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Hi everyoneI haven’t posted on this site in a long time. The last time I posted my daughter was about 5 months old, had blood in her diapers, was constipated, had minor reflux and was fussy. She had very mild eczema and cradle cap. She nursed very frequently, napped very little and needed a lot of movement. We saw a couple of different pediatricians, all with different theories and recommendations (fissures, reflux, gas, allergies, “colic”). I had tried eliminating dairy and soy from my diet and when that didn’t seem to help, I eliminated wheat, eggs and nuts. We tried some reflux meds, but they significantly increased her night waking. We tried some gas drops, but those didn’t seem to have an effect. I was exhausted, confused and looking for help. And then I found this site- Wow, it is life-changing!One of the best reommendations I received was to see a pediatric GI. I made the appointment myself (without the referral from my regular pediatrician). The ped GI was fantastic. He explained several different causes of bleeding. He recommended a colonoscopy based on her prolonged bleeding and the fact that she didn’t really respond to me eliminating dairy and soy. We also did an endoscopy of her esophagus because of her reflux.While the procedures (and watching my daughter going under) were heart-wrenching, the results were helpful. There was no sign of irriation in her esophagus/throat. Based on the colonoscopy, our daughter was diagnosed with Nodular Lymphoid Hyperplasia (NLH or LNH). She had little nodules in her colon that were being scraped by food/waste and causing bleeding.I’ve done some research to try and find out more about NLH and why it occurs.Here is some information on Nodular Lymphoid Hyperplasia in infants:Another cause for minor bleeding per anus that is unique to infancy is nodular lymphoid hyperplasia. It typically presents with punctate bleeding best characterized as streaks of blood with small streaks of mucus in otherwise normal stool in an otherwise thriving infant. The number of streaks and the amount of blood do not vary with fecal texture. This compares to infection, allergy or other more generalized inflammatory processes of the distal bowel where loose stool indicates inflammation, and therefore goes hand in hand with more mucus and blood. The only time the bleeding disappears in nodular lymphoid hyperplasia is in the face of liquid stools, in which case the streaks of mucus and blood are dissolved in the diarrhea but can be found by occult blood testing. Nodular lymphoid hyperplasia can readily be identified by proctoscopic examination which typically demonstrates a rectum that is studded with submucosal nodes measuring 2 mm across with central ulceration. The bleeding comes from the ulceration and the intervening mucosa is completely normal in appearance, explaining the disparity between the texture of the stool, the amount of bleeding and the normal growth of most of these infants. This permits exclusion of allergy and infection as possible causes since these typically cause more widespread inflammation, visible in the rectum of infants presenting with visible blood and mucus in the stool. Nodular lymphoid hyperplasia is a benign, self-limited process associated with the age-appropriate hypertrophy of the lymphatic tissue of the enteric submucosa. In some infants, the central portion of the overlying mucosa undergoes punctate ulceration. The cause of the process remains unknown. What is known is that the process normally becomes dormant during the latter half of the first year as the nodes regress in size (and activity), and though there may be occult blood found in the stool for the remainder of the first year, there is little likelihood of anemia and no association of any later enteric disease process. As such, my usual recommendation is to continue with routine feedings, introducing solid foods at the usual times as the process is not allergic in origin. The hemoglobin may be checked slightly more frequently than your usual schedule for age, and iron supplementation should be started only if it drops significantly. Inability to keep up with iron loss is atypical enough to warrant reassessment of the original diagnosis.Another link to a pdf file with information about the NLH and the link to cow’s milk protein:The recommendations from the pedatric GI were to:1. eliminate dairy and soy from my diet and he encouraged nursing2. if I did not want to nurse, then we were to try varying levels of formula (soy to hypoallergenic to possibly elemental)3. give her a lot of green veggies to help with constipation4. give her 1/2 tablespoon-tablespoon of Miralax in one bottle each day to help with constipation5. start giving her solids 4 times per day to help keep down spit up6. no need for reflux medsHe told us that as she got older, that the NLH would disappear by itself and that she would get better (he was sure of it!
).We made a two-month follow-up appointment. By that time I was back at work (summer off for school district), pumping and eating very little (which doesn’t bode well for nursing). We had tried supplementing with soy and hypoallergenic formulas, but based on her behaviors at daycare and home, these weren’t working.Eventually we went to Neocate (with the recommendation of our ped GI) and that’s when our lives improved significantly. She was way less fussy and her sleep improved greatly.The past 7 months, we’ve been working with the insurance company to get the formula covered (we live in Wisconsin). After months of jumping through hoops, we are finally getting part of the formula covered. Yay!My daughter is now 14 months old. She is still on Neocate. We are still giving Miralax every day. I also give her probiotics (Kirkman labs). She is doing great. I haven’t seen any blood in months and her sleep is good (and mine is much better too!).It’s been a long road and I’ve worried myself crazy sometimes, but overall we are doing much, much better. So, there’s hope!both of you:
have you posted your ped GIs for others?if so: thank you!
if not, please do:
Looking for a GI:
https://www.infantreflux.org/forum/forum_posts.asp?TID=660TaraWI wrote:
Our pediatric GI was Dr. Yaffe at Dean Clinic. He was excellent.
where is this? city? state? I’ll post if for you, thanks!
ok found it!Dr. Michael R. Yaffe, MD
1313 Fish Hatchery Road
Madison, WI 53715-1991
(608) 252-8150off to go post
hellbennt2010-08-08 15:09:43
YAY!! thank you for posting this! Your information will help someone else, I am sure of it! Viewing 14 posts - 1 through 14 (of 14 total)
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