I am new at this. My son, Reece, was diagnosed with EE (Eosinophilic Esophagitis) last March. Since then, whenever I get a spare moment, I spend time reading articles and blogs from other mothers, about the subject. I have found it both helpful, and therapeutic. I thought I could try to "pay it forward" and hopefully do the same for others in the same boat.
It has been, and still is a journey. I can say that in the last ten months, we have had many ups and downs. We have tried to remain very positive and try to keep Reece's life as "normal" as possible. He is gaining weight and is thriving. One of the biggest challenges has been that Reece is a twin. His twin sister, Avery, does not have EE or any other type of food allergies. He is a trooper. He knows that he is "allergic" to many foods and he deals with it. He goes to birthday parties, restaurants, and play dates with his own lunch box. He uses paper plates and plastic utensils when out. He has his own drawer of silverware at our house and his own cabinet of plates, bowls, and cooking utensils so as to not cross-contaminate.
Reece and Avery were born at 32 weeks. They were two months premature. Reece was hospitalized for only 9 days. He did awesome in the NICU. He received a combination of pumped breast milk and formula for his first 6 weeks and then, just formula. At about 3 months, we decided to try some other types of formula due to what we thought was reflux. We tried them all...soy, the special one for gassy babies, etc. Nothing seemed to help his "reflux". When he started on solids, he was able to hold his food down a bit better. He always had a terrible gag reflux, and vomited more than most kids. By the time he turned, two, my husband and I began to worry and questioned our pediatrician every time we could. We were told that due to him being premature, that he should get past this stage. A family friend suggested that we bring him to see a therapist who worked on feeding therapy, but that did not seem to help either. By the age of 2 1/2, and after a month of vomiting everyday and him complaining that his tummy hurt, we had had enough. I called up the pediatrician (whom I really love) and asked her to send us to a specialist. We went to one in Milwaukee, and now we are here today....with Reece at 3 1/2, and with EE/EGE. Reece is on a limited diet. He is basically able to eat fruits, vegetables, rice, potatoes, corn, and beef. We go to Milwaukee Children's Hospital every 3 months for Reece to get an endoscopy so we can test his food trials and the doctors can see how he appears internally compared to what we are seeing daily.
To our surprise, Reece's last scope was not terrible, but still not great. We were preparing for it to be great because he wasn't showing any signs of stomach discomfort and hadn't been gagging or vomiting. He is now taking the Neocate Jr. supplement or the EO28 Splash. I mix it into a smoothie at least every other day. I am not sure that he is aware that it is a "special" smoothie for him because on those days, Avery requests one as well and I make her a separate smoothie without the supplement. We have already trialled soy, wheat, and chicken and he failed all three. We are now trialling turkey. He appears to be fine with that. Reece takes Flovent, Singulair and is also now taking Zyrtec daily. From other blogs, it seems that asthma and environmental allergies are very common among EE patients.
We take it day by day. Reece is not defined by his EE. He is a happy child. He loves sports. He plays hockey and plays and fights with his sister like a normal toddler.
I have heard the saying that "A mother is only as happy as her least happiest child." I guess I am very lucky that Reece is such a happy-go-lucky kid!
My first entry:
Friday, December 9, 2011
Sorry for the delay...
Sorry for the delay. I guess we have been busy. A lot has happened since my last blog.
First off, school was more than accommodating. They allowed my husband and I to meet with the teachers before the Open House. They were wonderful. My anxiety was pushed to the side (at least with me doing my part) That was August. It is December now and thus far, Reece is having an amazing Pre-K year at school!
Since August, we have switched doctors. After the last time I blogged, the results for that scope were EMAILED to me by the nurse. They were not good results and it was not the way that Seth and I had thought we should have been informed. That, being the icing on the cake, led us to take Reece for another opinion.
This new doctor began Reece on the Budesinide slurry. We were very reluctant to start him on the steroid but it seemed that our only two options were the steroid or an elemental diet. For our family, trying the steroid seemed to be the best choice. Reece did the steroid for 6 weeks and then was scoped at the new hospital.
Reece is usually awesome with the scopes. He amazes me. They take him back. He goes under smoothly and afterwards, eats three or so popsicles and is ready to go. They always tell us he should take it easy when we get home and we usually laugh because by the time we get home, he is back to the crazy boy he always is!
