I am sitting here and looking back over baby pictures and the 4 years that I have been blessed with my sweet boy!! I remember the day that I took the test for him and it came positive.. I was scared out of my mind on how I was going to love another child. I was very happy despite a few people in my life telling me I was messing up ( I was 20 at the time) . My hubs ( at the time fiance) and I where going through a rough time during the time so the pregnancy was already going rough because of the emotions... I fought through weeks of bleeding, being admitted into the hospital and the constant pang of contractions managed to make it to 36 weeks.. Our son was born right before the shift change and all was wonderful... Breastfeeding was hard and I was not able to nurse on one breast.. I was left again alone with a newborn while the hubs went to work out of city.. Alone I went on .. One day his face broke out in a rash and thus began the path we have been on for the past three and a half years. I have been in a constant tizzy of doctors appointments and constant stress load that would make anyone else loose their marbles.. I would wake up to bloody sheet and a screaming baby most nights.. I feel sick to my stomach just thinking of his screams.. After months of begging we finally got specialists.. But again it was creams and steroids and plenty of heartbreak when that didn't work and his face would again turn to a bloody and raw nightmare.. As we neared his first birthday it seemed to get better... then one big flare knocked him back down .. Again his skin inflamed and bleeding.. My prayer however came true when his eczema went away just enough to take his birthday pictures!! We tried to feed him cake.. and as usual he didnt eat much.. Weeks later I am holding him and rocking him.. He starts to cry and then turns blue... seizing on my lap.. I scream out for him to come back as his lips get darker and darker... I finally get him to breath... We rush him to the hospital.. I know i have told this story a million times.. each time I can feel my heart do the same thing it did when he first had the attack... his body was giving up.. my son was dying.. my heart.. my soul was sick for him.. Looking back i should have knew.. I should have taken him to a different doctor.. Maybe he would not have suffered soo much.. We get past this phase and move into a year of bliss.. Nothing and I mean nothing happens... Infections slowed down and life was normal.... I got my wish on his second birthday.. just for one day of perfect skin... I was able to hug him without him crying and kiss his sweet cheeks without the fear of infection or making him hurt... We went through that year like nothing had happened.. UNTIL..... His third birthday brought more breakouts and Hives , confused we entered through another phase of complete Hell... It wasn't until this year ( 2013) that what was happening and what had been happening came to light... We finally got him tested for food allergies... and have a new battle since he was diagnosed.. Lots of happy moments clouded by sadness.. hard work and sleepless nights...
Although not everything was Bad... there is moments ( and pictures ) of good times and moments of bliss... Moments that can make the darkest ones seem like nothing.. The videos of him laughing even though his face must have hurt badly... The feeling of being alone and another mother with a child with the same condition writes you and tells you how strong you are and how strong he is and that this too shall pass.. The moments that you watch him blow out his candles , more each year and know that you are going to do everything to protect them.. I know one day ill be looking at a man instead of a little boy... Ill hold a hand bigger than my own....
Most times I wish I would have wrote a letter on the day of their birthdays and present them to them when they become parents.. But ill start now..
My dearest Kason,
My sweet boy know that I love you so very much.. As I am sitting here I think of how precious you are to me.. You know how strong you are? I am amazed by you little boy.. I am amazed by the big boy you are becoming.. I am so blessed to be your mommy!! God put you right where you belong.. Your father and I are so thankful for every precious moment we have had with you.. As you turn 4 I am going to cry a little.. Because you are not going to be little anymore.. You have left the baby stage and moved into boyhood. You will be able to go to school next year.. and well that is really scary because it seems like not so long ago they handed me a bread loaf sized bundle with a tiny baby in it.. Now my wish for you is that you will grow big and strong.. That you love with no price and that you Know that not just me and daddy love you , but your sister and little brother as well as the Great I Am.. your heavenly Father above!!! He loves you more than you know!!! I pray that you will know his love in the darkest hours... Keep your head up and know that I am always a step behind you... Now while you nap ill watch more videos of you and feel even more blessed becuase when you wake up I know ill have a dozen more to add soon!!!
