QOL Responds to Sucraid Shortage – Time Sensitive!

*Please note this is time sensitive information. Updates will be posted as they are available.

Sucraid Shortage and QOL Response Summary

SUCRAID® SHORTAGE UPDATE

Conference Call with QOL Medical CEO Derick Cooper on April 13, 2016 at 2 p.m. (EST)

For current information on Sucraid and QOL updates, visit the following websites:

The following are highlights and follow-up on Q&A from the Conference Call

The listed questions were provided to Mr. Cooper in advance. Some were answered in conjunction with others during the conference call so not every question is answered precisely, but is addressed at one point or another. I’ve noted a reference to the answer for another question when it applies.

(Note: I’ve done my best to present this information in an objective manner and to state the information provided by Mr. Cooper as accurately as possible for informational purposes only.)

  1. Could QOL Medical clarify the reason for the shortage? Is it related to a combination of factors or primarily one?
    Information known prior to the conference:
    a) Ingredient related: The FDA website statement mentions “shortage related to unavailable approved active pharmaceutical ingredient (API) from a supplier due to requirements related to complying with good manufacturing process.”
    b) New facility and production related: Letter by QOL Medical CEO March 2016 mentions the construction of an entire new facility and transfer of production to entirely new building.
    ANSWER: Mr. Cooper further explained the change in facilities was to transfer the production of the primary ingredient in Sucraid – sacrosidase – from a food-grade manufacturing facility to a pharmaceutical-grade facility per FDA request.
  2. Reason behind the decision to change production which resulted in the shortage: Sucraid has been produced for years and used by patients for 17+ years. If the formulation hasn’t changed at all, what happened now, to get us to where we are now?
    ANSWER: Sacrosidase originally made in a food-grade facility that no longer met pharmaceutical standards. QOL has rebuilt a new facility to meet all current standards. They are working on details for final approval to begin manufacturing with FDA. Although the production of the ingredient met FDA requirements prior to this change, QOL is now  “migrating manufacturing to meet modern standards”. Mr. Cooper mentioned that there are “items” to finalize with FDA within the week,  but did not mention what those details were.
    According to Mr. Cooper, the  requirements to manufacture pharmaceutical-grade products involve two steps: 1) Tests of ingredient itself after processing to ensure that the product still effective, and no contaminants were introduced  during the process. 2) Manufacturing process itself is very complicated. Mr. Cooper did his best to describe the general steps involved as an example to demonstrate the details and steps involved in the migration. They start with a lot of yeast, then extract the sacrosidase from the yeast and filter multiple times to ensure only sacrosidase is left in a pure form. The filter must be checked by outside vendor who has valid methods for checking filter. Each part of this process needs to be documented and submitted to the FDA. QOL has made valiant efforts to follow these procedures and paperwork requirements the entire time. FDA regulations are ever-changing and do not always apply to each specific product produced. These guidelines are subject to interpretation, and QOL has done their best to interpret the guidelines according to the specific process and manufacturing of sacrosidase (Sucraid). The FDA and QOL are working together to expedite the process as much as possible.
  3. What does QOL Medical see as the current status of the shortage? Can you expand on the below information?
    Information known prior to the conference:
    a) Letter by QOL Medical CEO March 2016 mentions “we have built this new facility, transferred the manufacturing process, begun production, and filed the necessary regulatory application with the FDA for approval. We have produced Sucraid® in the new facility and are awaiting final regulatory approvals for distribution.”
    b) Calls to Sucraid Assist / One Patient Services mentioned new facility has already produced Sucraid but that those lots have not been FDA approved.
    c) Accredo representative has stated the shortage prolongation is due to the FDA not approving an ingredient in Sucraid.
    To clarify, it was the production of the main ingredient, sacrosidase within a food-grade facility the FDA decided needed to take place in a pharmaceutical-grade facility which promoted the changes. QOL did not anticipate the building and transfer to new facilities taking so long, which is the assumed reason they did not manufacture enough Sucraid prior to the transfer to meet the demand. This is my interpretation of what seemed to be implied by Mr. Cooper.
  4. FDA states they are awaiting information from QOL in order to approve Sucraid lots. What are they waiting for? As of today, all paperwork has been turned in and inspection of facility is complete. There are a few minor details (not specified by Derek) that will be address tomorrow (April 14, 2016)  in a meeting between QOL and FDA for final resolution.
    ANSWER: At the time of the phone conference, FDA had completed a full inspection of the new facility and QOL had completed and submitted all required paperwork.
  5. Does QOL anticipate a foreseeable end date to shortage?
    ANSWER: Though this could not be answered precisely, Mr. Cooper said it could take up to 2-3 months before Sucraid is available again, but he was hopeful it would be sooner.
  6. Can QOL Medical provide an estimated timeline for a resolution of the shortage in terms of weeks, months or longer? Patients would like to know if they should plan to be without Sucraid for a short, medium or long period of time. They are cognizant any specific timeline is unlikely as it will invariably change.
    See ANSWER TO #5.
  7. How can the most vulnerable patients be prioritized to receive any available, or first available, Sucraid? For the families who have quit using Sucraid to make it more available to more at risk patients, how will it be communicated to us that there is enough to begin using it again?
    There are some units left they are saving for these patients according to dire need, however they will not use this supply if they are able to begin manufacturing a new batch soon.
  8. Does QOL have any data about other medications that experienced a similar facility approval related shortage situation? If so, what was the timeframe for those similar cases to be resolved? When it is released, it will be available within a week of FDA approval. NA
  9. Can QOL confirm that all Sucraid that has been currently released is only done with full FDA approval?
    Information known prior to the conference:
    a) That there are NO unapproved lots in circulation.
    b) That Sucraid lots requiring an informed consent listed additional possible risks but were still approved as safe to be released by the FDA.
    c) That current Sucraid is safe to use and that all possible risks have been fully disclosed in writing to patients. That neither QOL nor the FDA has hidden any important information from them.
    d) FDA stated this clearly in the teleconference, but the point seems to have still been confused by other external statements on the call and noise distraction.
    Details related to this question were not addressed specifically enough for me to confirm or deny the details.
  10. Even though it was FDA approved as safe to use with informed consent, What were the specific contaminants that were identified or posed as possible risks?
    ANSWER: I asked Mr. Cooper to clarify this once the call was opened to questions. If I understood him correctly, it was the “manufacturing of sacrosidase” that no longer met FDA requirements. There was NOT any contamination of the ingredient.

