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Joshua at 4 years, showing off his Christmas gifts |
Although Catherine was left now fearing for Joshua's very life, the hospital took two and a half weeks to find him a bed. Catherine made plans to stay with Joshua the whole time, since he was still getting most of his nutrition from her breast-milk. The hospital was co-operative, even providing her with a fold-up cot so that she could sleep next to Joshua's hospital bed. She had prepared meals for herself ahead of time, so that she could stick to the diet that had helped to keep Joshua healthy. Catherine was able to store her foods in a freezer provided for parents and heat them up in a microwave also provided.
Catherine provided the hospital doctors with a copy of the list she had compiled of all the foods she had tried, and the reactions Joshua had suffered. The doctors seemed very grateful for this list, and included it in his file. Catherine also gave them a list of the few foods Joshua could tolerate, and explained how she fed him simple foods only. No mixtures, and no more than one food per meal - on a four day rotation basis.
Every word seemed carefully listened to and copied down. Yet, for his first three days, Joshua received meals of applesauce, casseroles, breads and cereals, eggs and milk, puddings, Jello and ice cream. Catherine wondered what would have happened to Joshua if she had not been there to protect him, and see that they returned these foods for something Joshua could tolerate.
She constantly had to remind everyone - single foods - no spices or mixtures. Although she had been assured that the Hospital for Sick Children had extensive experience feeding severely allergic children - they continued to send up food Joshua could not tolerate.
When the child in the next bed went home, she was replaced with another with a highly contagious disease. Convinced by the nutritionist that Joshua was at the brink of death - she wondered at the doctors' logic in exposing him to something that could prove so dangerous to him.
Is This Your Child? |
Finally that child was moved out of the room. But the baby across from Joshua had developed an explosive diarrhea, and the hospital room was quarantined. The six-week-old baby, with frequent apnea spells, hooked up to all kinds of equipment, was visited only once by her family in the week and a half Catherine and Joshua shared her room. Catherine's heart broke for the tiny baby, yet wished they hadn't ended up in her room. The baby cried almost continually, the nurses having little time to spend with her. The machinery surrounding her was constantly beeping, the sound of her heartbeat turned up full.
With the room in quarantine, Josh was unable to leave his room to visit the playroom or even to stroll the hallways for a different view. Overwhelmed by all the pinching and poking from every doctor and nurse that walked into the room, and the repeated daily blood tests, Joshua was hysterical if Catherine tried to leave the room without him.
Fearing Joshua would attempt to climb out of the high crib if she left him in the room alone, she had to wait until a nurse was free to watch him for a moment, before she could run to the washroom or grab a meal. She never called the busy nurses, but waited until they were in the room for a few minutes, before she asked if they had time to stay in the room. Even though Catherine was never gone more than a few minutes, Joshua was always inconsolable by the time she got back.
The nurses were indignant that Joshua refused to turn to them for comfort, preferring to be left alone - waiting for his mother's return. The nurses felt he was simply spoilt - yet Catherine disagreed. In Joshua's mind, she knew he felt abandoned in a strange, hostile environment - surrounded by strangers who hurt him every time they came near. He had no guarantees, in his mind, that his mother would ever return.
Finally, the doctors decided on a menu. It consisted of a couple of bananas for breakfast, a boiled potato and dry hamburger patty for both lunch and supper - every day. Every other day they would give him French fries instead of the boiled potato. Joshua would gobble up the first banana for breakfast, and Catherine would put the second banana aside for later. But he refused to touch the dry potato or the meat patty. Catherine would wait for at least an hour - to see if Joshua would eat the meal provided by the hospital. When he would refuse, Catherine would share some of her dinner that she had brought from home and knew he could safely tolerate.
The doctors told Catherine they were attempting to find foods that Joshua could tolerate and that she was not to allow him anything but the foods provided by the hospital. Catherine told the doctors that she had already tested these foods and knew what his reactions would be. The doctors maintained that they wanted to see for themselves. However, every time she brought a reaction, such as a new diaper rash, a flare-up in his eczema or a wheezing cough to their attention, they dismissed it as not important.
So Catherine complied and watched her little boy cry and beg - hunting for food in drawers and under the bed - so hungry. Still he refused to eat anything but the bananas and the French-fries. When the doctors came back to ask why Catherine thought Joshua was not hungry, she told them just how hungry he was; hunting desperately for food. She did, however, have a theory as to why he wouldn't eat their food. (Although one doctor admitted he wouldn't eat it either!)
Catherine felt that Joshua had suffered through so many reactions to foods that he did not trust many foods, especially foods offered by someone other than his mother. The doctors decided it was because Joshua nursed too much and told Catherine to cut back to only two feedings per day. And, if that didn't force him to eat, then she would have to wean him - to see if that worked!
