More Allergies and More Prayer

So, after listening to Jay screaming at the top of his lungs, and having to hold him down to prevent him from bolting from the room (and this was with the sedative that J had taken before leaving the house!), Nick learned that Jay is allergic to shellfish, trees, weeds, cats, and dogs. But, dust mites are by far his worst allergy.

The night before he went in for testing, I was reading about how most kids with eczema are allergic to dust. So now I'm praying that we can get the dust in this house under control so that we can get his allergies and eczema under control!

I spent hours cleaning and dusting the bedroom, and Nick went in and vacuumed thoroughly. The allergist said that we really have to take up the carpeting, put in floors, replace the blinds, and cover the mattresses and pillows with allergy covers. I'm just praying about all of that because I have no idea how we're going to come up with the funds to do it.

Meanwhile, I've been up since 3:30 this morning because GracieGirl now has eczema on her back and legs, and she was going crazy with the itching. I gave her medicine and then held her for an hour until she stopped whimpering and went back to sleep. I'd started cleaning out her room, because she is also allergic to dust. We need to get the rug out of her room, too, and get her mattresses and pillows covered.

Now I know what my mom went through with me when I was little because I'm allergic to dust. I don't know how she found the time to clean my room each day, but that's what I need to do with our bedrooms. The problem is that I can't vacuum or do a lot of the other cleaning, and Nick's already up to his eyeballs doing all of the other things I can't do! All I know is that five out of six of us are allergic to dust, and we need to find a way to keep on top of the cleaning.

So, I'm praying for flooring, allergy covers, and someone to come clean our house! :)


Oh, and they want Jay to start weekly allergy shots immediately. I'd better pray about that one, too!

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Allergy Testing and Prayers

I really thought I was doing the right thing.

J's anxiety has been through the roof recently, and I didn't want to add to the obsessing/worrying, so I didn't tell him that he was having allergy testing.

The look on his face when he got home (yes, I made Nick take him - I still haven't gotten over the last time he was tested, eight years ago, when he literally climbed up me in an attempt to escape through the window) told me that I was wrong.

All he said was, "You knew about this?"

I nodded. The look of betrayal on his face hurt my heart.

It went downhill from there. I soon realized that there was no point in trying to explain why I hadn't told him. All he could say, over and over again, was that he wasn't prepared. He likes to be prepared. He thought he was going in for a checkup...

From there, it went to talk of his birthmom, feelings of abandonment, sad accusations that we're not his real family...

After many hours of this, he asked me what I could do to stop his pain. I told him to pray and I told him that I would pray. He asked if I would ask my friends to pray for him. I assured him that I would.

A few minutes later, he told me that he had prayed and asked God if He would remove his pain. He promised that he would spread His Gospel if He did. He added that he knew that he'd spent most of his time in the house instead of out spreading the Gospel, and he wanted to change that.

With that, he rolled over on the couch and went to sleep. Eight hours later, he's still asleep on the couch! Definitely a first...

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J's Update

Still moving towards getting J to his Social Skills Camp...

I finally spoke with his autism doctor and we're getting a game plan together. She's going to increase one of his meds. I also told her that he started Singulair a month or two ago for his allergies. Here is a list of behavioral side effects from Singulair's website. J has experienced a good number of them. So, I called his allergist and he said to stop the Singulair immediately.

J doesn't know it, but he's scheduled for allergy testing on Monday. I hope we can figure out what's causing his symptoms so that we can practice avoidance and not have to rely on meds as much!

His doctor also wants to get his eczema under control, but we can't get in to see the dermatologist until September. She wants us to see our family doctor, which I think is somewhat pointless. J's former dermatologist already said that there's nothing more that he can do for him, so I'm not sure what a family doctor can do.

We took J to an ophthalmologist because none of the drops that the allergist prescribed were working. Let's just say that the exam didn't go well. As bad as I felt for J, it was almost amusing watching the doctor, who obviously had little experience dealing with kids on the spectrum, try to figure out what to do next. It seemed that he was stumped. A nurse came hurrying in after hearing the screams, but he didn't even know what to tell her to do! So, Nick and I jumped in and we finally got through the exam, which included rolling J's eyelids back, an unpleasant experience for anyone, but torturous for a kiddo with sensory issues.

J has Allergic Conjunctivitis and has to use a steroid eye drop in addition to his regular eye drops for the next couple of weeks. Thankfully, the new drops don't sting, because I'm just not up for any more battles, especially four times a day!

J's behavior specialist is working with him, too. She's contacted the bus company to see if he can take a test ride next week, as one of his big fears is riding the bus to and from camp. They're not returning her calls. Ugh.

Oh, and J went in to see if he would be approved to see the psychologist. They did a screening and then called me the following day, accusing me of "double dipping." What??? Yep, since he's getting Wraparound and seeing a behavior specialist, it was considered double dipping when we took him to another facility to see if he can see the psychologist there. They haughtily informed me that the screening will probably not be covered by his insurance.

What can I say? They're on to me. Yes, I was trying to double dip. I was thinking that I wasn't spending enough of my spare time making phone calls, filling out paperwork, and running kids to appointments. I just had to have more!

Unbelievable.

