Tonight, as my husband had to work late, I spoke with another mom who has two children with food allergies. She is also a pediatrician. She shared her story and suggested that I bring my son to see an allergist at Mount Sinai, where she use to work, in order to get a second opinion. She said she may be biased but that her experience there has been that they are on top of new research and new clinical guidelines because there are so many research hospitals in that small area. She also recommended a specific allergist who I will now call Allergist #2. Our original allergist will be Allergist #1.
She also said that she did not mean to add more conflicting information to the mix but that one of her pediatrician friends saw their group after her 11 month old daughter had a reaction to egg. She asked if she should stop eating it herself to avoid exposure through her breast milk and was told no as long as your baby didn’t react to your milk, keep eating it.
This was another common denominator. Allergist #1 had brought up clinical studies at Mount Sinai back in December when I first started to frantically email him questions. Maybe, I should contact Allergist #2. What did I have to lose..nothing!
As for my son, he just kept on smiling…
Here is the email that I decided to send to Allergist #2 today…
I have been working with an allergist for almost two months now and doing a lot of research on my own regarding my son’s food allergies. While I have no complaints about our allergist at all, I have been looking for a second opinion about everything especially since I am finding a lot of conflicting, and rather confusing, information out there about food allergies. I received your information from a pediatrician who worked at Mount Sinai. Her former co-workers speak very highly of you. Since my son has already had a great deal of allergy testing done, my husband and I are just I looking for another doctor’s recommendations with it all for now. Do you meet with people who already have allergy blood work results and give advice without doing more testing? Regardless, I do plan to call and try to make an appointment with you in the near future.
Here is a brief summary of what has been going on with my son. Since his birth last May, he had eczema, spit up frequently, and had loose stool. All I was told by our pediatrician was just part of being a baby. Then, in October, he got his first ” random ” hive outbreak on his face. It lasted about an hour. This continued to happen through November maybe once a week. I brought him to an allergist who said it was just sensitive skin. However, in December he had his first taste of yogurt and it sent us to the ER in an ambulance. His face blew up and hives all over. He never stopped breathing thank God. Then, our allergist and pediatrician said based on a skin test that he was allergic to dairy, wheat, egg, tree nuts and peanuts but not soy and fish. However, at daycare he randomly got hives after eating a jar of organic food that he had eaten many times before. Then, our allergist orders blood work and it shows that he is allergic to oat and barley. So on December 15, I started a semi strict elimination diet ( I could eat some wheat like out to dinner and cooked cheese was okay.) However, on December 24 I started a strict elimination diet of oat, barley, wheat, dairy, eggs, tree nuts and peanuts. Then, he had a random outbreak in the car on way to daycare. So after more blood work, he is diagnosed with dermographism and food allergies of oat, barley, wheat, dairy, eggs, tree nuts, peanuts , sesame oil and SOY! I’ve eliminated all of these since. However, he won’t be retested until July now. He is set up for a food challenge of coconut milk on March 4 since he was only mildly allergic to that. (.6) I am searching all over for advice, experiences, and talking to dietitians and lactation consultants to try to figure out if and what and how I can add items back into my diet in my son’s best interest of outgrowing all or most of these allergies. Does exposure through my breast milk help with some allergens? Do certain allergens or items not pass directly through breast milk after being processed? Or do I need to do a strict elimination diet of all allergens until he is retested since he was tested through blood? Most importantly, I want to make sure that I am doing everything possible to best help my son and, if possible, to increase his chances of outgrowing these allergies. Sorry this was a long email. I’m trying to gather as much info as possible and you were recommended to us.
Thank you for your time!
I am feeling hopeful and we both smile on…
FEBRUARY 12. 2014
Allergist #2 has a cancellation and we get an appointment. We receive a lot of information! Sooooo much to process. I post on February 17 to my breastfeeding support group.
My son just smiles and smiles…
FEBRUARY 17, 2014
This is just an update on everything.. Feel free to skip over and not read since I’m quite wordy. I often think of starting a blog. Ha … I just want to share the great amount of information that I am learning or at least some of it in case anyone ever needs it…
My little guy is great and gaining wonderfully. He about 20 pounds, a long way from his 6 lb 15 ounce self at birth. I’ve been reaching out to a bunch of moms and dietitians and anyone who knows or experienced any type of food allergies. In doing this, I was trying to find common denominators to figure out how best to help him. Our current allergist who we love mentioned Mount Sinai having up-to-date research back in December and sent me a link. Then, when I spoke with a mom/pediatrician who use to work at Mount Sinai, she said her friend was breastfeeding through the allergies of egg but their doctor said to continue eating eggs. So she recommended that I speak with a highly recommended pediatric allergist at Mount Sinai. Therefore, although I felt like I was ” cheating” on our current allergist, I emailed her on Sunday with our son’s “story” and she emailed back Monday and said she could not tell recommendations without seeing him ( obviously ) but to definitely call her office. When I called on Monday, she was soooo booked up and I couldn’t get appointment until April 3. So I made that appointment and then on Monday night I was like what the heck (I have nothing to lose ) so I asked her ( knowing she could not legally tell me over email ) if what I was doing in the meantime was best for him. Then she emailed Tuesday morning and told me to come in there was an opening Thursday.
