Setting up special accommodations for my daughter’s education

As I have mentioned numerous times on my blog, Lexie has a variety of medical issues. The only ones affecting her daily life right now are her eczema and allergies.

At six, her eczema has really gotten under control. Her skin is looking better, and we haven’t been doing anything different. She puts Vaseline on before baths, and that is about it. It still mainly affects her legs with her ankles being the worst.

As for her allergies, they still cause her to scratch some, but we just deal with it and dutifully give her antihistamines daily. Actually all summer, I gave her no medications, and she did fine. It wasn’t until middle August that something made her start itching again. It is always worst August and September, for some reason. (For those of you who don’t know Lexie’s history, she was diagnosed at age 2 with being allergic to a long list of things, so there is little chance we will pinpoint what causes the flare up during these months.)

I am not sure what triggered the school to flag Lexie as someone who needs extra attention. But last year, I received a Section 504 notice. This was in reference to Section 504 of the Rehabilitation Act of 1973. Under Section 504, schools must provide individuals with disabilities accommodations to help them receive an education equal to that of the other students.

I had no clue that her allergies would qualify her for that, but it does. I guess they consider allergies – especially a possible life-threatening one (Lexie received an epi pen 18 months ago) to be a physical issue that they needed to make a plan for even though I don’t think they limit her life activities in a way that garners special attention.

For whatever reason, last year we had a meeting with the counselor, principal, her teacher, and the nurse to discuss what the school needed to do to accommodate Lexie. I told them of her medical history, and that she had been to preschool without any problems. There really wasn’t much that needed to be done besides watch for allergic reactions and try to curb her desire to scratch.

Earlier this month, I had our annual review on her 504 plan. Now this came three days after meeting with Lexie’s teacher to discuss her involvement in RAP – a reading program that Jase did last year. It is designed to help those students who need extra help with reading.

On Lexie’s reading test in September, she was assessed at a reading level of D. This level is an end of kindergarten/beginning of first-grade level. I would think this is an appropriate level but guess not. Her teacher thinks she would benefit from the extra reading help. And as I did with Jase, I gave my approval. How could I not want them to read better?

So now her enrollment in RAP is part of her 504 accommodations even though it has no correlation to her physical “disability.” They are also offering to tutor her during school hours if she needs it. But these are all things that would have been offered even if she didn’t have allergies. Now it is just written down in the records- in case someone wanted to complain that she wasn’t being treated fairly.

Unknown allergies are hard on everyone

As I have mentioned numerous times on this blog, my daughter Lexie has allergies to many, many things. They have done blood tests to determine some of those items, but a lot of our discovery is just by trying something.

Sometime last year, we looked down at Lexie’s legs as she sat at the dining room table. There were little red spots on her legs. We were unsure what they were but thought maybe they were bug bites she had scratched. You see scratching and Lexie go hand in hand. She has eczema and scratches a lot. Many of her allergies don’t cause nasal congestion or hives.  They cause her to scratch.

CIMG1960Anyway, back to the story. The red spots went away, and we didn’t think about it again. Those same red spots didn’t reoccur until this June. When Lexie came back from a backyard Bbile camp at a neighbor’s house her legs were covered in red spots again. We thought it might be because they were outside (she is allergic to grass) or possibly something in their house. This time the red spots didn’t go away as fast. In fact, almost two weeks later, they were still looking bad, so we made an appointment with the allergist.

The allergist took one look at them and decided we need to use an oral steroid to clear them up. She also prescribed an antibiotic. It took a good 6-7 days before the spots cleared up.

All seemed good until a Friday morning in July. I recall that on Thursday night Lexie’s eczema on her legs was flaring, and I told my husband that we would need to watch it. Friday morning we were bowling. At the alley, I looked at her legs. They were covered in red spots. This time it wasn’t just her legs but also her bottom too. By Saturday, she had them on her arms, back and face.

We tried treating them with the prescription hydrocortisone medicine the dermatologist had prescribed for her eczema and used antihistamines prescribed by the allergist. Lexie wasn’t really uncomfortable but her legs especially looked horrible, so we decided to take her to the doctor on Monday.

