Sunday, May 9, 2010

Our Wakeup Call: The Baby That Made Us Crunchy

Soon we were settling into the routine of parenting an infant and a very active toddler. We were seeing some subtle signs of an autism spectrum disorder in J., but at the time we didn't recognize them. We just saw him as a very active, high needs toddler. S. appeared to be growing and developing as expected, at first. However, we did notice that most of his stools were green and loose. Still, S. was gaining well, he was 11 pounds at his two month checkup, which was 4 pounds over his birth weight. I just thought that the green stools were caused by oversupply. I always tended to produce more milk than my babies could keep up with.

When S. was about 3 months old, the whole family was sick with some type of cold or virus for weeks. S. was sick briefly with some nasal congestion and a low grade fever. I noticed when he was sick that he seemed rather limp when I picked him up, but he was alert when he was awake and the floppiness lasted less than a day. I ended up with a severe sore throat progressively got worse until I had a lot of difficulty swallowing. I went on antibiotics at the point where I was in a near state of panic every time I needed to swallow, and then my symptoms improved rapidly. S. actually did better when I wasn't eating much, and we briefly saw his stools become more typical for a breastfed baby. But it was short lived and he went back to green stools as soon as I was eating normally again.

I think I really started to wonder when S. was getting close to 4 months and he wasn't holding his head up. If he was on someone's shoulder he would lift it partially, but his head would be tipped to one side or the other. I thought he was getting enough tummy time because I had been putting him to sleep on his tummy since he was about 3 weeks old. He had been fussy on and off since his phototherapy at 10 days of age. A friend of mine with 5 children had told me she always put her babies to sleep on their tummies and they slept much better, so we gave it a try and it did seem to help him sleep. But it didn't develop his neck muscles like I would have expected. Here was S. getting close to 4 months, and he wasn't anywhere near ready to go in the exersaucer.

S. had a cold when I brought him in for his 4 month checkup, and was very irritable. The pediatrician was sure he had an ear infection, but decided after looking in his ears that he did not. I just thought S. was hungry. Our doctor said he was not going to give any shots that day because of the irritability. To make matters worse, the doctor forcibly detached some adhesions that had formed from S.' circumcision. (Ouch!) Without discussing this with me first, I might add. Then Dr. W. was finished with his exam and said he would be back shortly to talk with me. I nursed S. and he calmed down.

When the pediatrician came back, he told me that S. had "done nothing for fine or gross motor development since birth." He needed full support for his head and neck when placed in a sitting position, and he was not bearing weight on his legs when held up to stand. Needless to say, this was a shock. He told me to put S. on his tummy more often and that he would recheck him in 2 months. I was a little concerned that S. had not yet doubled his birth weight, but he had been gaining steadily since his 2 month checkup and was now 13 pounds 8.5 ounces. I called the Birth to 3 hotline when I got home, and set up an appointment for an developmental evaluation. I remember giving S. some infant tylenol for the irritability shortly after the appointment. That night, we saw the first bloody stool. I called the doctor but he didn't seem concerned, thinking it was caused by a rectal fissure.

Looking back over my notes, it seems like we either brought S. back to the pediatrician because of concerns or he must have had a recheck because I have him down as finishing a 10 day course of antibiotics for an ear infection just before 5 months of age. At 5 months he was 14 pounds, 5 ounces, but I was a little concerned because he had dropped to around the 10th percentile for weight. He received the shots that the pediatrician had delayed at 4 months due to irritability.

The evaluators from Birth to 3 came out to the house when S. was almost 5 1/2 months old. They are required to have two disciplines evaluate a child's development. I think that we had an OT and an SLP for the evaluation. S. scored at the level of a 2 month old for gross motor development, and 3 months old for "cognitive skills." He wasn't yet reaching for my face when nursing, or for objects. His speech development was considered age appropriate. We would have an occupational therapist come out to the house once a week, though it took a month for them to start the visits. I was really glad that I had called as soon as the doctor had noticed the problem and had not waited for a recheck. I was really worried about why S. was so far behind. I wondered if he had cerebral palsy or so other serious problem. I remember seeing a very disabled older child with his mother in the store, a big boy sitting up in the grocery cart, and wondering if that was going to be my child's future. I really had no idea what to expect.

The 6 month checkup found S. at 15 pounds 1 ounce, still at the 10th percentile. He had just started with birth to 3. My concerns which the pediatrician blew off: occasional bloody stools, irritability, arching his back, and flattening on the sides of his head. Shots were given despite S. having thick fluid in one ear and a cold. I didn't realize it at the time, but the shots should not have been given this day. Not only because of the cold, but because he just had a round of shots at 5 months and they should have been given 2 months apart. This would be the last time I would allow vaccines to be given to S.

