Posted By Posting
Aug 08, 2008
I really discouraged
ok, so the last two week have been busy with Dr appointment. Last week Nate had Rast testing, everything came back "normal" although he broke out in hives on his forehead. The Dr had no explanation for this. We just got back from 24 hour at the hospital for a endoscope, sigmoidoscopy, and ph probe. Although I am glad that he is by the looks for things healthy I have a feeling these are going to offer no clues as to why he can not handle solid foods. The ph probe only went to the back of this throat not all the way down, and I know he was refluxing bad during the night. They are doing a biopsy although I an not sure what they are looking for with that. The Dr that did the scope when she first seen Nate made a comment about his weight and how healthy he looked, she would not think he had feeding issues. yeah at 8 months he is 25lb, his birth weight 10lb 80z. He did not gain any weigh for two months and then quickly started packing on the lbs with neocate. He has appointment for patch testing next week, but I am starting to feel really discouraged and sad about this issues. I just want my little guy to be able to eat and be pain free doing so. I guess that's all any of us want. Jennifer
Aug 08, 2008
sorry, I am really discouraged. going on two hours of sleep due to the reflux problems last night
Aug 08, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
God, do I know all about getting subpar treatment for my son because he is a moose. I'm so sorry. Is he having trouble with all solids? Maybe try a week or so without any and see how he does? I'm so sorry you feel so discouraged. I hope you get some results fromt he patch testing. You just might. Sebastian tests negative for milk on the RAST but has such a severe allergy that he spent all last week puking and pooping blood because of the milk in the FLAVORING of his Omnicef. Hoep tonight is a better night.
Aug 08, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry you are having a rough time right now. I'm hoping some light will be shed on things soon. Hugs!!!
Aug 09, 2008
mom to 4 kids with probable
Mitochondrial Disease
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
Many meds
I am sorry your son is having problems. What kind of meds is he on?Have you tried different ones,higher doses, combination of ppi +h2 blockers,etc? Has he had any motility testing to see if his tummy empties properly? It may explain why he has trouble with food, if his digestion is slow he will not eat well, have reflux, nausea,stomachaches,vomit undigested food hours after eating etc. A lot of motility problems manifest themselves with actual vomiting rather than "reflux". Does he vomit a lot? Meds to help with these sort of problems would be prokinetics like regan,erythromycin,cispraside,etc. Maybe the biopsy will reveal some answers," looks good "doesnt always mean things are good on a cellular level. As far as allergy goes, sometimes testing doesnt pick it up but there are obvious reactions to certain foods. There are usually referred to as being intolerances, but sometimes IGE is involved in delayed reaction as well. In your case with him having hives, I would say it probably is allergy to something. If I were you, I would log what he eats/drinks and note when reactions occur. You may be able to link it to a food if you do this for a little while. Sorry for all the questions, just trying to help you out :)
Check with your
doctor first!