Along the way towards a diagnosis and treatment for out son we have come across many unhelpful medical personnel. Not all, but the majority of people simply don't know what to make of a child that looks healthy but is not. We are a culture that believes that looks are reality. We know better but yet we choose to be ignorant. For our son that has caused a huge delay in diagnosis.
Alton was born 10 1/2 pounds and 23" tall. That is a big baby. From the start he was "that huge baby" to the doctors. When we started having problems with red spots appearing on him after feedings we brought it up to the doctors. It was ignored because he was just so healthy looking. Never mind that he was too large at birth so he had a broken clavicle and had been given antibiotics and monitored. I was coerced into supplementing by the night nurse and things started getting henky. Wheezing occurred spots appeared and he became irritable. Really irritable. Being a first time parent I figured that all babies cried and I just needed to learn how to soothe him. When we took him back and forth for appointments he would scream in the car seat. Scream after scream was followed by tears. Tears flowing down the face of a one month old child. It was heart breaking. We mentioned this to the doctors and they said that most babies get used to car seats and not to worry. That in combination with the spots, having to sleep propped up, screaming fits, inability to urinate in the evenings and wheezing made us nervous. We were cautious but things took a turn for the worse at two months. We had thrush. No doubt it was a side effect of the antibiotics we were forced to have for no reason at the hospital. Once the doctors figured it out, after I self-diagnosed and begged to be taken seriously for 3 weeks, they prescribed 2 rounds of antibiotics and anti-fungal creams. That is when the flood gate of problems broke.
The next and most persistent problem developed overnight. A light switch flipped on in our son's body and he developed diarrhea. This continued for months until I removed gluten from my diet. At this point I removed gluten, dairy and soy. I assumed that the gluten intolerance was causing the dairy and soy because of his damaged villi but when his stool got better and the intolerances to soy and dairy got more sensitive I knew we really needed help.
At this point Alton is 3.5 months old and the doctors are ignoring us. Babies can't have Celiac. Babies don't have milk and soy intolerances. This mom really needs a life. I could tell if I had made a dietary mistake because our son would scream bloody murder in his car seat. Every day was a cycle of either mucousy diapers, occasionally bloody, but always diarrhea. When he ate solids it always passed through with no digestion present. We cleared the house and made an overnight leap into eating Paleolithic. It was a little miracle. I felt amazing after the switch and he got a little better. I didn't have to adjust recipes from other books, I could simply cook as directed. I also loved that unlike my vegan and vegetarian cookbooks I had no soy issues. This same time we noticed that Alton was triggering to other foods. Triggering really hard. We took him to the allergist for blood and skin prick tests which all came back negative. His skin would redden get scales, bumps, lesions etc but then go away when the food cleared his body. We were told to see a gastroenterologist for FPIES. Food protein induced enterocolitis syndrome. That was a scary one. Thankfully I had started my food journal and we realized after some trial and error that the same foods didn't always make him sick. We found hidden gluten in some of the foods and successfully re-introduced foods that we had banned on the FPIES diet.
Yet with all this close monitoring I still had problems cropping up left and right. The doctors were useless and we were clearly on our own to sort this out. Every night Alton would be a fight to get down because he was covered in red bumps that hurt. Every night he would have to urinate and couldn't. Every night he would scream in the tub. Every night he scratched his face and head. Every night he had to be held or propped up to stop what we figured out was reflux later. He barely slept. During the day he barely slept. Our poor son had bags under his eyes and was so irritable. In the car he screamed when the light hit him. He would only be held by me and wouldn't let me put him down day or night. It was become a nightmare situation. I was beyond burnt out. Where were the doctors? Off in la-la land. I kept making appointments and bringing him in to be told that he looked fine. Clearly he was a healthy boy. He was off the charts with his skill development so what was I complaining about? Just because a baby can crawl at 4 months or talk at 7 doesn't mean he is well.
We saw our first pediatrician who failed to take us seriously. I had done HOURS of research into childhood food intolerances, Celiac gluten sensitivity and FPIES. He said there was nothing wrong with our son, just look at him. He offered a can of formula to us that was for soy/dairy allergic kids. The top ingredient was soy. Because it was hydrolyzed he figured it would be fine. Apparently he doesn't know how proteins work. The only good thing we got from that meeting was a prescription for acid reflux medicine. He gave it to us as a way to shut us up but it turned out to be helpful. At least there is that.
Plugging away....day by day of what should be such a wonderful time. Day after day of agony. No sleep for any of us, I can barely eat anything without a guilt trip of what if this or that is making him sick. Agony.
Month 8....Alton's whole body-and I mean whole body- covers in red bumps. He is an unhappy boy. I take him to our doctor first thing in the morning and beg for help. He says that he sees that all the time and it is just a virus. It will pass nothing to worry about. Seriously? I thought the wtf would end there...but it didn't. I had admitted that I was having postpartum depression because of feeling so alone with everything. His answer was to call a psychologist into the situation. He then dumped me off to a pediatrician (thank goodness, we had been asking for one for months and they didn't see it as necessary) to deal with.
