Remembering Joey Bergsma

I don’t usually post more than once in a day, but something had been irking all day and I couldn’t figure it out. I felt like I was forgetting something, and then I remembered! On December 22, 2000 little Joey Bergsma lost his battle with Retinoblastoma. I’ve been in contact with Pam Bergsma who is Joey’s grandmother, after finding a white large spot in Simmi’s eye. She spent time talking with me about Simmi and also explaining about Joey’s cancer and she really impressed upon me the importance of every child getting an eye exam with an ophthalmoscope.

In honor of Joey’s memory, I would love for everyone reading this to do two things for him after reading this entry…first, pop by Joey’s website www.LoveJoey.com and read about his life and what his grandmother is doing to raise awareness, and second, check photos of your children if they are under the age of four to five years old. Pam mentioned to me that not ever photo will have a white pupil in it and that sometimes the optic nerve can be captured on film, but as you can tell in Joey’s photo, it is the Retinoblastoma tumor that is reflected by the flash of the camera.

I’d like to share the following email she sent to me. I was concerned about the white spots that captured in Simmi’s eyes and attached the photos for her to view…this is her response:

Hello Angela,

Thank you for contacting me.  You are doing what should be done…your beautiful little Simmi needs a thorough eye exam.

The answer to your question is No…the white spot can be sporadic, it can be in all photos and it can be in no photos.

We have a 60 percent chance of photographing an eye disease in a child.   Almost all of Joey’s photos showed both eyes reflecting red. I took hundreds of pictures of my grandson, but only a handful had the white reflection of the tumor.  Oddly, those pictures were all taken at the beginning stages of the disease and would have saved his eye and sight; his life never would have been jeopardized.

Sadly, Joey had the worst eye disease a child can have if detected in the late stages.  Retinoblastoma shines bright on the back of the eye so we photograph it quite often.  However, most of the photos are of more common eye diseases such as refractive disorders, etc.

Many of the photos end up being nothing at all…the optic nerve will reflect the same as an eye disease.   The only way we can be sure Simmi’s eyes are healthy is an eye exam.  We will pray there is nothing to worry about.

Fact…the most common disease in children is eye disease.  One in four school age kids in the US is visually impaired.

The chances of Simmi having Retinoblastoma are rare…about one in 12,000 in the US.  The chance of her having an eye disorder with or without an odd photo is pretty good.

Note: the 4th most common clue for us to be aware of is… No Clues at all.  The child’s eyes will appear perfectly normal, no photos, no irregular eye movement, etc. yet they will be loosing their sight and in some cases they will have the very worst eye disease and their life will be in jeopardy.  How do we detect and get these kids to the eye doctor in time…a direct ophthalmoscope in a dark room at every exam and and a simple enhanced exam with dilation for infants.

Please go to the YouTube link at the bottom of my signature below.  The link to Joey’s folder will be on the right side of the page…click on  savingsightandlives. Please watch ”Joey’s message” which is an introduction to the website, NBC The Joey Bergsma Story, and the CBS coverage.  I use both when conducting my seminars.   If you have time, watch them all…each one offers something different.

I have attached an awareness article and poster with a few of  “Joey’s kids”.  Also a picture of little Aaron who lives in New Mexico.  He was diagnosed with bilateral Retinoblastoma…his grandmother saved his life 4 years ago because of “Joey’s story” on the Montel William’s show.  He is visually impaired for life because of late detection, but Thank God he has his life.  Unlike Joey, he had this developing at birth.  A simple eye dilation exam would have given him 20/20 vision.

Joey died because he was denied the standard of care at his well check up.  The pediatrician never turned out the lights and used the ophthalmoscope to look at the back of his eye.  If this would have happened at his 18 month exam, he would be 12 years old with his eye and his sight.  Tragically, the majority of our health care professionals are still not using their ophthalmoscopes at all well check ups!

I know someday, hopefully in the near future, we will give our children the sight they deserve.  Needless blindness, eye enucleations and death are not acceptable in 2009.  Healthy eyes start at birth!  We just need to look!  It is a gift we can fix this…working together, it will be done.

