My Sweet Girl

Simmi truly is the sweetest thing in the world. As I sat with her today, we watched Alice in Wonderland and I couldn’t help but tear up as she started acting out a part of the movie. Alice was in the garden and the flowers were singing to her. Simone bursts out in song, waving and dancing…to me it was magical and so special. She loves that part of the movie more than anything else, and it is as if she is imagining herself right into the cartoon. I know that she is aware that her words are not correct, and I have learned not to make eye contact with her while she is singing so that she may freely express herself without feeling embarrassed.

Simmi has a deep and beautiful understanding of human emotion, and embarrassment does not escape her. As she grows and changes, verbally expressing herself is becoming increasingly difficult. She can say “eat”, but she can’t (yet) tell me what she would like to eat. Her vision is improving, and we are now able to put all her videos in the cabinet so that she can choose which video she would like to watch. She understands by viewing the picture on the cover of a video what movie it is, and while it may take her about a minute or longer for the picture to process in her brain, the light finally goes on and she either wants the video on or she will look at the next video cover. This will continue until she finds what she wants. It takes a bit of patience but I love her whole process and the fact that she is using her vision. She doesn’t like to look at books still unless they are glittery or have simple bright colors, but we still take out her box of books anyway. I have also started bringing my own books to read into her room, so when she is watching one of her movies, she will see me reading and hopefully become more interested in picking up her books as well.

We do have a few behavior issues with her, but I do what is called a “reset” with her. There are things that I can do to help her be more at ease when she is cranky due to her skin or stomach problems and sensory issues. One of the things I have done is to put the TV back in her room so that she can watch Mary Poppins while she is drinking her bottle in the crib. Mary Poppins is a favorite of hers, and it is her most requested item from the crib. I don’t even have to ask her if she wants to watch Mary Poppins, because if I put anything else in, or show her the video cover of a different movie she will immediately say “NO!” The second thing that is a “reset” is to put the gate up in her room and keep the lights off. I don’t need the gate up, because she doesn’t want to leave her room, but I put it up anyway so that she will feel in control of her environment. If the gate doesn’t go up, she will push me out the door saying “Go! Go! Bye!” and smile as she tries to expel me from her dark haven. Why does she want me out of the room so bad you may ask? Well, she likes to do things in her room she isn’t typically allowed to do when I’m present. It is really the cutest thing ever, because I’ll peek in after about five minutes and I’ll catch her standing on top of her black leather chair trying to step onto her rocking chair. Is she allowed to stand on her chairs? Uh…no. But that doesn’t stop her from exploring her limits when I’m not in the room. What else does little Simmi enjoy doing when I’m not in the room? She likes to take ALL the wipes out of the box and use each one to clean her floor, the crib, the TV and anything else she feels is dirty…including herself. I usually will give her two wipes, but she wants all the wipes. We know that she understands she is doing something “naughty” because when one of us peeks into her room, she will become startled by the door opening and while she is caught red handed, she will quickly try to put away the thing she shouldn’t have or sit down on the chair she’s been climbing on.

I’ve noticed that when we take her somewhere for an extended period of time, the next day she is worn out in the morning, her face is swollen and she is not feeling well. This morning was no different. Yesterday I took her for a walk and we were out for quite a while in the sun. When I woke up this morning I could hear her moaning in her crib and not moving around. I went in to see what was going on, and she was just laying there limp on her side, moaning and petting her favorite stuffed dog as she held it tight. She cried when I moved her to change her diaper and she wouldn’t get up afterwords. We’ve taken her out a total of four times in the last month and each time she has had this type of reaction the morning that follows. I’m not sure if the sun is a problem for her still, even though she seems to tolerate it well now when we go out, or if it has to do with the pollen count from the pine. Simone also has low muscle tone, and being very active wanting to walk around and discover things could be making her achy the next day as well. We are unsure at the moment exactly what the cause of this is, but we are hoping that it isn’t leading to a new rounds of seizures. She hasn’t had any seizures at night for about a month. We are usually awakened to a very loud thumping sound that lasts between one and five minutes and will usually happen two more times after that. When this happens, she actually becomes energized and will start laughing and giggling and jabbering up a storm. Sometimes she is up all night after one of these events and she doesn’t fall back to sleep until morning. We don’t get to sleep either, since we are up counting the amount of minutes her seizures last and how many she has after that. There seems to be a cycle to when they come, but we haven’t quite figured out the exact cycle. In the days leading up to her seizures, we do notice that she will become less active, more tired and cranky, clingy and she doesn’t want to walk or jump as much. After the seizures happen, her language always improves and new words come out clearly. The vocabulary she has right now I believe is due to seizures she has had in the past. With each event, new words come out…some stay and others slip away after a week or two. We try to get her to repeat those words as often as possible and to build on the core words she has now, but I can see how frustrated she gets when she gets stuck trying to say a word that just the day before she could say and now she can’t. During times when she knows a word but says it wrong, she has resorted to closing her mouth completely and makes sounds with her lips shut tight. I’m unsure whether she is doing this on purpose, or if its a part of having Apaxia, but my heart breaks each time she tries, because I can see the frustration in her eyes.