I brought S. in to the doctor about a week later because of irritability, to have his ears checked. S. did not have any signs of an ear infection. We saw a different pediatrician and I asked her for her opinion on S.' developmental delays and bloody stools. He also seemed to have persistent nasal congestion. She suggested eliminating dairy from my diet. I failed to see any difference after 1 month, despite careful elimination of all forms of dairy. I was careful not to replace dairy with soy, whenever possible, knowing that there is often cross reactivity.

We cautiously tried introducing some foods to S. but didn't have much success. With J. I had made homemade cereal by grinding rice to a fine powder before cooking it. With S. it seemed like the rice gave him excema. We tried oatmeal and it gave him diarrhea. We had one diaper with obvious blood tested, and indeed, it was blood. A quick exam and this was shrugged off as a rectal fissure, even though the baby was having loose stools that were unlikely to produce a fissure. The pediatrician was skeptical of homemade cereals and suggested packaged baby barley cereal. I tried it, against my better judgment. Within a few days, we saw larger amounts of blood in his diapers. We decided to stop trying solid foods for a while and made an appointment with a gastroenterologist that was known to be breastfeeding friendly.

When S. was 7 months he had his appointment with the gastroenterologist. There was a longer wait for the doctor that was "breastfeeding friendly." While we were at the appointment, S. took frequent snacks at the breast, and in between feedings he would arch his entire body backwards, almost as if he were trying to look at something behind him without turning his head. I would face him in the other direction, and then he would arch again. The doctor prescribed pancreatic enzymes for me and pepcid for S. He told me that the enzymes should "make the breastmilk like hydrolyzed formula." At the time I didn't know it, but there are other enzymes available over the counter that are actually more effective than pancreatic enzymes. The OTC plant based enzymes are less likely to be destroyed by the stomach acid and they are available in specific formulations to aid digestion of a wide variety of foods.

At the time I went with what the doctor said, not having a better source of information. But S. did not improve. He quickly shifted from having an occasional bloody stool, to having them every day and in almost every diaper. Now granted, it wasn't a large amount of blood, but it certainly was a red flag that something wasn't right. S.' diapers had an unusual odor, which almost reminded me of formaldehyde. I discussed the problem with the doctor and even he wavered. "Well, you have given him almost 9 months of breastfeeding.." I expressed how important it was to me to continue breastfeeding and asked if there was anything else I could try to determine what foods S. was reacting to.

So the doctor suggested an elimination diet, and had his dietitian give me some instructions. For 21 days I consumed only chicken, turkey, rice, rice milk, rice dream "ice cream", apples, potatoes, canola oil, sugar, and salt. I had already been losing weight from the dairy elimination, but I continued to drop the weight, down to about 20 pounds below my pre-pregnancy weight. I lost all the weight I had gained since high school, plus an additional 5 pounds. Now this might sound like a good thing, but I was still hungry all the time and certainly did not feel healthy. In addition, I now believe that rapid weight loss in the breastfeeding mother can cause her to shed more toxins in her breastmilk as she loses body fat, in addition to worsening any existing nutritional deficiencies in both mother and baby.

I called the doctor again to discuss the lack of improvement in S. He still continued to have bloody stools frequently. However, my breastfeeding friendly doctor was suddenly unavailable. On a leave of absence, I was told. We made an appointment to see his partner, and S. was examined by sigmoid colonoscopy at 9 1/2 months of age. On the screen, I could see tiny little ulcerations all over the inside of his colon. Not exactly the rectal fissure that our pediatrician insisted was the cause. Some small tissue biopsies revealed large numbers of eosinophils, lymphoid nodular hyperplasia, and other abnormalities. The gastroenterologist said there was no way to continue to breastfeed safely. He told me to feed Neocate only for several weeks and then begin to introduce solid foods as well.

The dietitian gave us a Neocate sample, and I dropped off our prescription at a local pharmacy to get more cans of the formula powder. I did, however, immediately call our IBCLC, who also happened to be a board certified pediatrician, for a second opinion. She suggested that we try the formula for a week and in the meantime, she planned to contact a GI specialist outside our area for another opinion. The specialist was difficult to reach, and we just plain had a hard time getting any information about safely transitioning S. back to breast. It was heartbreaking hearing him cry when he wanted to nurse, especially when he first tasted that horrible formula. I cried a lot too. I missed nursing my baby. But I continued to pump and I froze the milk. I wasn't ready to give up.

My son initially gained about a pound on the Neocate, and we did not see visible blood in his bowel movements, but they still continued to be loose and mucousy. S. was still reacting to any solid foods that we tried to introduce. He started to catch more colds and viruses, seeming to be ill with a fever approximately once a week. After a while I began to notice a pattern. Every time I gave him infant Tylenol, he had a lot more loose stools and even traces of blood. When I stopped giving him the Pepcid suspension, I saw a noticeable improvement in the consistency of his stools. He had been reacting to something in these liquid medications.