Please update me on the results of Simmi’s exam.  Angela, you are an alert grandma.  Simmi is very lucky she has you.    Contact me at any time.  Joey is smiling; his message is being heard.

Peace and Love,

Pam

Pam Bergsma (Joey’s grandma)     Eye Dilation Exam

The Joey Bergsma Retinoblastoma Awareness Foundation (501c3)
619 South K St.
Lake Worth, Fl.   33460
(H) 561-586-2094
(C) 561-379-6374
www.lovejoey.org
“Joey was and continues to be a gift of light and life to other children”

Here are a few other links and pictures she included in her email to me:

http://cbs2chicago.com/health/retinoblastoma.Pam.Bergsma.2.320249.html

Tags: eye cancer, Joey Bergsma, Retinoblastoma

As I think about the holidays, which is only a few days away, I can’t help but wonder what the heck I’m going to make this year for Christmas dinner!

Simmi is a meat hound, and thank god she can eat all meats, but becoming creative during these holidays has me drawing a blank as to what I’ll make beyond a turkey. I know I’ll be making a stuffed mushroom dish I made on Thanksgiving that came out awesome…but that’s just one dish. How about everything else? I haven’t given Simmi anything with nutritional yeast in it yet, but I know that using nutritional yeast can help achieve a “cheesy” flavor to foods. If anyone has used nutritional yeast in foods for their food allergic child, please let me know.

The stuffed mushrooms were made with onions, garlic, spinach, chopped mushrooms, tapioca bread, white wine, lemon, salt and pepper. I put the mixture into the mushroom caps and baked them. It was simple and even though I used tapioca bread for the stuffing, the bread really absorbed all the different flavors and worked well. I’m thinking of having stuffed artichokes as well. Thanksgiving was a little more lax since at that time we didn’t make our home completely food allergen free. Christmas will be, so I really want to make it wonderful for those who aren’t suffering in my family with food allergies…that’s everyone else!

Tags: allergen free holiday food, Christmas

On Friday December 18th, I needed to take my son to the doctor to get a sports physical. Whenever I have to take Simmi out to the store or anywhere else, that nagging fear of what is lurking on the floor or in some seat cushion is always plaguing me. I’ve learned to live with this fear for well over a year and at times I’ve been criticized or looked at weird when I explain that Simmi’s severe food allergies keeps us from attending some event, playgroup or even the thought of attending preschool in August 2010. Going out of the house is a major anxiety event for me each time I pick Simmi up to put her into the car. Questions always enter my mind “Who sat in this shopping cart before her? What was that kid eating? What was on his or her hands that they may have transferred onto the surface Simone touches?” If I go to a doctor’s appointment for her, on the way I’m wondering about the mother who lovingly brought along a snack for her toddler consisting of Honey Nut Cheerios, cheddar cheese Gold Fish, poptarts or anything else that is convenient and will keep a little one satisfied and happy. It seems so unnecessary to have those things swimming around in my mind, but I can’t help it. I worry about these things constantly, always being on guard for that stray peanut or other product that could harm or even kill Simone.