The psychologist explained to me that life was full of pain and if it wasn't this it would be something else. I just needed to learn how to work little 10 second happy moments into my day. She then went on to tell me how she loves hand lotion and ringing a bell to find calm when her day gets rough. So that is what I needed, hand lotion. Since I can't find the time for a shower most days, hand lotion is kind of out, lady. She dug her hole even deeper when she saw me tending to my child who was in obvious pain.
Dr.Frankenfreud asked me why I picked him up and coddled him.
- I said he was in pain.
She said how do I know?
-I explained.
She said that Alton needed to learn how to deal with his own issues and that I needed to let him. He was getting too much attention and would never be able to deal with his own problems if I coddled him so much.
As if I wasn't already dreaming up a murderous end to this nut job, she continued to accuse me of enjoying my son's pain because it supposedly made me feel more motherly to be able to comfort him. I told her I had places to be. (Run away from the crazy lady!!!!!)
After the utter failure from the doctor I went home and hit the research harder than ever. I stayed up into the dawn hours looking at medical journals. I was up anyway since Alton had to be held and was crying in his sleep because he was in so much discomfort. Heart breaking. I hit on something that gave me goosebumps. I found something that would explain why he was triggering to foods on top of gluten, dairy and soy. HIT. Histamine Intolerance. I scoured the forbidden foods list and cross checked it with my food journal. It was a perfect match. You can read the symptoms here.
8:00 the next day I was the first person to welcome the allergy clinic crew to work. I had so many questions. I described my son's body and what I thought was going on. They looked at the constant failed allergy tests and went back and looked at the fact that each time I had asked for test to be done for bananas, mushrooms, tomatoes, chocolate, nuts and shellfish. (All HIT foods) The doctor had a light bulb moment and sent us over for labs. She said he has Chronic Urticaria. After some discussion she said that chronic urticaria is the US version of HIT. The US hasn't done research into HIT yet since it is a European problem. All the medical journals and research I found was in German and there were passages about it being a German genetic problem. My husband is 1/2 German so this made sense. She recommended that I run to the store and pick up a bottle of Children's liquid Zyrtec. 2 mL later and my son was feeling so well that he speed crawled around the house chasing cats for an hour. He was a pain to put to sleep not because he was ill but because he felt so good. He was talking up a storm and slept through the nigh for the first time since he was 2 months old. He didn't need any reflux medicine and didn't need Benadryl. He was a new boy.
What really got under my skin is the fact that a trained medical professional sent us home with a child covered in hives. Not just a few spots...covered in hives. He was on the verge of full anaphylaxis and this doctor wrote us off. I am so grateful that I had been giving him Benadryl because he very easily could have needed more than a Zyrtec to feel better.
More to come as we head back to the allergist to confirm the blood work, look into additional GI problems and heal our little man. I am elated that we are making progress.
Alton was born 10 1/2 pounds and 23" tall. That is a big baby. From the start he was "that huge baby" to the doctors. When we started having problems with red spots appearing on him after feedings we brought it up to the doctors. It was ignored because he was just so healthy looking. Never mind that he was too large at birth so he had a broken clavicle and had been given antibiotics and monitored. I was coerced into supplementing by the night nurse and things started getting henky. Wheezing occurred spots appeared and he became irritable. Really irritable. Being a first time parent I figured that all babies cried and I just needed to learn how to soothe him. When we took him back and forth for appointments he would scream in the car seat. Scream after scream was followed by tears. Tears flowing down the face of a one month old child. It was heart breaking. We mentioned this to the doctors and they said that most babies get used to car seats and not to worry. That in combination with the spots, having to sleep propped up, screaming fits, inability to urinate in the evenings and wheezing made us nervous. We were cautious but things took a turn for the worse at two months. We had thrush. No doubt it was a side effect of the antibiotics we were forced to have for no reason at the hospital. Once the doctors figured it out, after I self-diagnosed and begged to be taken seriously for 3 weeks, they prescribed 2 rounds of antibiotics and anti-fungal creams. That is when the flood gate of problems broke.
The next and most persistent problem developed overnight. A light switch flipped on in our son's body and he developed diarrhea. This continued for months until I removed gluten from my diet. At this point I removed gluten, dairy and soy. I assumed that the gluten intolerance was causing the dairy and soy because of his damaged villi but when his stool got better and the intolerances to soy and dairy got more sensitive I knew we really needed help.
