Let me just start off by saying I was not impressed with the doctor we saw this morning.
The end result/diagnosis is "Function abdominal pain" and possibly IBS (Irritable Bowel Syndrome). The problem with an IBS diagnosis is that unless she's had symptoms for 3 months, they won't give her that specific diagnosis. Did I mention the doctor said she doesn't think Sam needs to come back.
The doctor glanced through all the labs and notes from the last month and without beating around the bush says she doesn't think Sam has Celiac. She said that even if you were gluten free when you took the test, it takes 6 months to be completely gluten free. She said that the Celiac test is a good test and that it's reliable.
The doctor said she thinks Sam is constipated and that's part of the problem. Still don't think constipation will cause a child to sleep 12-18 hours a day. Also don't think that constipation will cause a child to be in such pain that they lay in the fetal position and refuse to move for the few hours they are awake.
The dr. put Sam on what's called a FODMAP diet. She needs to follow the FODMAP diet for at least 6-8 weeks. At that point, she can try to re introduce foods into her diet to see how she does with them. The FODMAP diet is a gluten free diet (So...she doesn't have Celiac but has to still be gluten free? Yep. Makes sense, right?)
The FODMAP diet tries to eliminate carbohydrates from your diet. FODMAPS are osmotic which means they pull water into the intestinal tract and may not be digested or absorbed well and could be fermented upon by bacterial in the intestinal tract when eaten in excess. Common FODMAPs in your diet are:
Fructose (fruits, honey, high fructose corn syrup, etc), lactose (dairy)
Fructans (wheat, onion, garlic, etc - also known as insulin)
Galactans (beans, lentils, legumes such as soy, etc)
Polyols (sweeteners containing sorbitol, mannitorl, xylitol, maltitol, stone fruits like avocado, apricots, cherries, nectarines, peaches, plums, etc)
Samantha is now convinced she's going to starve. Luckily, we have a list of what she IS allowed to eat. This should make for an interesting 6-8 weeks.
Functional abdominal pain means there is no structural, inflammatory, infectious, neoplastic or metabolic cause to your stomach pain. Functional pain is diagnosed in about 10-15% of school aged children. It is believed that in some children the nerves in your intestines become very sensitive and pain is experienced even during normal intestinal activities.
We were told to find some peppermint oil capsules that she can take with meals. This is supposed to help with gastric relaxation. She was also given a prescription for something called Levsin. She just puts this under her tongue up to 3x a day with meals and it helps with the main. We were also told she should not be taking Aleve or ibuprofen - this should make the patella bursitis fun.
So, here we are, going on 5 weeks missed school, a CT scan of the face, an ultrasound of the pancrease and gallbladder, 5 rounds of blood work, a chest x ray, 2 trips to the chiropractor, 2 trips to the ENT, at least 5 trips to 2 different pediatricians, 6 prescriptions (3 antibiotics), 1 trip to PCMC to see a pediatric GI and STILL not a positive diagnosis. At least she wasn't a human pin cushion today. We'll see how the next 6-8 weeks go on the FODMAPs diet. Hope she doesn't drop a ton of weight. Keep your fingers crossed.