When we go out there is always a set of eyes on Simmi. Whether it is me, Dom or one of my kids, someone is always watching. We arrived at my son’s appointment and Simmi was running around being her cute self. My son Noah was faithfully keeping an eye on her as I filled out the paperwork for his visit. I was unprepared for the events that transpired shortly before Noah went in to the examining room. You see, I let my guard down. Whenever we enter a store or anywhere unfamiliar, I always scan the place with my eyes looking for that “thing” that could cause Simmi harm or death. I didn’t scan the doctor’s office. We walked into that office, I got the paperwork and just started writing. If it wasn’t for Noah’s loving attention to detail, our situation may be quite different. Neither Noah nor myself noticed that there was a vending machine located in the corner of the waiting room. It was the kind that dispenses candy when you put in a quarter, you turn the lever and grab the candy by the handful.  This thing was filled with three different types of candy, one of which was Peanut M&M’s. Simone had wandered over to that machine which had a few M&M’s sitting in the tray just begging to be picked up and tasted! Who was she to argue with the small roundish brightly colored object? She’s never even seen a Peanut M&M before. Noah had turned around for just a second to look my way and when he turned back to watch Simmi, he noticed that she had something brightly colored in her hand AND she was just about to put it in her mouth. He ran across the room as fast as he could and his quick movements caused me to look up to see what was going on. I looked on in horror as he removed the peanut M&M from her hand and threw it in the garbage. At that point I quickly got up and started to walk across the waiting room…but this little toddler of mine was quick! Before I even got to her, she spotted another M&M on the floor and picked that one up too! I was in panic mode. Both times she picked up the candy with her left hand, so I grabbed her and held on to her left hand so she wouldn’t touch any part of her body or put her hand in her mouth. Now the receptionists were staring at us trying to make heads or tails of the events unfolding before their eyes. I rattled off to them all her food allergies and asked for the bathroom so I could wash her hands, but when I got into the bathroom, there was a pump container filled with liquid soap. Still holding her and now also trying to read the ingredients on the back of the soap container, one word stood out in the ingredients “Cocamidopropyl betaine” which comes from Coconut oil. Normally we wouldn’t be concerned with this product since she used to eat quite a bit of coconut oil, but after she had a violent reaction to coconut oil last weekend and because she is now highly allergic to tree nuts, I could not expose her to the soap! All of this was happening so fast that I wonder how I was even able to think properly. I quickly came out of the bathroom and asked Noah to get her wipes out of the diaper bag. I must have used five wipes just on her one hand. Was I over reacting? I had regret racing through my heart, and I was inwardly chastising myself for ever letting down my guard. I wiped off her hands…and mind you, this is all taking place in a matter of three minutes (it felt like an hour!) and all the sudden out comes the welts. She starts scratching her left hand and now she has a bright red rash traveling up her hand and arm. I alert the receptionist that I need Benadryl and I’m kicking myself in the pants now for NOT putting it in her diaper bag the one time we needed it most! Does the receptionist bring me benadryl? NOPE, she brings me cortisone because they don’t have any Benadryl available. I could have gotten mad at her, after all it is a doctor’s office…but I was super angry at myself for not taking the proper precautions in the first place. All I could do was hope that it was just a rash that she would get and stay armed with Epi-pen in hand. The rash traveled up her arm and before the end of ten minutes she was covered from head to toe in a raised red rash. All I could do was look at her like she was a bizarre science experiment. I felt helpless and so unbelievably guilty. We left the doctor’s office, I drove Noah to school and when we got home Simmi ran straight for her room saying “ba ba” “ba ba”. I tried to give her Benadryl but of course she is totally freaking out and screaming if I try to get it into her. It spills all over the place with only a very small amount actually swallowed. She fell asleep in less than five minutes and I sat in the dining room with the monitor turned up as high as it would go just so I could listen to her breathing. Simmi was so exhausted she slept from 11:30am to 4:30pm. I sat with the “shouda, coulda, woulda’s” running through my head.

After she awoke from her long nap, I went in to examine her body and the rash was still there, but so where a few other things that I haven’t seen since she had a severe reaction last year…purple little spots on her chest which happens when she has a severe allergic reaction. She’s OK now, but all that day and into the night Dom and I sat there staring at each other, reminded of just how serious her allergies are. We started going over action plans again, discussing the new things that can’t be brought into the house like Duralogs for the fireplace (they contain nut shells), or real pine wood because of her allergy to pine. It feels like our world is closing in around us as we must continue to do things that will safe guard her well being. Our home has now become completely food allergen free as well. We do not bring anything into the house that contains peanuts (that was always a rule), wheat, milk, soy, eggs or tree nuts. At her allergy appointment when we got the results back from her RAST, we realized that there is a good possibility that even cooking foods that contain the things she is allergic to, could be breathed in by her and caused her levels to increase to an alarmingly high level.

With her speech and vision problems complicating things more, we are hopeful that in time she will be able to communicate with us and let us know when she is starting to feel some sort of reaction coming. All I can do at this point is learn from that experience and always stay on guard and alert without making her feel like the world is a dangerous and unsafe place to live in.