Tags: Apraxia of Speech, behavior problems, childhood development, seizures, sensory integration disorder, toddlers

Today Simone’s speech therapist came and finally gave a diagnosis of Apraxia of Speech. In September 08′ a neuro-developmental pediatrician had given Simmi a partial diagnosis of “speech disorder of unknown origins.” It can take a long time for a child to be diagnosed with a speech disorder, and after almost a year of working with Simone, her therapist finally was able to confidently give her the diagnosis.

Simone will be finished with her early intervention program very soon, and her speech therapist suggested kicking up her therapy to something much more intensive. With proper therapy, I feel extremely hopeful that she will someday be able to not only speak, but to do it very well!

Below is the definition of Childhood Apraxia of Speech from the CASANA website, and following that are two videos for anyone who would like more information on Apraxia of Speech:

Developmental Verbal Dyspraxia or Developmental Apraxia of Speech?

These two terms are generally synonymous. Developmental verbal dyspraxia is often shortened to “DVD” and developmental apraxia of speech to “DAS“. The “a” in “apraxia” stands for absence and “dys” in dyspraxia stands for partial. Thus, apraxia is absence of speech and dyspraxia is used by some to indicate some speech ability. “Praxis” indicates difficulty executing skilled movements.  However, more recently Childhood Apraxia of Speech is the preferred term for describing apraxia of speech in children.

Oral Apraxia and/or Verbal Apraxia?

Oral apraxia indicates that the child has difficulty with volitional control of nonspeech movement. For instance, perhaps the child will have difficulty sticking out and wagging their tongue when requested to do so. Or the child may have difficulty sequencing movements for the command, “Show me how you kiss, now smile, now blow”. Verbal apraxia indicates that the child has difficulty with volitional movement for the production of speech. This can be at the level of sounds, syllables, words, or even phrases (connected speech). The motor struggle is most typically seen with sounds sequencing.

Often oral apraxia accompanies verbal apraxia, but that is not always the case. Speech and language pathologists have mentioned that it is very rare and fairly unheard of for a child to have oral apraxia without verbal apraxia/dyspraxia.

Volitional — What does it Mean?

In the course of discussing apraxia, as we have above, you will note the use of the word “volitional”. The meaning of this word in relationship to apraxia/dyspraxia of speech means that the child is experiencing the difficulty in nonspeech and speech movement when they are very consciously aware of trying to make movements or they are attempting movements when requested by others. Those same movements, sounds, etc. may be heard while the child is busy playing or he/she just seems to blurt out when no one is really paying attention or trying too hard. As an example, the child may be playing happily and parents may hear sounds being made - almost without thought - “ma, ma, ba, ma,da”. However, when the parents attempt to get the child to use those sounds - “Say Mama!”- the child is unable to do so. In many cases one can see the struggle on the child’s face. They may grope with their lips or silently posture their lips as if searching for the position they need. One minute they could do it (when not thinking about it or attempting the task) and the next minute it is an intense struggle (they are now aware of the request and are trying to will their mouths to make those movements - volitional control).

“Pure” Apraxia of Speech:

What is meant by “pure” apraxia of speech is that no other speech, language, cognitive, or sensory issues coexist with the deficit of impaired sequencing for volitional speech (apraxia). The professional literature tells us that “pure” apraxia of speech in children is rare, that most often apraxia is associated with other speech, language, cognitive, and/or sensory issues. Paula Square states that,

“In its purest form, acquired apraxia of speech does not coexist with language impairments, auditory processing deficits, or cognitive deficits. Nonetheless, ‘pure’ apraxia of speech rarely occurs. Coexisting deficits for expressive language, psychoacoustic processing, and motor execution are likely to occur in both acquired apraxia of speech and DAS (developmental apraxia of speech) because of the proximity of the neural structures underlying each of these processes to those that generate programs for praxis. A review of the literature suggests that co-occurence of language impairment with both acquired apraxia of speech and DAS is frequent…”

Associated issues might not be apparent in a young child. This is especially true in children who are young preschoolers. For instance, these children may not have any apparent problem with receptive language according to traditional and typical assessment. However, the child may begin to experience difficulty when entering kindergarten, when the language processing demands of the setting are heightened. It would not be unusual to then identify higher level language processing problems. Parents and professionals will do well to be vigilant about the child’s total development to insure that, should an associated area of difficulty arise, help for the child will be readily available.

