use them, the different kinds of standers, the benefits.


How to make a switch-adapted toy.

Financial Issues
Finding the financial support available in your state.

    National financial support systems

Equipment Information  

Cough machine - Made by Emerson - called CoughAssist In-Exsufflator  - model number CA-3000 - has a manual and auto mode setting.  Please go to for a picture and more info.  Note: This does not have an internal battery backup...please see below under battery backup for more information.    

Suction machines:  There are a number of different ones you can get.  The DeVilBiss suction unit comes in a portable bag and has a approx. 30 min. battery backup.  Model number 7305P-D made by Sunrise medical -   

Pulse-ox (monitors heart rate and oxygen sats) - Nellcor Puritan Bennett NPB-290 - has a 14 hour battery backup.  There are a number of different pulse-ox machines that you can get.  This is just an example.   

BiPapThere are many different brands of BiPap - none of these machines have internal backup batteries...please see below under back battery for more info. Here are just a few examples of the various BiPaps that some families use: Sullivan Vpap II, Knightstar and Respironics ST.  If you can get one that you can change the settings on your own - without having to turn the machine off - it would be an advantage when your child is sick and you need to bump up the settings.    

Heated Humidifier for use with BiPap - Recommended year round since the air from the BiPap is dry.  Fisher Paykel Humidifies - HC 100 and HC 150 are a couple of examples.  For a picture and info please see this link   

Backup Batteries:  The cough and BiPap machines do not have internal backup batteries.  Most families use Marine style batteries. You will need to purchase an appropriate battery charger.  You will need to purchase an inverter as well  - this is a device that has a normal looking outlet plug on one side and on the other side has a wire that can be connected to either an external battery or plugged into a car cigarette lighter.   Please note if you are connecting it to an external battery, make sure you have leads on the end of the wires that can screw into the battery...clips tend to fall off easily and disconnects the power to the machine that you are trying to run.   

Please note the Cough machine cycles using a computer chip and requires an inverter called the Excel Tech 250w-12 volt.  You can get names of distributors at or by calling the company at 800-886-4683.    

You may want to purchase TWO batteries and TWO for the BiPap and one for the cough machine...since it's difficult to determine how much each will drain the battery.   

Here are some examples: Gel-tech Deep Cycle Marine type no. 8GUIH. 12 Volt 6 Amp Recharger -Lineage Series model LSX1206. To run the BiPap we use the following Inverter: Respironices DC interface model, 11.5-15 VDC 15a max input, 115 VAC 60HZ 150w output.  Again - this will NOT work with the cough machine.   

You can purchase bigger batteries...but they are heavier and may require a more powerful recharger - such as 12 volt, 12 amp.  Sears makes a number of rechargers that you can look at that should match what type of battery you purchase.




Feeding Issues

Nutrition, donated by Stephanie Price

Over the years, I have had many parents ask me about the diet I use for Hannah. I will state over and over that I learned this diet from other moms who have had great success with it.  I hesitate a bit to write this diet information. All of the children with SMA are unique and different individuals just as we are all as individuals unique and different.  There are some basic fundamental principles that should be followed if you decide to use this diet for your child in my opinion. ……

Elemental amino acid formula

Double dilution or more of the formula


No meats

No dairy

No junk food (candy, soda, ice cream etc. etc)


Because the children are so different in where their strengths and weaknesses lie, their formula recipe needs to be adjusted for accordingly.

I emphatically do not believe you must have a medical background or a college degree to feed a SMA child this diet. All that is needed is hope for your child and willingness to learn. I firmly believe this diet helps slow the progression of muscle loss and or stops the progression.

Typically children with SMA have inborn errors of fatty acid and protein metabolism.  Most SMA children I know of who are not on the diet present with symptoms of malabsorption and Kwashiorkor .  The children look bloated. Some children have fatty livers (as noted upon autopsy). One common mistake is for SMA children to be put on high caloric-high high-protein diets. This type of diet makes the children weaker. They can not handle the protein and tend to become fat from all the calories. They also become sick, get recurrent infections and usually end up dying. Unfortunately this happens all to frequently with SMA type one children. This diet is not just for type 1 SMA but all types.