I called a local university that had a low cost clinic for naturopathic students. I talked to the receptionist to discuss the problems my son was having and ask if any of the naturopaths at the school might be able to help. Fortunately one of them was a DAN! doctor and she was very willing to see S. We coordinated with one of our doctors to order her requested labwork so it would be covered by insurance. I also paid out of pocket to have stool samples tested. We found out that S. had NO bifidobacterium in his stool, so that was our first intervention. We got a 4 strain bifidobacterium probiotic that was free of all common allergens. It probably shouldn't have been surprising that S. did not have the beneficial flora he should have, given that I was treated in labor with antibiotics and again when he was just a few months old, plus S. was also treated for an ear infection once.

We also added some other supplements. S. was, not surprisingly, not able to tolerate DHA (a lot of babies can't) but he did very well with larch arabinogalactan, slippery elm, and a little rice protein powder. The slippery elm was actually the first food that he tolerated, at just over 1 year of age. It had the texture of snot, but he loved having something to eat off a spoon. It was also a convenient way to give the other supplements, as they mixed well with the "slime".

With the supplements and also avoiding any liquid medications whenever possible, S. began to have more normal looking stools. Around 1 year of age, I started challenging him with small amounts of breastmilk mixed with his Neocate. He tolerated the breastmilk with no problems whatsoever, so I was able to transition him to 100% expressed breastmilk in just a few days. He was very enthusiastic. I could tell because he was drinking significantly more breastmilk than he did Neocate. I'm sure he was just thrilled to be drinking something that tasted good. But, he would not latch on and nurse directly and my supply had suddenly dropped by about 50%, most likely due to the stress of trying to keep up with S.' daily intake. Since my goal was to transition him back to breast, I wanted to be producing close to what he was taking in each day.

While I was happy that S. was back on 100% breastmilk, I was saddened by the fact that he would not be able to have cake on his first birthday. It was just too many potentially allergenic ingredients to take the chance. At the time, he actually had not yet tolerated any foods, though he would soon have his slippery elm. I had a little party for S. with family, and it was very awkward for us to celebrate with cake without the birthday boy stuffing some in his face.

I was able to get S. back to breast at 13 months of age, after several months of failed attempts at getting him to latch on. We worked with a wonderful holistic IBCLC who gave us many useful tips and strategies in addition to helping me to rebuild my supply. I paced his bottle feeds by using slow flowing newborn nipples, sitting him upright, and holding the bottle at an angle. I fed him while skin to skin near my breast. We did lots of skin to skin time between feedings, and I carried him in a sling. One day at the IBCLC's mother's group, I attempted to latch S. while wearing a SNS. Some milk dripped from the tubing and, to my surprise, he just latched on. And once he did it once, he easily switched back to full nursing. So S. was nursing again and we were soon cautiously adding new foods.

My holistic IBCLC also strongly encouraged me to look at my diet and consider making some changes. I added a few supplements, including cod liver oil, both for myself and my sons. The whole family, in fact, my husband started taking it too. I read a few books that I found quite enlightening. Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, The Maker's Diet, by Jordan Rubin, and Nourishing Traditions , by Sally Fallon, president of the Weston A. Price Foundation. Although the recipes in Nourishing Traditions are decidedly underwhelming, the lengthy forward to the book does a great job describing what a healthy diet looks like, and it's not what the vast majority of health experts recommend. Worth reading, or at least checking out the WAPF website. GUT AND PSYCHOLOGY SYNDROME, by Dr. Natasha Campbell-McBride is also a worthwhile read, considered more up to date than Elaine Gottschall's book.

Developmentally, S. was making progress. At 9 months, he could babble "mama" which meant "feed me"and he got into a sitting position by himself in the crib. He began crawling at a 9 1/2 months. At 10 1/2 months he pulled himself up to a stand in the crib. At 11 months he was saying "mama" just for me, "baba" and giving a toy. Over the next 6 months or so he added a few new words here and there. He walked by 17 months.

But S. wasn't out of the woods just yet. Several months after his first birthday he was still barely 18 pounds. To make matters worse, I was ill with a violent stomach bug and my milk supply dropped dramatically. My son was well below the 5th percentile on the growth chart, even the one for breastfed babies. We went to the gastroenterologist for a follow up visit. By then, the breastfeeding friendly one was back. He was quite supportive and suggested adding more foods, which I was was agreeable to but nervous about possible reactions. S. was getting mostly fruits and vegetables, but he needed foods with a higher calorie content. We were feeding avocado but we decided to try organic yogurt, which he fortunately tolerated.