Love you with all of my heart
Mommy
Showing posts with label food allergies. Show all posts
Showing posts with label food allergies. Show all posts
Wednesday, July 17, 2013
Thursday, May 30, 2013
When seconds count
I know I have been writing a lot about my son as of late. His health issues have consumed me to the nitty gritty and even the blog had taken backseat since his diagnosis. I have been so busy with doctors appointments and life that I am missing some of the neat things that Abilene has to share. I am also about to move again and try to start off a new. I will explain all that later in another post. Maybe I need to name it " finally ( hopefully) getting it together." I have been in a sea of new medical terms and tests and I am lost.. honestly I am lost. I wanted to share something with you, though it has only been a week ago.. the feelings are still soo raw and I hope to pass this on to other people. I hope that no one else will have to deal with it.
I tucked my son into bed a week ago thinking that it would be another typical week night. The routine has been the same for the last few weeks. It has been : bath, brush teeth, bed story, kisses and hugs and prayers and then sleep.. He fell asleep pretty fast as he normally does, his little blue eyes finally closing after a long day of fun. I go outside for a bit on my porch and chat with the neighbors ( which live right across from me) and then manage to get tired enough to go to bed. Since we had bad weather I was watching a little bit of the weather channel and enjoying another quite night. I fall asleep and drift into a deep sleep. Suddenly I hear screaming and what sounds like vomiting. I rush out of my bed to meet my son in the hallway. I notice he is wheezing and is visibly having breathing issues, even in the shadows his skin looked pale. I put his nebulizer machine together and start to give him a breathing treatment. I notice that there are blotches on his skin and turn on the light. I noticed the hives and then noticed his lip color. He was having an allergic reaction, unfortunately not caught in time to give meds. I called his father to tell him to get ready to leave and meet us at the hospital. I called 911 and prepared to give him his epi pen.. As I was on the phone the fear washed over me, my son could die!! What did he eat, what could he have eaten here, the house is cleaned out of unsafe foods. I start to sob and sing to him to make him calm.. I noticed that the symptoms where not getting any better and administer it . I hear the click and then hear a loud sob.. I again started to sob and held my son still while the medicine injected. After the dose was given I see the color start to come back.. He is coming back to me.. By that time I am off the phone and the sirens are coming closer.. Good they will take him where he needs to go.. I put his nebulizer mask back on just to give him air and I pick him up and rock him .. I try to gather myself and start to sing to him... you are my sunshine.. I smile at him and tell him that he is the strongest little boy i have ever known.. All the while my head is dancing with thoughts.. I allow the medics to take him and transport to the hospital, i stayed back home with the other two.. all the while i am on the phone with his father. After awhile his dad gets off the phone and i am left alone... in silence.. I go to his room to make his bed and ready it for him to get home.. praying that they will release him..
While all this took me an hour to write it took 5 short minutes and 1 Epi pen.. in that short amount of time, my son could have died... He could have taken his last breath..
What most people do not know is how fast that this happens.. Seconds count, not minutes.. please know that this can be any child... that a shell from a peanut or a handshake after and ice cream could be deadly..
I tucked my son into bed a week ago thinking that it would be another typical week night. The routine has been the same for the last few weeks. It has been : bath, brush teeth, bed story, kisses and hugs and prayers and then sleep.. He fell asleep pretty fast as he normally does, his little blue eyes finally closing after a long day of fun. I go outside for a bit on my porch and chat with the neighbors ( which live right across from me) and then manage to get tired enough to go to bed. Since we had bad weather I was watching a little bit of the weather channel and enjoying another quite night. I fall asleep and drift into a deep sleep. Suddenly I hear screaming and what sounds like vomiting. I rush out of my bed to meet my son in the hallway. I notice he is wheezing and is visibly having breathing issues, even in the shadows his skin looked pale. I put his nebulizer machine together and start to give him a breathing treatment. I notice that there are blotches on his skin and turn on the light. I noticed the hives and then noticed his lip color. He was having an allergic reaction, unfortunately not caught in time to give meds. I called his father to tell him to get ready to leave and meet us at the hospital. I called 911 and prepared to give him his epi pen.. As I was on the phone the fear washed over me, my son could die!! What did he eat, what could he have eaten here, the house is cleaned out of unsafe foods. I start to sob and sing to him to make him calm.. I noticed that the symptoms where not getting any better and administer it . I hear the click and then hear a loud sob.. I again started to sob and held my son still while the medicine injected. After the dose was given I see the color start to come back.. He is coming back to me.. By that time I am off the phone and the sirens are coming closer.. Good they will take him where he needs to go.. I put his nebulizer mask back on just to give him air and I pick him up and rock him .. I try to gather myself and start to sing to him... you are my sunshine.. I smile at him and tell him that he is the strongest little boy i have ever known.. All the while my head is dancing with thoughts.. I allow the medics to take him and transport to the hospital, i stayed back home with the other two.. all the while i am on the phone with his father. After awhile his dad gets off the phone and i am left alone... in silence.. I go to his room to make his bed and ready it for him to get home.. praying that they will release him..