CIMG1959At our pediatrician’s office, you can get same-day  appointments, but you rarely see your doctor. Many of the other doctors know Lexie, but we ended up with a doctor we had not seen before. By the time we had made the appointment, I had already spent time sitting down and trying to recreate where we had been the few days before each instance. It was then I found the connection – the bowling alley. We had gone there the morning of Backyard Bible Camp. I first noticed the spots this time at the bowling alley. Even the spots we saw last year might be from our trip to the bowling alley because we had gone around then.

I don’t know if it is the disinfectant on the shoes, what they clean the alley with, floor treatment or what, but I feel certain that it is something at the bowling alley causing these outbreaks. The doctor agreed that it was probably allergies. When I said I had taken her to the allergist last time it happened he asked if they had diagnosed what she was allergic to. Obviously, he doesn’t know Lexie.  When he heard about her allergies, he asked if she ate anything that day at the bowling alley. She had pretzels from home. Of course, she tested allergic to wheat, so he thinks that it could have been that she had TOO many pretzels. Yeah. Right. She eats pretzels almost every day. Why hadn’t she broken out in the past 532 days of pretzel eating? He talked about body thresholds and allergies which I already know just through my own experiences with her. She can eat a little of some items, but if she eats too much, then she does itch. But this was the only food she had had that morning. And since the last incident happened at the bowling alley (without pretzels) I am sure it is something there.

He prescribed oral steroids and another ointment to try on the spots. After six days, the spots faded. He didn’t prescribe an antibiotic, and I wish he had. Whenever she scratches a lot, infections generally occur, and she did develop one on her leg.

So now we have resolved that we just won’t go bowling – or at least not this summer. The doctor had suggested some precautions – wearing long pants, taking steroids before we go, wiping down anything she might touch with Clorox wipes and bringing a blanket for her to sit on – before we go bowling again, but I don’t think I want to take the risk.

The hardest thing is everyone seems to think that finding out what caused an allergic reaction should be easy. But it isn’t. The allergist knows this. Tons of articles online reiterate this point. But some doctors, friends and family all seem to think that it should be easy to discover. You come in contact with so many different substances in the day, how do you narrow down what caused the reaction, especially when the reaction can happen minutes or even hours later? All of her food allergies usually happen within 30 minutes but none so far have happened instantly.

Amblyopia and eczema update

As I have mentioned before on this blog, my daughter Lexie suffers from eczema (exacerbated by her allergies) and has amblopia. Since she just turned five and it has been about five months since I wrote about them, I figured it was about time for an update.

Amblyopia

Lexie was diagnosed with amblyopia in June of last year. We started patching her “lazy” eye at the end of August. At the time, her vision in her lazy eye was 20/60. We started with four hours a day of wearing the patch and then after two months the doctor dropped her down to two hours a day.

Getting Lexie to wear the patch has never been a problem, and we have been diligent about her wearing it though on a rare occasion we have skipped a day (due to illness or just plain forgetting) and we have sometimes left the patch on for longer periods (usually because we aren’t watching the time).

The ophthalmologist has been seeing her every two months to monitor her progress. Even I can see that she is doing better on the eye exams. At her appointment earlier this month, he finally said we are almost there. After 6 months of patching we are at 20/30. (The goal of course is 20/20.) If all continues to go well, we may be done with patches and glasses. Lexie will be thrilled. She doesn’t mind the patch (and even asks for it), but she hates to wear her glasses. I think some of that comes from the fact that no one in her preschool class or any of her friends wear them.

Eczema

Lexie was diagnosed with eczema at three months old. It has been a continuous battle to find a way to make her comfortable. We relieved a lot of her itching through NAET, but of course, she still has eczema flare ups. In October (during a particularly nasty flare up), we took her to see a new dermatologist who ended up prescribing some treatments that her previous doctor had already tried.

She set up a new routine of applying Derma-smooth oil (Fluocinolone acetoninde .01%)  to Lexie’s wet skin. We followed up with 2% Mupirocian Ointment (antibacterial cream) on any open areas and prescription hydrocortisone cream (2.5%) on the flare ups. And since all lotions bother Lexie, we put petroleum jelly on top to lock in the moisture. Since we were already wrapping her feet to stop her from scratching at night and it was working, the doctor said to keep it up.