So this is what she said when we met with her this week.
The doctors at Mount Sinai don’t recommend pulling food out of moms’ diets unless he reacted to her breast milk. (Back in December, I pulled all allergens from my diet because my allergist recommended that.) With that being said, she would recommend I avoid dairy since he had an actual reaction to yogurt and that number is highest of all his food allergies. Avoid eggs if directly eaten but not baked in something. Avoid peanuts and tree nuts and sesame. However, she would suggest I gradually add wheat, oat, barley, eggs baked in products, soy, and sesame back into my diet now.
She said based on his blood work numbers they are all low enough to outgrow. Sometimes between ages 1-3 the numbers get higher if it’s a true allergy. Also, based on blood work, he has a dairy, egg , and peanut allergy but given his age and the numbers, she is not certain the others are allergies (wheat, oat, barley, soy). Also, numbers mean different things for different foods. For example, wheat is a 6 but apparently that is low for wheat. However, a 6 for peanuts is a true allergy for now. For those who aren’t familiar with allergies, these numbers can go over 100. This may be very repetitive for those of you who know allergies.
Our current allergist, Allergist #1 wants updated blood work done in July at 14 months and a coconut milk challenge on March 4 (ugh! Sooo soon and I’m terrified) and have him start coconut milk at one year old if no reaction to food.
However, this Mount Sinai allergist would not do a coconut milk challenge in March but instead would retest skin and blood at 12 months. Then, if I stop breastfeeding at 12 months, the doctors there recommend starting on a formula. Before starting him on the hypoallergenic one, they would want a food challenge for soy because a soy based formula would be a better option for him from age 12-18 months. Then, they would do a baked egg challenge and wheat, oat and barley, etc – the lower allergies going first.
She also said a probiotic would not hurt to start him on. We have not started since we introduced chicken and wanted to gradually add to his diet, but plan to this week.
We emailed our current allergist about all of this and our visit, explaining why we did this. In addition, we do plan to continue to work with him. In the meantime, he too agrees it is reasonable to start adding in certain things to my diet like wheat. However, I’m scared and have not done so yet.
Thanks so much for listening/reading my rants on here. It’s surprising how many people close to me are quite critical about it all and don’t understand why I have decided to continue to breastfeed, or at least for now, despite it all. It has really been an eye opening time for me. Anyways, that is why it means a lot to have you girls to turn to for that support and confidence to continue on this journey. Stay warm! I miss you guys and hope we can make an event soon! ❤️
FEBRUARY 28, 2014
I almost ordered regular pizza (minus the cheese) tonight. However, then as the evening crept up, I started to doubt that decision. I was told by Allergist #2 that it was okay to do. However, I only reintroduced wheat bread into my diet one time so far and panicked. Because I have no idea what is the best thing to do, I must trust my gut. I think it is best to wait until after Wednesday. Then, depending on everything we learned that day, maybe next Friday, I will reintroduce regular pizzeria ordered pizza without cheese to my diet. (Of course still free of soy, egg, and milk)
Wednesday = our first food challenge; It will be the coconut milk challenge with Allergist #1.
This is how it works: We bring the coconut milk. He can’t eat after 6 am because he needs to be hungry. At 8:30 am, they give him a taste and wait to see if there is any initial reaction. Then, if not, they give more. Then, we wait for two hours in their office. If all goes well, I can bring his skipped breakfast food and nurse him. When we leave, we monitor during the day. He can’t be on his Zyrtec for four days prior. He also can’t have a bad cold or they won’t do it. He has a cold now and my thoughts about that are if he is sick that day, then this food challenge was happening too early and the cold was saving him the experience until his body is ready. My husband and I have to take off from work. My pediatrician even mentioned that she puts some moms back onto maternity leave when there are several food allergies because of how time consuming they are. I guess I will be spending a lot of my summer doing these.
Like I said to one of my closest friends tonight about it, “It’s scary and stressful but I’m trying to look at it all as the first step to conquering food allergies. I know that this may sound cheesy but if it doesn’t go well I refuse to say we failed. Instead, it’ll be that his immune system just is not ready yet. And that is 100% okay. But I believe he has outgrown some and will continue to outgrow more by 12 months of age.”
Every time a negative thought or fear sneaks into my mind, I come back at it with another way of looking at it such as what I said above. It really has been a month and a half of retraining my brain to think differently….
So even though it is just homemade pizza again tonight for this mom, I smile because he continues to smile on as he now also is starting to cruise around with his walking toy….