I realize that my attitude stinks. It's just been a long, behavior-filled week, compounded by too many headaches brought on by various medical policies. I told Nick that I'm going to pack up my washer and dryer (my essentials) and move everyone to the mountains of Idaho, where we can live the simple life and never deal with any more agencies, therapies, or doctors.

He said that I've had better ideas. :)

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E's Meds and Allergies

E had his first follow-up visit with the psychiatrist recently. She seemed as surprised as we are that the meds are working so well for him. I know that it's not common for the very first med we've tried to have such an effect. I also know that chances are that it won't always work so well. So, we appreciate the positive changes in him while they last.

Overall, E has calmed down a lot. For the first time ever, he plays alone, using his imagination. For the first time ever, he'll sit down and let us read stories to him. He plays house with his sister, and he sits through most of a video. He is more compliant, and generally nicer.

The meds aren't a cure-all, and I'm glad that I wasn't expecting that they would be. He's had very few rages, but he still routinely hits, destroys things, antagonizes people, and refuses to obey. He also seems to be even more obsessive than he used to be. Yesterday and today's obsession is that his ears are scratchy and he wants them massaged. He becomes more and more frantic as he talks about it, until he's hysterical. This started yesterday, continued through much of the night, and resumed as soon as he woke up this morning. It's exhausting, for all of us!

We're experimenting with different dosages, seeing if there's any change in his nighttime craziness. We also have a consult for another sleep study in a few weeks.

All of E's bloodwork came back normal, with the exception of his low white blood cell count, which is because of his Neutropenia.

E also had more allergy testing done. The good news is that his egg allergy has improved, so we're going to schedule an egg challenge to see if he can tolerate scrambled eggs. It's funny because they called yesterday with the results, right after E had been talking about his egg allergy. He told me that it was okay if he was still allergic to regular eggs, but he really, really hoped that he wouldn't be allergic to green eggs! We've been reading Dr. Suess recently, and he and GracieGirl keep begging for green eggs and ham!

The not so good news is that his peanut allergy actually worsened, and the nurse described his test results to cashews as "unbelievable."

So, we continue on our quest to keep him safe from those allergens. There haven't been any more incidents at camp, except when one of the parents sent a peanut butter sandwich to a camp field trip last week, even though the camp is now peanut-free.

There was also an incident at church on Sunday when he was given a snack. We'd had incidents before when they had a bowl of candy (with nuts) out in the classroom every Wednesday night. Every Wednesday, Nick would take the bowl and tell them that they couldn't have them out because there were children with nut allergies. Every Wednesday, they would tell Nick that the candy was for the adults, not the children. Every Wednesday, Nick would tell them that it didn't matter who they were for; any of the kids could reach them and the ones with allergies could potentially die if they ate them. Sigh. We'd never had a problem on Sundays, though. This past Sunday was simply a lack of communication. The thing with allergies is that all it takes is one little lack of communication.

For now, we continue to make people aware, while trying to keep E safe, resisting the urge to never let him out of the house!

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The Art of Making Doctors' Appointments

No matter how many times I go through this, I expect a different result. I expect that, when I need to make three appointments, I'll make three calls, talk to three different people, and put three appointments on my calendar!

It never, ever works out that way.

Ever.

Jay's been having a tough time. He's had a bad eczema flare and he's in pain. It keeps him awake at night, and the sleep deprivation makes it harder for him to handle things during the day. He's full of anxiety and just plain unhappy.

In three weeks, he's scheduled to start a Social Skills Day Camp for kids with Autism. He is in such turmoil about this! He doesn't want to ride the bus because buses are too crowded. He doesn't want to eat lunch there because he's worried that he'll gag. (He used to have reflux but outgrew it. Apparently, he's still anxious about it.) He doesn't like to be outside because of his allergies and because the heat bothers his eczema. Gnats bother his eczema. He won't swim because pool water bothers his eczema. And on it goes.

Yesterday, I thought that I'd see if he could talk to our psychologist, thinking that maybe he could figure out a way to alleviate some of Jay's anxiety.

Our home phone decided to break. We could get incoming calls but the phone didn't ring. We couldn't make outgoing calls. So, I used my cell phone. I could talk for maybe a minute and then it would disconnect. This happened over and over, which just didn't make for a smooth phone call! I finally learned that they now have walk-in evals, which start next week, and then he'll be scheduled with the psychologist, which means no appointment before camp starts.

My next call was to his dermatologist at Children's Hospital. The receptionist informed me that the doctor had moved to Ohio. I said, "Oh no, she can't do that!" The receptionist said, "Oh yes, she just did!"

Ugh. There isn't another dermatologist there, so we'll have to go to another branch to a very popular dermatologist who doesn't have any openings until September.

Great.

Jay's sensory issues make it tough for him to deal with the eczema treatments, so I called his autism doctor, again at Children's Hospital, who helps him deal with those treatments. She didn't have any appointments. We sometimes see a different doctor, so I asked about an appointment with her. She's no longer at our branch.

They told me that appointments for September opened up at 8:00 this morning and I'd better call right at 8:00 if I wanted to get an appointment.

Yes, I know that, all too well.

I called this morning and got the first available appointment...at the end of September.

So, camp should be interesting. I just keep praying for Jay because he really is struggling. Lots of issues with the holiday and his birth parents have been coming up, too, all wrapped up into one big meltdown...

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