Children with SMA have a lot of allergies. I am not sure why when tested lab results turn up negative to the many things they seem to show reactions to. The source of all allergens is protein. Dust, animal dander, plants etc. Allergens are caused by antigens floating around in the bloodstream. Dairy and milk proteins seem to be a major allergen for children with SMA. Other allergens are whey, soy, and oats. Side effects noticed are copious secretions, flushing, high fevers, bloating, weakness, general malaise, bronchitis, pneumonia and constipation and ear infections.

The beauty of the elemental amino acid diet is that you are giving protein in a broken down simplistic form. Whole proteins tend to be the problem. These proteins are not easily digested or are not utilized somehow in SMA. This is also why when utilizing the amino acid diet you also must eat only fruits and vegetables to get the most benefit.

I have been asked who designed the diet for Hannah? I did! I began with the Tolerex and added one ingredient after another over a period of time to make sure no adverse side effects were noted. I learned the basics of the diet from other families of type 1 children who were using the diet and had success. Their children were living. I noticed the children who were on formula such as Similac, Pediasure, Progestimel, Scandi Shake etc. were not doing as well and becoming sick and / or dying.

Tolerex and/or  Pediatric Vivonex does not give all the necessary vitamins, minerals or necessary fat according to the RDA for all age groups. This is why I add additional vitamins, minerals, evening primrose oil, safflower oil, vit e, calcium, magnesium, phosphorous, potassium, co Q 10, etc to Hannah’s diet. I try to give most of the vitamins and minerals in amounts close to or a bit above the RDA. All one needs is a nutritional almanac to research this. I usually recommend the one written by Gayla and John Kirschmann. There are many books on the market. This book in particular is easy to read and readily available in most bookstores. The FSMA website has a few articles you can refer to under nutrition.

My opinion

In SMA you do not need a lot of protein for protein synthesis. A normal healthy child is recommended to get 2 grams per kilogram of protein a day. In SMA it has been my experience that less is better. 1 to 1 ½ grams per kilogram are sufficient. SMA persons do not have the lean muscle mass that "normal" healthy persons do. This is why they do so much better when fed less protein. Due to the lessened muscle mass, this can cause problems. Vitamins and minerals can not be stored. The stores that they have are not stored long because they have nowhere to stay.

To begin

Use 1 to 1 ½ packets of tolerex. Double dilute per package instructions. This is essential. You can dilute with juice and or water. I add even more water but you must double dilute otherwise the formula is too strong. Then you feed this mixture over the course of a day. Not to be given all at once. Add baby food fruits and veggies at meal times. No whole proteins like chicken or veal. No dairy. You can add vitamins and minerals. You can add safflower oil. Safflower oil is an essential fatty acid.

I mix the Tolerex in a blender with baby foods. This consistency is not to thick to place through a g-tube. It works quite well. The key is dilution. You must flush the g-tube after every feeding. If a continuous feed is given via pump then additional water can be bolused or added in over a 24-hour period of time. I have used both methods and both ways work well.

The danger of most physicians and dieticians who try to prescribe this diet is that they overload these children on amino acids. Four to five packets daily are prescribed. This is just way too much and is dangerous! It can kill these children. SMA patients can not handle this much amino acids and or protein! I do not know of anyone who uses more then 2 packets a day. This is for children that I know of up to age 13. These children do not have the muscle mass to handle this much protein. You can not treat these children as if they are " normal". Another danger is that physicians and dieticians prescribe way to many calories. A normal healthy active moving child needs more calories. Typically 70-80 kcal/kg. In SMA, a good range is 60-70 kcal/kg. As long as the child grows and is gaining weight then they are doing well. Children do grow when on this diet and do gain weight. You can not base their growth on the charts. As you recall, the growth charts are for formula fed children not breastfed or Tolerex fed children. The main factor is they grow and gain weight. When they are fed to many calories they get fat and can not breathe or move as well.