It’s possible the FDA was concerned the food-grade facility could lead to a risk which is why they prompted the move to new pharmaceutical grade facilities, but this inference was not made by Mr. Cooper himself.

ADDITIONAL DETAILS SHARED DURING THE CALL

To clarify the frustration of one parent on why they were not informed of the possible shortage in advance, Mr. Cooper explained that QOL doesn’t have the ability to directly contact patients due to HIPPA.

Possible Solutions to Communicating with Parents and Patients in the future  Not Explored during the call: Communicating in general with pharmacies, doctors, or insurance companies OR placing a notice in the packaging of Sucraid when this process started, letting patients know that a shortage was possible.

In answer to another caller’s question, Mr. Cooper clarified that this transfer to new facilities would not impact the cost of Sucraid or change any current programs designed to assist families in need.

Mr. Cooper ended the call by stating that QOL would love to hear stories about how Sucraid has made a difference. Again, they are doing all they can to expedite this approval process as soon as possible, and they are deeply sorry for the issues this shortage has caused to families.

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Idaho Medicaid Denies Appeal to Cover Sucraid

Idaho Medicaid has officially denied our appeal to cover Sucraid for my daughter. Fortunately, back in January I began the process of working with Curascript to get 3 months of Sucraid for free. NORD will now be covering her medication until we can find another way to pay for it.

