LISA THOMPSON

⚠️ADVOCACY ALERT: DEADLINE EXTENDED TO 02/19⚠️ @TexasHHSC proposed rule changes require a "totally responsible adult" to be fully liable and present anytime a nurse is providing medical care in a home setting. TAKE ACTION NOW: speak4.app/lp/e0a1eb/ #protectTXfragilekids #txlege

#MedTwitter Anyone have any ideas what this might be? Endoscopy pics from stomach after a perforation. One year later stomach is almost non existent - stricture at GE junction and GOO at bottom. Pinhole opening at top and bottom.

Anyone know how to reach someone at #asburyrevival?

Doctors at TCH and Baylor are stumped. She is being referred to the Undiagnosed Disease Network. We are happy to share medical records and doctor contacts. Also happy to travel for care. @HopkinsGIHep @IBDCedarsSinai @UDNconnect @ClevelandClinic #GITwitter @MayoClinicGIHelp

Since that time she has had multiple issues and has developed a stricture at the GE junction as well as a pyloric stricture. Her stomach has scarred down on itself and is so small that the end of a G tube placed for decompression is taking up all of her stomach.

PLEASE RETWEET- We are desperately seeking help from any gastroenterologists, geneticists, and or rheumatologists. This is Emma, our daughter with CdLS who experienced a stomach perforation on 3/07 of this year most likely caused by gastric outlet obstruction.

Doctors at TCH and Baylor are stumped. She is being referred to the Undiagnosed Disease Network. Happy to share medical records and doctor contacts. #MedTwitter @UDNconnect @MLongMD @rarediseasesnet @HopkinsGIHep

Since that time she has had multiple issues and has developed a stricture at the GE junction as well as a pyloric stricture. Her stomach has scarred down on itself and is so small that the end of a G tube placed for decompression is taking up all of stomach.

PLEASE RETWEET- We are desperately seeking help from any gastroenterologists, geneticists, and or rheumatologists. This is Emma, our daughter with CdLS who experienced a stomach perforation on 3/07 of this year most likely caused by gastric outlet obstruction.

We are desperately seeking help from any gastroenterologists, geneticists, and or rheumatologists. This is Emma, our daughter with CdLS who experienced a stomach perforation on 3/07 of this year most likely caused by gastric outlet obstruction.

@MelanieMajerus Can you send me a message? Tried but couldn’t send you one.

@bradyrice5 @tmwinsett Yes. As of right now surgeon at Baylor does not feel it is safe to do surgery based on how her body responded after the perforation. Because they don’t know why they are afraid of another perforation and how she would heal.

@CDLSMOM Hi I saw your tweet referred by @tmwinsett this is pla dumb question, but have you seen a general surgeon, colorectal surgeon and/or Bariatric surgeon. These physicians are specialized in gastro, colon and overall alimentary health. I know a few, but they’re all in Arkansas

She is being referred to the Undiagnosed Disease Network. Please share this post to help us find someone who might help us find answers we would appreciate it.Happy to share medical records and doc contacts as well.

Since that time, she has had multiple issues and has developed a stricture at the GE junction as well. Her stomach has scarred down on itself and is so small that the end of a G tube being used for decompression is taking up all the room. Doctors at TCH and Baylor are stumped.

Years ago this girl was diagnosed with CdLS after I wrote a letter to the editor of the American Journal of Genetics pleading with him to look at her case. He had sympathy for a mother's love. Praying for other doctors now to feel that same love & help us get her healed.

@MLongMD Your insight as a doc and an editor of American Journal of Gastroenterology to help this sweet girl would be appreciated. Hospitalized with GOO at D1 & other concerns. Forgive me for being forward but the love for a child makes you desperate.