For those who are breastfeeding. Keep it up. I still give Hannah breastmilk. I am a firm believer this is another reason she does so well. You can mix together the Tolerex and the breastmilk. (Do not mix breastmilk together in a blender). If a mom were still nursing I would encourage this. I recently had a baby. I am again pumping my milk for Hannah. When I was no longer able to breastfeed prior to the birth of my daughter, I got breastmilk from a Milkbank in North Carolina. ( There are six milkbanks in the USA. A doctor who researches SMA and nutrition has stated to me that when children with SMA who breastfeed stop nursing they go downhill and rather quickly. My belief is that it is because they are put on formula with dairy.

When beginning I recommend you start with just the Tolerex. The next ingredient to add would be glutamine. Start with 500 milligrams. Glutamine is the most abundant amino acid in the body! Typically SMA children are low in glutamine. A very conservative doctor who studies SMA and nutrition recommends 200 - 300 mg/kg glutamine. I have used additional glutamine with Hannah since she was one year old and have never had a problem.

Signs to look for are increased heartrate and vomiting. These are classic signs of protein toxicity (to many amino acids).  I have not ever had this problem. Begin slowly and work up the amounts of amino acids. You should be OK. Now that I have said this, I give no 100 percent guarantee. I just believe you will not have any problems if you do it this way.

The next ingredients to add would be up to the mom. Usually calcium and the vitamins are a good place to start.

I also highly recommend you begin giving acidophilus to counteract the yeast problems so many SMA persons have. I have never ever heard of any problems from giving acidophilus only great results. I use Natures Way Primadophilous for children. It is found in the refrigerator at the health food store here. Read the labels. A lot of the acidophilus has dairy proteins in it, especially, the liquid ones.

In SMA, there is a lot of loss of water via breathing fast, open mouthed, and sweating. I highly recommend you give lots of water for hydration. Secretions should be thin not tacky. The recommendation for a 1 - 3 year old is 115-125 cc/kg of water. I give Hannah the amount a younger child should get. Hannah almost age five gets 53 or more ounces a day of liquids in her diet consisting of juice, water and / or breastmilk. On days where she is hot and sweats, I give her more water.

It has been proven that children on this diet do not get scoliosis like other SMA children. In some instances, there has been a correction of the degree of curvature of the spine. I know of one example where a little girl with type 1 went from a 33-degree curve to a 21-degree curve with early detection and proper bracing! Some SMA patients have begun this non-dairy elemental amino acid diet when having been on a dairy or whey or soy formula diet and actually had dramatic improvements in curvature of the spine as well.

Currently I add the following to Hannah’s diet in addition to the Tolerex……









Co enzyme Q10


B12 (oral and b-12 sublingual drops)

Folic acid


Folinic acid

Vitamin E

Vitamin C





Evening Primrose oil


Other things I have tried…….
I have given Hannah flax seed oil. I thought it would be great. She had almost immediate respiratory problems, became cyanotic (blue lipped) and had secretions the rest of the day even though she only had one feeding of this. Same thing happened with fish oil. This was my experience.

If you really are going to use this diet, I recommend you have labwork drawn regularly (fasting quantitative plasma amino acids, basic metabolic panels, mg, zinc, phos, creatine ). When fasting the children get their morning meal and then fast 6 hours. The lab results always come back for Hannah saying within normal limits. However, if a biochemist reviews the results it is noted otherwise. The biggest problem most often seen is metabolic acidosis!

I send the lab results to a biochemist in Canada at Nutrichem ( I speak to Kent MacLeod. He mixes more amino acids to add to the tolerex food mixture I give Hannah based upon HANNAHS bloodwork. I just feel this works best for me. I am not good at guessing and want to try to do what I think is best for Hannah. Most of the families who use the amino acid diet with their children just guess and add more amino acids and supplements. I do not feel comfortable doing things this way. Again, my medical background is a strong factor in this area. I do it this way. I am the only mom I know who does this. All the other moms just guess. This is ok for them. They add glutamine, arginine, creatine, some branch chain amino acids (leucine, isoleucine and valine) All this "stuff" is what I give Hannah extra of from my mix made in Canada. What can I say? It still is a guessing game however. Noone truly knows all the ins and outs of SMA. I usually follow the recommendations of the biochemist in Canada. He however is also no "expert" in regards to SMA. I have found Hannah gets weaker sometimes with the mix I give her so I slowly work up the mixture of which I give her until I am at the recommended dosage of the biochemist. To much protein? Over time Hannahs body adjusts and she is actually stronger then weaker. All the children are different and their individual diet has to be made for them. The basics that are important are the elemental amino acids, essential vitamins and minerals, no dairy, whey, soy or dairy derivatives like casein, casienate etc. These all cause weakness in SMA.