I also spoke with a representative from the Idaho Congress who will be letting me know if there is anything I can do from here on out to help bring awareness about the importance of Sucraid for those with CSID. My argument is that although it is difficult but possible to remove all sucrose from the diet, that type of diet does not provide an ample amount of carbohydrates to a growing child’s body or to an adult bordering on being underweight such as my daughter.

I still believe getting my book out there and using the power of social media are two very effective ways to bring about CSID awareness. If you have a story or struggle related to receiving Sucraid or being denied insurance coverage for Sucraid, please let me know. Every personal account we can document will help us to win this fight for our children!

The last shipment we received for Parker’s Sucraid in California listed the current cost of Sucraid at a whopping

$6116.93 for two bottles (a 28-day supply)!!

You can also contact the Partnership for Patient Assistance and search for your state for help.

I understand at this time those in Australia are not able to get Sucraid at all. If you can send me information documenting what you have tried to do up to this point to get Sucraid, I can gather every one’s stories and see if we cannot begin to pursue worldwide distribution.

In the meantime, there are enzymes you can purchase directly for low cost to help with digesting all carbohydrates. As always, there are no guarantees, and always begin with small servings to determine tolerance levels.

Enzymes my children and I have used to assist with mostly starches (but should work with natural sugars such as those found in fruit) include Nature’s Sunshine Food Enzymes and Kirkman Enzymes.

School Healthcare Plan Worksheets

A few months ago I posted a picture of the school health care plan my son’s nurse provided to manage his diet and Sucraid intake at school. I have finally created a fill-in worksheet for you to download and print for use at your child’s school.

Below you will see links to each of 4 worksheets.

The heading for Group A is LIGHT RED. The worksheets for Group A should be used for children not able to tolerate starch at this time.

The heading for Group C is TEAL. The worksheets for Group C should be used for children who are able to tolerate some starch at this time.

If you are able to store and have your child take Sucraid at school, choose the worksheet labeled WITH SUCRAID.

If you are unable to store or have your child use Sucraid at school, choose the worksheet labeled
NO SUCRAID.

School Healthcare Plan Group A WITH SUCRAID

School Healthcare Plan Group A NO SUCRAID

School Healthcare Plan Group C NO SUCRAID

School Healthcare Plan Group C WITH SUCRAID

For more information about Sucraid, dosing and its benefits for those with CSID, click HERE.

All of these worksheets will be included in the print version of my CSID book, A Place to Start once it is published.

If there is anything you would like me to change on any of these worksheets, please let me know right away. This includes any spelling or grammatical errors you may notice.

Thanks!

State by State Medicaid Programs Continue to Stop Covering Sucraid!

I consider my children extremely fortunate to have qualified for state-funded insurance over the past several years. Until recently, I took their coverage for granted, thus their ability to receive Sucraid. This also involved my naive assumption that all children in the United States could also receive Sucraid if they had state-funded Medicaid, or Medical/Healthy Families (California.)

With that, I would like to first apologize for not digging deeper into this issue. Next, I would like to express my desire to partner with Curascript (the pharmacy that distributes Sucraid), QOL Medical (Sucraid manufacturer), Medicaid and other state-funded insurance programs and NORD (National Organization of Rare Disorders) to create a process that allows all children with CSID to receive Sucraid for little or no cost.

Earlier today I received a phone call from Curascript informing me that as of January 1, 2012 Idaho Medicad was no longer covering Sucraid. My oldest daughter, Elora, is attending college in North Idaho and is highly dependant on Sucraid to ensure proper digestion of her very limited food choices on campus. Her current Sucraid bottle expired weeks ago, as she has been with our family for the holidays. Over a week ago I had arranged for her new Sucraid to arrive at her dorm today.

Since my desire is to partner with the above organizations, I want to avoid criticism. However, I know that I am not the only parent extremely frustrated at this whole process and the fact it leaves great gaps in the availability of Sucraid for our children.

1) It would have been an act of courtesy and compassion to have a minimum of two weeks notice from the Idaho Department of Health and Welfare informing me that they would no longer be covering Sucraid as of the beginning of this year.

