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

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.

My Dirty Little Secret

It's been a while since I've posted. Life has been nonstop. But then when isn't it?

Jacob's last trial was Udi's Gluten Free Bread. Udi's uses egg whites in their breads and come scope day I was a little nervous. We had already tried whole eggs with miserable results. But in the end, he passed with flying colors.

Last year around this time he had wanted to trial pumpkin in the hopes of having a pumpkin pie. Problem was that I didn't have enough ingredients in his diet to make anything remotely resembling a pumpkin pie. This year, however, things have changed. We are now trailing pumpkin. I have made pumpkin bread, pumpkin muffins, pumpkin pancakes (not a favorite) and pumpkin cookies. I have made pumpkin smoothies and pumpkin ice cream. And so far, I do think we are going to pass pumpkin.

Frosted Pumpkin Bar

After his last scope the doctor gave us the go ahead to stop one of his day feeds, 3:00pm. We are hoping by spring that he will no long need his tube and maybe just maybe we can remove the tube by September 2013! We have come a long way. While I celebrate his success, I know that there are other kids out there with EoE who haven't been nearly as successful. I wish I knew why Jacob is succeeding while others are not. Then I could wave my magic wand.

Lili has been feeling nauseous. I'm beginning to wonder if we need to do another gastric emptying study. Maybe her new hormones are slowing her stomach down even more than usual. Do we wait it out? Or put her through the hoops?

After a full trimester, she is finally settling into middle school. There was some raised voices (yes that would be me) and some tears (yes that would be her), but she finally found her groove. In January, her class will be going to Yosemite and so I will have to coordinate all her food but I know in the long run it will be a great experience for her.

So what's my dirty little secret?

I have failed my kids. I know logically I haven't. That the issues they have are not my fault. Not my intention. But I think it's the burden that we special needs mom's carry. Every time I get a new report, diagnosis or idea, I wonder why I can't have the normal kid. Then I feel resentful, "How did this happen?". Then I feel guilty. "Things could be worse right?" That annoys me because saying that doesn't make the situation magically go away. And then one of them does something that reminds me why I love them. But then another report comes in and it starts again.

Our lives are not normal. Our week is filled with appointments, fights, and questions. Our friends, we find out, are not our friends really. And our true friends are those we may not even ever meet but support and understand us.

After a year, or two or three, our life is now our normal. The frustrations, the exhaustion, the small victories, those are our normal. The chaos, it's normal. Our life is normal....sort of....

A Bittersweet Anniversary

On July 26th we "celebrated" an anniversary. A year ago Jacob was admitted to Stanford and the NG tube was placed. All foods were pulled and we started on a new chapter in his EoE journey. Although it was the best decision we have made so far regarding this disease, it was one of the hardest things I have had to do as a mom. Below is the journal of Jacob's symptoms that I kept during the time preceding the NG. How far we have come since then.