Catherine tried to remind the doctors that Joshua's problem was not that he wouldn't eat, but that he could not tolerate so many foods - there just wasn't much to feed him. The doctors just nodded their heads and walked out of the room. Gradually it dawned on Catherine that they did not even believe her at all. They thought she was just a neurotic mother, and that Joshua was just a spoilt brat! A nurse pointed out that Joshua cried when his mother left the room - as proof. Catherine had always known that to be normal behavior in a toddler!
Fearing the doctors authority to declare her an unfit mother
, and take Joshua away from her, Catherine had quietly co-operated with every thing they had asked her to do. Patiently, she had awaited the promised necessary tests - to check if something was wrong with Joshua internally, or if he was lacking enzymes. But their decision to force Joshua by starving him, and refusing him his only good and safe source of nutrition - his mother's breast-milk - that was where Catherine drew the line. Joshua was a little boy, not an interesting experiment!
Catherine called her La Leche League leader, Lorraine, and asked for her advice. Catherine felt sure the only thing that was keeping Joshua alive and healthy was all the nutrition, antibodies, digestive enzymes and immunities he received through her breast-milk. With so few foods tolerated, weaning Joshua at this point would surely be a death sentence for him. Had the doctors completely forgotten that Joshua was admitted for Failure to Thrive
- that he was supposedly very malnourished??
Dr. Jack Newman's Guide to Breastfeeding |
Lorraine suggested avoiding nursing when the doctors and nurses were around and she offered to call Dr. Jack Newman. He ran a well-known breast-feeding clinic out of the same hospital.
Each day the same foods were brought and every day Joshua refused to eat them. He grew quieter, sleepier and depressed in the confines of his quarantined room. Finally Dr. Newman arrived, and listened to Catherine's story, and concerns over the doctors' handling of Joshua's case. She further expressed concern that Joshua had been there more than a week and none of the so-called important tests had been done.
Dr. Newman agreed that weaning Joshua at this time would be the worst thing possible, and spoke on her behalf to the doctors covering Joshua's case. Reluctantly, they allowed the breast-feeding to continue, and finally ordered the tests. The next day the blood work was back, and all of Joshua's nutrient levels were well within normal levels. As they settled down to sleep that night, a nurse came in to remind Catherine that Joshua was not to receive anything by mouth from 12 PM until he had his test the next day at 10 AM. Then the nurse went on to complain - she didn't know why Catherine was putting Joshua through such an invasive test, and that all the doctors were against it. In shock, Catherine questioned the nurse further, and decided that if the doctors were against doing it - she could not subject Joshua to an invasive test she had only agreed to under duress. After all, Dr. Levy had been the one to tell her Joshua was going to die if she didn't agree to these tests - she didn't think this up herself!
Catherine told the nurse to inform the doctors of her decision. The next morning only an intern arrived. Catherine told him of her concerns about Joshua's treatment so far, and asked what the doctors planned to do next - and what it was they hoped to achieve. The intern admitted they had no further plan that to introduce foods on a daily basis until Joshua was back to eating a normal diet - but that they would continue the starvation diet therapy
until he complied.
That was it! Catherine could see no point in staying there any longer. There had been no value in the entire hospital stay, and she refused to subject Joshua to anymore starvation diets. A little boy who had so much difficulties surrounding food did not need any more focus on his foods - creating an eating disorder where one had never existed before!
Upon his return home, free to eat as he wished - Joshua ate like it was going out of style! Disproving the doctors' theory that he was simply spoilt, Joshua ate 6 tangerines, 3 bananas, 2 huge plates of French fries, and several slices of rice bread . . . and then he ate his dinner!
However, the stress of the whole experience caused Catherine to lose her milk again. She had to work extremely hard at this point to bring her milk back in. She feared the next time would be the last.
After consulting with Dr. Harris - who apologized profusely for the whole fiasco (even though it was not her fault) - it was decided Joshua would be allowed to eat any nutritious food he wished. With a strong emphasis on high calories. Plus Dr. Harris asked Catherine to try a pre-digested formula, as a supplement to Joshua's diet - to get more calories and nutrition into him. Catherine bought this formula, and offered it to Joshua. After a couple of sips, he handed it back . . . and slowly slipped down, his eyes glazing over. Catherine watched in alarm, as Joshua struggled to sit up - only to slip down again. It was too painful to watch his struggles, Catherine scooped him up in her arms.
Joshua just lay in her arms, closed his eyes and whimpered. It was over any hour before Joshua would begin to brighten up and return to his old self. Another expensive test to be added to the growing list!
Special Diets for Special Kids |
Having given his system a rest, after his near starvation diet, Joshua seemed to tolerate a few more common foods. On a more casual rotation of pork, beef, potato, noodles, tomato sauce, bread products and eggs - Joshua began gaining weight again and growing - little by little. His symptoms seemed minimal, and Catherine began to doubt herself.