2) This is not the first time that I receive a phone call from Curascript on the day of an already scheduled delivery to inform me that they could not deliver Sucraid. Again, when I place the refill order, any problems regarding shipping or insurance coverage should be addressed.

3) I believe the main problem here is the high cost of Sucraid. Both of my children receive two bottles of Sucraid per month at over $3000 each at my last assessment. That is $12,000 per month for medication! No wonder the insurance companies, state-funded or otherwise, are having an issue with continuing coverage. From my rough estimates based on personal contact with parents of children with CSID, the rate of diagnosis is tripling every few months. The cost of Sucraid has also tripled since my son’s diagnosis in 2005. Whatever happened to a bulk discount? If the demand for Sucraid is increasing at such a rate, wouldn’t the overall cost to the manufacturer be decreasing, instead of increasing? I understand the concept of supply and demand, but these prices are outrageous and directly contributing to reducing availability of Sucraid for our children.

4) I do not think it is a coincidence that the reduction in coverage for Sucraid coincides with the national health reform laws about to take place. My hunch is that the government is somehow trying to offset healthcare costs by dropping expensive drugs. Call me ignorant, but isn’t the whole point of “health care reform” to make sure those who need health coverage and medication the most, continue to receive it? Obviously there is something larger at hand here, and it is not in the best interest of our children and their future health.

THE GOOD NEWS, HOWEVER…
The phone call from Curascript led to transferring me to a representative for NORD’s Patient Assistance Program. I must still go through the process myself, but the next step is applying for assistance for my daughter in Idaho. The program pays for 3 refills of Sucraid while they work on finding alternative funding to pay for Sucraid until they can overturn the Medicaid non-coverage policy.

At this time, the assistant program is working with Wisconsin, North Carolina, Georgia and Texas to overturn their Medicaid non-coverage policies. The representative told me that Texas is very close to being overturned and once they find success, they are confidant they can apply the same process to overturning the other state policies.

This is only the first step in a process that will hopefully end in reducing the overall cost of Sucraid and allowing all insurance companies to cover it’s cost.

If you have any further details, or have already gone through this process, please comment to this post or send me a detailed email at writing4life@msn.com .

Abbreviated Sugar and Starch Content in Foods

Quick Reference for Sugar and Starch Content in Foods Commonly Used in My Kids Have CSID recipes and blog…

My son’s dietician initially gave him limits on total starch and sucrose. He worked his way up to 25 grams of sucrose per meal with Sucraid over a period of approximately one year. See Induction Diet link for more on introducing sucrose.

*Sucrose and Starch amounts per 100 grams.

