We've come so far!

Our lives have changed drastically. I have had both of his older brothers tested for food allergies. They both have IgG food allergies (delayed type). They are both on a dairy and wheat/gluten free diet. They are both extremely limited on soy & corn as well. They have both improved on these modified diets. My oldest sons' immune system is so much stronger (he missed 18 days of school in the 2006-2007 school year, he only missed 4 days of school in the 2007-2008 school year). My middle sons' mood swings have lessened dramatically and his digestive tract is in much better shape. We're still a work-in-progress :)

As I reflect on the last 2+ years I am shocked at all we’ve been through and how much we’ve changed. Some of the biggest challenges I’ve faced has been with some family & friends not fully understanding or supporting what I’m doing. It’s so frustrating to be making physical sacrifices for my children’s well-being and being criticized for it. Also, the TOTAL LACK of knowledge & support in the medical community. Our third son was seen by his pediatrician as well as a pediatric gastroenterologist and a pediatric allergist. None of these doctors offered the answers or support we so desperately needed. We found some online support groups and learned tons from other mother’s dealing with the same problems.

We had the most success with:

• elimination diets & food diaries
• probiotics
• digestive enzymes
• NAET treatments
• BioSET treatments

The positive side is that I’ve learned & grown so much that I would never trade this experience for anything. Our third son is such a wonderful addition to our family, he has taught us and made us grown in ways we couldn't have imagined. We consider him a special gift from God. The other huge positive is that my children eat EXTREMELY healthy diets now, and they enjoy it too! You know you’re doing something right when your eight year old begs you to have "one more piece of lettuce".

Alternative Milk Success!

At 18 months we started experimenting with an alternative milk to begin to transfer him to, at this time he was still breastfeeding 5-6 times per day in addition to his solid foods. Interestingly, his weight gain was still extremely slow, he weighed 17 ½ pounds at his one year check-up and finally crossed the 20 pound mark at his 18-month check-up. As far as the alternative milk is concerned, we knew we would be adding nutrients to help make them suitable for a young child. He was still reacting to rice milk at this point, so we decided to use Vance’s Dari-free potato based milk. I planned to add a small amount of aloe vera juice & flax seed oil (for fat) to the milk. So I started by pumping breastmilk and adding aloe vera & flax seed oil to the breastmilk. After a couple of weeks of him tolerating this well, then I started adding 1 oz. of Vance’s milk to each bottle and slowly increased that. He seemed to tolerate this well, so I started feeding him 1-2 bottles per day of this, while continuing to breastfeed for the other feedings.

Our youngest turned two in October of 2007. He was still doing fairly well, with continued BioSET treatments and the digestive enzymes. His weight gain was still slow, he was 22 ½ pounds at his 2 year check-up (5 pounds gained between ages 1 & 2). He was very active and was meeting all developmental milestones on time. He still has trouble with his immunity and seems to catch every little thing that goes around, this often then travels to his ears. We continue to treat this naturally to help avoid antibiotics (which wreak havoc on the digestive tract).

At age 2 1/2 we found an alternative milk substitute that we were the "most" comfortable with. He tolerates hemp milk which is derived from hemp seeds, it is a natural source of Omega-3 fatty acids and has a decent amount of protein & fat (similar to cow's milk) and is much lower in sugar than rice milk. We decided to fully transition him off his small portion of breastmilk and move him to rice milk for cooking and hemp milk for drinking. His diet has expanded so much. He eats a fantastic variety of foods, but we still strictly avoid milk, gluten, peanuts, artificials/preservatives, tomato, chocolate. He tolerates corn & soy in VERY small amounts.

17 Months Old: Rotavirus Nightmare

At 17 months our youngest son got rotavirus. Rotavirus is bad at anytime with any child, however it becomes a "nightmare" when you have a child who already suffers from gastrointestinal problems and struggles to gain weight. He was sick with vomiting, diarrhea, and very lethargic for about 4 days before I took him to the doctor. She suggested I take him to the ER for a few hours of IV fluids. This turned into 2 days of admitting to the hospital where rotavirus in his stool was confirmed. This was such a challenge as he was still breastfeeding, so the hospital had to feed me with my limited breastfeeding diet (free of peanuts/walnuts, shellfish, milk, wheat/gluten, soy, corn, tomato). Needless to say they struggled to feed me and basically just brought me salads and fresh fruits. I was starving & exhausted by the time we left. Sadly, our son lost two pounds through this experience. Two pounds that he didn’t have to lose. This was a devastating blow to have a child who had already suffered so much to go through the rotavirus experience.