Tags: Apraxia of Speech, CASANA, Early Intervention

Simmi has been through so much since November 09′. It started with her being allergic to our dog Sugar, making her itch and scratch, and feel totally uncomfortable. Then after the peanut M&M incident, her skin just seemed to get worse from there. Purple spots plague her torso, and her skin feels like sandpaper. Back when she was a baby, we had a regular routine of needing to lube her up throughout the day to keep her skin from drying out with Vaseline and using Triamcinalone to control the eczema. At this point I feel like I’m back at square one, except this time the rash is less severe.

Bath time always gave us some problems when it came to washing her, but since her skin has been acting up, I think the soap just stings her delicate skin, which makes her scream and get very angry. I’d be angry too if someone was rubbing soap into my rashy skin. She loves being in the bath and playing in the water, so we try to wash her before she starts playing, just to get it over with.

It seems that she is becoming hyper sensitive to foods she wasn’t allergic to in the past which is further complicating her skin condition. The most soothing part of the day for her is when I wrap her naked in a big fluffy towel, rocking and holding her tight, and then laying her down to put Vaseline and medicine on her body.  I can see her whole body just relax and she lets out a sigh of relief as her eyes close slightly. In her relaxed state, she will perk up and want to partake in the daily lathering ritual. I give her the big container of Vaseline, and she will stick her whole hand in there right down to the bottom. She cups her hand and brings out the biggest clump of Vaseline! Simmi will hand me the container and begin rubbing the big globby mess into her hands and then rubbing it into her skin. She pays particular attention to her face, making sure to cover every square inch of it. Lets not forget about her hair too! Oh the hair…she must put it all over her hair and finally, the biggest treat of all-snacking on it. Hmm? She likes the taste of Vaseline so much she wants to eat it. I’ll let her take a taste, but beyond that I usually will remove the excess from her hands so she doesn’t enjoy the Vaseline too much. Once I made the mistake of leaving the Vaseline on her dresser within reaching distance, and when I went in to check on her, there she was on the floor enjoying rubbing it in to her face and eating it up. We keep it in a locked drawer now.

Tags: eczema, Food Allergies

Its amazing how quickly time goes by. Simone will be three years old in four months. The picture on the left is of Simmi and Poppie walking down a the road on a piece of property we went to see this past Saturday. We were walking around on that land for almost two hours, and it was great to see her be so excited and also handle the bright sun so well. I was concerned that the bright sun would start to make her scream, but she handled it beautifully. She has been learning to adjust to bright lights and full sun, and when she is overwhelmed by the light or by noise she will go find a dark quiet place to settle herself down. She has been putting into practice her own coping skills which has been her biggest breakthrough so far.

Simmi is an absolute delight. She’s is exceptionally intelligent as well. As she learns to maneuver around her own speech problems, she is finding other ways to communicate. Not through sign language, but through “showing” us what she wants. She can ramble on and on about something, but when we say “show me” she will show us what she wants or even how she is feeling. Just like any other toddler on the planet, she has learned the art of emotional manipulation. Almost all toddlers do it, but how you handle emotional manipulation will surely make your life a living hell if you don’t maintain control during those times. So what does emotional manipulation mean to me? There are several examples I can give but depending on the child’s understanding, sometimes they can be more complex situations. For now I’ll give a few basic scenarios:

I am the one that is with Simmi throughout the day. Everyone else in the family is either working or at school. When the emotional manipulation started, it was simply screaming at the top of her lungs (not all the time) when I said she couldn’t have something. After a few times of that happening, she employed another tactic…”pouting.” Oh the pouty lip! How I love it. If I say “no you can’t have that” or “not right now” or “no you can’t take the bubbles into your crib,” she’ll collapse on the floor, put her hands together, playing with her fingers, stick out that pouty lip and these big tears come rolling down her face. It is quite the site. She will sit very sorrowful for a few minutes, and when she realizes that the pouty thing isn’t going to work, she gets up like it never happened and accepts that she will not get what she wants. You may be thinking to yourself, “yeah, so what, all toddlers do that!” I’d say very true since my children all did that as well, but as for me it allows me to see how her mind works. It allows me to see that she can reason to a certain extent and also understand that “no means no.” Which leads me to example number two…