While all this took me an hour to write it took 5 short minutes and 1 Epi pen.. in that short amount of time, my son could have died... He could have taken his last breath..
What most people do not know is how fast that this happens.. Seconds count, not minutes.. please know that this can be any child... that a shell from a peanut or a handshake after and ice cream could be deadly..
Friday, May 10, 2013
Being a mom of a food allergy Child : Food Allergy Awareness Week
I had always thought nothing of my Kids eating a peanut butter cracker on the playground or carrying around a cone of ice cream at the park until my son was diagnosed with food allergies. I had always thought that people who talked about food allergies where over worried and over concerned parents not wanting to feed their kids a certain food. Now that I am a mom of a newly diagnosed child with food allergies , and it is down right scary!! I have now become even more paranoid of the places I go daily and the things I touch. I have never thought of the impact would be so hard!! At first it was relief after years of wondering what was wrong with my child, why he would break out in huge rashes and have multiple asthma attacks. I spent hours in a ER, been through two surgeries and two hospital stays. Now I have nightmares of my son eating a peanut and having to give him his Epi-Pen and the look on his face from the last attack he had ( he was scared) .. I have been back and forth in my mind of all the changes I am going to have to make for him. I know it seems like having a child with food allergies ( and other health issues) would be annoying, tiring and stressful, But I have learned it is much more than that.
1. Its waking up in the middle of the night from your baby crying because he cant breath well. As you sit there singing his favorite lullaby holding his Neb mask on his face you think of the last time you cuddled and realized it was weeks ago
2. Going to the park and watching him have freedom away from the house ( all the while you are praying there is nothing on the slide that will make him sick)
3. Going to a doctors office and making wonderful friends with the staff and them telling you are a good parent ( how can I be, my child is suffering and there is nothing i can do)
4. Having the talk over and over about what your child is allergic to until they can tell you what they are allergic to. ( its even harder with a slightly non verbal child)
5. Going to do blood draws and allowing them to have that big sucker he saw in the hospital window ( even though you dont want them to have all that sugar)
I am pleading with the parents with children that do not have food allergies to consider us. We may be the mom that yells louder at a PTA meeting, or the mom who brings the weird snacks for her child at soccer practice. Please remember our children because what wont harm your child , can kill ours. I ask for family members not to downplay my concern and feed my child something that could harm them, I have rules for a reason. I ask for the media to pick these stories up and make it as popular as cancer stories or world news.. Our children deserve the attention and all the help we can get! It would make our nights easier , maybe we can sleep. It would make our kids relax and be able to enjoy going out to eat somewhere or go to the park and play freely.
1. Its waking up in the middle of the night from your baby crying because he cant breath well. As you sit there singing his favorite lullaby holding his Neb mask on his face you think of the last time you cuddled and realized it was weeks ago
2. Going to the park and watching him have freedom away from the house ( all the while you are praying there is nothing on the slide that will make him sick)
3. Going to a doctors office and making wonderful friends with the staff and them telling you are a good parent ( how can I be, my child is suffering and there is nothing i can do)
4. Having the talk over and over about what your child is allergic to until they can tell you what they are allergic to. ( its even harder with a slightly non verbal child)
5. Going to do blood draws and allowing them to have that big sucker he saw in the hospital window ( even though you dont want them to have all that sugar)
I am pleading with the parents with children that do not have food allergies to consider us. We may be the mom that yells louder at a PTA meeting, or the mom who brings the weird snacks for her child at soccer practice. Please remember our children because what wont harm your child , can kill ours. I ask for family members not to downplay my concern and feed my child something that could harm them, I have rules for a reason. I ask for the media to pick these stories up and make it as popular as cancer stories or world news.. Our children deserve the attention and all the help we can get! It would make our nights easier , maybe we can sleep. It would make our kids relax and be able to enjoy going out to eat somewhere or go to the park and play freely.