Over the years I have known many parents from all over the world and have talked with them regarding this diet. Some have used this diet and some have not. There are families who would give their left arm to know all this information I have just told you. Those that do say they wish they had known of it earlier. It is best to begin this diet when the child is young so that muscle wasting can be spared. In my opinion why not try the diet? You have everything to gain and nothing to lose.

Unfortunately, diet alone is not enough when it comes to SMA. Aggressive respiratory care is needed as well. I again refer you to Dr. John Bach. The children who follow this diet and his respiratory care protocol tend to live longer and healthier then any other SMA patients in this country!

If you would like I can refer you to parents who use this diet and will tell you the dramatic differences they have seen in their children since beginning this diet.

There is a lot to this diet as you can see. If you have further questions please e-mail me.









Respiratory Issues, donated by Monica English

As the mother of a child with type 1 SMA, I wanted to take the opportunity to share my perspective on respiratory care.  SMA is a very misunderstood disease and often in trying to do the right things we are counseled by well-meaning care providers to do the exact opposite of what will truly help. I take the responsibility to educate myself so that I can actively participate in all of the decisions - medical, emotional, social - that affect my child. I know that it is through this education that my child lives and thrives today.

 Far and away the leading cause of death for children with SMA is respiratory complications.  Because SMA affects all voluntary muscles controlled by the motor neurons in the spinal column, the muscles that aid in breathing are affected.  These children breathe very in very shallow breaths and coughing effectively on their own is almost impossible. 

 The first thing I wanted to address is the incorrect use of oxygen for our children.  If children with SMA can fill their lungs with air they have no problem using the oxygen available.  Their problem is filling their lungs with air and clearing their secretions.  Giving continuous oxygen will not solve either of these problems.  Oxygen can actually be detrimental to our children.  Delivering continuous oxygen will bring the oxygen saturations in their blood up and make the numbers on the monitors look good but will not solve the underlying problem which is a need for better lung expansion and to clear mucus from the airways.  There is a sensor in the brain that controls rate and depth of breathing.  If there is not enough oxygen in the blood the brain sends a signal to the body to breathe deeper.  Our children breathe shallowly in the first place; if they are given continuous oxygen, the drive to breathe deeper is satisfied and the child’s muscles don’t have the opportunity to continue to work hard and maintain their strength.  It becomes a downward spiral - shallow breathing leads to less oxygen in the blood so more oxygen is administered which leads to breaths becoming more shallow and on and on.  On top of all of this the mucus that probably caused the lower oxygen saturations in the first place is still sitting in the lungs blocking air from being delivered to that particular area of the lungs.

 The first thing we use to help our child with lung expansion is a bipap machine.  We use this to aid our child’s breathing when she is asleep or in the case of a chest infection.  The bipap has a mask that is secured over the nose, the mask attaches to a tube which attaches to a machine that gives an extra “push” of air when the child breathes in.  This way air is delivered deeply to the lungs during the time the bipap is used. Each morning we take it off and she is free and clear for all of her waking hours.  The bipap helps to fully expand the lungs keeping all portions of the lung healthy.  If a child is not able to breathe and unable to use portions of the lung it does not take a long time for that unused portion of the lung to die.  By helping her fill her lungs with air properly the lungs stay healthier. 

Another thing that deserves mentioning here is the settings for the bipap.  Often when a bipap is prescribed it is prescribed with settings such as 8/4 or 12/6.  The first number refers to the pressure delivered when the child is breathing in and the second to the pressures delivered when the child is breathing out. Settings such as those mentioned above are too low to truly expand a child’s lungs and give them the benefit they need from the bipap. My daughter has used settings around 18/4 since she was seven months old.  We look for pressures high enough that her chest expands well when breathing.  The pressures delivered when she breathes out can be left as low as the machine will allow.  These children don’t have problems breathing out - just in.