At a check up three weeks later, they prescribed an oral antibiotic to clear up any infection on her feet. As soon as we gave her that and continued with the above treatment, she cleared right up. I know doctors don’t like prescribing antibiotics without cause but every time her feet are that scratched up I can pretty much guarantee you that she has a staph infection. And I know from personal experience that the infection increases the itchy feeling.  It is a vicious cycle – scratching causes the infection which leads to more scratching.

So from the end of November through the end of December, Lexie’s skin looked good. And then she got the flu. Any time that she is sick, her skin always gets worse. Back came the medicines. Throughout February, her feet and legs ranged from okay to border-line when we would need to begin wrapping them again. Lexie is adamant that we don’t wrap them. Of course, she is not a fan of treating her skin at all. She vividly recalls all the lotions and creams that weren’t supposed to sting or hurt but did. Also every time you put lotion or medication on her legs, it causes her to scratch. It is a Catch-22 – if you don’t treat her dry skin, she scratches. But the mere application of lotions or creams causes her to scratch too. I don’t think she is necessarily allergic to them but the sensation of something on her legs bothers her.

Surprisingly, her feet are still doing fine after both her birthday (lots of sugar) and Spring Break (going to places we don’t usually go which usually means extra scratching). Anyway, we will continue to control her eczema and patch her eye daily until it improves enough for the glasses to be removed.

Trying NAET to relieve allergies

As I have discussed for the past three weeks, my daughter has severe eczema, and we discovered that a majority of her scratching was because she was allergic to just about everything. Neither the dermatologist nor allergist was that helpful in reducing her discomfort. I got the feeling that since she was under three they just hoped that she would grow out of these problems. But it is heartbreaking to see her so miserable that I decided to try something totally different.

At the recommendation of my in-laws, I took her to a NAET specialist. NAET (pronounced “Nate”) stands for Nambudripad’s Allergy Elimination Technique. This is a technique that alleviates allergies using a blend of energy balancing, testing and treatment procedures from acupuncture/acupressure, chiropractic and kinesiology.

I know it sounds like there is no way it should help especially after you see how it is done. But before going, I did research it on the internet. About 90% of people who tried it said their allergies symptoms did go away. My in-laws had also claimed it worked. Nothing conventional seemed to be helping so what did we have to lose by trying it?

So in March 2011, a week before she turned 3, we signed up for ten treatments performed by a local chiropractor. They test and treat one allergen at a time and due to the severity of some allergies, it can take multiple treatments before relief is seen.

Basically, with each treatment, they would “test’ to see if she had a reaction to an allergen. If she did, they would use a device to tap on her back while holding the vial containing some of the allergen. We would hold the vial for 15 minutes before being retested. After that you were to avoid that allergen for the next 25 hours.

I know. I know. It sounds like it shouldn’t help. However, three weeks after we started we saw a few minor improvements. She was still scratching but not as much. A few weeks later, she was sleeping better at night.

The true test came when we treated her for dairy. As I said in my last post, whenever she ate yogurt within 20 minutes she would start scratching. Well, after being treated for dairy, we tried yogurt. No scratching.

Lexie December 2010 – 3 months before we started NAET

Needless to say, with each week we saw less scratching and the appearance of her skin improved.  We ended up adding more treatments and after six months, she was still scratching some (especially her feet). But I would say her skin was easily 90% better than it was before. Look at the photos of her three months before treatment and then three months after we started treatment. The change is clear.

Lexie June 2011 – 3 months after we started NAET

And the best thing, we were able to bring the cats back. They returned after nine months at my parents’ house. Now with them in the house, her nose is no longer runny, and they don’t seem to cause her to itch.

We recently had another blood test to test for allergies. Even here you can see the result. Her numbers are decreasing through the NAET specialist said it could take up to two years to clear her system.  The numbers given below are her IgE antibody levels. The higher the number, the more antibodies in your system, thus the higher number indicates a more severe allergy.