Tuesday, April 30, 2013
Food allergies Part 3: The Allergist Appointment
Well as usual I am late blogging and getting my act together for the blog! I am super happy that we made it to see the doctor and was just happy to get it over with. I am glad that we have gotten this far, but like usual.. we are far from being done!!!
Thursday we all packed up and went to the Allergist. I was super ready to have answers and to move forward. When we finally made it I looked inside and noticed there must of been over a dozen people in that building!! I was concerned that this appointment would take forever and make me and the kids home for dinner and bed. We checked in and like always there is at least 30 pages of paperwork and the less than thrilled receptionist. As I was filling out the paperwork Kason was bouncing all over the place and laughing. It took them about 30 minutes to call us back to the closet like room. The nurse talked to me and asked me why we where here. I showed her the pictures and told her what we had been through for our son. She told me that most mothers that come through have storied similar to that and that my son was one in many children with severe skin and food allergies , not to leave out the nagging asthma we have already had to deal with. We chatted and then told me he would be in shortly. I sat there looking around the room and eyed a few of the doctors told, many in which i was familiar with because it was used on me at one point. When the doctor entered the room we talked for a minute and then he cut me off ( rudely actually) and told me that we would have to test again, why didn't we have an allergist before and that I needed to go out and buy a steam cleaner, bed covers and other hypoallergenic stuff to go into my house. I left the room to be shoved into another , handed material and was shoved out that door.. Nothing on diet, nothing on how to manage his symptoms, just another blood test and a flyer on
Honestly while I would have loved to learn a lot more with my sons allergies, I was given very little. Sickened with lack of help I needed. So now I have to wait till the blood test comes back again ( 2 week wait) and then we go back as he deems necessary and do oral challenges.. While I am happy we went, I am not happy I was treated the way I was!!!
Thursday we all packed up and went to the Allergist. I was super ready to have answers and to move forward. When we finally made it I looked inside and noticed there must of been over a dozen people in that building!! I was concerned that this appointment would take forever and make me and the kids home for dinner and bed. We checked in and like always there is at least 30 pages of paperwork and the less than thrilled receptionist. As I was filling out the paperwork Kason was bouncing all over the place and laughing. It took them about 30 minutes to call us back to the closet like room. The nurse talked to me and asked me why we where here. I showed her the pictures and told her what we had been through for our son. She told me that most mothers that come through have storied similar to that and that my son was one in many children with severe skin and food allergies , not to leave out the nagging asthma we have already had to deal with. We chatted and then told me he would be in shortly. I sat there looking around the room and eyed a few of the doctors told, many in which i was familiar with because it was used on me at one point. When the doctor entered the room we talked for a minute and then he cut me off ( rudely actually) and told me that we would have to test again, why didn't we have an allergist before and that I needed to go out and buy a steam cleaner, bed covers and other hypoallergenic stuff to go into my house. I left the room to be shoved into another , handed material and was shoved out that door.. Nothing on diet, nothing on how to manage his symptoms, just another blood test and a flyer on
Honestly while I would have loved to learn a lot more with my sons allergies, I was given very little. Sickened with lack of help I needed. So now I have to wait till the blood test comes back again ( 2 week wait) and then we go back as he deems necessary and do oral challenges.. While I am happy we went, I am not happy I was treated the way I was!!!
Thursday, April 11, 2013
Food allergies part 2: Path to wellness
It's been a few weeks since my first post about our path to finding our about Kasons food allergies and how we are going to treat them.. We figured that Kason had several food allergies after getting several bouts of hives and eczema when he was a baby. Why they didn't test him till now makes me wonder why ? Why would they just treat the after effect of a breakout instead of investigate it. We left most of Kason's medical records that we copied with the speech therapist and I looked through them as well.. I noticed after reading through them that between the ages of 6 months to a year , Kason's health took a turn.. He didn't gain weight and he barely gained any height.. Why didn't they notice that? Why did we have to go through multiple infections and breakouts without further testing? Now I feel like I have been cheated out of what could have been a normal babyhood for Kason... He could have had clear skin and been able to smile when his mommy and daddy played and it would not have hurt. Now looking back his doctors never tried... They just gave him medicine to comfort him..