 The second machine we use for lung expansion is the In/Exsufflator also called the Cofflator or Cough Machine.  This machine simulates a cough by delivering a deep breath of air into the lungs and then switching to a negative pressure that pulls the air out quickly and moves airway secretions and mucus up to the point that they can be suctioned out of the mouth or nose.  We have watched this machine save our child’s life several times.  It is surprising how a small amount of mucus in the wrong area of the lungs can threaten the life of a child with SMA. This machine is the only thing we’ve found to effectively move her secretions so that they can be cleared from her airways. We use the In/Exsufflator as part of respiratory therapies in the morning and at night when she’s healthy to clear whatever mucus has built up and really expand her lungs well.  We also use it  frequently when she has a chest infections to clear the extra secretions created during the chest infection.

 We have a pulse oximeter at home.  This is a machine that measures the percentage of oxygen in the blood and the heart rate.  We use the pulse oximeter to gauge her need for airway clearance.  We do preventative therapies morning and night when she is well and continually monitor her oxygen levels when we suspect a cold.  When her oxygen saturations drop below a certain level we go through the therapies needed to clear her airways.  Treatments during times of illness will be addressed in another section of the website.

Here is a very detailed write-up of what we do for Taleah on a well day.

 1.  Chest Percussion Therapy on the Right Side

a. At a slant so her head is inclined - 5 minutes

b. Flat - 5 minutes

c.  At a slant so her feet are inclined - 5 minutes

2.  Coughing with the In/Exsufflator settings are 40 over 40

a.  Five cycles of 2 seconds inhale, 2 seconds exhale 1 second pause

b.  Give a break for child to catch their breath

c.  Five cycles of 2 seconds inhale, 2 seconds exhale 1 second pause

3.  Suctioning

a.  Deep suction nasally

b.  Suction orally

4.  Repeat steps two and three

5.  Chest Percussion Therapy on the Left Side

a. At a slant so her head is inclined - 5 minutes

b. Flat - 5 minutes

c.  At a slant so her feet are inclined - 5 minutes

6.  Repeat steps two, three & four


Chest Percussion Therapy

 When we do chest percussion therapy we use an anesthesia mask and put tape over the opening that would normally attach to tubing.  This allows us to get achieve good percussion.  We thump the upper, middle & lower lobes of the lungs on the front and back of her body.   Some like to attach tongue depressors to the mask to make a bit of a handle.  I find I like just holding the mask in my hand and using it that way.   We always make sure there is a thin layer of cloth over her body so we are not percussing on bare skin.  We also make sure there are no buttons, snaps or zippers where we are percussing.  Often people who see us doing this for the first time are concerned that it will hurt her because the hollow mask makes a loud thwapping sound but she really loves this part, often she will fall asleep as we are percussing.  If you are concerned try it on someone else and see how firmly you can percuss on their back without causing any discomfort.  We use pillows to position her at the different inclines.  If you happen to have Versaform Pillows for positioning this works really well, if not you just have to get a little creative with your pillow stacking to make a good slant. 


In/Exsufflator or Cough Machine

 For the In/Exsufflator the pressure settings are 40 over 40, the timing is 2 seconds inhale, 2 seconds exhale and 1 second pause. Because the cough machine measures in pressure rather than amount of air delivered, the settings are the same for children and adults - the machine will adjust the volume as needed.   The newer models have a inhale flow knob.  The company rep told me that the setting with three arrows is for adults and the setting with one is a more gradual for babies.  After I spoke with a rep I spoke with a very knowledgeable pulmonologist who said that even the babies need the quick inhale, so we have always kept ours set to the three arrows.  Our model also has either a manual or automatically cycling options.  We use choose to use the automatic rather than flipping it from inhale to exhale to neutral each cycle. 

Because the knobs are so easily bumped we check the pressures and settings before every use; the cough machine can deliver an awful lot of pressure if the knobs get bumped.  We have a mask, the same kind they use to deliver anesthesia that attaches to the tubing from the cough machine. We try to make sure we lift a little on the back of her neck to make sure her airway is open.  I should mention that there are babies who cannot tolerate being on their back and they use the cough machine while turned to the side with no problems.    We place the mask over Taleah’s nose and mouth and flip the machine on.  It always starts at the inhale and that solves the problem of trying to quickly get the mask into place during that one second pause.  It takes firm pressure to get a good seal, we hold it and count out loud until the five cycles have passed.  I feel it important to count out loud so that she also can know how far through the therapy we are.

