Friday, November 07, 2014

Special Nees Spotlight || Peter



Hi, I'm Brittanie. My husband (a third-year Podiatry student) and I live in Philadelphia, Pennsylvania with our three kiddos - one girl and two boys. We love exploring the City and the Mid-Atlantic/New England area. As a family, we love adventures, exploring the outdoors, traveling, water sports and activities, and playing board games. We have fun dancing, singing, and exercising, frequenting the shore and building things together. I used to own a floral design business, but have taken a temporary break since moving to Philadelphia.
Our oldest son, Peter, has been diagnosed with Food-Protein Induced Enterocolitis (FPIES), which is an allergy that effects the gastrointestinal system, and the immune system. It causes extreme vomiting and diarrhea until the body goes into shock, extreme lethargy, dehydration, pale skin, and sunken eyes. FPIES reactions happen about 2 hours after exposure, and almost always begin with delayed onset vomiting. Even the smallest crumb can send a child into life threatening shock and sepsis. Peter also has severe asthma, a myriad of other allergies, and allergic rhinitis. We are awaiting further possible diagnoses. We love our family and I’m happy to share some more information about us with the readers today.


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Miggy:  Hi Brittanie, thank you so much for being here today. So as you said your son Peter, has multiple diagnoses. Can you take me back to when you first you knew something wasn't right? When did you finally get a doctor or doctors to confirm this? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Brittanie:  Peter was a good-natured, tenderly sweet baby, but from the beginning he would scream for hours, and projectile vomit after nearly every feeding. We originally thought he had acid reflux, and our pediatrician prescribed us some reflux medication, but that didn't help. His whole first year of life we spent consulting Neonatologists, Nurses, Doctors, Allergy and Asthma specialists. He was up screaming all night, every night. He was throwing up during the day. I was breastfeeding, so I cut all sorts of things out of my diet. We switched to different formulas. Sometimes he would improve a little, but nothing was really working. When he was about 8 months old, he started to lose weight. I felt defeated. I was exhausted. My husband was in his pre-med classes and needed some sleep too. We switched him to almond milk (endorsed by his allergist). Peter's coloring turned grayish. We didn’t know what else to do.
When he was 18 months old, we moved to Philadelphia for my husband's medical school and Peter saw a gastroenterologist. He was the most helpful, but still unable to give us a diagnosis even after multiple tests.
For the next year, I still woke up nightly with my screaming baby boy, writhing in pain. In April, 2013, my son was hospitalized for what we thought was a severe stomach flu. He was so dehydrated they gave him 5 bags of fluids in less than 24 hours. He had metabolic acidosis. He was there for 2 days, with just popsicles, juices and graham crackers, and an IV. When we were discharged, the nurses told us to avoid dairy for two days, just until his stomach recovered. When we re-introduced it on the third day, he was screaming again. I never went back to it again.
We thought we had fixed the problem, since he wasn’t screaming at night. But, he would still complain of an upset stomach. And, he still was having irregular bowel movements. We had cut dairy in it’s raw form out of his diet (cheese, yogurt, milk), but not its baked form (cheese crackers, cookies, bread), and we hadn’t even thought about soy.
That hospital stay was just the beginning of our time in the hospital that year. In the next 12 months, we had overnight stays at least once, sometimes twice per month. But this time, it was for asthma, and what we thought was Croup. After eleventh stay, and twelfth time being prescribed oral steroids in a year, I met with a new doctor at our group practice. She told me my son’s medical history was alarming, and I really needed to see a specialist. She referred me to her personal allergy and asthma specialist.
That was in June of this year (2014). My son was nearly 3 ½. We met with the specialist in July. Our new doctor diagnosed my son’s milk/soy protein allergies, as well as his asthma diagnosis, and all of his other issues within minutes. They did skin allergy tests as well. I felt free, enlightened, alive; for the first time in 3 years I felt a HUGE weight lifted off my shoulders. FINALLY, some answers.
I later discovered this specific doctor specializes in my son’s condition. He's published papers, established new treatment applications, and done tons of research. He was truly a literal, specific, answer to our many prayers. We walked away with new medicine, a HUGE packet of information, and letters to hospitals, doctors, school personnel. He detailed our new treatment plan. And, even though my work load had just quadrupled (I also had a 5 month-old baby to juggle), I felt light as air. Finally someone knew what was going on, and was helping my child.
We also learned that our stomach-flu hospital stay was actually a potentially-fatal allergic shock reaction that my son’s body had from being sensitized to so many allergens for so long. We were lucky we had such a positive outcome from it, because that it not always the case.
It’s only been 3 months since our initial diagnosis, and we’ve been in the hospital once, and changed medicines/doses, but we’re already SO much better than we were before. I also discovered, through this same doctor, that I, too, have FPIES, as does my daughter.



Miggy:  Explain how Peter’s needs affect your day-to-day life.  

Brittanie:  We have a strict medicine regimen, morning and night, and sometimes around the clock for my son's asthma. All his food is either home-made, or completely milk and soy-free. He has to eat about every 2-3 hours or he ends up very hypoglycemic. We can't go out to eat, and we try to emphasize the good things we can eat. My son calls his "safe foods" Peter-food (like Peter-milk). It helps him own and enjoy the foods he can eat.

