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.