Here are some photos I took of her after her first rash from our dog. Three days after those photos were taken, the outer skin on her nipples started to fall off:

Tags: food allergic child, Peanut M&M

In March 09′ I created “Loving Simone” as a way to reach out to others who may be struggling with the same types of health and neurological issues Simmi is faced with. I also joined several different message boards, groups, listserv’s, as well as social networks trying to get a handle on what was happening to Simone. What I found were some of the most generous and beautiful families struggling to give their disabled children a better life. What I also discovered was that all of us are so scattered across the internet in little micro groups and categories without any place to connect us all.

There are parents out there that may have children suffering with a single food allergy and others on the other end of the spectrum holding on for dear life as their child struggles to live just one more day. No matter how mild or severe the problems are, we need to gather strength from one another and blaze forward in search of the answers that we seek. I believe that The Sensitive Souls Network can be a tool in connecting us with one another easily. I created this Network to be a stepping stone to providing a better quality of life not only for my own grand daughter, but also for all children suffering with a disability.

Reaching out to parents who may have a child with problems but is undiagnosed is another important goal that is very close to my heart. Parents often feel very alone as they take their child from one doctor to the next trying to figure out what is wrong with him or her. It’s frustrating to say the least, and when a child doesn’t fit into any one diagnosis OR has multiple unrelated health problems, parents can feel “left for dead.” I want this Network to be a place of comfort as well as a way to receive much needed resources, wisdom from experienced parents, and a place to grieve if necessary.

I was going to wait till the new year to launch The Sensitive Souls Network, but as I thought about it, I realized that this Network will always be a work in progress with new things to be added daily. The site is kind of empty right now and I still have a lot of resources and information to add, but I would like to open it up and invite you all to become members. Its free to join.

Here are some of the features I put in place, and there are more to come in the future:

• Personal profile page- You can set up your profile to let others know who you and your child are
• Blog- Blog as little or as much as you’d like. The thing I love about this feature is that it can help chronicle your life and keep everyone updated about how your child is doing (or you). I’m a part of a few different message boards, and when others inquire about Simmi, it can become frustrating to try and retell a story over and over. With your own blog on the Network, you’ll be able to write it once and then refer others to your blog about what’s happening so you won’t have to retell a story multiple times.
• Groups- You’ll be able to create your own groups and/or join an existing group.
• Forum- I’ll be adding the Forum in the next few weeks
• Video chat- You can start a private video chat with other members or simply instant message them
• Add photos and videos

Here are some things still to come and in the works:

• Resources
• Main chat room
• Facebook application- you’ll be able to keep your peeps on Facebook up to date with your latest blogs as well as signing in to the Network through Facebook
• Lots more!

As I said earlier, the Network is a work in progress. I value feedback and suggestions! If you have a link, resources or information that you feel would help add to the site, leave a comment on my profile page or send me a private message there.

http://www.sensitivesoulsnetwork.com

Thanks for reading!

Tags: families with disabilities, social network, The Sensitive Souls Network

I just wanted to say “Thank You” to the parents that have reached out to me and Simmi. I am so inspired by you all and I don’t feel so alone in caring for her now. Dom and I are always searching for answers and trying to connect with other parents that could give good suggestions on how to raise the quality of her life, and I’m so grateful to those who have taken the time to make that possible! I wanted to first say thank you to the moms on the CVI message board, because the strides that I have made with Simone are amazing. I always keep your suggestions in mind when we do things each day and your wisdom and knowledge has helped us to “see things” from her perspective. Next I’d like to thank all the parents from Apaxia-Kids listserv…I am truly overwhelmed by the support you have all given! It is such a relief to talk to parents who understand what its like to have a child with speech and sensory issues. I really didn’t expect many parents to reach out as they did, and I just smiled reading all your stories about your children and how you made it through. It is always encouraging to hear success stories and a great comfort to know that what Simmi is going through is not unique only to her.

All I can say is Thank You, Thank You, Thank You!

Here is a video of one of Simmi’s speech therapy sessions. The speech therapist only comes every other week, and from what I’ve heard from other parents, their children are getting speech therapy a few times per week. I think we need to consider increasing her therapy sessions.