Now I will be honest; this is not Taleah’s favorite thing in the world but I counted it up one day.  If she’s getting a total of 8 sets of five in the morning and the same at night, that’s a total of six minutes and forty seconds of something she doesn’t like each day to keep her clear and healthy for the rest of the day. 



 You will find that there are dozens and dozens of different ways to suction, let alone different lubricants, different catheters, etc.  I’ll tell you my way but this is one thing that can be done effectively several different ways. 

We were originally taught to suction using Bard Urological catheters attached to a Y shaped valve.  The Bards  were very soft and kind to her airways.  The problem we ran into was that Taleah was smart enough to swallow at just the right time so that rather than guiding the catheter into her lungs it would go into her stomach.  We switched to a Tri-Flo Suction Cath-N-Glove Kit.  This catheter is a firmer, but that meant that we could wind it around our fingers (gloved of course) and give it a curve that held as we introduced it into her nostril.  We haven’t had problems getting into the right place ever since.  Another nice thing is that the kit comes with a basin for sterile water and sterile gloves. Also with the Tri-Flo catheters they have centimeter markings so you can watch how far you are going in.

Another point for debate is what is used to lubricate the catheter.  Some will use water soluble surgical lubricant, but others will tell you that even that can dry and clog the airways.  We just dip the catheter in water before introducing it into her nostrils. 

I should mention that this is not a skill that can be learned just from reading.  We were taught during Taleah’s hospitalization in New Jersey for her G-tube placement.  Once we got home I needed some refreshers so Taleah’s pediatrician arranged for us to go back into a local hospital and learn again I suggest you do the same.

 Anyway, we wash our hands really well and dry with paper towels (cloth towels can harbor bacteria).  We fill the basin with sterile water.  We then we don the sterile gloves and designate one hand as the clean hand that touches nothing but the catheter and one hand as the dirty hand that covers the opening in the catheter and holds the back of suction.  We slowly and carefully introduce the catheter into one nostril and pull at a moderate pace back while covering the opening in the catheter.  If we get a lot of yucky stuff we go down again and yet again until things look fairly clear.  Then we repeat with the other nostril and if we think she might have brought some mucus up into her mouth we suction her mouth as well.  When we’re done we suction some water up through the catheter to clean out the tubing.   







Therapy Issues


1.  Chewing in rhythm, beginning slowly and increasing the speed
2.  Chewing like a camel, moving the jaw from side to side
3.  Stretching the mouth as wide open as possible
4.  Move jaw from extreme right as far as it will go and reverse position  to left.
1.  Stick tongue out and in (like a lizard)
2.  Touch each tooth with tongue
3.  Don some tonghe clicking
4.  Touch the nose with the tongue tip
5.  Touch the chin with the tongue tip
6.  Move the tongue in a circle around the lips (licking something off the
7.  Move the tongue from corner to corner of mouth
8.  Push the tongue against the left cheek wall and then over to the right  cheek.
9.  Curl the side edges of the tongue up to form a grove down the center
10. Raise the tip of the tongue to the upper gum ridge behind the upper  teeth while the mouth is help wide open.
1.  Round lips in a pucker (blowing kisses)
2.  Stretch the lips into a smile
3.  Rotate between #1 and #2
4.  Compress and release the lips rapidly (paa, paa, paa)
5.  Talking out of first one side of the mouth then the other
6.  Hold a cork between the lips and expel it to hit a target
7.  "Curl" the upper lip up to try and touch the nose
1.  Blow bubbles in water
2.  Blow soap bubbles
3.  Chew and blow bubble gum
4.  Blow out candles
5.  Blow Pinwheels
6.  Exhale vocalizing "ah" and time it to see who can vocalize the longest
7.  Use a straw and cotton ball, inhale and hold the cotton ball against
     the straw for as long as possible.






Health Care Issues







Financial Issues









Home / SMA Support / SMA Info / SMA News / Links / Guestbook / What's New / Contact Us