We worked with another naturopath that suggested buckwheat and sprouted quinoa, so we were able to make some gluten-free porridge for S., and he tolerated those very well. Soon S. was also eating grassfed beef and free range chicken. Oh, how he loved meat! I made him a little meatloaf regularly, using gluten free ingredients. I loved to watch him eat bits of avocado and meatloaf with his bare hands, and knew that this was a great thing for him. Eventually we got to the point that we were all eating the same meal as a family, but for quite a while I make S. his own meals. I would make more than one serving at a time. I think he was about 2 1/2 before we introduced gluten and around that time was probably when I started making just one meal for the whole family.

We also took S. to a craniofacial surgeon when he was 10 months old because of the flattening on the sides of his head. Although we were able to rule out craniosynostosis by CT scan, we were still concerned that the flattening of the skull might be affecting him. We learned about an alternative treatment called craniosacral therapy. This is a massage-like technique. It has some parallels to chiropractic, but it is very gentle. We worked with a chiropractor that knew the technique, and later a naturopath, but eventually we found an OT whose skills were superb and we saw visible changes in the shape of S.' head and face. Her talent is exceptional and she continues to work with S. periodically to this day. We also found CST to be very helpful for S.' trouble with fluid in his ears. S. also has pectus excavatum, which has improved as well. I believe both of these conditions can be prevented in many cases, by optimizing maternal vitamin D status during pregnancy and lactation.

Around the same time that S. was diagnosed with the allergic colitis, we started to realize that our older son was showing signs of sensory issues. The OT that saw S. regularly through the Birth to Three program suggested I read The Out-of-Sync Child and many of the concerns that I had about J. started to make sense. We would later learn that J. did not just have sensory processing problems, he actually had Asperger Syndrome. (More about J's story here.)

But this was when my husband and I started to really take a step back and wonder how things went wrong. We took a long hard look at our diet, our choice to vaccinate the boys using the AAP recommended schedule, even the products we used to clean our home and wash our clothes in. I had a lot of regret, because many of the choices had been mine to make. Something had to change, we couldn't trust the doctors to have all the answers and we had to seek out some of our own.

I can't say that we have "arrived," but we have made a lot of changes and we are living and eating healthier than we ever have. We are working to help our children make healthier choices. I have never been a big fan of cooking, but I am learning. We have cut out most of the processed foods that we used in the past, and I cook as many whole foods as possible. I'm much more aware of where our food comes from, and more selective. We grow some of our own, including raising chickens for eggs. There is a learning curve, but healthy children and healthy parents are worth all the effort it takes.


  1. Thank you so much for sharing your journey. We too have eliminated many foods and I have changed the way I clean our house. I can't change the past, but I can change today and share what I've learned with others. Great post!

  2. Crunchynurse...i love that! Wow mama what a journey, I love the blog and the pics, the boys are beautiful! It's funny as i was reading i was already thinking i'm going to suggest cranio-sacral therapy which is something else i recommend to my clients, especially if they have a c-section, so happy to hear you had positive results from the therapy & that you even considered introducing alternative medicine, i've only done the 1st level of cranio myself but my goal is to be able to do it in labor & delivery (i'm a labor support doula as well as a prenatal massage therapist) Check out my web site it is being revamped but the articles i talk about you can link onto from the site Sounds to me you are doing all the right things. Keep up the good work crunchynurse (love that) and keep us posted on all your go have yourself a good massage girl! & not a fancy spa massage but from a therapist that works for her or his self...don't forget about mommy in the process...oh and this goes for daddy too! My prayers are with you :)

  3. Thanks for reading, Massageamom. You know, I have never had a massage. I was thinking about having some craniosacral for myself, but I haven't had the money yet. I pay out of pocket for S. to have his, but the OT that does it is just amazing. J. could probably use it too, there are just so many things we need.

  4. Thank you very much for sharing your hjourney and all the information and books.

    I am curious about the flattening on the sides of his head.......DH has this and it was never considered anything other than a personal shape. Now I wonder if there are more implications to this. Did you ever get a diagnosis with an actual "name" so that I could read up on it, or do you have any other info? Thanks!

  5. Guggie, we had him examined by a neurosurgeon to rule out craniosynostosis, which would be a premature closure of the sutures of the skull. He did not have this, which was a very good thing because it interferes with normal skull and brain development and must be treated with very invasive surgery. Flattening of the sides of the head is a form of plagiocephaly, which is called scaphocephaly. Scaphocephaly can be caused by craniosynostosis but is also very common in preemies. I believe that in my son's case, vitamin D deficiency prenatally and in the first few months of life may have been a factor. I have this head shape also, and it was very obvious in the pictures I have of myself as an infant. My mother said that my pediatrician had commented on my head shape, saying I looked like I had a preemie head. Except I was a 9 pound 6 ounce baby born 10 days past my due date. Probably vitamin D in my case also.