BioSET Treatments. Now we're getting somewhere!

After our youngest turned one, he again reached a point where he seemed to just stall out. The food trials weren’t progressing, he was only tolerating pears & squash in baby-food form. When I tried to give him diced foods (as opposed to pureed foods), he would react with increased fusiness and mucous in the stool. He started to get sick often, and he started to get ear infections too. Since I knew that antibiotics were extremely hard on the digestive tract he was only treated for one ear infection with antibiotics. After that we learned to treat them naturally with garlic/mullein ear drops, massage to help drain the ears and monitoring with an Ear Check device.

At 16 months I had reached another point of extreme frustration. His diet wasn’t expanding, and he wasn’t gaining weight well. I decided to try BioSET, which is very similar to NAET, but is much more in depth and utilizes detoxification & digestive enzymes. This proved to be extremely beneficial. My son tolerated the enzymes well and they helped us greatly expand his diet. With the enzymes he was finally able to tolerate diced forms of foods (as opposed to just pureed baby foods). We also expanded his diet a lot, we added avocados, carrots, brocolli, cauliflower, sweet potatoes, white potatoes, peaches, bananas, apples, grapes, blueberries, turkey, chicken, beef.

Alternative Treatments, A Step In The Right Direction :)

After returning from our trip things were still tough for our little one. His stools were generally bad and very mucousy. He didn’t seem to be tolerating solids well. He was waking up almost nightly and much more fussy in general. I was feeling extremely discouraged and wasn’t sure which way to turn. I heard from a friend about NAET (Nambudiprad’s Allergy Elimination Technique). It was an alternative treatment form that was supposed to be able to detect allergies using muscle response testing (MRT) and treat or clear allergies using an accupressure technique. It was non-invasive and non-drug based. I figured I had nothing to lose and decided to give it a try.

The practitioner we used was a Chinese medical doctor with a degree in Nutrition, a licensed Acupuncturist and trained in NAET. At 9 months old we started NAET treatments. Through MRT she found our youngest son was allergic (sensitive) to eggs, calcium, sugar, corn, chocolate, peanuts, walnuts, shellfish, whey, milk, lactose, cheese, wheat, gluten, tomato, onion, vegetable mix, avocado, melon, citrus, fruit mix, modified starch, dried beans, fluoride, avocado, stomach base, food additives, pollen, fire ants. He received allergy clearing treatments for brain/body function, egg, calcium, sugar, corn, peanuts/walnuts, whey, stomach base, food additives, milk, lactose, cheese, wheat, gluten & fruit mix.

During this time his sleeping habits improved, his mood improved, he started to play some independently (rather than just clinging to me), his stools improved, his teeth started coming in (NAET practitioner said this is common after the calcium treatment). While the NAET treatments were not a cure-all, things definitely improved, and the insight into what specifically he was intolerant of was priceless.

I also started NAET treatments where I learned that I had food allergies (probably where the children got theirs from) which had been contributing to a decade of Fibromyalgia suffering. My middle son also started NAET and was also found to have food allergies, most notable milk, wheat/gluten and food coloring. So here the change began to spread through the family. My middle son at the time was 3 ½ and had severe jekkyl/hyde mood swings and generally had loose stools.

Are We There Yet?? No, Not Yet

During this time I maintained a food diary to help determine what foods were bothering my third son. I also tracked his spitups, poops (with description), naps, nighttime sleep, crying and any medications/supplements that myself or my son was taking. At 4 months old he started taking a multivitamin with Iron to help combat any blood-loss in the stool. Also, I started him on 1/8 tsp. probiotics twice a day to help heal his digestive tract.

At 5 months old I stopped the zantac for the reflux, he was still having some reflux but I had done some research that indicated acid blocking medicines can worsen food intolerances, because they block stomach acid production which is the first tool in digesting food. Ironically after stopping the zantac his reflux cleared up completely!