Item tested        First test Oct 2010            Second test June 2012

Peanut                   16.6 (Class 5)                   7.24 (Class 4)

Wheat                      1.6 (Class 3)                   .68 (Class 3)

Strawberry         4.14 (Class 4)                     .56 (Class 3)

Baker’s Yeast      6.19 (Class  5)        .08 (Class 0 = no allergy)

Of course, the main thing is that she doesn’t show any allergic reaction to any of these items. With this second allergy test, we also tested for a few things that we didn’t test her for the first time. She tested allergic to garlic, onions and pinto beans – all things hard to avoid here in Texas. So we had her treated for those items by the NAET specialist.

Now I would like to tell you that this cured her of all her allergies and her eczema. However, it didn’t. After our initial six months, we took a seven-month break as we developed a list of other things we noted made her scratch (and we had the 2nd allergy test). We then proceeded to test and clear those allergies. But we had a time limit; we could only get so much done before our NAET specialist relocated out of state.

If you look at her before we started, and you look at her today, I can say without a doubt that I think the NAET treatments have helped her.  And because I could see the results after the treatment for different allergens, I believe the improvements are not simply due to the passage of time or her outgrowing them. Either way, she is a lot less miserable and that is what matters most.

Allergic to Everything: Part Two – Eliminating Foods

My son was always a picky eater, so I was thrilled when my daughter liked fruit. I just never expected to find out that she was allergic to all the fruit and food that she loved. We saw an allergist to discover if any food or environmental allergens were causing some of the intense flare-ups in her eczema/atopic dermatitis.  I covered her allergy to pets last week.

She was tested for twenty seven common foods such as milk, egg, wheat, rice, chicken, and numerous fruits and vegetables. She came back allergic to every one of them. There was no way to eliminate everything. What would she eat? The allergist said to eliminate anything over a level 3 allergen so that included peanuts, carrots, lamb (don’t know how this was on the list as she had never eaten it), green beans, grapes, peaches, strawberries and yeast.

His recommendation then was to simplify her diet and whatever we fed her needed to be what she ate every day. So even though she was allergic to oranges if that is what we wanted to feed her, she needed to have it every day. This is kind of the principle behind allergy shots. They give you some of what you are allergic to in the hopes of your body getting use to the allergen.

Lexie’s feet in Dec. 2010.

We tried this for several months but by January even with all the pets gone and the dietary changes, she was still experiencing a lot of scratching. Her skin looked horrible. We decided it was time to start eliminating other foods from her diet one at a time. Since eczema is often linked to milk that was one of the first things to go. She didn’t like milk to drink, but she did love yogurt and ate it daily. I went through the pantry and removed anything that had milk as an ingredient. All butter, ice cream, and yogurt were off her diet. Sadly, I couldn’t see that this stopped her from scratching. Then one day as a test, I gave her a yogurt and within 20 minutes of eating it, she was scratching like crazy. The next day the same thing happened so we knew milk was definitely one of the things causing her itching.

Next, with milk still gone from her diet, I decided to eliminate wheat. I decided if wheat was going, I might as well go all the way and remove gluten. Anyone on a gluten-free diet can tell you that gluten-free products are more expensive. And I am sorry to report that most of them do not taste as good as the products we were replacing. But removing gluten didn’t help. Adding it back into her diet didn’t provide the same results that milk did, so we assumed wheat and gluten were okay.

For several weeks, we tried eliminating and reintroducing numerous foods that she tested allergic to. Some you could see a definite reaction while others there was almost no change. But even with all the things we eliminated, she still was scratching and bleeding and just miserable. So we decided to try something totally different to see if we could relieve her symptoms. Next week, I will discuss what we tried and how it helped us reintroduce both milk into her diet and the cats back into our house.

Allergic to Everything: Part One – Getting Rid of the Pets

Lexie was two and a half when we finally had her tested for allergies. We had been seeing the dermatologist for a year before he agreed that her eczema might be related to allergies. The allergist ordered a blood test to determine her allergies. I was eager to find out what she might be allergic to especially if it helped relieve her itching. There was no way I was prepared for the results; she was allergic to everything.

They tested thirty-seven items – ten environmental things such as dust, pet dander, grass and twenty-seven common food items. She scored a Level 2 classification or higher on all of them which indicated an allergy. And one of the highest allergies was to cats (Level 6) and dogs (Level 5). The first words out of the allergist’s mouth was get rid of the pets.