Tags: Apaxia Kids, CVI, parent support

Yesterday as I was doing research on Omega 3 and Omega 6 oils, I came across this extremely interesting and promising article. I’ve been following some studies which tend to suggest that Omega 3 and 6 oils can help to assist in the speech of children with vocal Apraxia and of course I want to know if this is a direction I should be considering for Simone. She isn’t allergic to shell fish or fish in general, so the search began. I came across this article last night, and I literally had a hard time falling asleep because I was so excited about its implications! I’ll be calling Simmi’s allergist today and discussing this article with him. I’ll also be calling the Children’s Hospital  in Oakland, CA to find out if they have an ongoing study that Simmi can be a part of…Here is the article:

Children’s Hospital Oakland Scientist First to Characterize Novel

Syndrome of Allergy, Apraxia and Malabsorption

New Characterization of Syndrome Offers Hope for Treatment Protocols
July 13, 2009–Oakland, Calif. – A landmark study conducted by Children’s Hospital &
Research Center Oakland is the first to reveal a new syndrome in children that presents
with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders
were variably present. Verbal apraxia has until now been understood to be a
neurologically based speech disorder, although hints of other neurological soft signs have
been described. The new study, led by Children’s Hospital & Research Center Oakland
scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn
C. Agin, MD, a neurodevelopmental pediatrician in New York, however, suggests that
the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger,
multifactorial, neurologic syndrome involving food allergies/gluten-sensitivity and
nutritional malabsorption.
“While it is critical to treat verbal apraxia symptoms that often include severe delays in
expressive speech production with speech therapy, we need to start asking why these kids
are having these problems in the first place so that we can identify mechanisms we can
actually target to treat the cause of the symptoms,” says Dr. Morris.
Published in the July/August issue of Alternative Therapies in Health and Medicine, the
new study takes a major step toward identifying the potential mechanisms that may
contribute to apraxia symptoms. In the study, Dr. Morris collected information from
nearly 200 families with children who suffered from verbal apraxia in order to better
characterize the symptoms and metabolic anomalies of a subset of children. The data
clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with
low muscle tone, poor coordination and sensory integration abnormalities. In addition,
Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed
low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency
among others. All children genetically screened carried an HLA gene associated with
gluten sensitivity and celiac disease. “The sample size is still small and should be
interpreted with caution,” says Dr. Morris. “However this is of particular interest given
the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics
demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed
with celiac disease. This brings some credibility to the anecdotal reports of
gastrointestinal and behavioral improvements in children with autism spectrum disorders
and/or verbal apraxia when eliminating gluten from their diets. Although the implications
of these observations remain to be determined, this association and the utility of dietary
modifications warrant further investigation, particularly if we can identify a genetically
vulnerable group”.
Most significantly, the data indicate that the neurologic dysfunction represented in the
syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E
bioavailability may occur due to a variety of different causes, neurological consequences
are similar, regardless of the initiating trigger. The study suggests that vitamin E could
be used as a safe nutritional intervention that may benefit some children. Growing
evidence support the benefits of omega 3 fatty acid supplementation in a number of
neurodevelopmental disorders. Anecdotally children with verbal apraxia will often
demonstrate leaps in their speech production when taking high-quality fish oil. The
addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children
induced benefits that exceeded those expected from just speech therapy alone, according
to parental report.
“While data from a case series is by no means conclusive, the results clearly point to the
need for further attention to this poorly understood disorder, and a placebo-controlled
study to investigate the potential role of vitamin E and omega 3 supplementation in this
group of children,” says Dr. Morris.
She points out that it is equally important for children given an apraxia diagnosis to
receive a more comprehensive metabolic evaluation than what is current practice. Many
of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By
not addressing the nutritional deficiencies, the child will continue to suffer from
significant medical consequences of those deficiencies. The first step is to identify and
treat the deficiencies. The next step is to try to figure out why they have these
deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris
does advise families to work closely with a physician rather than trying promising but
unproven interventions on their own.
In the mean time, however, Dr. Morris’s study provides the essential foundation for
identifying the children who may need these treatments.
“By identifying these early red flags of the syndrome, we’ve provided a way to get these
kids treatment at the earliest possible moment. While 75 percent of the time kids
identified as late bloomers really are just that, 25 percent of the time there is a true
pathologic condition. To miss it is to miss critically valuable time for early intervention.
If a child has all these symptoms, chances are they are going to fall into the 25 percent
who have a condition that needs further evaluation and treatment.”
###
About Children’s Hospital & Research Center Oakland
Children’s Hospital & Research Center Oakland is Northern California’s only
freestanding and independent children’s hospital. Children’s is the leader in many
pediatric specialties including neonatology, cardiology, neurosurgery and intensive care.
The hospital is a designated Level 1 pediatric trauma center and has the largest pediatric
critical care facility in the region. Children’s Hospital has 190 licensed beds, 201
hospital-based physicians in 30 specialties, more than 2,611 employees and an operating
budget of $312 million. Children’s research arm, Children’s Hospital Oakland Research
Institute, is internationally renowned in bridging state of the art basic science and clinical
research for the treatment and prevention of human disease. With about 300 staff
members and an annual budget of approximately $50 million, CHORI is ranked among
the top ten research institutes in National Institutes of Health funding to children’s
hospitals. CHORI is a leader in translational research, providing cures for diseases,
developing new vaccines for infectious diseases and discovering new treatment protocols
for previously fatal or debilitating conditions such as cancer, sickle cell disease and
thalassemia, diabetes, asthma, HIV/AIDS, pediatric obesity, nutritional deficiencies, birth
defects, hemophilia and cystic fibrosis.