There were several times in the process that I reached the point that I just couldn’t do it anymore. I was struggling to maintain my home (dirty dishes, dirty floors, piles & piles of laundry). We tried him on several formula tests, all of which he failed. We tried Neocate (6 wks. old), soy formula (4 months old), Alimentum ready-to-feed (5 months old), Elecare (6 months old). After failing all of these formulas I knew that breastfeeding was my only choice. This helped to boost me up and even though it was difficult I had the inner strength to maintain it.

When he turned six months old, I tried him on rice cereal. He did not tolerate this well, he became very fussy and his stools increased and turned runny & stinky. From there we moved on to several new foods. He seemed to tolerate squash, pears, bananas & apples. He didn’t tolerate carrots, sweet potatoes, millet or peaches (fussy, stools very acidic & full of mucous).

I had heard some studies of digestive enzyme use for the breastfeeding mother to be beneficial. I was afraid to try anything too "strong" since my baby was apparently extremely sensitive, so I tried papaya enzymes for about a month without noticing any benefits.

When he was eight months old, he seemed to have a relapse of reflux. He started fussing a lot and became quite inconsolable. We weren’t sure if he was teething, or reacting to the new foods he was eating. We started giving him 1/8 – 1/4 tsp. Mylanta in the evenings for a few weeks to help.

During this time, we travelled to a family wedding for 3 weeks. This was a rough trip for our third son, he failed many new food trials and seemed to scream & not sleep well for much of the trip. Plus he had blood in his stool numerous times (something we hadn’t seen for a few months). Obviously this was also a rough trip for me, very little rest & relaxation. The only side benefit is that my family was able to see first-hand what I was actually experiencing. There’s something about looking at a bloody diaper that tends to help people understand the seriousness of the situation. Plus others were able to see just how difficult it was to shop & prepare my food for my restricted diet while trying to still care for 3 children.

Total Elimination Diet

Things continued for about a month during which time our third son was still quite irritable, his stools still looked bad and periodically had visible blood in his stool. While I concluded that things were improved on the dairy/soy/tomato/chocolate free diet, there was still something in my diet that was bothering him, but what? I decided to go on what is called the Total Elimination Diet (TED). This diet allows a breastfeeding mother the chance to allow her child’s gut to heal and to determine what specific foods are bothering her little one. The diet consists of eating only rice, millet, potatoes, sweet potatoes, squash, zuchinni, pears, lamb, turkey.

I was very intimidated by this diet, but from my online support group I knew of many other mothers who were on the TED. They gave me courage, and I knew that I could do it too. I started this diet and found it to be quite difficult, I was eating constantly and never felt full. When I wasn’t eating I was either shopping for food or preparing food. Not to mention I still had three sons to care for & a house to maintain. These were some dark days. I maintained it for about a week and then started to add things in one at a time for 4 days each to "test" specific items. I used this diet to test specific foods, my goal was to determine if my baby could tolerate soybean oil, wheat, eggs, chicken, beef, oats, corn & soy formula (to confirm that soy was truly a problem). He seemed to fail on wheat, eggs, oats & corn. He failed horribly on the soy formula (which also is a huge percentage corn syrup solids - yuck!).

Overall I was on the TED for 2 months, then switched to a more "modified TED". Before the TED I was already 7 pounds below my pre-pregnancy weight (just 10 weeks postpartum). After the TED I was 13 pounds below my pre-pregnancy weight. I resumed a diet with the TED foods as my core foods but added in other foods in moderation including oats, wheat & corn.

The Immunization Factor

At 8 weeks old, he received his 2 month immunizations. These were very hard on him. He spent the week being very fussy, about 4 days after his shots his stools had so much mucous it was gelatin-like. The 7th day after his shots he had visible red blood in his stools. The pediatric Gastroenterologist had stated that a lot of protein intolerant babies also have what is called Lympho-nodular hyperplasia, which is essentially swollen lymph nodes in the colon. Anytime their immune system is challenged (such as when they are sick or when they are immunized) the lymph nodes tend to swell and the tips can slough off and cause blood in the stool. So he seemed very unconcerned with his response to the immunizations and acted like it was expected. However, I wasn’t comfortable with his reaction.