We had three cats and a dog at the time, and they were part of the family. One of the cats had been with us longer than Lexie. None of us wanted to see them go so we decided to try everything we could to keep them. We made her room a “safe” room. We cleaned it and kept the door closed and the cats out. And since dust (Level 6) was another high allergen, we bought dust mite protective stuff for her beds and installed an air filter in her room as well as the living room. We tried putting anti-dander solution on the pets and cleaning more often. We even replaced the carpet in our living room and on the stairs and put in laminate flooring to reduce her exposure to dust and pet dander.

We received her allergy test results in October.

Lexie in December 2010.

By December, Lexie was miserable. It was clear that the animals were still causing her problems. While my parents were willing to take the cats for a while to see if that helped, we had no one who would take in our black lab that had just turned one. Seven days before Christmas, my parents took the cats. I cried like crazy the day they left. But Lexie’s reaction to their absence was immediately noticeable. Every winter, Lexie’s nose always seemed to be running like she had one long continuous cold. The instant the cats were gone, her nose stopped running. She still itched around the dog who we were keeping in the kitchen, so we found her a new home. She left us the day after Christmas.

The house was extremely empty without our pets, but Lexie was doing a little better but not great. Clearly the pets were not the only problem. It was time to start eliminating food from her diet to see if we could uncover which foods were causing her the most problems. I will address eliminating food next week and the following week I will tell you how we were able to bring the cats back nine months later.

Dealing with childhood eczema

Anyone who has had eczema or a child with eczema knows how horrible it is. Eczema is a chronic disease that causes itchy, inflamed skin. There is no cure for eczema. And sometimes no matter how many lotions, ointments or creams you try, the itch cannot be resolved. An estimated 30 million Americans live with this disease.

My daughter first showed signs of eczema when she was three months old. Within months, she was scratching all the time. The pediatrician diagnosed her with atopic dermatitis (the most severe level of eczema) and gave us a steroid cream to help relieve some of the itching.

Because my son had a mild case of eczema as a baby, we were already use to using fragrance-free and dye-free soaps, detergents and lotions. But Lexie’s eczema was more severe than Jase’s. While he outgrew it by the time he was two, Lexie just seemed to get worse. She was constantly scratching until her skin bled. The itching prevented her from sleeping well, which of course meant we didn’t sleep well. Most mornings her sheets were stained with blood.

Back of Lexie’s legs at age 2.

When she was 18 months old, we were referred to a dermatologist. But here it was just more of the same. He would prescribe a cream, and we would try it, but it wouldn’t help. In fact, often whatever cream or lotion we used, she seemed to itch more.  She would cry every time we treated her as if the medication stung her raw skin.

I turned to the internet to look for relief, checking out hundreds of pages of eczema and trying countless different lotions and treatments that others said had helped them or their child. Nothing seemed to help.

To make matters worse, because of the open sores from her scratching, she developed an abscess under her arm, which had to be drained (not a fun experience at all). This would be the first of ten abscesses that she would have that year. Luckily, we became good about catching them early and cleared them up with antibiotics instead of the dreaded draining by the doctor. But none of us were immune to them. Because her body was covered with numerous cuts, she constantly had high levels of staph on her skin (which is common for people with eczema), and we all ended up developing at least one abscess.

Now, a few friends and quite a few strangers who remarked on her skin had suggested a milk allergy as being part of the problem. My mom also suggested a grass allergy since after being outside, she would just sit down and scratch her feet. So I mentioned it to the dermatologist, but he dismissed allergies as being the trigger.

After we had been seeing him for a year with no relief and after a really bad flare up, the dermatologist finally recommended we see an allergist. The allergist sent her for a blood test. The results were staggering. They tested her for 37 common things, and she was allergic to every one of them.

I will write more about Lexie’s allergies next week. But I just want to say that for anyone who is diagnosed with atopic dermatitis, please don’t wait as long as we did to see an allergist. Even though avoiding whatever you are allergic to won’t “cure” the atopic dermatitis, it can certainly reduce flare-ups and in our case, a whole bunch of scratching.

For more information on eczema, I highly recommend the National Eczema Association. EczemaNet is another good resource.