http://www.childrenshospitaloakland.org/about/documents/saampressrelease.07.13.09.pdf

http://www.childrenshospitaloakland.org/

Tags: allergy, apraxia, Autism Spectrum Disorders, Dr. Claudia Morris, Dr. Marilyn C. Agin, malabsorption, neurologic syndrome, Oakland Children's Hospital, Omega 3 oil, Omega 6 oil, speech disorder, treatment protocols, verbal apraxia

It has been a long time since I’ve written about Simmi and I apologize for not keeping up with my blog. I’ve had my own little mini health crisis as well as writer’s block which has made me completely unmotivated to even attempt to write. I’ll only be giving a brief synopsis of the different areas of her life because I plan on elaborating on them in time to come. There is far too much to put into one blog entry.

Behavior and Sensory Integration:

Simmi is doing quite well I must say. Her moods have calmed down quite a bit and she is learning how to handle different situations much better. Since Simmi has major sensory issues, being in control is the new monster we deal with. Many children with sensory problems tend to want to control their environment as well as everyone around them, and at times it can be quite a challenge to make a judgment call between sensory processing problems and just being two and a half years old. She hasn’t had any screaming episodes since the beginning of September which is beautiful! She’s learning how to “self-correct” and find a quiet dark place to retreat to when she is on a sensory overload. We have been able to take the dark curtains off of all the windows except in her room, and while the light does bother her, she is learning how to cope with it by taking several trips down the hall to the darkest area and just sitting there for a while. She’ll also go into her bedroom closet and close the door when she is overwhelmed. Before she learned how to do that, she would just scream and thrash about and annoy herself further by her screaming…covering her ears.

Learning:

Simone understands almost everything we ask her to do. She can follow direction, help clean up, understands who everyone is in our home, and can identify her favorite stuffed animals if we ask her to get them, but she can not point out or identify colors or shapes in a book. She understands the sound of a cow, dog, cat, bird and sheep, but she can’t say what they are. At times she will try to produce the sound they make. She understands emotions and can come along side someone who is upset or crying to comfort them and she has also learned the great power of “faking” her own sadness. The pouty lip and sad eyes progress to a full out sorrow fest where she is crouched down on the floor with her hands over her face, just waiting for a sucker to get pulled in by her display sorrow or displeasure.

Speech:

Simone’s speech therapist is getting closer to being able to identify the range of problems Simmi is faced with regarding her speech. As of now, she is suggesting Apraxia/Dyspraxia of speech but has not yet made a formal diagnosis. More time with Simmi is needed before she’ll say with certainty that this is what we’re dealing with. I’ll be discussing Apraxia of speech in a later blog post.