We have to limit his exposure to allergens. Our wood floors throughout the house are supposed to be swept and mopped at least once daily. All surfaces are supposed to be dust-free. Sheets are to be washed twice per week. We have a special air purifier in our house. We cannot have pets, and the fact that we share a wall with a smoking-neighbor is very difficult. If he has been around any offending allergens (pets, for example), I have to wash him/shower him immediately to lessen the severity of his reaction.
We also have to take extra precaution around other small children. I cannot take him to daycares or places where he is exposed to excessive germs, because even the smallest cold will send him into the hospital. We wash hand frequently, and rarely go places where there are lots of other children.
Oral steroids inhibit growth, so we do whatever we can to limit his dosages to facilitate normal growth. He also takes a multivitamin and fluoride because the breathing treatments dry out his teeth and weaken them.
 
                                                      
Miggy:  What are the biggest worries you face for Peter?   
Brittanie:  Exposure to allergens, particularly food allergens, is my biggest concern. Because FPIES is Non- IgE mediated, meaning there is no swelling, rash, etc. typically associated with allergies, he could potentially be exposed by eating something at school or elsewhere and I wouldn’t know until hours later when he exhibits symptoms. If the exposure is large enough, he could have a shock reaction again, and those are potentially fatal.


Miggy: Like all parents we still have hopes and dreams for our special kiddos, what are some of the hopes and dreams you have for your son?

Brittanie: I just hope that he gets to a position in his health where he can run and play without fear of an asthma attack. I hope we can find the right diet for him so he can grow and gain weight healthily. And, I hope that he will not have any lasting effects/delayed medical issues from all the medicines he takes daily. I know he will likely struggle most or all of his life. I just want him to be able to experience as much as possible.



Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
 
Brittanie:  We talk a lot about bowel movements. My son even has a song for when he has to go to the bathroom. And, he proudly announces when he has gone poo - which is good, because I need to know, and I need to check it! But, to other people, especially in public, it seems rather odd, or endearing at best.


Miggy:  I know that food allergies in particular can be misunderstood at best and underrated at worst. How can people best approach or respond to your family and your sons needs? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Brittanie:  People often say, "Oh, well, at least you don't need an Epi-pen." Or, "At least it's only a gastrointestinal problem, that you can fix with his diet." But, the opposite is actually true. An IgE-mediated food allergy (something that causes anaphylaxis) is somewhat forgiving. If a child can tolerate the amount of dairy in, say, cheese crackers, without an anaphylactic reaction, the child can still outgrow the milk allergy in many cases. For many children with this condition, regular ingestion of small amounts of a trigger food may help to outgrow the clinical reactivity.

FPIES is very UN-forgiving. The same amount of milk protein in one cheese cracker a month is enough to keep a child sensitized and reactive for the rest of his/her life. That small amount of milk protein will keep the clinical sensitivity alive and make a severe reaction (like shock) more likely upon a exposure to a larger amount of allergen.



Miggy:  If you could say something to the mom who just starting on this journey of special needs, what would you say?
 
Brittanie:  To anyone who is beginning this journey, I say listen to your "mommy-sense". Only you are with your child every day. Only you know how they are acting. And, don't fell bad about being frustrated. Just do all you can do to help your child. I'm also a big believer in prayer. I think God takes interest in our lives and can come to our aid when we are seeking help. I would also say research, research, research. Talk to people. The more information you have, the better equipped you are to explain things and remedy them. And, keep a journal - this helps document medical episodes.

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Brittanie:  Not every doctor is going to have the right answers. Not every doctor CAN be an expert in your case. Sometimes you have to go through MANY doctors, and some heartache, in order to find the "right" one. Also, I think empathy is the best policy. Having a child with special needs, especially needs that aren't always visible to others, has opened my eyes of empathy - to know that many people have struggles you cannot see, or they may not let you see. Most everyone is just trying their best to get by, so it suits us to give each person a little more love.


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Brittanie, thank you so much for sharing your journey and your sweet Peter with us today.  What a roller coaster!  I think most of us just ache thinking about what that first year of Peter's life must have been like--for you and for him.  And It seems unreal that it has taken you 3+ years to get some answers, but unfortunately I think this can often be the case.  It can be so, so difficult trying to find answers and coming up short time and time again.  But I have to say, I appreciate the shout out you give to Dr's in your final answer.  We really have to remember that there is no way every Dr. can know about every condition in the world--there are literally thousands upon thousands of rare conditions!--and I think most of them are doing the best they can, just like the rest of us.  I appreciate you sharing this part of your journey because I know there is another family out there experiencing something similar--knowing something is wrong, but not knowing what or where to find the answers.  Hopefully your spotlight can be a support and ray of hope to someone out there.   Thanks again Brittanie--so many words of wisdom above.  Hugs to you and your sweet family!  

You guys, I just want to say thank you for all the love and support you send my way each week, and especially for the Special Needs Spotlight.  It's only been going this long because of you--so thank you.  As always if you or someone you know would like to participate email me at thislittlemiggy at gmail dot com.  

Have a radical weekend.  

1 comment:

  1. How stressful! So glad that this gorgeous family ow has a plan, thanks for sharing x

    ReplyDelete