He continued to react each time he was immunized. I think the burden on his immune system was just too much as food allergies already place a HUGE burden on the immune system (since 70% of the immune system lies within the digestive tract). Here again, in hindsight, I wish I had postponed immunizations until he was a bit older and his system was better prepared to tolerate them, or even gone on a modified immunization schedule where the immunizations would have been spread out.

Our Third Son Joins Us.....The Journey Begins

On October 27, 2005 our family was blessed by the birth of our third son. His birth was a bit complicated as he was delivered frank breach. The doctor didn’t realize he was breach until after my water had broken and I was dilated to 9 ½ cm. However, despite the complicated birth, he was a beautiful healthy baby boy, checking into the world at 6 pounds 14 ounces.

The first 3 weeks after he was born, things were wonderful. He was such a sweet baby who loved to be held. He was peaceful and slept well. He was exclusively breastfed and was gaining weight well. About 3 weeks in some symptoms started to develop.

• He started to spitup profusely with each feeding.
• He developed a diaper rash that wouldn’t clear up, no matter what remedy was tried on it.
• His stools became very loose and full of mucous, he would have 5-6 stools per day.
• He would wheeze after nursing.
• He had an eczema rash on his skin (particularly behind his ears and on his scalp).

• He had red eyes and a plugged nose.
• He would only nap for 15 minutes at a time, and then would awake screaming.
• He had to be held constantly and would scream most of the time he was being held.

We saw the pediatrician several times between weeks 3-6. At first they started him on Zantac to help control the reflux. At 4 weeks old, I removed tomatoes from my diet, things improved slightly. At 5 weeks old he had an incident with projectile vomiting (after I ate ice cream the night before). Finally at about 6 weeks old the pediatrician tested for blood in the stool, microscopic amounts of blood were found. The pediatrician suggested that it might be a milk allergy. She suggested that all obvious forms of dairy be removed from my diet. This really overwhelmed me as I couldn’t imagine my diet without dairy as it was so embedded in. However, I did it and found that it wasn’t too bad, at this point I definitely wanted to help my son (I was seriously considering dairy-free formula at this point).

I replaced cow’s milk with soy milk, symptoms worsened. At this point the pediatrician contacted a Pediatric Gastroenterologist. He suggested that our third son be placed on an amino acid based formula called Neocate. He said that we would have a "new" baby after 5 days. So we started on Neocate while I maintained my milk supply by pumping. This was very exhausting to be pumping 6-8 times a day & bottle feeding 6-8 times a day. Things did not improve, the screaming worsened. During this time I decided to remove ALL dairy, soy, chocolate & tomatoes from my diet. At the end of 5 days it was obvious that Neocate was not the answer and we went back to breastfeeding with me on a strict diet. Things were much improved. He started napping better, the diaper rash pretty much cleared up. The stools improved a little, and some of the screaming stopped. We were finding a few answers....but it was just the beginning.

How It All Started...

If you knew us before the birth of our third son (Oct 2005) you would have classified us as a family eating a "typical American diet". We enjoyed pizza, lasagna, hot dogs, milk, ice cream, yogurt, whole wheat bread. Not that everything we ate was junk, we did try to eat from all four food groups: the milk & cheese group, the grain group, the meat/fish/bean group, and of course, the butterfinger group (ha ha). The closest thing to great nutrition that we had was we were a part of a Fruit/Vegetable Co-Op where we had a large box of a variety of fresh fruits and vegetables delivered to the house every two weeks.

Now, with hindsight being 20/20 I can clearly see that although all seemed well on the "typical American diet" there were actually many RED FLAGS being thrown, I just wasn't tuned in to the right referee.

The main red flags were:

• Myself - Fibromyalgia (fatigue, joint pain, brain fog), weak immune system, seasonal allergies
• Oldest Son - weak immune system (missed 18 days of school in 1st grade :( ), seasonal allergies, intermittent asthma (particularly after being sick), occasional loose stools
• Middle Son - Jekyll/Hyde mood swings, speech delay, predominantly loose stools

So there we were, blissfully going through life. We recognized we had a few troubling symptoms, but they had all been addressed by doctors and the doctors advised us that all was well.

And then.......on October 27, 2005.......everything changed!