At this point Alton is 3.5 months old and the doctors are ignoring us. Babies can't have Celiac. Babies don't have milk and soy intolerances. This mom really needs a life. I could tell if I had made a dietary mistake because our son would scream bloody murder in his car seat. Every day was a cycle of either mucousy diapers, occasionally bloody, but always diarrhea. When he ate solids it always passed through with no digestion present. We cleared the house and made an overnight leap into eating Paleolithic. It was a little miracle. I felt amazing after the switch and he got a little better. I didn't have to adjust recipes from other books, I could simply cook as directed. I also loved that unlike my vegan and vegetarian cookbooks I had no soy issues. This same time we noticed that Alton was triggering to other foods. Triggering really hard. We took him to the allergist for blood and skin prick tests which all came back negative. His skin would redden get scales, bumps, lesions etc but then go away when the food cleared his body. We were told to see a gastroenterologist for FPIES. Food protein induced enterocolitis syndrome. That was a scary one. Thankfully I had started my food journal and we realized after some trial and error that the same foods didn't always make him sick. We found hidden gluten in some of the foods and successfully re-introduced foods that we had banned on the FPIES diet.
Yet with all this close monitoring I still had problems cropping up left and right. The doctors were useless and we were clearly on our own to sort this out. Every night Alton would be a fight to get down because he was covered in red bumps that hurt. Every night he would have to urinate and couldn't. Every night he would scream in the tub. Every night he scratched his face and head. Every night he had to be held or propped up to stop what we figured out was reflux later. He barely slept. During the day he barely slept. Our poor son had bags under his eyes and was so irritable. In the car he screamed when the light hit him. He would only be held by me and wouldn't let me put him down day or night. It was become a nightmare situation. I was beyond burnt out. Where were the doctors? Off in la-la land. I kept making appointments and bringing him in to be told that he looked fine. Clearly he was a healthy boy. He was off the charts with his skill development so what was I complaining about? Just because a baby can crawl at 4 months or talk at 7 doesn't mean he is well.
We saw our first pediatrician who failed to take us seriously. I had done HOURS of research into childhood food intolerances, Celiac gluten sensitivity and FPIES. He said there was nothing wrong with our son, just look at him. He offered a can of formula to us that was for soy/dairy allergic kids. The top ingredient was soy. Because it was hydrolyzed he figured it would be fine. Apparently he doesn't know how proteins work. The only good thing we got from that meeting was a prescription for acid reflux medicine. He gave it to us as a way to shut us up but it turned out to be helpful. At least there is that.
Plugging away....day by day of what should be such a wonderful time. Day after day of agony. No sleep for any of us, I can barely eat anything without a guilt trip of what if this or that is making him sick. Agony.
The psychologist explained to me that life was full of pain and if it wasn't this it would be something else. I just needed to learn how to work little 10 second happy moments into my day. She then went on to tell me how she loves hand lotion and ringing a bell to find calm when her day gets rough. So that is what I needed, hand lotion. Since I can't find the time for a shower most days, hand lotion is kind of out, lady. She dug her hole even deeper when she saw me tending to my child who was in obvious pain.
Dr.Frankenfreud asked me why I picked him up and coddled him.
- I said he was in pain.
She said how do I know?
-I explained.
She said that Alton needed to learn how to deal with his own issues and that I needed to let him. He was getting too much attention and would never be able to deal with his own problems if I coddled him so much.
As if I wasn't already dreaming up a murderous end to this nut job, she continued to accuse me of enjoying my son's pain because it supposedly made me feel more motherly to be able to comfort him. I told her I had places to be. (Run away from the crazy lady!!!!!)
After the utter failure from the doctor I went home and hit the research harder than ever. I stayed up into the dawn hours looking at medical journals. I was up anyway since Alton had to be held and was crying in his sleep because he was in so much discomfort. Heart breaking. I hit on something that gave me goosebumps. I found something that would explain why he was triggering to foods on top of gluten, dairy and soy. HIT. Histamine Intolerance. I scoured the forbidden foods list and cross checked it with my food journal. It was a perfect match. You can read the symptoms here.
8:00 the next day I was the first person to welcome the allergy clinic crew to work. I had so many questions. I described my son's body and what I thought was going on. They looked at the constant failed allergy tests and went back and looked at the fact that each time I had asked for test to be done for bananas, mushrooms, tomatoes, chocolate, nuts and shellfish. (All HIT foods) The doctor had a light bulb moment and sent us over for labs. She said he has Chronic Urticaria. After some discussion she said that chronic urticaria is the US version of HIT. The US hasn't done research into HIT yet since it is a European problem. All the medical journals and research I found was in German and there were passages about it being a German genetic problem. My husband is 1/2 German so this made sense. She recommended that I run to the store and pick up a bottle of Children's liquid Zyrtec. 2 mL later and my son was feeling so well that he speed crawled around the house chasing cats for an hour. He was a pain to put to sleep not because he was ill but because he felt so good. He was talking up a storm and slept through the nigh for the first time since he was 2 months old. He didn't need any reflux medicine and didn't need Benadryl. He was a new boy.
What really got under my skin is the fact that a trained medical professional sent us home with a child covered in hives. Not just a few spots...covered in hives. He was on the verge of full anaphylaxis and this doctor wrote us off. I am so grateful that I had been giving him Benadryl because he very easily could have needed more than a Zyrtec to feel better.
More to come as we head back to the allergist to confirm the blood work, look into additional GI problems and heal our little man. I am elated that we are making progress.
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