Tube Feeding

Glo got her feeding tube at 4.5 months after infantile spasms seizures caused her to lose her suck swallow. Gloria is 10 as of this update and a lot of what we were seeing when she was younger I think was tied to her underlying conditions related to CFC Syndrome. I think as difficult as it was in the notes below it was the right choice.

Tube Feeding Supplies Coverage

There is an urgent issue in the disability community that I have tried since 2019 to get traction on. Oregon Health Authority promised to hold Rules Advisory Committees on these issues, but they have not held the RACs as of January 2023. The goal is to reform Medicaid first and convince CMS to change the rules as many insurers just follow suit in their policy with CMS on lots of issues.

1. Enteral and IV nutrition policies that have consistently led to children and adults experiencing disabilities being left to slowly starve to stretch nutrition due to Oregon Medicaid policy forbidding having any reserves for enteral and TPN feeding. This policy of having to swear to having less than 10 day supply on hand before DME will even ship is a disaster and leading to starving children, adults and babies around the nation that rely on medically necessary formulas.

2. Snow storms, COVID, formula shortages, and now the debacle of the Enfit rollout have been disastrous for our community.

3. I spoke in 2019 at the Oregon Inclusive Emergency Planning meeting, in 2022 to the National Academies of Sciences lessons learned from COVID for children’s disability services on this issue.

4. The solution is simple, and that is to permit at least a one month supply to always be on hand. Deliver a 62 day supply on the first delivery and a 31 day supply every shipment after and it will resolve rush shipments, lost shipments, damaged shipments, and delayed shipment issues. Currently when you order you have to attest to having less than 10 days at the time of order for most insurers. Having a backup supply was agreed to at the 2019 meeting and was in the report from the Inclusive Emergency Planning workshop.

I continue to fight on this and work with my state health agency and Regional Medicaid Office to try to get this change. The ball is back in the state's court. As the Regional Medicaid Office has given initial support and said Oregon has deference on this issue of medically necessary formula back up supplies.

To Nissen or not Nissen:

The Nissen fundoplication is a difficult decision...here is my take on the choice as it played out for Glo. She was retching hundreds of times a day with the nasal tube, and constantly needing suction. This is a difficult and fateful decision...it doesn't always work. My daughter vomited past the Nisssen on day one. I think it makes her feel like something is stuck in her throat after talking to people that have had it as adults, which actually worsened the retching for a time. There is also a chance your child won't be able to burp which means you may end up like us having to vent her every hour every night or she wakes retching and in pain. Wish I had a rosey story for you, but I think you need to hear both sides. That said Glo is no longer failure to thrive and actually has put on some weight. As the Nissen loosened she has decreased Her vomiting of mucous and feeds to 1-7 a day. Her issues are profound and caused by a De novo genetic syndrome called CFC syndrome.