I know it's been quiet in my virtual world for a while, but in the real world it's been insane. We're still trying to find a food that Zen Girl can tolerate (we're on day 2 of carrots now - so far so good) and we had to write a letter to the Ombudsman at the Children's Hospital and get ZG's care transferred to a new GI.... here is part of the letter:
What follows is our account of O.’s food intolerances and our interactions with Dr. L..
Our first encounter with Dr. L. arose through a visit to the ER in late July 2007. Our pediatrician (Dr. M.) was away on holiday and our daughter continued to have blood in her diaper despite being breastfed while C. (the mother) was on a bovine and soy free diet. We had nowhere to turn being a weekend so we visited the emergency room.
Dr. L. was on call that night and was consulted by phone. After hearing the case she instructed the physician to place our daughter on hypoallergenic formula (Alimentum or Nutramingen). C. was to stop breastfeeding and pump for a few days in order to maintain her milk supply. This approach was of concern to us, since we had been in contact with the G.I dietician Marie Josée Trempe prior to this visit, via our pediatrician, and she had told us that these formulas contained soybean oil. Since O. had reacted with blood to trace amounts of soybean oil in C.’s diet, we were very hesitant to expose her to it directly. The emergency room doctor relayed to us that Dr. L. said C. must have accidentally eaten a bovine or soy product. Our son
We expressed our deep concerns to the ER doctor about giving O. soybean oil and he agreed that breastfeeding was still a reasonable option, for now, as long as C. commenced an even more restricted, allergen free diet (no milk, soy, beef, eggs, nuts, seeds, fish, and wheat). C. started this complete allergen free diet immediately (July 29th, 2007). This diet was very challenging for C. and our family, but there was no question that if it helped our daughter we would follow it. At the time we felt it was the best decision to keep O. healthy and growing.
Early that next week, we were called by Dr. L.’s secretary and given an appointment on August 1st 2007. We were very happy that we would be receiving some guidance from G.I. During the visit, Dr. L. suggested that given how sensitive our daughter was she would recommend that we try offering an amino acid-based formula (Neocate) to O.. The dietician had also previously informed us that Neocate contained soy lecithin, which could also provoke a reaction in our daughter. We informed Dr. L. of our real concerns about switching O. to this formula:
1) That it contained soy lecithin which we knew our daughter was intolerant to.
2) That some babies refused this formula due to taste.
3) That she was growing well on the bovine and soy free diet and that we were eager to see if we could get the bleeding under control with the allergen free diet that had only been fully started on July 29th (4 days earlier).
In addition, Dr. L. suggested that an endoscopy be performed on O., in order to test for signs of food intolerances and to rule out any other potential problems. The doctor informed us that she had room in her schedule and could perform the test the following day. Submitting our 2-month old daughter to an invasive procedure required some thought on our part in order to make such an important decision. When we asked for a few minutes to make our decision, the doctor seemed to get upset and left the room briskly telling us that we were lucky to get our daughter scoped so quickly and that we had better make our decision because if we didn’t show up the next day she would not be able to schedule us for a long time. We were both very put off by Dr. L.’s defensiveness, and we worried about entrusting her with our daughter’s care. After a few minutes of discussion we decided that it was in O.’s best interest to have the test done and find out what was going on inside.
The next day we arrived for the scope and we were warned that we would not be allowed into the room after the procedure unless we promised not to ask any questions and Dr. L. repeated: “And I mean NO questions”. We were a little taken aback at this threat but new that Dr. L. had to concentrate on her charting during this time. We also assumed there would be a time to ask any important questions later. After the scope we both went into the room and she explained quickly what had been observed. The doctor told us that she had found nodular hyperplasia in the intestines but that she assumed that biopsy results would also indicate eosinophils in the gut. During our visit with Dr. L. on the previous day, we had been told that nodular hyperplasia was benign and had nothing to do with food intolerance.
O. was then transferred to recovery where we both had time to think about our questions. The recovery room nurse asked us if we had any questions for Dr. L. and that it would be no problem to get her. Instead of Dr. L., the GI nurse was sent. She was helpful, but had very limited knowledge about nodular hyperplasia. We had no idea how to tell if O. was bleeding from the nodular hyperplasia or the actual intolerance and whether or not there was any correlation between the two. We left the hospital with no answers because Dr. L. never came to see us.