The end of the workday draws near and Poppie comes home. She is so happy to see Poppie that she runs into his arms. He is such a softy with her and he can’t resist her charms. He has gotten into the habit of always picking her up and carrying her around in the house. Is this bad news in the making? Well it is for him and for her. I don’t pick her up and carry her around the house all day. We do activities, play and things like that. When Poppie is home, she is like this very powerful little being controlling the largest person in the house. He picks her up and she’ll point to a direction…he takes her there. She points to another direction, he takes her there. If he tries to put her down, the extreme screaming starts, so he quickly picks her up again. This is emotional manipulation to an extreme. The screaming doesn’t stop unless she gets what she wants from him. If I step in and whisper to him not to pick her up, she will scream and scream, and if I try to correct it, she goes into the pouty mode. She will not look at me, smile, and no one can talk to her in those moments. By “moments” that could be a half hour or more. Then without a second thought, he’ll pick her up again. Its like second nature to him. When these types of things occur it just teaches her that if she holds out a little longer, she’ll get what she wants anyway. This can hinder any pleasurable experience he might have with her in a major way. She is in complete control of him, so if he wants to do an activity with her, or employ some therapy techniques, she stops that dead in its tracks. We have therapists here throughout the week, but it is up to us to take the lead with her therapy. A therapist is only here for a short time showing things we can do for her to help her, but if he can’t be proactive in her therapy because she is controlling the situation, he loses out on a beautiful experience. Often he feels trapped in the situation, so we are working on ways for him to be a little more firm with her. Its almost painful for him, because he looks at those gorgeous green eyes of hers and he melts. To make matters worse, she just started to say “Poppie” this past week. Its awesome that she can say his name but for him it is torture! LOL He will hear “Poppie? Poppie come, Poppie come, Poppie come!” and he will want to go in there and just sweep her out of her crib into his arms. It is the sweetest thing to hear her call his name. But we have a schedule we keep with her…especially in the morning, and if he breaks the protocol, the day goes sour very quickly. This past Saturday was a good example of that. He and I were having coffee, and she knew he was home. She knows each of our footsteps. We always go into her room and get her bottle ready, change her diaper, and she drinks in the crib and lets it digest for a while. After about an hour and a half we take her out of the crib and she can have breakfast…this is the start of each day. Including the weekends. Consistency is very important. It was hard for him to just sit and listen to her say “Poppie come, Poppie? Poppie, POPPPPPPPPIIIIIIIIEEEEEEE!!!!!!!!!!!!!!!!!!!!!!” But it was good for him to see that it would stop. He and I sat there giggling with delight as we listened to her call his name. When that didn’t work she said something she’s never said before…”MOMMY”. Now, I’m grandma, I have never been mommy. We never taught her to say mommy or to have her call mommy, but she was saying it very clearly. By this point it was time to take her out of the crib, and when Dom went in to get her, she looked at him and said “Oh Poppie” and put her head on his shoulder, and when I came into the room she pointed at me and said “Mommie” then pointed at Dom and said “Poppie.” She made the connections and said things purposefully. She’s been saying his name ever since.

Another more scary thing that has been happening is that she is having reactions to food that she has never been allergic to before. On Monday, we gave her tilapia with a sauce that Dom had made. Within a minute, her lips swelled, her face puffed out and started turning red. Then she wouldn’t close her mouth. I rushed and got some benadryl into her and she was ok after that. We don’t know if she is developing an allergy to fish now, or if it was one of the two spices in the sauce. Two of the ingredients were mustard and cummin. Then she had a bad reaction to some homemade potato chips we made. She loves potato chips, so we made some using corn oil. We are unsure whether she is developing an allergy to potato or corn or both. We gave her some regular potato chips and she had an even worse reaction than to the ones we made. The potato chips we bought were made with corn oil. Until we take her for more testing it is hard to know what she is allergic to. Her reaction to the potato chips yesterday was really bad also, resulting her in lips blowing up, and not being able to close her mouth. The rash on her face was bright red as well. Simmi can’t seem to catch a break with all this food allergy stuff. It usually takes a few days for whatever is in her body to finally reach “the other end” and then she ends up with a really bad diaper rash. She has had a total of three severe reactions since December, and when that happens she also gets purple spots. Right now her chest is covered in purple spots. They can take anywhere from a month to three months for them to clear up.

Sorry this entry was so long…its been a while since I’ve updated her blog.

Thanks for reading!

Tags: emotional manipulation, photophobia, severe food allergy, speech disorder, three year old toddler

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