Tuesday, July 26, 2011

In Office Food Challenge - EGG

I'm obnoxiously excited to say that Luke PASSED the egg challenge!

We got started around 9am, and it wasn't the best of starts.

Quarter teaspoon of scrambled egg to start, and Luke spit it out right away. We were finally able to get it in his mouth, and he swallowed most of it. But not before getting it all over his hands and around his mouth. A few minutes later he had red splotches on his face (not hives, just red marks). I was very worried. The doctor felt it was a contact reaction, and we repeated the dose. This time he didn't spit out as much, but there were a couple red spots (again, not hives) that appeared then disappeared quickly. The third dose, they gave us a paper towel with soap and water to wipe off his face. He didn't spit any out from then on, but we also used the paper towel to clean his hands and face, and the splotches never appeared.

The next 4 hours went by without any issues. Luke didn't care for the eggs (I wouldn't have either - prepared without any seasoning or milk, and more cold than warm by that point). But he was a trooper and ate what we gave him, and didn't have any other reaction at all.

His doctor felt that the red splotches were just a matter of his super sensitive skin acting up. He's having a lot of eczema and dry skin issues now, and was already a little rashy on his belly from being in the pool on Sunday. If he had any other sign of a reaction they would have stopped the test, and declared it a fail. But all vitals (they took his blood pressure following every dose) were good, and no hives, vomiting, swelling, coughing, trouble breathing, etc.

He has to stay away from eggs for the next 2 days to be sure there isn't a delayed reaction. But otherwise, we have a green light for egg! We'll be doing the peanut challenge in mid-August.

Wednesday, July 20, 2011


My husband and I have made the decision to home school Cody this year for kindergarten. I had been planning to do Tot School with Luke this fall as a supplement to the two day a week preschool program that he will be enrolled in. Because of that I have spent a lot of time on Carissa's website (which is awesome, unbelievable amount of information provided there!) and various other homeschooling websites.

I first started thinking about homeschooling Cody when I became frustrated in finding a school for him to attend kindergarten. I have a few issues with our public school, one of which is that it is full day kindergarten. I do not agree with a full day program for five year olds, and especially mine in particular. I just can't picture Cody spending 7 hours in school right now. He is very active, and his preschool teacher warned me in the spring that his kindergarten teacher may view him as a "pain" and to give his new teacher her number so that she could fill her in on what's best for Cody classroom wise.

We started looking at private schools in our area. I found only one near us that offers half day kindergarten. We toured the school, and I was shocked at how small the classroom was. My memories of kindergarten are of different stations set up, being able to go from a home center to an art center. The class was full of two tables for the kids to sit at, storage for the teacher's supplies, and a teacher's desk. Adding Cody and I in there with the children, plus teacher and teacher's aid, and the class was overcrowded. And that was just with 12 students! I had a hard time picturing Cody doing well in that setting, even for just four hours a day. I was also disappointed that although the school is part of a church, religion is not included in the curriculum. Christmas is not celebrated. The Pledge of Allegiance is not said. While I wasn't looking for a full Christian based education, I was hoping to find one where it was included (similar to the preschool he went to last year).
All of the other private schools in our area are full day kindergarten.

After that I resigned myself to sending him to our local public school, although the full day program still bothered me. But the longer I thought about it, and the more I found out about our school (i.e. it is a "hard to staff" school), the more uncomfortable I was with it. Other issues dealing with academics added to my feelings.

It was then that I stumbled across Five in a Row, a literature based curriculum for grades K-3. It covers literature, language arts, geography, history, science and math. All you have to add in is more math and phonics.

I read and read and read everything that I could find. Could I really do this? I have a college education, but don't have a college degree. Could I teach him math, my weakest subject? How will I keep him socialized? How will I teach him while a very loud two year old is with us? I found that all of these are typical questions, and I had no trouble finding the answers. Each answer made me feel more confident that I could in fact do this. Books from the library have been incredibly helpful. Blogs even more helpful. I will soon be compiling a list of the resources that helped me.

I have my Notice of Intent ready to be mailed off to our school board. I have purchased a curriculum for kindergarten. I'm working on learning what Cody knows, and needs to know, before we officially start kindergarten. I'm learning that his preschool failed to teach him things that they should have, which has been a very disappointing discovery.

My biggest concern is that I won't be getting the one on one time with Luke that I had been looking forward to while Cody was in school. But I'm committed to making sure that each boy receives one on one time with me. It is also my hope that being around us while I'm teaching Cody will help Luke develop more language and begin learning more.

Child Find Evaluation

Or should I say "evaluation". Last week Child Find, which is the school age version of Early Intervention, came out to evaluate Luke to determine if he's eligible for services with their program once he turns three in the fall. I was expecting the evaluation to be similar to the one he received by EI last fall. When they came out for theirs, there was a team of three people. His service coordinator and two different therapists. Once it was determined he was eligible through that meeting, we went to their facility for further evaluation, again with three people, to determine what services he would receive.

Well, I was totally wrong. One person came. She sat in our living room, very minimal interaction with Luke. Brought out a few toys for him to play with. Remarked on how smart he was a couple of times. And within 30 minutes, was done. During her "evaluation", a couple things were brought up that didn't make me very happy...

1. An apraxia diagnosis wouldn't get him "more or less" assistance from Child Find.

2. He will more than likely get a resource teacher within his preschool instead of a speech therapist.

Ok, why in the world would a neurological disorder NOT get a child more services? A speech therapist familiar with it? And I would certainly hope that it wouldn't get him LESS assistance.

And why would someone with a severe speech delay like Luke just get a resource teacher? Also, when we were talking about his preschool, I mentioned that someone (who happens to be his current speech therapist) said that a certain resource teacher at that particular school is wonderful. This seemed to irritate the woman, and she said there is more than one resource teacher, and that the one I mentioned has a full caseload and wouldn't be assigned to Luke.

I discussed all of this with his current ST (who works for Early Intervention and is familiar with Child Find). She was rather disgusted for a few reasons. The first being the lack of a full evaluation. The second being the woman that came out to "evaluate" him is a resource teacher herself, she isn't qualified to make a speech assessment (something that wasn't mentioned before or during the "evaluation"). The third being that there isn't going to be a more thorough second evaluation. According to the woman, there will be a meeting to determine if he's eligible for services. Then we'll jump right to the IEP meeting, which is what sets the services that he will receive from the county. And finally, that it has already been mentioned that he will only receive a resource teacher. Luke needs, and deserves, more than that.

According to the ST, there is a serious lack of consistency within our county's Child Find. One child with similar speech issues received a full, three person team, evaluation. Luke gets "evaluated" by someone that isn't even a trained speech therapist.

The ST thinks that I should take whatever resources the county offers, and look into private speech therapy (which we already have). On one hand, I want to withdraw him from Child Find. I'm not a huge fan of allowing the county to be involved in our personal lives anyway. But on the other hand, by law the county is required to help Luke and I want to hold them to that.

And finally, Luke is also in Early Intervention for Occupational Therapy for his thumb.  It's not a huge part of his involvement with EI, as they only gave him an hour once every other month, and the OT that was assigned to has been very flaky about coming out (we've seen her twice since February) , but it's still an issue.  The resource teacher that came out never mentioned it.  I had to mention it to her, and it still wasn't discussed.  It wasn't until hours later that she called and said oops, I forgot to get information about his thumb!  As a famous crazy actor would say, Winning!

Apraxia - PROMPT Diagnosis

As mentioned, I recently took Luke to a PROMPT therapist in our area. She also happens to be a PROMPT instructor. We received the written evaluation in the mail a few days ago, and it was a little hard to read at times. There is a lot in there about his jaw usage. Basically, he is unable to control his jaw to produce most sounds. He also doesn't consistently use his lips during speech. Which is why "bye" comes out as "da".

Luke presents with significant motor speech control difficulties with secondary speech/language delay resulting in very limited verbal communication skills.

While his language system appears to be intact and cognitive skills appear strong, expressive language skills are severely delayed, related directly to his lack of speech motor control.

Therefore, it is strongly recommended that Luke participate in speech therapy sessions for at least one hour per week with a PROMPT trained speech language pathologist.

And finally...

Luke has parents who are fully invested in his development.

The paragraphs (and there was a lot more than I shared) about what is causing his speech delay made me cry. Hasn't he been through enough?

It makes me angry that we drove all the way to Charlottesville, and spent a lot of money, to see a developmental pediatrician that couldn't bother to spend more than 10 minutes with him. His biggest observation was that Luke's cognitive skills were fine, and that there were no signs of autism. Well DUH. I KNEW that. That knowledge doesn't fix the problem that he does have though!

The reason the wait list for the majority of developmental pediatricians is so long is that so few of them take the time to really evaluate a child. A child with possible neurological problems doesn't need a 10 minute evaluation. They need a thorough one.

Apraxia - Insurance and Diagnosis

My feeling at the moment is that I need to do something to help Luke NOW.

Many people have said to me, so and so didn't talk until they were {insert age here}. Einstein was a late talker. His big brother is talking for him. He'll talk when he's ready. I know that they're trying to make me feel better, but I'm at the point where I don't want to hear it. I'm his mom, I want to fix it. I would go bankrupt and sell every single possession of ours if all the money we could possibly pay would make things right for him. Because my mama's instinct tells me that something isn't right, that we will need to do something to help him.

Insert my desire to find private speech therapy for him. Kids with apraxia don't respond to traditional speech therapy. That's because apraxia isn't a developmental delay. From Medterms;

A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands. Children with apraxia can be helped significantly with intensive speech therapy.

And this of course means that the typical Early Intervention speech therapy will not help him to the extent that he needs.

It also means that the people that insist on saying to him "t-t-t-truck" can s-s-s-stop. Seriously, please stop. I'm not sure you'd want to teach any kid with a speech delay to say "t-t-t-truck" instead of truck anyway, I just don't get it.

A few weeks ago we met with a wonderful PROMPT therapist/instructor who evaluated Luke. She felt that he would benefit from that type of therapy, and wanted us to come once a week.

Enter insurance issues. We are going to have a new plan the first of August, and reading through the policy requires a lot of patience. Essentially it says that a child without a diagnosis, of a disorder such as apraxia, is not eligible for speech therapy benefits. In order for insurance to cover Luke's speech therapy, we need a diagnosis beyond developmental delay. We've already been to one developmental pediatrician, who after 10 minutes (most of which was spent talking to me) said "possible apraxia". I'm not an insurance expert, but I'm going to bet that "possible" won't float the insurance company's boat enough to help us out.

So I contacted the PROMPT therapist, and she recommended a developmental pediatrician in our general area. First available appointment? Early December (awesome). Appointment length? Two hours (awesome again, but this time not a sarcastic awesome). Cost? $570 (thud! - the sound of me hitting the floor). Even better? He doesn't take insurance (sarcastic awesome again). I made the appointment anyway, and we'll just see what happens. My mantra is, whatever it takes.

Until then, the PROMPT therapist has agreed to see Luke once a week for 45 minutes starting in September, knowing that it may or may not continue, depending on how much we can afford and what insurance decides to do with us. If we get the diagnosis, our insurance coverage for speech therapy will be amazing. Much love to the wonderful people at UPS for providing awesome health insurance benefits. Going from our over $500 a month with a $5000 deductible plan that didn't cover much to the plan we'll have with UPS is like willing the lotto.

It's going to be a journey, but it's worth it.

Tuesday, July 12, 2011

Blood Test Results and Food Challenge

We received some exciting news yesterday. The results are back from the blood test that we did for peanuts, tree nuts and egg, and they were pretty amazing!

Egg is down to 0.72, and peanuts were down to less than 0.35, which is considered NEGATIVE!

Luke's numbers were always relatively low, always in the moderate level range (which runs from 0.71-3.50).

In March 2010, following Luke's anaphylactic reaction to peanut butter, his number for peanut was 2.76.

In October 2010, Luke was tested for Egg White, Sesame Seed, Crab and Shrimp.

Crab and Shrimp were both <0.35 Sesame was 0.82 (and he went on to pass an IOFC for sesame a month later)
Egg White was 1.55 - at the time the allergist wanted to do an IOFC for baked egg, but a skin prick test showed a large wheel so the doctor decided to hold off.

I was (and still am) in shock. I'm being cautiously optimistic. On July 26th we will be taking Luke to the allergist's office for an in office food challenge (IOFC) for egg. Assuming all goes well that day, we'll then schedule the IOFC for peanut.

It's amazing to think that we could have gone from a horrible reaction like the peanut reaction to having possibly outgrown it in less than 18 months.

Obviously we won't know for sure until an IOFC is done, as any reaction trumps blood test results. Blood test results don't necessarily predict the severity of an allergy. Some kids like Luke can have low numbers, but have a near fatal reaction. Others can have super high numbers (the results can come back higher than 100), and never react. Because of this I'm trying to not get too excited. But I obviously have hope that my prayers have been answered, and that Luke won't have to deal with allergies for his entire life. The thoughts of not worrying about him being out of my sight, him being able to enjoy birthday parties and trips to an ice cream parlor, among all of the other things every kid should be able to enjoy, are hard to resist right now.