u/Jedi-Metal

I posted 2 weeks ago about my 15 year old daughter admitted to the hospital with Erythromelalgia. She does not have any underlying conditions so she suffered from primary Erthromelalgia. We tried aggressive treatment to include a lidocaine infusion which was unsuccessful while using anti anxiety medications and narcotics to control her pain. Her medical team has been increasing Lyrica and oxycarbinze dosages in the meantime. Boston Children's recommended to try Journavx (suzetrigine). The pharmacist at the Hospital denied it as it has not been FDA approved for pediatrics.

Her local dermatologist had some samples and we obtained some from him. Yesterday at 4:22 PM she took her first dose and was pain free within 40 minutes. What a relief that we would find something to remove her pain....and its NON-OPIOID. almost 24 hours now and still pain free just some tingling her in hands.

Battle not over....this medication is not approved for children and its very expensive. Her doctor has already reached out for more samples and has started the compassionate care route to hopefully get us as much supply as she will need.

What a nightmare last 2 weeks and we see some light at the end of the tunnel. I wish everyone suffering with this the best and hopefully you find some relief like my daughter.

My otherwise healthy and normal 15 year old daughter has been dealing with what we think is a severe Erthromelalgia attack. It started as a couple weeks ago as pain in both of her feet that we thought was plantar fiasicita. She could barley walk and after a trip to the doctor that was what they confirmed.

Over the next few weeks the foot pain was in and out but soon was manifesting in her wrists and hands. This progressively got worse to this past week/weekend when her feet and hands began progressively became more and more painful to the point she was screaming in pain. The last ER visit the ER doc reached out to a Derm MD that suggested a cream mixture for flares, amitryplyte, ketamine, and lidocane. She was prescribed hydocodine and ganbapentin 300 mg for the pain.

Three trips to the ER in the past week and she was just admitted to pediatric icu for the pain. She's been on fentynal, ketamine, and dilauded today to get the pain down. Never seen a tougher pwrson trying to push through the pain over the weekend.

Never had a worse feeling today... my daughter screaming in pain that she cant live and there is nothing me and my wife can do to help her.

We had a derm, Dr Robert Blankenship come to er and personally advocate for a treatment plan. We are starting her on lyrca and a sodium blocker while managing her pain with dilauded and ketamine until we can get this massive flare under control. They advised she may be in here for several days while the long term meds take effect and we WILL not be going home until we have a treatment plan.

I wish all of you suffering this torture my best and I hope you eventually find relief.

Hopeful Dad.

Success Story

My 15 yearold Daughter first time dealing with this.