We finally did get into the doctors office and scheduled with an allergist and made sure that we had the options opened for us as we have never had them opened before. At first his pediatrician was talking immunotherapy. The thought of weakening my son's immune system made me mad. Why would I weaken what is protecting my son from getting another infection. The second option was even worse ( in my opinion) . We looked into allergy doctors and found one that would suit him to tailor to his needs.. While I am exited we are getting this far, I am also skeptical.. What if he never grows out of theses allergies? What will we have to do as far as diet? What is the next step for him? I spent the better part of three weeks after the original RAST. Test to figure out what we can do as far as food... I am already shocked with things I didn't know.. I was shocked to know there was so much out there that is marked hypo allergenic and really it isnt.
Well here goes to the two week wait!! I am ready to get some answers!!
We finally did get into the doctors office and scheduled with an allergist and made sure that we had the options opened for us as we have never had them opened before. At first his pediatrician was talking immunotherapy. The thought of weakening my son's immune system made me mad. Why would I weaken what is protecting my son from getting another infection. The second option was even worse ( in my opinion) . We looked into allergy doctors and found one that would suit him to tailor to his needs.. While I am exited we are getting this far, I am also skeptical.. What if he never grows out of theses allergies? What will we have to do as far as diet? What is the next step for him? I spent the better part of three weeks after the original RAST. Test to figure out what we can do as far as food... I am already shocked with things I didn't know.. I was shocked to know there was so much out there that is marked hypo allergenic and really it isnt.
Well here goes to the two week wait!! I am ready to get some answers!!
Tuesday, April 2, 2013
Food Allergies Suck : Part 1
A long time ago we started the road to figuring out what was the matter with my sweet boy. We would wake up and have to clean up bloody sheets from where he itched himself to the point his skin was raw. Well fast forward till now after all the problems , we finally have an answer. Little did I know that we would be faced with food allergies. I was always aware that his face would flare with certain foods, but never did i once think he had food allergies until a few months ago when a trip out somewhere became less than fun. I had fed Lil man some cookies from the mall. We decided shortly after leaving the mall that we would go out to dinner. After being there for a bit Lil man complained that his stomach hurting and that he felt like he was going to throw up. I took him ti the bathroom only for him to burp or say he felt better. I returned to the table and told the hubs we needed to leave. I packed up the remaining parts of dinner and started to walk to the truck. We had only gotten three steps out the door until i had to help Lil man throw up all over the place. His face was red and his cheeks had hives all over them. I knew then it was , and talked to the doctor. He ordered a test called a RAST test . Although he didn't order the Food panel our ENT was curious why he still had a lot of trouble after having his tonsils and adenoids taken out. Before we got the test results we had another episode which was the end of the stick for me. Kason ( lil man) ate peanuts out at the restaurant. We again started to notice the hives and the cough. It wasn't until he told me his tummy hurt that I realized that it was time to go. We got to the truck and his then clear cough sounded more raspy . As I sat there with him i noticed more and more that he needed to be given his inhaler and some Benadryl . We sat there with the cold air blasting and his mask over his face so that he could get as many puffs as possible. After a few minute his face started to clear and he started to able to breath. He became calm and started to smile and play like he did before. I was still in shock with what happened. I noticed however that he had the runs for a few days and broke out on his bottom with the same hives and had the poops to go with it. We discussed this and decided on a full panel RAST. We received the results a week later and went to an appointment to discuss it. The nurse came in and told us that she was glad we where there and there was a lot to talk over. She started off by telling me that Kason is VERY allergic to tree nuts and Peanuts and that we need to stay away from them and then asked for me to go pick up his Epi pen on the way out. She also asked me to please be careful as well with pork and Soy. As i sat there my heart began to race because I was thinking about all the times that we had given Kason peanut butter or cookies with walnuts and pecans. It could have killed him!! Upon leaving i went to the pharmacy inside the doctors building and bought him a sucker ( just a sugar cane sucker) and sat and read through all the results. It amazed me how our bodies protect us from something that can hurt us and how a allergic reaction is only something that is protecting us from something harmful!! Now we are finally able to begin the steps to getting him well!! It has been too long!!
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