Allergist Visit

I couldn't bring myself to make an appointment with Sam's pediatrician, so I called his allergist Dr. Hunt instead and lucky for us they'd had a cancellation that very morning. I took him right in. I wanted to ask Dr. Hunt's advice about the various blood tests and which I should be saving for. There are so many, and they range from $89 to over $1,000. He said that I should hold off on the blood test and instead we should take advantage of Sam's "flare-up" to put him on a course of Orapred (which is more steroids, but internal instead of a topical cream). He said that would clear him right up and if I brought him back in seven days he'd take advantage of the clear skin and do a skin prick test then. I reminded him that we'd tried for four months last fall to get Sam clear enough for a skin test, we even used the oral steroids once, but then I remembered that I'd also had Sam on antihistamines at that time and the allergist had forgotten to tell me he needed to be off antihistamines for four days before being tested. So I'd brought him in, beautiful skin, ready for the test, only to be disappointed because I'd given him antihistamines that morning! This time, we are just doing the oral steroids and nothing else so we should be good to go. I am crossing my fingers.

I also related our experiences with walnuts and peanuts since Sam's last visit and the allergist agreed we should have an EpiPen Jr. on hand, just in case. The epipen is for children and adults who have anaphylactic symptoms to certain allergens. If Sam's reaction was that severe with just a tiny piece of walnut (it was not even a half of a nut that he ate), if he ever got hold of a food containing a substantial amount of tree nuts it could be life threatening. The pen has a plunger needle that you literally plunge into the thigh through the clothing if the child starts to have a reaction where he is clutching his throat and can not breathe. From epipen.com:

What are the symptoms of an allergic emergency?

Symptoms of an allergic emergency vary, but those involving the skin (hives, itching, skin redness) are most common. A majority of cases also involve swelling of the lips and tongue as well as the airways (tightness in the throat, shortness of breath). Fewer reactions involve the gastrointestinal system (nausea, stomach pain, vomiting, diarrhea), the cardiovascular system (fast heartbeat, chest pain, low blood pressure), or the central nervous system (headache, confusion).

How does epinephrine work?

The drug product in the EpiPen Auto-Injector is epinephrine. Epinephrine by injection is the treatment of choice for allergic emergencies (anaphylactic reactions) because it quickly begins working to reverse symptoms of an allergic emergency. It constricts blood vessels to increase blood pressure, relaxes smooth muscles in the lungs to reduce wheezing to improve breathing, stimulates the heart (increases heart rate), and works to reduce hives and swelling that may occur around the face and lips.

Elimination Diet: Day 2... already frustrated.

Well I started Sam on yet another elimination diet 2 days ago.  This is the first time I am only watching his diet and not mine, because I am no longer nursing him.  (As a side note, it was much easier on him than I thought it would be to quit nursing cold turkey.  He threw a good 3 hour tantrum the first night, and since then he hasn't even tried to nurse. In fact usually in the morning he comes in my room and pulls my shirt up and helps himself - sorry for the visual- but today he crawled in my bed and pointed to the stairs and said "FOOD!"  Haha. Obviously he gets it!)

My plan was to cut out all nuts, dairy, eggs, wheat, corn, soy, oats, and citrus fruits.  Oats are not usually a top allergen but last week I tried an oatmeal bath with Sam and it completely backfired. What you do is blend a cup of oats really fine, and blend it in with the bath water. It is called colloidal oatmeal and is supposed to have healing and itch-soothing properties. Moms online with eczema babies and kids raved about this treatment. I had such high hopes! Well, it wasn't 5 minutes after sticking him in that bath that he got SO itchy and could not stop scratching.  Sam is itchy a lot of the time, but I have never ever seen him scratch in a bath. Usually the water soothes him. He eats oatmeal a LOT, so I thought, maybe he is allergic to it.  Its obvious whatever food or foodS are causing his eczema is something he eats all the time. Unfortunately there are about 15 to 20 food he eats regularly so it is no easy task figuring out which ones are the trouble.

So the first two days went well and his face and eyes were looking great. I can always tell if his body is actively reacting to a food by his eyes. Only problem is they don't always flare up while eating the food, it can be within 2 hours it is still difficult to pinpoint which food caused it.  This morning when he woke up I thought his face was looking so good, and other parts of his body seemed to be clearing a bit.   Unfortunately, by the afternoon he was a mess again, eyes and face all red and blotchy.  I have been trying to eliminate the top 8 allergens and citrus which can aggravate eczema, but there are others that are common offenders I was hoping I would not have to include.  The big ones that seem to be tied to eczema are potatoes, strawberries, and tomatoes, all things Sam loves and all things he ate today.   Tomorrow those will go on the elimination list.

So what can he eat?   Peaches, pears, bananas, apple sauce, white rice, brown rice, beans, avacado, rice milk... veggies except for potatoes and tomatoes. Turkey, beef, chicken (Actually beef is a top allergen but I'm not eliminating meats unless there are no improvements, I just don't suspect them very strongly.) This is going to be a very boring diet for him.  I need to make some bean soups or something.