This time, it was totally different. It was a nightmare. They announced in front of Reece that a parent can go back with him. He would have been fine without one of us but knowing that once of us could come, he of course requested me. (I much would have rather my husband go but obviously would never had rejected his request!) Seeing him go under was terrible. His eyes rolled back and he immediately went limp. (In a side-note...it was terrible for ME, not him. It is just an image that no parent should have to see of their child) Afterwards, Reece had an extremely difficult time waking up. He couldn't catch his breath, was foaming at the mouth, and coughing like crazy. It took him ten times longer to come to than ever before. Reece couldn't eat for the rest of the day, threw up at least three times and was nauseous. He had to stay home from school the following day too. We think either they over-anesthetized him or used a different anesthesia than in the past. We are definitely going to need to look into what the difference was at the old hospital vs. here!
The doctors initially gave us a terrible scenario after doing the scope. The told us that we needed to wait for the biopsies, of course, but that due to his ulcers in his duodenum, and how they looked, they were most likely going to recommend an elemental diet.
When Seth and I heard that, we were deflated. I went into panic mode. I contacted people to find a therapist to try to help us get through Reece being on only formula while his twin eats every meal and in between them! I was devastated and crazed. I basically walked around like a zombie for the next three days. I couldn't imagine how we were going to do this. I knew if we needed to, we would but I was scared to death.
Seth stayed home on the day that we were going to find out the biopsy results and when the Dr. called us with amazing news (quite the opposite) we were elated! He had ZERO eosinophils in his esophagus and in his stomach. The Budesinide worked!!! NO ELEMENTAL DIET!!! The ulcers that they saw were superficial. They want to keep an eye on them but are not terribly worried.
We started Reece on the soy trial and have a scope planned for 6 weeks from now. Fingers are crossed again. Soy opens up a lot of doors and he seems to be okay so far with it!
First off, school was more than accommodating. They allowed my husband and I to meet with the teachers before the Open House. They were wonderful. My anxiety was pushed to the side (at least with me doing my part) That was August. It is December now and thus far, Reece is having an amazing Pre-K year at school!
Since August, we have switched doctors. After the last time I blogged, the results for that scope were EMAILED to me by the nurse. They were not good results and it was not the way that Seth and I had thought we should have been informed. That, being the icing on the cake, led us to take Reece for another opinion.
This new doctor began Reece on the Budesinide slurry. We were very reluctant to start him on the steroid but it seemed that our only two options were the steroid or an elemental diet. For our family, trying the steroid seemed to be the best choice. Reece did the steroid for 6 weeks and then was scoped at the new hospital.
Reece is usually awesome with the scopes. He amazes me. They take him back. He goes under smoothly and afterwards, eats three or so popsicles and is ready to go. They always tell us he should take it easy when we get home and we usually laugh because by the time we get home, he is back to the crazy boy he always is!
This time, it was totally different. It was a nightmare. They announced in front of Reece that a parent can go back with him. He would have been fine without one of us but knowing that once of us could come, he of course requested me. (I much would have rather my husband go but obviously would never had rejected his request!) Seeing him go under was terrible. His eyes rolled back and he immediately went limp. (In a side-note...it was terrible for ME, not him. It is just an image that no parent should have to see of their child) Afterwards, Reece had an extremely difficult time waking up. He couldn't catch his breath, was foaming at the mouth, and coughing like crazy. It took him ten times longer to come to than ever before. Reece couldn't eat for the rest of the day, threw up at least three times and was nauseous. He had to stay home from school the following day too. We think either they over-anesthetized him or used a different anesthesia than in the past. We are definitely going to need to look into what the difference was at the old hospital vs. here!
The doctors initially gave us a terrible scenario after doing the scope. The told us that we needed to wait for the biopsies, of course, but that due to his ulcers in his duodenum, and how they looked, they were most likely going to recommend an elemental diet.
When Seth and I heard that, we were deflated. I went into panic mode. I contacted people to find a therapist to try to help us get through Reece being on only formula while his twin eats every meal and in between them! I was devastated and crazed. I basically walked around like a zombie for the next three days. I couldn't imagine how we were going to do this. I knew if we needed to, we would but I was scared to death.