FOOD DESCRIPTION
(in alphabetical order)
GROUP
SUCRAID NEEDED
SUCROSE*
STARCH*
Almonds, raw
C
X
3.9
2.5
Applejuice, 100% unsweetened
A, C
maybe
1.7
NT
Apples, raw unpeeled
A, C
X
3.3
1.9
Avocados, raw
A, C
0.1
Bananas, raw (doesn’t specify ripeness see Nutritional Differences in Ripe Bananas)
C
X
6.5
2.9
Beans, butter, cooked
A, C
0.4
0.3
Broccoli, raw
A, C
0.1
0
Cabbage, red
A, C
0.9
0
Cabbage, white
A, C
0
0
Cardamom, ground spice
unknown
0
NT
Carrots, raw
A, C
3.02
0.024
Cauliflower, raw
A, C
0.2
0.5
Celery, raw
A, C
0.5
0.1
Coconut, fresh
A, C
maybe
2.3
0.3
Cranberries, raw
A, C
0.5
Cucumber, raw
A, C
0
0
Currants, dried (very high fructose content)
C
1.8
Garlic, raw
C
0.57
13.4
Ginger, ground spice
unknown
0.2
NT
Ginger, raw
C
NT
3.1
Grapes, white raw
A,C
0
0
Hazelnuts. Raw
C
X
4.15
1.4
Kiwi
A,C
Leaks, raw
A, C
X
1.1
Lemon, juice
A, C
0.2
0
Lemon, raw
A, C
0.5
0
Lettuce, raw
A, C
mushrooms, raw
A, C
Nutmeg, ground spice
unknown
Olives, no sugar
C
1.8
Onion, raw
A, C
X
2.4
0.53
Orange, raw
A, C
X
4.1
0
Peanut Butter, unsweetened
C
X
4.29
4.3
Pears, raw
A, C
X
3.67
0
Peppers, green
A, C
Pineapple, raw
A, C
X
6.7
Pumpkin, raw
C
1.44
2.03
Raisins, dried
C
Raspberries, raw
A, C
maybe
1.4
0
Spinach, raw
A, C
0.2
Squash, buttercup
C
NT
6.35
Strawberries, raw
A, C
maybe
1.15
Tomatoes, sun dried
C
Tomatoes
A, C
Walnuts, raw
C
maybe
2.9
1.3
Zucchini (summer squash)
unknown
1.71
0
If your child appears to tolerate foods on this list apart from the group specified, please contact me. One main ingredient there is very little information regarding tolerance for is almonds. My research indicated almonds are easy on digestion and I have had a few reports from mothers with children in Group A who seem to tolerate almonds, almond flour etc. Please indicate if the almonds are raw, blanched, ground, etc. Thanks!

Holiday Swedish Cardamom* Mini Loaves (Gluten-Free)

I prefer to use stoneware when baking with almond flour. It bakes evenly and prevents over browning since almond flour must bake for longer periods at low temperatures. I use a Pampered Chef 4-in-one baking dish for this recipe. Each loaf is approximately 5 x 2 ¼ inches. Bake time will vary if using glass, silicone or aluminum bakeware.
These mini loaves make great holiday gifts or contribution to the holiday dessert table. Some of my favorite holiday memories come from baking cardamom bread with my mom and sisters. Since our traditional wheat flour recipe is now taboo for my kids, I came up with this grain-free version which goes great with a cup of decaf chai!
(This is a Group C, use with Sucraid recipe)

Yield: 4 mini-loaves

1 cup honey**

½ cup grapeseed oil

4 large eggs

1 tablespoon pure vanilla extract

4 tablespoons melted, unsalted butter

5 cups blanched, finely ground almond flour (www.nutsonline.com)

4 teaspoons Ener-G baking powder OR 2 teaspoons baking soda

1 teaspoon sea salt

4 teaspoons ground cardamom*

1 cup raisins, chopped into small bits (optional)

1.       Preheat oven to 350˚F. Grease loaf pans with grapeseed oil or butter.

2.       In a medium bowl, combine honey, grapeseed oil, eggs, vanilla and melted butter with a wire whisk and blend well.

3.       In a large bowl, combine almond flour, baking powder, sea salt and cardamom until thoroughly blended. Add raisins. Add wet mixture from medium bowl and mix well.

4.       Pour batter evenly into greased loaf pans and bake for 30 minutes or until tops begins to brown.

5.       Carefully remove pan and cover bread with foil. Return to oven and bake an additional 20 minutes or until inserted toothpick comes out clean.

6.       Cool bread about five minutes and remove from pan to cool completely on wire cooking racks. The cooler the bread is, the easier it will be to slice without crumbling.

7.       Serve with softened butter or cream cheese. 

*may contain starch
**children under 12 months should not eat honey

DAY1: Reduced Starch & Sugar, Regular Sucraid, Rash Update

Today marks the beginning of Parker’s revised (lower starch) diet plus 2ml of Sucraid with EVERY meal and snack for the next 2 months. He has an appointment with his new gastroenterologist at UCDavis on February 9th, and I want to have a consistent report of Parker’s diet, presentation of CSID symptoms(if any) and differences in his weight compared to his primary care physician appointment from November.