The next week she called with the biopsy results and spoke to Philosopher Dad. He listened and heard her two options: switch to Neocate formula (her first choice) or continue on the allergen free diet with regular weight checks and blood tests. Philosopher Dad also asked for a way to contact Dr. L. because C., who was not home at the time, would definitely have questions considering she was the one breastfeeding, monitoring diapers, and weight gain. Dr. L. did not leave a number to reach her. When C. returned home she tried to contact Dr. L. and left a message with her secretary. In the days and weeks that followed C. never received a follow up phone call or appointment to discuss the test results and her concerns about Neocate with Dr. L.. She was once again told to contact the G.I. nurse who had no more information than she had had previously.
During the four months that followed, C. carefully followed the allergen free diet and Dr. M. closely monitored O.’s weight gain and blood results. At one stage, O.’s weight gain slowed and she even lost a little. Dr. L. had told us that any problems with O.’s weight gain would be because she was not absorbing nutrients due to her food intolerance. However, with the help of the Goldfarb Breastfeeding clinic at the Jewish General Hospital, we determined that C.’s milk supply had decreased because O. was sleeping longer stretches and was only feeding four or five times during the day. C. started taking medication to increase her milk supply and began feeding O. seven to nine times a day. O. quickly regained her weight and caught up to her growth curve. To us, this was an example of Dr. L. scaring us into believing that growth issues were only due to food intolerance. In this specific case the cause was simple and so was the solution.
Throughout this period, we remained in close contact with the dietician who guided us well during this time. The dietician frequently reminded C. that we had done the best for O. by breastfeeding her while managing to stop her bleeding and preventing other signs of decline. In addition, O.’s blood tests all proved to be normal according to our pediatrician. We all breathed a sigh of relief and were happy we were able to keep her growing and healthy. She was meeting all her developmental milestones and was a very happy baby who slept and breastfed well.
With guidance and encouragement from the dietician we introduced wheat back into C.’s diet in late August (O. was 3 months old). After eating wheat everyday for two weeks, there continued to be no blood in O.’s stool, and no elevated eosinophils on her blood test. When O. was four months old we introduced cooked egg in C.’s diet but unfortunately, O. had specks of blood in her stool within 36 hours and the eggs were discontinued. About two weeks later, fish was introduced into C.’s diet for two weeks with no blood and no elevated eosinophils on her blood tests.
On the advice of the dietician and Dr. M. we introduced rice cereal (Beechnut Brand) to O. when she was 5 months, one week old. Within 24 hours she had blood in her diaper. Unfortunately, for the first time since the diet started, C. had by accident eaten a food that had a trace of soybean oil. The dietician advised us to wait until the blood cleared and then reintroduce the rice cereal, assuming that the soybean oil had caused the reaction, not the cereal. We did this but within 30 hours O. again had specks of blood. Marie Josée then advised us to wait two weeks and then reintroduce rice cereal, but to use a different brand.
We reintroduced rice cereal to O. when she was six months old, this time the PC Organic brand. Within 30 hours O. had blood. It was still small streaks but a little more than the other times she had bled.
At this point, we were at a loss and scared for O.’s health. Dr. M. and we were very glad that we finally had our follow up with G.I. the coming week.
On November 28th, 2007 we had our follow up with Dr. L.. Upon starting the visit we gave her the blood test results that C. had for O.. Dr. L. was clearly annoyed that she had not gotten these before. We had no idea that Dr. M. had not sent them but we also knew that if there had been a concern, Dr. M. would have communicated with Dr. L.. As Dr. L. flipped through the results she became upset and said in similar words:
“I thought I told you that you could continue breastfeeding only if she was blood free, growing, AND her blood tests results were fine. She is anemic and her albumin was low.”
We were both shocked because according to Dr. M., who had been following O. closely, she was doing just fine. In fact Dr. M. had been extremely happy with the way O. was growing. More recently she had mentioned that because she was nearing 6 months old, her natural iron stores were depleting, although she did not consider her anemic. Dr. M. suggested we start iron supplements because she knew we were having trouble finding a cereal that O. could tolerate.