Seth stayed home on the day that we were going to find out the biopsy results and when the Dr. called us with amazing news (quite the opposite) we were elated! He had ZERO eosinophils in his esophagus and in his stomach. The Budesinide worked!!! NO ELEMENTAL DIET!!! The ulcers that they saw were superficial. They want to keep an eye on them but are not terribly worried.
We started Reece on the soy trial and have a scope planned for 6 weeks from now. Fingers are crossed again. Soy opens up a lot of doors and he seems to be okay so far with it!
Thursday, August 11, 2011
UPDATE
Update:
Reece had a scope today. He is amazing! A rock star, to say the least.
The results: They looked good from the pictures, and will confirm from biopsy
results in a week or so.
This means that eggs were not good, and it affected his stomach - not
conventional, as food is usually the catalyst for irritation in the
esophagus.
So Reece continues to buck the conventional diagnoses, but in a good
way. His weight continues to increase, and the levels of albumin
(protein) are hopefully normal. (they did a blood test)
Once we receive the biopsy results, if they are in line with what the
doctor has predicted, we are going to re-introduce soy into his diet.
We tried this about a year ago, and pulled it based on our clinical
diagnoses. This will hopefully open a lot more options.
On a side note, they did a rectal exam because Reece had been
complaining of stomach aches, and was producing giant bowel movements.
The doctor recommend we do a Miralax cleanse to clear him up. The
doctor thinks this is what has been causing his stomach aches and is
mutually exclusive from his disease.
We are happy with these results and appreciate everyone's love for
us and Reece!
results in a week or so.
This means that eggs were not good, and it affected his stomach - not
conventional, as food is usually the catalyst for irritation in the
esophagus.
So Reece continues to buck the conventional diagnoses, but in a good
way. His weight continues to increase, and the levels of albumin
(protein) are hopefully normal. (they did a blood test)
Once we receive the biopsy results, if they are in line with what the
doctor has predicted, we are going to re-introduce soy into his diet.
We tried this about a year ago, and pulled it based on our clinical
diagnoses. This will hopefully open a lot more options.
On a side note, they did a rectal exam because Reece had been
complaining of stomach aches, and was producing giant bowel movements.
The doctor recommend we do a Miralax cleanse to clear him up. The
doctor thinks this is what has been causing his stomach aches and is
mutually exclusive from his disease.
We are happy with these results and appreciate everyone's love for
us and Reece!
Update about school:
I waited a whole week to calm down and I am going in tomorrow morning at 9:00 a.m. to meet with the director. A friend of mine suggested asking to meet with all 6 options so I think I will offer that suggestion. I will keep everyone posted!!!
Wednesday, August 3, 2011
The politics that schools bring and on top of that...EE
I know it has been a long time since I last blogged. It isn't that I haven't thought about the fact that Reece has EE. I think about it every second, every day. It isn't that I haven't had the time. I have. luckily, had some time to myself this summer.
It is just that I needed a little break. I kind of got a little overwhelmed with the updating and needed to keep my complaining, or whatever you want to call this, to myself! I guess, now it is time to complain again!
Thank goodness Reece loves camp and school. He loves play dates. He is very independent. I trust him as much as I could trust any 4 year old to be smart about eating his safe foods. For example, I found wonderful allergen-free cookies that I packed in his lunch a couple months ago and thought it would be fun to surprise him. When he got in the car to come home from school and I asked him about the surprise, he told me he brought them home because he didn't know if he could eat them or not!!! HE IS 4 YEARS OLD!!! It made me so proud and broke my heart at the same time.
At the same time, I find it necessary to continue to be an advocate for Reece when it comes time for him to be in any new environments or situations. When he goes on play dates, I always pack a bag of snacks and a cup for him to use if he gets thirsty and wants water. I also make sure (obvious to me but I guess not to all moms) to educate the adult that is in charge about Reece's health. Before each school year or camp begins, I make it a point to sit down with Reece's teachers or counselors and explain EE and how it affects Reece daily, at home, during meals, and at school. I also always need to supply my own treats or snacks for Reece.