Aside from the rash (which is clearing up nicely after reducing starches, adding Sucraid to school meals, and adding a cup of dandelion root tea at bedtime) Parker has also had noticeable issues with BMs (traces on his underwear), and increased gas.

A brief overview to fill-in gaps in blog posts since 2009—

As previously posted, my son has experienced irritating red and scaly rashes around his mouth and on his cheeks since he was an infant. This is now recognized as one of many symptoms for CSID (see Symptoms for a complete list ). When Parker started kindergarten, he began to seem to tolerate small amounts of starch, beginning with sprouted grain bread.

IMPORTANT NOTE: At this point in Parker’s history, he had been consistently gaining 1 pound per month, and I had consulted his dietitian regarding the “risk” involved in attempting to add starches to his diet. It was extremely vital that he could “afford” to lose a few pounds if the added starches produced ill effects such as diarrhea. Please do not attempt to include foods aside from Group A with Sucraid as recommended until your child is symptom free AND gaining weight consistently, and that his or her diet is being monitored by their doctor and a dietitian. Parker was on Group A foods and Sucraid for 2 full years before I attempted to include grains or high-starch content foods.

Eventually, I added corn, potatoes, rice and an occasional flour-based food such as tortillas or hamburger buns. However, since I recognized most bread and grain products also contained added sugars, Parker began taking Sucraid (an enzyme designed specifically to assist in the digestion of sugars for those with CSID) more regularly.

I tend to avoid gluten-free foods as they are usually made with alternative flours that still contain high levels of starch. The occasional exception are single-grain cereals made with corn or rice and zero or few added sweeteners. We (myself and two children with CSID) also noticed a marked difference if we have gluten. As a result, our “grain” substitute of choice is almond flour. We also find that sprouted grain breads, even those containing wheat, do not aggravate. The theory on this is that once the grain sprouts, it realeses enzymes that in a sense “pre-digest” the starch.

Just as the baby plant finds these enzyme-activated simple molecules easier to digest, so too may some people. Proponents of sprouted grains claim that grains that have just begun sprouting – those that are straddling the line between a seed and a new plant, as shown here — offer all the goodness of whole grains, while being more readily digested…See Whole Grains Council for more on this topic.

By the time he started first grade, I was comfortable enough with his new starch-inclusive diet to allow him to eat school lunches. There were just a few “rules”– he would only choose ONE food containing starch, he was not allowed cookies or cakes (since Sucraid did not seem to be enough to prevent him having an upset stomach after eating these foods); no chocolate milk and if the menu only offered high starch content (such as a bean burrito, corn and a cinnamon roll)- he was to take a cold lunch to school. Outside of school and whenever I had access to the nutrition facts, I tried to make sure Parker’s total carbohydrate intake stayed under 25 grams per meal. This told me “in general” that he was not eating more than 25 grams of starch, though I realized carbohydrates according to the nutrition facts also included milk and fruit sugars.

In summary Parker was taking Sucraid with all processed foods and starches, most meals stayed around the 25 grams of carbs with the occasional exception of his favorite breakfast: Eggo waffles with peanut butter and syrup- which I estimated at closer to 50 grams carbs. This was his dad’s creation which in my opinion is no more nutritious than a jelly donut, but I allowed it so that Parker could eat alongside his brothers. Important to document nonetheless! Also, he wasn’t allowed additional starchy foods that day as he had “reached his limit” by my standards.

All this said, over the past two years, Parker HAS NOT had a single instance of developing a rash around his mouth until recently. The missing variable: Sucraid. For the first six weeks following our move to California, Parker ate most of the foods he had been eating without added Sucraid, including school lunches. Yes, this is my confession! Lack of resources did not  allow me to provide Parker his own food, and since he had been without major symptoms for so long, I made an exception until we could work out getting his Sucraid at school and I was stocked up on ingredients so that I could start baking foods from my CSID recipes once again.