Oh by the way I am writing this in bed with Sam laying next to me. He is scratching his arms to death, and I am stressing out over his broken skin. It has been so horrible these past couple of weeks since we quit the hydrocortisone. The only meds I feel like I can safely give him is Benadryl. He takes it 4 times a day and I don't know if it takes the edge off but whatever it does is not much.  He gets horribly itchy at night so no matter the weather I dress him in long sleeves and long pants, all cotton, with two pairs of high socks pulled up over his pants. The socks used to keep him off his poor feet (which are the WORST on his entire body, I swear he's had a permanent rash on his feet since he was 6 months, its the one spot where it never goes away)  but now he's figured out how to rip off any number of sock layers and his little ankles and the tops of his feet are just ripped up bloody.  He is starting to do this with his hands and arms now.  My heart just aches. I have been praying all day for inspiration to know how to help him. I feel so helpless.

I will be calling his pediatrician tomorrow (who I really can't stand and don't trust) because I want him to see Sam at his worst and I think we'll need a prescription for antibiotics. When eczema kids rip their skin open like this, it is very dangerous because bacteria can get inside and cause scary problems.   The only thing is after the antibiotics (usually 10 days) I think it will be awhile again before he can be tested, this is the problem with blood testing, something always prevents it when you need it.   The antibiotics will also clear his skin beautifully, which you'd think would be a good thing, but it won't last longer than he is taking them and will just mess with my ability to measure the results of the elimination diet.

Sigh.

I am so sorry little guy. :(

Allergies & Eczema

Sam has had eczema all of his life but his skin became markedly worse around September of last year. Before that his eczema was difficult but manageable. Now, more often that not it is painful, inflamed, and out of control. He always has some kind of rash but it isn't always inflamed or noticeable to others. He also gets hives. The rashes vary in shape and color and intensity - sometimes it is light pink and barely there (others will say "Oh he looks so great!" but I know better) and other times it is angry red and very scary looking. He gets it the worst on his lower legs, lower arms,  and the tops of his feet, but quite often it covers him head to toe.

His pediatrician told me that this "eczema" is just dry skin, it is a skin condition and has nothing to do with diet or allergies. I am looking for a new pediatrician! I used to believe this and obediently continued refilling my prescriptions of topical steroids and slathering on various moisturizers to keep the rash at bay, but when your child has been on steroids and moisturizers for over a year with no improvements, you start to wonder about that method. Plus the changes I mentioned above - color, shape, intensity- were happening over a twenty-four hour period, and dry skin does not behave like that. Get real doc.

I noticed Sam would get red rings around his eyes and start to rub them a lot during or just following meal time. He would also get spotty around his neck and chest. By night time the rash would have covered his body would and remain for weeks. When I started opening my eyes to the clear association with food I suspected food allergies. Plus I read many forums online and testimonies from moms who were able to pinpoint food allergies their babies had, eliminate those, and see drastic improvements in their 'eczema'.

There have been two incidences when Sam ingested walnuts and I was able to watch him go from nearly clear to a red spotted dalmation in less than 20 minutes. One of these times I took him to the ER, but luckily his throat never closed up or anything. I have also been able to pinpoint a worsening rash following dairy consumption. But I suspect he has multiple food allergies because eliminating just nuts and dairy have not healed his skin. I have taken him to an allergist but he was never able to get the skin prick test because his back never cleared enough to do so. The allergist had me trying various methods to clear his skin from September to December, and we could never get there without huge amounts of meds. And the tests are not accurate with the meds in your system. There is a blood allergy test that is much more expensive, and for one reason or another we haven't been able to make that happen yet either. So I don't really have any definitive answers.

I am still working on it. We have tried various elimination diets. I am constantly experimenting with his diet. Sam is 20 months now, and I have nursed up until this point, so whenever I eliminated foods from his diet I had to eliminate them from mine too. But it is a huge challenge. I would be cooking one meal for me and Sam, and another for Adam, Georgia, and William. I am not very experienced in reading labels for allergies so while it was easy not to give Sam dairy, I never knew if I was somehow getting dairy protein into my milk supply from an overlooked milk-derived ingredient in a processed food I ate. I would eat a pancake or something thinking there's no dairy in there, then later realize it contained whey. It also contains egg and wheat, both things he might also be allergic too. It's just so stinking tricky.

I have decided we need to stop nursing and today was day #1. We are just going cold turkey. I am anxious to separate the stress of watching my own diet from the stress of watching his. Very soon I should have more control over what gets into his body. Maybe then we can make some progress in discovering all his allergies.

I've only photographed Sam's skin on a few occasions. I don't like to take pictures of him when he's all flared up. I prefer to take photos when his rash is softer and unnoticeable. As it is, his flare-ups usually occur at night and are most visible then. But taken at night with only dim lighting the camera still does not capture very accurately what his skin looks like. I had to increase the contrast on these photos to show the rash. So the color of these are a bit more dramatic than in reality, but not much. The emotions invoked by looking at these photos, at least for me, are the same as seeing this on my sweet boy in real life. I can't stand that I haven't been able to solve this for him yet. It is constantly on my mind.

These photos are from September 2011:

And, March 2012: