Jacob & Lili

Jacob & Lili

Thursday, February 28, 2013

A Little Too Comfortable

It's taken me some time to write this update. We had had high hopes that Jacob would pass his dairy trial and that there would no long be a need for his feeding tube. We had gotten used to not having to administer feeds four times a day, every day. We had an almost normal life again. I was back in the gym, back in yoga, getting my life back. We had grown too comfortable with success.

When it came time for Jacob's endoscopy and biopsy for dairy, he was having no symptoms that we could identify. He was swallowing his foods, his stomach seemed okay and he wasn't complaining of pain. We decided to go down for a clinic visit with the allergist and GI two days before the scope. During this visit we told them how well things had been going and they were both very excited by Jacob's prospects. The GI told us that he would not pull his tube right away, just in case. Turns out, he was right. Then we talked to the allergist. After talking with her about Jacob's unusual reactions to dahl and grapes, she said that she is pretty confident that Jacob not only has EoE but also has FPIES (Food Protein-Induced Entercolitis Syndrome). You can learn more about FPIES at http://www.kidswithfoodallergies.org/resourcespre.php?id=99.  This makes sense. It explains why he will sometimes have immediate pain, clearly not an EoE reaction.

The day of the scope was filled with excitement. We went through the routine and left him in the OR. About 30 minutes later the GI came out with news. Jacob's esophagus was developing furrows. Initially, the furrows were not obvious, but as blood started to run down his esophagus from the biopsies, the blood followed the path of the furrows making them more visible. My heart dropped into my stomach. I wanted to scream. His feeding tube would remain indefinitely.

The biopsies results were just as bad, reflecting the furrowing that was occurring. We decided to let Jacob finish out the weekend with dairy. Sunday was deemed "Say goodbye to dairy day". He ate ice cream and yogurt and drank chocolate milk all day. His reaction, though, took me by surprise. I fully expected  a screaming little boy, hysterical and not to be calmed. But instead he remained calm. He was upset no doubt, but handled himself fairly well. I believe, he knew that dairy wasn't good for him. Somehow he knew. So we said our goodbyes and started back on the journey. 
FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).
- See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf
FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine). - See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf
FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine). - See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf

Monday, January 14, 2013

IEP - Individualized Exasperation Plan

Jacob had another scope in December. This time to see if his pumpkin trial was successful. Since the kids would be out of school for winter break we made into a family trip. His scope was clean, passing pumpkin with flying colors. Thank goodness! I have never wanted a trial to be over so badly. The problem with a pumpkin trial is everything is baked. Pumpkin cookies, pumpkin cupcakes, pumpkin bread, pumpkin pie, you get the idea. After 6 weeks of constant baking, I was done.

Since he's been food trialing successfully, his doctor has given us the go ahead to trial the top allergen, dairy. Dairy is the number one EoE trigger but Jacob insisted, and when he decides on something there is no changing his mind. I wasn't arguing to hard with me anyway for purely selfish reasons. To be able to whip up a box of gluten free mac 'n cheese without worry instead of conjuring up some creative meal is almost blissful. It's been a few weeks, and so far he seems to be doing well.

Now on to what has been one of the many aggravating experiences I have had as a mom , obtaining an IEP (Individualized Education Plan) for Jacob. At the beginning of the school year it became clear that Jacob needed some help in school. Writing, creative writing and critical thinking was proving to be a challenge for him. He couldn't keep up in class and was becoming more and more frustrated with himself. Since he attends a private school, services are not available. We decided to turn to the public school system for help.

In 1975, Congress enacted the Education for All Handicapped Children Act (Public Law 94-142). This act was passed to support states in protecting the rights of children with disabilities.The act was amended in 1997 and is now enacted as the Individuals with Disabilities Education Act (IDEA).

The first step to getting help for Jacob was to write a letter to the District asking for him to be tested. Once you have submitted this letter a timeline has been started that the District must abide by to stay compliant with IDEA. Within 15 days, the school must contact you to set up an appointment with the Student Study Team (SST meeting). At this meeting, concerns are discussed and it is determined if and what assessments should be done. The district has 60 days from the date the letter was submitted to perform the assessments. Once all this is done and IEP (Individualized Education Plan) meeting can be held.

A child can also qualify for help under a "504 plan". 504 refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. This section specifies that no one with a disability can be excluded from participating in federally funded programs or activities including schooling. A disability under this section is defined a "physical or mental impairment which substantially limits one or more major life activities". This can include illness, injuries, chronic conditions allergies and learning problems. A 504 will spell out the modifications and accommodations that the child needs to have an opportunity perform at the same level as their peers. Where a 504 stops, an IEP will continue and will outline those modifications and accommodations in more detail and add to them if needed.

In Jacob's case, due to his EoE, ADHD, and Tourette's, he automatically qualifies for a 504 plan. Whether he would qualify for an IEP requires the assessments from the district. After a few days of testing, interviews with his teacher and observations in the classroom, the SST team declared that yes, indeed Jacob qualifies for an IEP. So onto the dreaded IEP meeting.

There are 13 categories that a child can qualify under for an IEP.

  • Autism
  • Deaf-Blindness
  • Developmental Delay (ages 3-9)
  • Emotional Disability
  • Hearing Impairment
  • Intellectual Disability
  • Multiple Disabilities
  • Orthopedic Impairment
  • Other Health Impairment
  • Specific Learning Disability
  • Speech or Language Impairment
  • Traumatic Brain Injury
  • Visual Impairment
The team decided that Jacob should qualify under Other Health Impairment (OHI) and then under Speech or Language. The team was insisting that Jacob's struggle in school was due mostly to the EoE. What didn't help was Jacob's IQ. Unfortunately, Jacob's IQ is extraordinarily high making it easy for the team to claim that he is capable, that any struggle he is having is due to his illness since surely his IQ shows that he is smart. What they didn't seem to understand is that regardless of how "smart" Jacob is, he lacks the skills to help him with critical thinking, comprehension and writing. However, they did agree that he does need help with his speech and language skills. Skills that affect critical thinking, comprehension and writing. We talked in circles for hours. At the end of the initial IEP meeting, we had finally made the team understand that Jacob should qualify for an IEP under Autism and not OHI. Qualifying him under the autism category, we hoped, might give him more access to the help he needs.

The 2nd IEP meeting was not any better. Although they changed Jacob's qualifying category to autism, they were still insisting that his struggles are health related. They insisted that the modifications and accommodations that we wanted were things that a teacher would already do in the classroom and didn't see the need to outline it in the IEP. What they failed to recognize is that those modifications and accommodations, regardless of how stellar the teacher or school may be, needs to be acknowledged formally in writing. An IEP would follow Jacob wherever he goes, including into college. So for him to get the help he needs consistently, no matter where he is, it needs to be stated in the IEP.

In the end, it became clear that Jacob was not going to benefit from a 504/IEP in the public school setting. Being intelligent and diagnosed with a chronic illness, despite having a learning diffiiculty, has seemed to have worked to his disadvantage. We have decided to keep him in his private school. His teacher has done amazing things with him to help him succeed and it seems to be working. She has modified his classwork and homework. We have hired a private tutor who works with him 3 days a week. He is in private speech and language and occupational  therapy, paid in part by our insurance but is mostly an out of pocket expense. We had hoped that by going through the public system, some of these expenses would be taken care of by the district, leaving us with only his medical costs.

My advice to parents who are considering a 504 or IEP for their child:

1. Become educated in the laws governing this process.

2. Know your child. What are their strengths and weaknesses. How do they learn best. 

3. If possible, hire an advocate.

4. Don't back down. Although the intention is help every child with a disability, the funds and personnel and stretched. If a district sees an opportunity where they can potentially avoid providing a service, they will. This is where knowing the laws and your child can help you fight back.








The Maupin's

The Maupin's