However, when Parker started showing signs of irritation around his mouth, I realized I could not make exceptions any longer. I knew this rash was a sign his digestive system was getting pushed to its limits– and one thing I learned long ago– I needed to listen to this non-verbal indication that whatever Parker had been eating was taxing him. I also noted that he seemed less focused and tired, and had a few instances of wetting the bed. It had been so long since I felt the need to document Parker’s symptoms, I failed to recognize these earlier warning signs.

Obviously, I only have my own experience with my own children as a reference point, but this is my conclusion: Sucraid is a vital part of Parker’s diet regimen. Though it only breaks down sugars, my hunch is that it possibly alleviates digestive stress which also allows Parker to tolerate maximum starch intake for his levels of available enzymes. Or perhaps, keeping his symptoms at bay for a long enough period of time simply allows his body to process more nutrients/eliminate more toxins than it could when he was sick and everything was irritated and inflamed from undigested carbohydrates and the harmful bacteria it produced.

Stay tuned for additional “Journaling Parker’s Progress” entries as we take on the new frontier of including an adequate Sucraid dosage plus a reduction in high-starch and processed foods.

Sucraid Problems and Solutions

I have just experienced a major issue with getting the proper amount of Sucraid delivered and prescribed for Parker. I am very frustrated and annoyed at the lack of knowledge out there regarding CSID and Sucraid over 5 years after my son’s diagnosis.

At the beginning of November, we established a new doctor and insurance plan due to our move from Idaho to California. I was so grateful that my Parker’s new doctor knew about digestive enzyme deficiencies, I didn’t realize he still did not write out the Sucraid prescription for the correct dosage until today! I have been having issues with getting his Sucraid refill in time for Thanksgiving and after many confusing phone calls to Curascript, managed to get an expedited delivery at 9:30pm Wednesday night! When I discovered there was only 1 bottle (instead of the 2 my son now needs due to an increase in weight over the past 2 years)… I assumed Curascript would be mailing the second bottle ASAP.

That is not the case! I will take some responsibility, as I have tried to get 2 bottles delivered ever since Parker started school so that he could have one bottle at school and one bottle at home. Because I failed to research the correct dosage/weight, I have not been as emphatic in requesting the additional amount. I did not realize he actually NEEDED 2 bottles, and have only been giving him 1ml per meal when I have access to Sucraid.

The recommended dosing of Sucraid® is as follows. (Copied from http://www.sucraid.net/for-patients-f-a-q)

(15kg=33lbs… Parker is now 42 pounds, thus requires 2ml per meal and/or snack)

Table 2. Recommended dosing of Sucraid®

For those of you unfamiliar with Sucraid, please click the underlined link above. For those of you familiar, I would love to get your feedback here. What problems have you had trying to explain to your doctor the need for Sucraid and how much your child needs? Have you compromised the use of Sucraid due to the fact it only comes in 1 118ml bottle that must remain refrigerated? How have you handled school lunches or ensuring your child has Sucraid when away from home?

After carefully reading the dosage recommendations, I now know at 42 pounds, that Parker NEEDS 2ml per meal! And I thought I was fudging the truth in order to get 2 bottles. Now that I am certain, I am on a mission to makes sure my son as well as any other child needing Sucraid, will get the proper amount prescribed by his/her doctor as well as approved by the insurance. The above link not only clarifies why Sucraid is needed, but what amount is needed for your child. I am planning on printing this and bringing it to his doctor today so that it can be on record as well as faxed to the insurance company.

A second issue I have had in the past is trying to figure out why Sucraid must be bottled in 118ml amounts. In the past, having the dosage divided into two bottles would have alleviated a lot of stress, especially while traveling. Trying to keep Sucraid cold during a summer vacation can be very challenging in the car. I cannot imagine how difficult it may be for those of you traveling by airplane with all the restrictions on how much liquid can be carried on board.

Again, please submit feedback on this! Have any of you contacted the makers of Sucraid and found answers to these questions? Please let me know. I would like this blog to be another avenue where we can share our challenges and triumphs with all things related to CSID.

Thanks!