first appointment with the rheumatologist

November 14, 2009 at 5:08 pm 3 comments

I am pleased with how the visit went at the doctor’s office (pediatric allergy, immunology clinic at UK). We were there for over 4 hours and I was physically and emotionally exhausted by the time we got home.

Jackson was so cooperative with everyone except the last doctor we saw. He let the nurses examine him and then a female doctor who works with the rheumatologist came and got a detailed history and Jackson cooperated with her and let her examine him from head to toe. Then that doctor came back in when the rheumatologist came in.

I don’t know if Jackson just didn’t like the doctor or if he was ready to go home but he was done letting people inspect him=) By the end of our visit, Jackson was crouched underneath my chair, facing the wall, with his pants pulled up, scratching his legs to death. Kind of cute in a way, but also very sad and pathetic. Poor little guy!

The doctor looked at him and went to get his camera and came back with 4 more people (students, other docs in the practice; I’m not sure) I guess he thought Jackson was an anomaly or he just wanted to document everything and use him as a teaching moment=) I also think he was getting pictures for insurance purposes.

The doctor would like to do skin treatment in the hospital for 3 days. Yes, for those of you who don’t see him regularly, my little guy looks terrible and he scratches himself more often than not. Wanting to admit him validates my concerns and I know that yes, he is really bad and that it isn’t just a little bit of eczema or rash! This outpatient treatment is something that needs to be pre-approved by insurance.

In the meantime, I am doing a process called wet-wrapping him at home. With only 2 treatments on his left arm and leg, Todd noticed a huge difference from his right side. I talked with the nurse and told her what a drastic improvement has been made and asked about doing it on his whole body at home and perhaps delaying the hospital admission until our next appointment to see if we can get his skin healed up at home and maybe avoid the hospital treatment altogether. The nurse agreed and thought that was a good course of action.

The doctor said he has severe atopic dermatitis or severe atopic eczema. This is not a new diagnosis. Every doctor he has ever seen has called it this. The doctor is leaning towards him having hyperimmunoglobin E syndrome (HIES or hyper IGE)  He also mentioned a few other auto immune disorders and has ordered several blood workups. We will not know for sure what’s going on until the results come back and maybe then, we still won’t know. You can read more at the link if you’re interested, but again this is just a guess and he may not have it.

This is the first doc who said he probably won’t outgrow the eczema. Everyone else has said, hopefully he will; most people do. But this doc said that because it started in the first month of life and because his rashes/redness are head to toe—and not just in patches, those are indicators that this is not going to go away.

I was dreading going to the lab for the blood draw. But Jackson did fabulous. He didn’t want to sit on my lap and was making a fuss but I pulled him up there and then he had quite the conversation with the lady. (with his 30 word vocabulary) He said ouch, but then he sat absolutely still and was fascinated by what the tech was doing to him. I’m glad because I was getting weak just thinking about the 7 vials of blood she was collecting.


Entry filed under: eczema, food allergies. Tags: , , .

wet wrapping saved my son’s skin; it’s a miracle grocery challenge wrap-up for November

3 Comments Add your own

  • 1. Carrie Wallis  |  November 16, 2009 at 1:38 pm


    So sorry to hear this has been going on with little Jackson. I will add him to our prayer list at home. For what it’s worth, Dr. Ben was one of our primary doctors while Meredith was in the PICU at UK. He made the call to give her the high dose steriods and the medications that probably helped save her life (even though he had the diagnosis wrong, he treated it correctly — the hand of God!). If you think about it, please tell him that Meredith is almost her normal self again. And we will covenent with you to pray for another miraculous healing for Jackson!

  • 2. Christina Bacca  |  December 2, 2009 at 5:27 pm


    I’ve been following your journey with Jackson on TLT group and came back to your blog. My daughter has eczema like you described Jackson having and we did the same thing with her. Our cream was a compounded mixture of steroid cream and moisturizer. Our doctor also had us add 1/4 cup of bleach to the bath once a week because she had impetigo several times. Anyway, I just wanted to encourage you that it could go away. My dd doesn’t have hyper IGE but now at age 11 she has no eczema. We’ll continue praying for you.—Christina

    • 3. guinever  |  January 26, 2010 at 11:00 am

      Thanks so much for the encouragement and tell me your story.


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