Had Joshua been truly that allergic, or was Catherine really crazy? But, slowly and surely, the symptoms returned and Catherine began again the search for new foods for Joshua to try. She bought buffalo meat, mangos, quince, kumquats, loquats, lichi nuts, tamarind, pepinas, jackfruit, tomarillo, bamboo shoots, lotus root, wild rice, quinoa and feijoa. All to no avail!
Another naturopath was recommended, Dr. Hassel. After her experience at the hospital, Catherine had sworn off doctors - but what was she to do with this little boy who still had so few foods he could tolerate???
Dr. Hassel was also a believer in the pendulum, and dabbled in chiropractic adjustments. Trying to hold back her doubts, Catherine allowed Dr. Hassel to do a couple of chiropractic adjustments with Joshua, and purchased the alcohol- based homeopathic remedies the pendulum recommended. Unfortunately, the pendulum forgot to mention that Joshua was exquisitely sensitive to the alcohol base!
Although Catherine had no problems giving Joshua his spring water-based neutralizing drops - when she tried to give him the alcohol-based remedies, Joshua would scream and pull away. Tossing his body this way and that, in an effort to avoid even the odor of the alcohol. It was such an unusual reaction for Joshua, that Catherine decided to trust his judgement again, and threw the remedies away.
Just after Joshua turned two, Dr. van Hooganhuize moved his office up north. When Catherine asked him where else she could turn, the doctor told her that he had done all he could for her son. There were only two options left. Catherine could travel with Joshua to Chicago to see Dr. Doris Rapp. When Catherine told him she could not afford such an expense, Dr. van Hooganhuize told her that her only recourse left was prayer. Catherine took this to mean there was no hope for her little boy.
Catherine decided she would simply have to do the best she could on her own. Joshua seemed to have some good, stable periods - lasting anywhere from a few days to several weeks. She would just try to build on the good times.
But, just a few months later, the landlord of her townhouse complex ordered a pesticide spraying. Knowing that, if she didn't allow her unit to be done, the bugs would simply move into Catherine's home - she reluctantly allowed the spraying to be done.
Catherine and Joshua left the house for six hours, sending her 15-year-old son, Jason, to open the windows after four hours. But the next morning the whole family woke up ill, both Catherine and Jason suffering from asthma. Jason's asthma attacks were so bad that after his second emergency trip to the hospital - it was recommended that he not return home for at least a week. But there was nowhere to send him. Every friend and family member Catherine knew had cats - Jason's worst allergen!
However, Joshua was the one that never got better. All the gains Catherine had fought so hard for - every one was lost. Joshua was again losing foods, refusing even his favorites, losing weight, not sleeping more than an hour at a time. Acting out by screaming, temper tantrums, crying and whining, refusing to walk due to his aching legs. And nursing constantly again. He no longer safely tolerated any food, and lived almost totally on breast milk alone. For short periods he would tolerate a food here or there, but then he would start reacting again and refuse to eat.
A Compromised Generation: The Epidemic of Chronic Illness in America's Children |
Licorice given to Joshua by a well-meaning friend sent him into uncontrollable temper tantrums. A tiny piece of the candy cane Joshua received from the shopping mall Santa left Catherine struggling desperately with a child flipping every which way - screeching and screaming - trying to get him into his winter things to walk home in a winter blizzard. The cayenne powder unknowingly sprinkled on his French fries by a restaurant - sent him into such a rage that he tried to throw himself into on-coming traffic - twice - before Catherine was able to hold him still long enough to belt him into his stroller.
While Catherine was working at her display booth for Born to Love at the Environmental Conference, she noted one of the booths belonged to the Allergy and Environmental Health Association. She had found the Allergy Information Association of little help with Joshua's extensive and extreme allergies - but wondered what this group might have to offer.
After being at the conference with his mother for three days - Joshua was angry, hyper and totally uncooperative. As Catherine stood there, trying to look through the literature for any new answers - Joshua was hitting her, struggling with her and screeching. Just as Catherine was about to give up in disgust, the woman manning the table asked - innocently enough - Have you ever considered he might have allergies?
Catherine looked at the woman, several emotions crossing her face, and tried desperately not to weep as she stumbled out, Allergies?? You don't know the half of it! No-one believes me, but this child is allergic to every food I've tried!
Looking at the woman smiling back at her, Catherine was sure she didn't understand, but went on, I've tried hundreds of foods, gone from doctor after doctor, tried almost every crackpot scheme that came along - and this child is driving me CRAZY!!
[ Joshua's Story - The Child Who Could Not Eat! - Part 1] [ Part 2 ] [ Part 3 ] [ Part 4 ] [ Oh Gosh! They Are Debating About Me!! ]
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Born to Love articles are written by Catherine McDiarmid-Watt
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Last updated - April 5, 2024