We continued our meeting with Dr. L. telling her about our current concerns about finding O. food she could eat. Dr. L. explained her theory that maybe giving O. Neocate would allow her gut time to heal properly. She thought that despite normal eosinophils levels (except when eggs were introduced) and weight gain, O. was still being mildly irritated by C.’s breast milk. When food was introduced it irritated her and started the bleeding again. This made sense to us but we brought up our real concerns about the plan to switch O. to Neocate which had still not been addressed in the four months since our initial visit with Dr. L.:
1) That it contained soy lecithin and O. was known to be intolerant to trace amounts of that in C.’s diet.
2) That she may at 6 months old refuse the vile taste of it.
At this point Dr. L. was clearly annoyed with our concerns and rushed to tell us about Neocate Junior which has no soya lecithin and which could be diluted down and flavoured. She also said in similar words:
“Yes, she may refuse the taste but that is why I told you when I saw you last that we should put her on it earlier… and anyway, if that doesn’t work we can put her on rice milk”.
At this point we both were scared with the likely eventuality of rice milk because we knew it had no protein in it and up until now, O. has been reacting with blood to rice cereal. We couldn’t see how rice milk would be a viable option. Dr. L. clearly did not want to hear our concerns about this and went right to her next discussion. We kept trying to get our questions in but she often cut us off in accusatory, degrading tones that indicated she was not happy we had continued breastfeeding because we had put O. at risk. She also mentioned in similar words:
“This is a common problem that your daughter has; YOU have made it bigger than it really is. There are many other babies who have this.”
We were really taken aback by this comment and felt wrongly accused of putting our daughter in harm’s way. From our regular contact with the dietician, we understood that it was very rare for an infant to be so sensitive to so many foods through breast milk. The dietician had told C. that she was only aware of one other similar case, where a breastfeeding infant had reacted to soy lecithin eaten by its mother.
In order to keep the visit civil we acknowledged that we knew everyone there had the best interests of O. in mind.
At this point Dr. L. suggested that it might be best to perform another endoscopy on O. to see if there was something else going on or if there were still allergens in her gut. At this point she proceeded to address us in a threatening tone and said in similar words:
“Listen to me, if I am to scope your daughter at all, I want you to agree NOW that if I find allergens in her gut, the feeding plan will be changed to hypoallergenic formula. If you do not agree NOW to this plan I will not do the scope. If you do not agree with this you can ask for a second opinion, but that will take 6 months, and O. doesn’t have 6 months, or you can go to St. Justine, your choice”.
At this point we felt very threatened, and we told her so. We told her that we wanted the best for O., and if that meant another scope we would agree, but that we felt very uncomfortable agreeing to a treatment plan before we had done the scope and seen the results. Furthermore we had not felt that our concerns about O. had been addressed at all. O. was very likely to refuse the vile taste of Neocate or Neocate Junior. Rice milk was not a guaranteed option either because of her recent reaction to rice cereal. Dr. L.’s lack of a coherent and comprehensive plan left us thinking that we may be coerced into taking our daughter off breast milk, which is making her grow and gain weight, for alternatives that may harm her more. As parents, we will definitely seriously consider the option of switching O. to formula if we can’t find anything safe for O. to eat in the next few weeks or if her condition worsens. However we don’t want to be threatened that our child will not receive testing that she needs.
After our follow up with Dr. L., we met with Marie Josée, the dietician on her team. At this point we were both very distraught over the meeting with Doctor L.. C. felt comfortable with Marie Josée and began to cry. She explained her distress over the threat Dr. L. had made. Marie Josée clearly expressed to us that for now that breastfeeding was in O.’s best interests and that she was sure we would be able to find foods that she could tolerate. In speaking with Marie Josée we set out a clear plan; we would wait until she was blood free and then introduce sweet potato for five days, then banana, and then lamb.
In summary, ever since our first encounter with Dr. L., we have felt that she was frustrated with us, and that we asked too many questions. After carefully considering the advice of Dr. M., Marie Josée the dietician, and Dr. L. we decided to continue breastfeeding. It was hard to fully understand Dr. L.’s advice because after the testing C. was never given the chance to talk to Dr. L. about her concerns. Although we might never know, it is possible that we did not make the best decision at the time because of the impossibility of communicating directly with Dr. L.. We want to reiterate that we are not solely set on breastfeeding, especially if we are presented with a well-explained plan that addresses our serious concerns about transfer to hypoallergenic formula. Ultimately, we are scared for our daughter’s health and we want someone who will hear our concerns and clearly explain their recommended course of action. In the end it is O. who will suffer if we as her parents do not make the right decision because we are not given enough information to make an informed decision.