Allergies:

This is a big one! We just got the results back from her RAST blood work and we were alarmed to find that her food allergies have increased instead of decreased. All of the levels have doubled since she was last tested in Feb. 08. We have always been so careful not to give her any food that might contain what she is allergic to as well as never giving her a food processed in a plant that may use equipment to process those offending foods, yet her food allergies are through the roof! We don’t bring any peanuts into the house at all, we are very careful never to cross contaminate our foods with her food, and now she is also very allergic to all tree nuts! She’s never had a nut and now I feel nuts. I am unsure whether cooking the offending foods may be contributing to her increased food allergies via proteins in the air, so we are actually planning on omitting everything that she is allergic to from entering our home. It seems extreme, but just as we would never bring peanuts or peanut products into our home, we are going to do the same for milk, wheat, eggs, soy and all tree nuts. She has one more thing she is highly allergic to…DOGS! She absolutely adores dogs, and we just got a dog a few weeks ago for her. She started to have problems with her skin again, and we know its due to the dog. We don’t want to get rid of her because she is an excellent dog…but her RAST showed a very high allergy to dogs. I spoke to the doctor about it and he feels that if she doesn’t develop eczema again and doesn’t have any respiratory problems being around the dog that we could keep her. Our highest hope is to do all we can to make it possible to keep the dog. I can’t even begin to describe the beautiful nature and gentleness of this dog! Her name is Sugar and her name fits her disposition.

Update on our floors:

Our floors have all been laid and the only thing left to do is to put the transition pieces and the trim back on the hallway walls. We need to paint our hallway again for two reasons…first, the dark purple (I love this color) clashes with the flooring, and second, we will be doing the walls in a light yellow with flecks of gold mica dust in it. Simmi bangs into the walls when its light in the house and a shimmer added to the walls will help her to see it better. She has no problem navigating around in the dark and never bangs into anything when the lights are out…but stream light into the house and BAM! she is all over the place, falling and banging into things.

My daughter Hannah and her boyfriend Cole are visiting us till spring so I thought I’d end this post with a little video of Simmi tickling Hannah.

Tags: behavioral problems, dog allergy, multiple food allergies, occupational therapist, sensory integration, speech therapy

Simmi has been a little “off” for the last few days after we deviated from the schedule we have with her and decided to take her out. Dom took her to church where there is a playground in the back. She loved being there and since its covered, a lot of light was kept out. She explored inside the church and when she got home did ok for a bit, but then she started with the screaming again. I think it was just an overload for her. Anyway, today started out pretty good although we could still tell something wasn’t right with her. In the mid-afternoon I went to give her some lunch and POW!!! I got hit with what seemed like a psychotic child. I have never seen such a display of anger and hostility before in my life. I sat there almost in shock, trying to make sense of what was going on. She was irrational, flapping her hands, waving and swinging at me, and finally trying to hurt herself as well. If I looked at her or tried to say anything to her, she would start swinging again. I tried to change her diaper and she thrashed me with her legs and feet as though I were a stranger and she was being murdered. The screams were so bad that it hurt my ears. She would cover her own ears as she screamed also. After I changed her, she got up and tried to push me off of her blanket. She didn’t even want me near her belongings. If I touched a toy or even tried to offer her food she would freak out and start screaming “NO, NO, NO!!!!!!!!!!!!!!!!!!” Over and over again. I was trying to make heads or tails and wondered if she is just hitting those terrible two’s or if this is something that she can’t help. I felt powerless in that moment. My children never went through anything remotely like this when they were two years old. Each of them were awesome, and never aggressive or self harming.