Date                   Time                  Abdominal Pain              Notes
12/3/10                                                                             Jacob's 1st Endoscopy
12/7/10                                                                             Diagnosis of EoE - Began Budesonide slurry
12/9/10                                                                             Skin prick testing = negative
12/15/10                                                                           Patch testing = negative
12/16/10           4:30 pm                 3
12/19/10         11:30 am                                                     Chest pain while running
12/20/10         12:29 pm              Pain                               Won't eat
12/22/10           1:59 pm              Pain                               Eating french fries
12/23/10           2:30 pm                10                               Headache
                         3:29 pm                10                               Headache, fever of 100
12/24/10       all day                    Pain                               Headache
12/25/10           12:29 pm              3
                           1:59 pm              8
                           4:00 pm              5
                           4:59 pm              2                                   banana & guava juice
                           6:29 pm              9                                   potato with chicken broth
                           7:30 pm              3
                           7:59 pm              10
12/26/12             8:15 am              5                                     Headache
                           1:00 pm              6                                     Headache
                           4:00 pm              5
                           4:59 pm              7
12/27/10             8:30 am              8
                           9:29 am              6                                     Banana
                          10:59 am             4
12/28/10              1:30 pm            5                                      Headache
12/30/10              6:00 pm            9
1/1/11                  9:00 am            6
1/2/11                  7:59 pm            6
1/10/11                                                                                   Additional labs came back negative, still
                                                                                               having belly pain - 2nd scope to be        
                                                                                               scheduled
1/11/11                                                                                    Started miralax
1/13/11                                                                                    Emailed doc about possible Chron's
                                                                                                -no call back, no call regarding 2nd scope
1/20/11                                      Hurting                                 No school
1/21/11                                      Hurting                                 No school
1/25/11                                                                                   2nd Scope
1/27/11                                                                                   Biopsies clear, protein in urine, reduced slurry
1/29/11                                       Hurting                                 Throat pain
                                                 12:00 am                               101 fever
1/30/11             all day                                                            fever
1/31/11                                                                                  severe stomach pain, fever all day
2/3/11                                              5                                    positive for strep
2/4/11                                                                                    still no meds for strep
2/7/11                                                                                    xray for constipation, shows moderate
                                                                                              constipation, started mag = BM
2/8/11                                                                                     2nd dose = BM
2/9/11                                                                                    miralax = BM
2/10/11                                                                                    No BM, stopped slurry
2/11/11                                                                                     No BM, unltrasound
2/14/11          6:00 pm                                                             BM!!!!
2/15/11          3:29 pm                                                              BM
2/16/11          5:30 pm                                                             BM
2/17/11          5:30 pm                                                            BM, voiced aggravation with head tick
2/18/11                                         Hurting                             No BM
2/19/11                                                                                  Eliminating eggs, no BM
2/20/11                                                                                   BM
2/21/11                                                                                  BM
2/22/11                                                                                   no BM
2/23/11                                                                                   no BM, stopped taking Strattera
2/24/11                                                                                   BM
2/25/11                                 hurting                                       didn't want to play
2/26/11                                                                                    no BM
2/27/11                                                                                   no BM
                     2:30 am                                                            throat burning
2/28/11                                                                                     restart prevacid, start Sena
                    3:29pm                                                                BM
3/4/11                                                                                     started Budesonide slurry
3/9/11                                     hurting                                     throat still hurting
3/10/11                                   hurting                                     throat no longer hurting
3/11/11       7:30 am                                                               bacon stuck in throat
3/15/11                                                                                  playing tickle monster = severe stomach pain
                                                                                             laid down = chest pain
3/16/11                                                                                    x-ray
3/21/11                               hurting
3/24/11                               hurting                                       wouldn't eat dinner
3/31/11                                                                                   Dr. Torrano (allergist) - eat until Cincy
4/4/11                                 hurting                                       SB chocolate milk and scone
                                          hurting                                         while drinking milk
4/13/11                                 hurting                                      dizzy & leg weakness
4/15/11                              hurting                                         fever - 99
                                         HURTING!!!                               eating mac n'cheese and milk
4/17/11      Evening           hurting
4/20/11      Evening           hurting
6/25/11                             hurting                                        within 5 minutes of eating strawberries
6/28/11                             hurting                                         leg pain
6/29/11                              hurting
7/5/11                               hurting                                         ear pain
7/6/11                               hurting
7/7/11                              10!!!                                             Stanford prescribed periactin
7/9/11                                                                                 no sleep, reaction to periactin
7/11/11                                                                                Stanford prescribed gabbapentin
7/12/11                           hurting                                          started gabbapentin, spoke with Cincy about 
                                                                                           going elemental
7/19/11                          hurting                                           hard to wake up
                                      1:00 pm                                        Spoke with Dr. K - trying to track down Dr. C
                                                                                          won't take the gabbapentin
7/15/11          7:30am    hurting/headache                           call from Cincy = I have to coordinate NG
                     4:30am   hurting/ear pain/hand hurting
7/17/11         5:30pm          hurting                                     veggie soup
7/20/11         5:30pm                                                           leg pain
7/21/11         4:00pm                                                         no beds available at Stanford
7/22/11        12:29pm          hurting                                    won't eat lunch
                    1:45pm                                                           able to eat
                                                                                            Stanford is requesting a bed for Monday
7/23/11        4:59 pm                                                          stung by a bee on the right foot, extreme pain,
                                                                                           complaining of pain in both legs
7/24/11       7:00 pm                                                          stomach pain and foot itching
7/25/11        7:59 am         hurting                                       won't eat breakfast
                   9:00 pm                                                            admitted to Stanford
7/26/11       1:59pm                                                             NG placed

