Another update on my 14 year old – the PCP met with us to discuss more testing. We will be meeting with a pediatric neurologist after she has more blood work completed. Some of the additional tests are looking at Vitamin B levels, hypothalamus function and a possible MRI. Neurologist said the peripheral nervous system can malfunction causing skin hypersensitivity among other things – they also are exploring sending her to mass general for a skin biopsy.
I’m incredibly thankful we have a pediatrician who is willing to explore every avenue to figure out what is going on. I will continue to post as we go through this journey in hopes if we can find answers, maybe it will help someone else. Here is a picture of her when she is feeling well and one of when she is having symptoms. The redness is often worse than this picture shows. These pics are of her skin mottling – not many hives but this mottling accompanies skin pain and itching. Anyone else get this?
LINDSEY SCHEER I just called mass general for myself and my 14 year old and they don’t accept our insurance. I am devastated. I heard they are great there and explore everything to find out what’s going on.
LORETTA MORSE LEIGHTON Oh no!!! Did you call your insurance company to doublecheck? When I first call my insurance company they said the place wasn’t in network however I went out on our insurance site which happens to be Aetna and found out the representative on the phone was wrong
LINDSEY SCHEER I didn’t yet. I’m heading to Boston next week for my 6 year old she has a rare tumor we have to go get surgery on every 6 months at mass eye and ear. It’s right next door to MGH. So I’m just going to go right in the Urticaria unit and talk to them directly. Hoping I can get a bit farther by being there in person
LORETTA MORSE LEIGHTON Thoughts and prayers to you and your family
LORETTA MORSE LEIGHTON Also you can check with your insurance company to see if they have out of network benefits. It is usually covered at a lesser rate but it covers a lot of it often
STEPHANIE GERMER Loretta Morse Leighton hi, how is your daughter now? I have had some hives but I have a lot of the mottling on my legs. Did you find any answers? Thanks!