If you’re new to our alopecia story, I first wrote about Jessie’s Alopecia Areata, what is is and what causes it. Later, I wrote an update of what we were trying (oral and topical steroids) and natural options we were looking into.
It’s been about a month since Jessie finished the oral steroids. Jessie does have some new hair growth! Within a few weeks (maybe 3? 4?) of when she started them we could see dark spots under the skin, new hair. Those have poked through the skin now and are still very short, but hair is definitely coming in. It’s spread out; it isn’t filling in the bald areas, but we’re just pretty happy to see some new hair at this point.
When she finished the steroids and we went for a recheck with Dr. R. she asked if Jessie might tolerate steroid shots in the scalp. I tried to convince Jessie that day, but she wasn’t having it. It just seemed too scary. Dr. R. said it is pretty intense. By her facial expression and description I didn’t feel it was a good fit for Jessie. She recommended we see a pediatric dermatologist to see if they knew of any treatments for children that she might not be familiar with. Her office made our appointment with a pediatric dermatologist at Children’s Hospital in Birmingham, AL.
I honestly didn’t feel very hopeful about there being anything new to try but didn’t want to not take this opportunity if there was any chance there was something more that could help. It isn’t every day that Jessie feels sad about her hair loss, but sometimes it really bothers her.
We have always enjoyed a day trip, even if it’s just for a doctor appointment. Birmingham is about a 4 hour drive for us. Although Jessie isn’t crazy about being in the car all day, she does love to go out to eat. We drove through McDonald’s for a chicken biscuit, which she loves. We have unlimited data, so she watched videos on her phone most of the way there.
When Dr. T. came in to talk with us after reviewing Jessie’s history (another younger/newer doctor working with her had come in and gotten information from us) the first option she recommended was trying steroid injections. While there is another option to try if Jessie wouldn’t go for it, the injections have the best success rate. She said they would use a numbing cream and although she did say it would hurt some, she described it in a way that we felt might be tolerable for Jessie.
She differed also from Dr. R in that Dr. R. didn’t seem very optimistic about the front areas of Jessie’s hair regrowing (I talked about this in the last update). Dr. T didn’t seem to feel that the lack of pinkness to the skin meant she wouldn’t get hair back in those areas. She didn’t express opinion either way, but didn’t feel the lack of pinkness/signs of current inflammation meant that those follicles wouldn’t respond to treatment.
I explained in terms Jessie could understand all that Dr. T had told us. Jessie had understood most of it as the doctor was talking; but it’s helpful when I retell it to her in my calm mama voice. She trusts me to always tell her the truth. I told that her that it would hurt a little, but the numbing cream would make it only hurt a little. We explained that if it hurt too badly, we would stop and she wouldn’t have to do it anymore. She felt hesitant and a little anxious but we convinced her to try it.
They applied a numbing cream, the script she later wrote for us called it “numbing butter”. It looked like a cross between butter and chewing gum. She applied it liberally and let it sit for about 30 minutes. Because we weren’t sure how Jessie would tolerate it they just numbed a small area, a circle about 2- 2 1/2 inches circumference. We talked to her constantly to help her not dwell on it while we were waiting.
When Dr. T came back we kept Jessie talking to help distract her. We tried to get her to watch a video, but she wasn’t having it. She likes to tell people about WWE though and her favorite wrestlers 🙂 Dr. T made injections under the skin fairly close together in that small area. We were too busy trying to distract Jessie while it was happening to count how many there were. There was a tiny spot of blood at each injection site right afterward and I counted at least 10 of those, it might be closer to 12.
Jessie was a little distressed but she wasn’t extremely upset. I was SO proud of her for being so brave. She doesn’t think she FELT brave, but she was brave. I really am just so proud of her. Although it was distressing to her, her lack of hair is upsetting to her too. If her hair grows I hope she will feel it was worth it and be willing to do more injections.
Dr. T called in a prescription for the numbing butter. Although they let it sit for 30 minutes, she said longer would be even better. Their office was closing soon after we left or they may have waited longer on this day. She said we could put the numbing cream on at home about an hour before her appointment and let Dr. R in our town do the injections. If we see hair growth from this first set, we hope Jessie can be convinced to do it again. Dr. T said we could do a larger area next time if Jessie will tolerate it and can do it in 4-6 weeks.
When we got back in our car we called Jessie’s older sister to tell how brave Jessie had been and Jordan was proud of her too. Jessie told Jordan she deserved a treat–a treat to go see her sister. It is so sweet to see how she adores her big sister and always wants to spend time with her.
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We ate supper at Moe’s Original BBQ in Vestavia before heading back home. The food was delicious. Jessie was thankful for the charging block that her brother had given her for her birthday cause her phone battery had died and we can’t be having that.
Later, we stopped for ice cream at Dairy Queen for dessert. You can begin to see why Jessie thinks a trip to the doctor out of town isn’t all bad.
Today, the day of this posting will also be a beezy (how Jessie says busy) day with Jessie having a friend over, lunch with friends, going to take school pictures for our homeschool yearbook, and a meeting with our Down syndrome group, FRIENDS. Reading all that makes my introvert self tired.
Next week, unless something else distracts me, we’ll continue our series on skills for independence with discussing household chores.
Hope you’re enjoying the last little bit of summer. At this point in the summer I’m usually soaking up the last pool days knowing it soon won’t be an option. Now, our pool is green and in desperate need of a new liner. Boo! So, I’m mostly continuing to purge all the junk in my house. Will share an update soon as I’ve made a LOT of progress! Slow and steady does still win.
Till next week friends,
PS In my last post where I referenced natural options…Jessie is taking a probiotic, one I think is better than the gummies we started with, that I hope will be good for her overall and immune health. We were doing some of the essential oils on her scalp in between treatments but it’s too soon to know if that has been helpful. Dr. R. and the young dr. (sorry to refer to him that way I didn’t catch his name) both were skeptical about those being of any help simply because there isn’t enough scientific evidence to say for certain. The young doctor I referenced above said the steroid lotion we were prescribed is the best topical anti-inflammatory so we are going back to using that for now.