Great Expectations

Jacob had yet another scope. This one to see if chicken and turkey are a pass. We also had his button changed as well. The biopsies came back showing 0 eosinophils in his esophagus. Meaning, chicken and turkey are a pass and that the Nexium is keeping his acid reflux under control. Jacob decided to trial eggs next. Things seemed to be going well for about 3 weeks on the egg trial, or so we thought. Two weeks in we started to notice that he was chewing up his food, storing it in his cheeks and then spitting it out. What we didn't piece together was his behavior becoming more and more volatile day to day.

We didn't put things together until our trip to Oregon. Every year, since high school, I have made a pilgrimage to Ashland, Oregon for the Shakespeare Festival. For years, this trip has been the highlight of my summer. The past 2 years we haven't made the trip due to finances and Jacob's health and so we decided to restart the tradition this summer.

I have always loved Ashland. We always spent time walking around the small town, meandering in and out of the cute little shops, eating, and of course seeing the incredible plays. This trip was different. Having 2 kids with food allergies and having to accommodate those needs put extra stress on the occasion. And then there was Jacob to contend with. Not realizing that he was failing eggs, his behavior was beastly. It took more patience than I had in my reserves to keep from typing him to the nearest tree and slapping duct tape across his mouth. Although I enjoyed the few moments of peace I was given, overall my Ashland experience was not what it used to be. And so I wonder if I will go back again.

The night before we headed home, I realized that Jacob was failing eggs. That his esophagus was inf lammed so he wasn't able to swallow. That he was in pain and so his beastly behavior was his way of telling us this. We stopped eggs and within a few days he was back again.

Then we came home to family drama that for once didn't involve my kids. But it has spilled over into our already chaotic lives. Our trip to Italy has been cancelled. Although I was looking forward to voyaging to Europe, I can't help but feel some relief. I was dreading having to pack up all of Jacob's medical supplies and then trying to feed him while abroad.

Jacob has decided to now trial apples. Mostly so he can drink something other than water. Time for more creative cooking!

National Eosinophilic Awareness Week

National Eosinophilic Awareness Week starts tomorrow. This is Jacob's story. Please share his journey and help spread awareness. We need a cure.

Another Ring Added to the Circus

So far Jacob's chicken/turkey trial is going well. Next week is the scope to verify. And although I may not make it through the end of 5th grade, Lili is doing well. So why rock the boat? I keep asking myself that. Seems I just can't float along. I have to stand up and jump around until the whole thing topples over again.

Jacob hates doing homework. I mean HATES it. The minute we hit the door the battle starts and it usually ends with him crying and us asking ourselves "and we had kids because...?" I know the kid is smart, scary smart. But I began to wonder if he might have some of the same processing issues that his sister. And so his resistance was not in fact a plan to drive me crazy but his display of frustration because he was having trouble. Frankly, I had hoped that it was a plot against me. I could deal with that. But after having the psycho-educational assessment done and given the results, I realized that I would indeed have to add a few more rings to our already busy circus.

As it turns out the kid is more than smart...he's a genius. A certified genius. "Overall his verbal and perceptual cognitive abilities are in the High Average to Superior ranges..." However with genius comes difficulty. And for Jacob this means he has "difficulty on tasks requiring attention, working memory, executive functioning, social perception, and fine motor control. He also exhibits some hyperactivity, impulsivity, and cognitive inflexibility."

Good news, some of this we have faced with Lili so we are familiar some of the territory. Bad news, bring in the clowns. We've already put him back in OT 2 days a week. Now he will work with a therapist who works with gifted and sick children and who will work us on how to deal with his frustrations and explosive behavior. He will be evaluated by a speech and language therapist on Friday to determine what interventions he needs in that area. And he is working with a tutor who specializes in kids with learning differences.

This summer will be spent putting the rings together. Hopefully, but the time 3rd grade starts, we will have things up and running. And maybe even a couple new foods...