My 20 month old son has been having a variety of health issues and my mothers intuition says something is going on under the surface to cause these things. He was exclusively breastfed until 7 months old and is still nursing frequently throughout the day and night.
He was born at 36 weeks at 5 pounds, 10 ounces.
He is allergic to oats, milk and pears.
He is sensitive, intolerant, or allergic (?) to wheat and barley.
I went gluten and dairy free for him when he was 2 months old and we remain on this diet. His reflux was completely eliminated upon adopting this diet and he did well until we began solids at 7 mos. He did not tolerate them well and we stopped solids and re introduced again at about 10 months.
Right after introducing solids at 7 months he had two seizure like episodes which were later to be determined as not real seizure activity by a pediatric neurologist. His pediatrician thought it could have been Sandifers syndrome, but we don't know for sure.
At 12 months he was diagnosed with both anemia and a heart murmur. We thought the anemia was mild, but we aren't certain because they couldn't complete the panel due to a testing error. We believed the murmur to be innocent. His growth was on the slow side, but still in the realm of normal. We began to address the anemia through dietary increase of iron.
He suffers from constipation and already has a small hemorrhoid.
He also has severe tooth decay which began within two weeks or so of his first tooth eruption. The dentist says he needs 6 crowns, three fillings. He only has nine teeth.
Last week he was retested for anemia and we discovered his hemoglobin is only 8.2. His iron stores are at 14 and his transferrin saturation is only 2%. The pediatrician decided to refer us to a cardiologist for the murmur and he confirmed the murmur is likely caused by the anemia. We were then referred to a nutritionist who essentially confirmed that I was doing all the right things to increase his iron through diet. We have to supplement and I wanted to use florivital but it has pear juice as an ingredient. If you have any suggestion of another good supplement, I'd appreciate it! I'm so concerned about the constipation.
I hope that summarizes the situation. I feel all the above symptoms could be easily attributed to celiacs, but we have been 99% gluten free almost from the beginning and so I am thoroughly puzzled and a bit freaked out. ( The other 1% is because I haven't worried about cross contamination, not because I eat any gluten on purpose.)
Do you have any advice as to what my next steps should be? Thanks so much!
I’m glad the probable cause of the murmur has been found. That’s a relief, though they usually aren’t a big concern. The cause of the anemia is perplexing though. There is certainly intestinal bleeding in those with food allergies and intolerances. It’s possible that enough blood has been/is being lost in tiny little increments over time, each time you hit a new food allergy learning curve, or when there were hidden food exposures.
It’s very common for babies to be sensitive to more foods in a solid food diet than they were in mother’s milk. I’m sure you’re watching for signs as you add the solids. Keep your food allergy radar on.
There are blood and stool tests for celiac and I’d want testing in your son’s case. If you’ve been avoiding glutens sufficiently for a long time, celiac tests can come out negative even if celiac exists, but a positive test can suggest that you are missing traces of gluten and explain the anemia.
There are home tests you can buy for blood in the stool. You may want to perform periodic checks. One check at the doctor’s just tells you about one day. There are some great GI function stool tests that are mostly performed by Integrative Medicine doctors, Osteopathic Pediatricians, certain Naturopathic Doctors, and the like. They can test for inflammation in the gut, malabsorption, and all kinds of things. Metametrix and Genova Labs are two of the companies that provide these tests. If you’re interested and can’t talk your pediatrician into it, and don’t know where to go, you can try calling the companies to see what doctors in your area use them.
Yes, the possibility of a hiatal hernia pretty much fills in the rest of the picture for Sandifer’s. It would be pretty much under the sternum and can’t be felt from the outside. In terms of diagnostic tests, I’d personally choose endoscopy over barium x-rays. An endoscopy uses no radiation and is not very invasive but does require twilight anesthesia, which is lighter than general anesthesia.
The Sandifer’s symptoms make it so intriguing to look for the hernia. Apparently the vagus nerve can be impinged by a hernia and cause various neurological symptoms. You might want to consider what you would do differently if a hernia were found. Are his symptoms so bad or potentially dangerous that you would consider surgery if a hernia were found? The symptoms right now don’t sound problematic or dangerous, but I’m no expert. You need your doctor’s advice about that. Children are supposed to outgrow Sandifer’s, so you may just want to practice watchful waiting for now, keeping your pediatrician close in the loop, and see what develops.
It’s certainly worth treating your son as if he has a hiatal hernia, until such a time you decide it’s of no value. This means keeping him at least partially upright most of the time, especially after eating, and avoiding large meals. You can put something under the head of the bed to create about a 15 degree incline.
Nature Works is a Floradix-type of gentle iron supplement with herbs. I’ve only known one baby on it but she did do well with it. I don’t see any of your son’s allergens in it but with so many ingredients, there is room for reacting. The ingredients are listed here: http://www.vitacost.com/nature-works-herbal-iron-multi .
Aloe vera and magnesium supplements are two gentle things that can help to soften the stool. Aloe is also healing to the intestines while magnesium deficiency is common with celiac. There are stewed prunes, of course, but follow up with a water or breastmilk rinse to protect the teeth. You can try gently inserting a thermometer a short way into the anus to see if you can stimulate movements sooner. Some try a little senna tea if things get frustrating, and there's always glycerine suppositories.
Oh I’m so sorry about the teeth. That’s a whole ‘nother ball game. Your dentist can tell you whether it appears to be related to GERD. You may need to do some camping out at Mothering's Community dental board or try VeryYoungKidsTeeth, a great Yahoo chat group for answers and support among natural parenting moms.
Probiotics are great for improving food sensitivities and gut function and for trying to fight dental decay. Buy milk-free, not just lactose-free.
Just to throw another coal on the fire...the ped told me today that his blood results actually seem to indicate thalassemia and not iron deficiency anemia, although his iron is low too. She really does not seem concerned and is content to supplement with iron for three months and then retest. I want to take her cue and relax, but I have a hard time trusting mainstream medicine.
Oh my. It will take a little while to get all the diagnoses sorted out and you do need mainstream medical tests and advice right now. Yes, relax sounds great though. He's really going to be just fine. I'll just mention a few things about thalassemia, in the case this is the final diagnosis. It can be valuable to obtain medical help in monitoring iron levels regularly over the years, as iron overload is as much a concern here as is anemia, but they're both treatable. Iron is a strong oxidant and can cause some mild, negative long term health effects. Antioxidants are your big key, which are probably already high in the healthy diet you're feeding. They're high in all fruits and veggies. As far as I know, beets and curcumin (turmuric) are the strongest antioxidants against thalassemia while many thalassemics become low in valuable CoQ10. You may be able to get some beets into your baby's diet but the others can wait a year or two until he can swallow supplements, especially since breastmilk has great antioxidants. A little powder of these might go down hidden in some applesauce or such and curry dishes might eventually go over well. I'd focus more right now on the basic antioxidants of vitamins A, C, and E. There are simple baby-friendly options for these (maybe just a multi-vitamin with high C).