She would calm down and just when I thought she was at peace, I’d move or say “Hi” to her and she would start all over again. After I said hi to her, she made her way over to her crib and hid between the wall and crib. From their she was watching me. If I looked at her or said something, she would start banging her head against the wall and start screaming again. It was beyond anything I’ve ever experienced. There was a part of me that wanted to discipline her for this behavior…then that small voice in the back of my head would say “what if she can’t help what she is doing right now?” Would she even understand? I decided to just sit and be very still, not looking at her or talking. I sat far across the room alone. She then started to smile, and acted like nothing ever happened and went over to her bowl of food. She didn’t want to sit in her seat when I first offered her food…she then and looked at the bowl of rice and broccoli, and reached for it. Now, I know this is going to sound cruel, but I actually moved the food to the top of the dresser where she couldn’t reach it. I felt that if all her screaming was actually over the fact that she didn’t want to sit in her seat, then I’d be damned if this child was going to just start eating it without listening to me. When I put the bowl out of reach, she started screaming, hitting and trying to push me out of the room. I stood my ground and wouldn’t budge. She started hitting herself again and finally stopped crying. After about five minutes she walked over to me, smiled and said “eat?” Then she went over to her chair and sat herself down. I smiled at her, put her tray on the seat and let her eat. She ate every bite and acted as if she never had any kind of hysterical meltdown. Dom came home while she was eating and she just turned around smiling and said “Hi!” and then continued to eat. What is going on? It seems as if she was pulling a power play on me. I am always super cautious when it comes to disciplining her because I never know if she is lashing out because she is in pain or if she is just being willful. Imagine if you will, that sweet little child turning into a miniature Hulk (minus the green and muscles).

If this is just a case of “The Terrible Two’s” then I am TERRIFIED! (I say that with a smile)

Tags: behavioral problems, disciplining a toddler, self harm, terrible twos

Simmi has been doing great as long as we keep her in her room with the curtain and blanket covering the window. She only had one difficult morning a few days ago. She wouldn’t get up from her pillow and I had to get into the crib and hold her till she stopped crying. She was a little “off” that day, but she still was very pleasant.

Both yesterday and today we had to endure some pretty heavy teeth grinding. It goes right through me when she grinds them and I can hear it from across the room.

She’s picked up a few more words and today when the speech therapist came, she was VERY talkative. I’ll be sure to post her session tomorrow. It was too cute. She had a little trouble focusing on looking at a book, but she enjoyed the other activities they did.

I have had a little more freedom over the last week and I’m starting to feel normal again. I’m still amazed what Simmi used to endure (and what we had to endure) when the house is full of light. We did take her into the rest of the a few times during the day, but it always results in her running all over the place and then not wanting to walk at all and screaming. Its not a happy scream either. It takes a little time before she gets to the point where she is totally irrational, but even the moments that lead up to the screaming get pretty annoying. I can only imagine what it must be like for her. I wish she could tell me how or what she is feeling. We’re trying to help her understand when she gets irrational by asking if she wants to go into her room or leave another area of the house because it is too bright for her. She is learning to nod her head yes to those kinds of questions. I’ve also tried to allow more light into her room by keeping her door open. When she starts getting agitated and starts pacing the floor, I’ll say “Do you want to close the door?” She’ll go and close it and within a minute she will let out a sigh and be ok again. I’m so glad to know that she doesn’t have some sort of behavioral problems. I used to think “What the heck does this child want or need? Why does she get so confused and nothing pleases her?” After being in a dark room with her for a week, I can honestly say that she doesn’t have behavioral issues…except for when she is in the light or is overwhelmed because we are doing and saying too much around her. If we keep things very calm, slow, and lower our voices, she responds beautifully.

Our next step is to get her in to see another eye specialist. Someone recommended I take her to a doctor that specializes in Retinal disorders. She is clearly photophobic and we need to get to the bottom of why she has such a strong aversion to light. Over the last two years of her life, she has had to endure the light but we didn’t think that it was affecting her as much as it was. Children learn to adjust, but how much adjusting did she really accomplish? She’s learning more now than at any other time in her life. I love watching her blossom and bloom. All of us look forward to each day as a new adventure in learning. We need to keep it real simple for her, but that’s ok.

Tags: tooth grinding

As we discover each day new things that help Simmi and hinder her, I have started to videotape her more and more. We purchased a few toys from Good Will that we thought she would enjoy. One was a light up stacker toy that made music, and the other was a musical guitar without lights. She did well at first with the lighted toy, but she started to get increasingly irritated and upset and then she couldn’t perform this very simple task of putting objects on and taking them off the toy easily. After taking the batteries out of this toy, she was finally able to put the objects on and off correctly.

Here is the video of her getting frustrated. You’ll also see at one point, she starts to put her hands in her hair. If I never cut her hair so short, she would have been able to pull a lot of it out during this session.

Tags: hair pulling, toys with lights and music