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Our Story

Our eldest son (L) was diagnosed with milk protein intolerance at 6 weeks old when we found tiny drops of red blood in his diaper. The drops were mixed with his  stool. He also had green mucousy stools.  He was exclusively breastfeeding and we soon found out that proteins from dairy, beef, and soy that his mom (Cynthia) was consuming were passing through her breastmilk and causing a type 4 (intolerance reaction) allergy. On a dairy, beef, soy elimination diet Cynthia was able to clear her  breastmilk from any of these offending proteins. Cynthia was recommended by the allergist that followed us to keep soya lecithin and soyabean oil in her diet because these theoretically contain no proteins. Despite the restrictive diet (L) remained terribly colicky and a terrible sleeper. In all other ways he thrived beautifully (i.e. motor milestones were on time or early, he talked early etc.. ) and best of all Cynthia was able to breastfeed him until he was 13 months old when she was 20 weeks pregnant with our 2nd child.

17 months after (L) was born we gave birth to our first  daughter (O). At two weeks old she became extremely fussy and knowing that MSPI is highly hereditary Cynthia decided to go on the same diet as she did with L  so that she could continue breastfeeding. At six weeks old we discovered drops of blood in her diaper and her stool was green and mucousy despite already being on the restrictive diet. At this point our peadiatrician was at a loss and contacted the GI Department at the Montreal Children ‘s Hospital. The GI doctor advised that we put her on an amino acid based formula called Neocate.  Cynthia was devastated that she would have to stop breastfeeding despite the fact that (0) was a very happy, thriving baby. Compared to our son she was sooooo happy. Our peadiatrician believed in the benefits of breastmilk. We agreed with her that so long as we could get the bleeding under control and (O) continued to gain weight, we could safely continue the breastfeeding route. Cynthia was immediately put in contact with the GI team’s dietician who was suprised and impressed that she wanted to continue breastfeeding, she also advised Cynthia that if she could follow her dietary recommendations, breastmilk (minus the offending proteins) would be better for our daughter.
I felt a surge of hope and determination and at that point I would have done anything to stop the bleeding. I was told to give up soy lecithin, soyabean oil and legumes (chickpeas, kidney beans etc..)
After one week of this diet, my daughter was still having drops of blood (she was now 7 weeks old). The GI doctors were sure I must have been missing something in my diet but the dietician and my peadiatrician knew that Cynthia checked every food, vitamin, or medication that went into her mouth (including toothpaste and medications such as tylenol). Knowing this, and that (O) was so happy and gaining weight well they supported Cynthia in continuing breastfeeding and trying the elimination of other foods.
At seven weeks old we gave up the following foods on top of the beef, dairy, soy, legumes:
- Eggs
-Nuts
-Seeds
-Cocoa
-Wheat

The GI doctor also encouraged us to do an endoscopy on our daughter. We nor our peadiatrician liked the autocratic way the test was pushed on us. We were given all of 1 minute to decide if we consented for the test that would be done the next day. The endoscopy confirmed nodular hyperplasia and high eosiniphils in the gut. This confirmed that she was having a type 4 allergies (intolerance reactions in the gut).

Cynthia also began a trial of pancreatic enzymes that were supposed to further break down the foods she’d eaten. The recommendation came from the Goldfarb Breastfeeding Clinic at the Montreal’s Jewish General Hospital that Cynthia was being followed at. We consulted with the GI doctor that was following us and she also agreed it was worth a try with the pancreatic enzymes. Cynthia took “Cotazym”. 2 Capsules with each meal and 1 with each snack.

By 9 weeks old there was no more drops of blood and she was still thriving! We were thrilled and Cynthia was learning to eat very differently. Having been through something similar for our first son gave Cynthia the strength and knowledge to get through this.

At 12 weeks old on advice of the GI dietician Cynthia introduced wheat back in her diet with no bleeding!
At 16 weeks old eggs were reintroduced into her diet but unfortunately we saw blood within 24 hours. The blood went away 24 hours later once she stopped the eggs in her diet.
At 19 weeks we introduced cocoa into Cynthia’s diet but we also saw blood.
At 5 months we gave rice cereal to our daughter and within 24 hours she had blood in her diaper. It stopped once we stopped the cereal.
At this point we were again at a loss and very scared for our daughter.

The dietician guiding us was an incredible support unlike the GI doctor in her department. She scared us and threatened us that we had brought this harm upon our daughter. Thank goodness for the support of our peadiatrician and the dietician because our strength and conviction that we were doing the right thing was beginning to waver.
With the encouragement of our families we filed a complaint with the ombudsman and our case was transfered to another more empathetic doctor!

Cynthia continued breastfeeding on the restricted diet and waited until our daugther was seven months old before we tried food again. The Montreal Jewish General’s Breastfeeding Clinic (Goldfarb ) was a great support, reminding us that babies can thrive on breastmilk for longer than the first six months as long as they take an iron supplement. We started with carrots rather than another cereal.
We waited anxiously those first few days but we were thrilled to see that she did not bleed.
We continued on adding apple, squash, pear, zucchini, peach , chicken, lamb, turkey, barley cereal, oatmeal cereal, blueberries, wheat and a bunch more!
We were so relieved!
The best part of all is that are daughter was more than thriving. She jumped from the 25th% to the 80% from the 6-10 months old! She was also a terrific sleeper and developing normally. The only medical problem was that her iron was getting a bit low. Cynthia was very worried about this but our peadiatrician was not worried at this point and just upped her iron supplements and scheduled more blood tests.

Today we had our follow up in GI and we are very excited because she is now 11 months old and thriving. We have the go ahead to begin adding foods back in Cynthia’s diet. Here is a list of the foods that Cynthia took out of her diet to ensure that our daughter would stop bleeding. Note we don’t have concrete evidence that all of the following foods caused her to bleed but at the time it was decided that we were not going to play around with a 7 week olds gut.
Here are the foods:
-Milk
-Eggs
-Beef
-Dairy
-Soy (including soyabean oil and soya lecithin)
-Nuts
-Seeds
-Cocoa
-Legumes

Early on we were able to add fish and wheat back into Cynthia’s diet.

Our daughter grew and thrived while being breastfed, and eventually outgrew her intolerances by 12 months.

Our third child, a girl (E.) was born in the summer of 2009.  Since we had a history of MSPI, the dietician we work with recommended that Cynthia start a restricted diet at 33 weeks gestation.  After our daughter was born, we saw a few specks of blood early on (about 10 days old) and Cyntiha eliminated eggs and cocoa from her diet as well.  The blood cleared up and E continues to grow well.

UPDATE (12/10/09)  E. is now 10 weeks old, and we saw another speck of blood in her diaper yesterday.  We are monitoring her diapers closely, but have not seen any more blood since.  Cynthia has not removed anything else from her diet.

Update (November 8th, 2010) E. is now 15 months old and outgrew all her intolerances by 12 months old. We followed the same procedure as we did with our other two children; first Cynthia introduced the offending foods in her diet, and once they were deemed safe we slowly introduced foods to E’s diet.

Unfortunately we decided to intro a Walnut to E. because we were eating nuts and grandparents were also eating a lot of nuts around us. Cynthia just rubbed a walnut flake on E’s lip and within minutes her lip had a hive and swelled. To our knowledge this was her first contact with Walnut but we now believe that she must have had an inadvertent contact prior to this exposure. We just thought we had gotten over all our allergies and now it looks like she will likely have this one for life. Cynthia will do anything for her children and she will be this child’s protector and has already made our home nut and peanut free. She is also working on sensitizing family and friends around us re cross contamination and “may contains” in foods.