One thing that was very difficult for me to accept was that as long as I educate them, what happens when I am not there, is out of my control. I never know for sure that the grown-up in charge doesn't touch something Reece is allergic to before touching his food. I can only hope that when I explain things, they take it seriously. I need to live and let Reece live as normal of a life as possible. I know I can worry all the time but I have begun to let go and realize that what happens when I am not around is out of my control!
Reece begins his Pre-K year in three weeks. He has been attending the same preschool for camp and school for the past three years now and was diagnosed with EE during his first year there. Before each class change since he was diagnosed, I have sent a similar email to the director explaining that I would like to meet with the teacher and discuss Reece's health. It has always been fine. We just got a mailing about the beginning of the school year and that they are not posting class lists until Open House this year. Open House is the night before school begins. I figured that it would be better to be proactive and email the director that I would like to meet with his teachers sooner, rather than later to explain things. That way, they could digest everything and ask me questions or voice concerns if they need to. As a teacher myself, I would think that they would want to know about Reece and be able to prepare themselves the best they can and before he walks in the door?! I didn't believe that I was asking anything that any mother of a child with special health needs would not have a right to ask. I got an email back saying that they haven't created the class lists and that I will have to wait until Open House, just like everyone else. Obviously, I cannot be an exception to their "post at Open House" rule. Thus, I think I have my first mommy advocacy battle on my hands...
TO BE CONTINUED!!!!!!
It is just that I needed a little break. I kind of got a little overwhelmed with the updating and needed to keep my complaining, or whatever you want to call this, to myself! I guess, now it is time to complain again!
Thank goodness Reece loves camp and school. He loves play dates. He is very independent. I trust him as much as I could trust any 4 year old to be smart about eating his safe foods. For example, I found wonderful allergen-free cookies that I packed in his lunch a couple months ago and thought it would be fun to surprise him. When he got in the car to come home from school and I asked him about the surprise, he told me he brought them home because he didn't know if he could eat them or not!!! HE IS 4 YEARS OLD!!! It made me so proud and broke my heart at the same time.
At the same time, I find it necessary to continue to be an advocate for Reece when it comes time for him to be in any new environments or situations. When he goes on play dates, I always pack a bag of snacks and a cup for him to use if he gets thirsty and wants water. I also make sure (obvious to me but I guess not to all moms) to educate the adult that is in charge about Reece's health. Before each school year or camp begins, I make it a point to sit down with Reece's teachers or counselors and explain EE and how it affects Reece daily, at home, during meals, and at school. I also always need to supply my own treats or snacks for Reece.
One thing that was very difficult for me to accept was that as long as I educate them, what happens when I am not there, is out of my control. I never know for sure that the grown-up in charge doesn't touch something Reece is allergic to before touching his food. I can only hope that when I explain things, they take it seriously. I need to live and let Reece live as normal of a life as possible. I know I can worry all the time but I have begun to let go and realize that what happens when I am not around is out of my control!
Reece begins his Pre-K year in three weeks. He has been attending the same preschool for camp and school for the past three years now and was diagnosed with EE during his first year there. Before each class change since he was diagnosed, I have sent a similar email to the director explaining that I would like to meet with the teacher and discuss Reece's health. It has always been fine. We just got a mailing about the beginning of the school year and that they are not posting class lists until Open House this year. Open House is the night before school begins. I figured that it would be better to be proactive and email the director that I would like to meet with his teachers sooner, rather than later to explain things. That way, they could digest everything and ask me questions or voice concerns if they need to. As a teacher myself, I would think that they would want to know about Reece and be able to prepare themselves the best they can and before he walks in the door?! I didn't believe that I was asking anything that any mother of a child with special health needs would not have a right to ask. I got an email back saying that they haven't created the class lists and that I will have to wait until Open House, just like everyone else. Obviously, I cannot be an exception to their "post at Open House" rule. Thus, I think I have my first mommy advocacy battle on my hands...
TO BE CONTINUED!!!!!!
Wednesday, July 13, 2011
Thursday, June 16, 2011
A couple pictures from The Cured event...
Reece and other kids with "EE" posing with Rob Elgas from Channel 5.
About to go to the Winner's Circle.
The Winner's Circle!
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