Alana had her GI follow-up on the 2nd. Pretty much everything has come back unremarkable other than the MRI showed some minimal thickening of the terminal ileum (small intestine). The doctor pretty much dismissed that and thought it was nothing. We are still waiting on the IBD stool results. He wants to continue with the EGD/colonoscopy and that is scheduled for the 17th of this month. He did say that he expects it to be negative and that he thinks she has IBS. I don't disagree, and we both agree that something has to be done to help her. He advised me to give Miralax daily because he thinks she's constipated (apparently I'm confused as to what "constipated" really means....) and to continue with the Hyomax as needed. Her follow-up is on the 23rd and at that time he'll probably make the official IBS diagnosis and change her medication. In the meantime I'm keeping a journal of her diet/symptoms to see if I can find some sort of correlation (and to show him on paper how bad it truly is). Since starting the Miralax her stools are completely liquid (and horrid smelling) but she does feel better. Her size still concerns both of us.
Yesterday Madi had her first appointment with the new Pulmo. Her chest x-ray was clear and her PFTs were good. He says she has a small airway and advises that she continue on medication until she is bigger and her airway grows. He expects her to outgrow her asthma which is what we've been told for awhile now. I'm hopeful, but not holding my breath. He looked over her sleep study report and said that her apneic events were within normal limits but her arousals due to limb movements were not. He diagnosed her as having Restless Leg Syndrome. I had to chuckle at that because my Grandmother, Mom, and I all have it so it makes sense. Apparently hers is waking her up at night so she isn't getting good sleep and that causes a whole host of problems during the day. He ordered some labs, mostly to check iron levels because low iron is a cause of RLS, but also because she has a history of sinusitis and inflammation. He also wants to repeat the sleep study so he can determine the severity of the RLS and how he should treat it. Good sleep is really important so I'm good with repeating the study. I questioned the validity of the last study anyway. She was such a good little patient yesterday and didn't even flinch when they took her blood.
So, looks like lots of appointments for the next few months but I also feel like we're on the right track with both girls.
Good luck!! I'm sure I've already told you this, but my IBS basically went away when I started the paleo diet (no grains - I don't eat corn or wheat, I rarely eat rice). I hope you can figure something out that helps her. I've found other weird things - like too much peanut butter - also bug my digestion.
Definitely sounds like things are on the right track. Had you stayed with the other place I'm not so sure they would have caught Madi's RLS. Busy busy but definitely going the right way. Congrats.
Natalie - since you are on the Paleo diet if one were to try it could you offer any tips? I'm just curious. I thought I'd ask here in case anyone else (including Tanya) are interested.
After the scope follow-up I'll definitely be looking into adjusting her diet. I have a feeling I won't get much family support on that one (from my inlaws mostly) but I have to do what I think is best for her. We've tried elimination diets before, with no success, but our bodies do change over time and I'm not ruling out foods as triggers. I had a long talk with her the other night about possible stressors and how our emotions can make us feel sick at times. She claims to be very happy with life and not stressed about school or dance. I don't really think stress is the issue but I did talk with her about relaxation techniques and she agreed to try it next time she is feeling bad. I'm also looking into some yoga classes but can't find any locally for kids. Still looking. On a positive note, she told me last night that she feels better than she has in a long time! She is still having diarrhea 3-4 times a day but at least she feels good. And today is her birthday so I'm thrilled that she gets to enjoy it.
And still waiting on Madi's lab results to come back. It wouldn't shock me if her levels were a little funky. She's a terrible eater and I should probably add a multi-vitamin to her diet. Her height was in the 8th %ile and her weight was off the charts. The doctor didn't mention it though and she's always been on the smaller side.
The paleo diet is based on the idea that how we make food has evolved a whole lot faster than we have. So you try to eat things that ancient cave people would eat. I'm not 100% (I buy regular pepperoni and that has nitrates and stuff in it) but I try. So no grains, very little dairy, etc. Lots of veggies, fruit, nuts, seeds, etc. It also involves eliminating beans, which have antinutrients in them (things that interfere with absorbing nutrients).
At first it was hard to think about what I couldn't have. But I realized most of my bread-like things were delivery devices. So now I eat hamburgers without the bun, tacos in salad format, etc. Dan has a gluten-free popover he makes for me sometimes that I use when I really need something to shovel olive oil in with :-D I miss dipping bread in olive oil. Mmmm.
My IBS and endometriosis are both so much better that I just can't help talking about it when someone is having problems. It really seems like our newer strains of wheat, which aren't the historical Little House on the Prairie ones, are bothering LOTS of people.
It is a lot of appointments, but at least it seems like you are getting some answers, or at least getting closer to some answers.
So Madi's labs are back and her iron levels are fine. However, her MCV and MCH levels were high. The doctor didn't mention this when he called but after I saw the labs using her online account I put in an e-mail to the office to question it. In the meantime I called the Pedi and spoke to the nurse who just babbled like an idiot. Told me the reference ranges were for adults (a quick google search told me they weren't) and that she was actually within normal limits for a child (yet she never asked me what Madi's values were). Then she started yapping about kids going through growth spurts and that is usually why their lab values are off, not due to an actual problem. Perhaps that's true, I really don't know, but she never even asked me what her values were and her whole story just sounded fishy. Her WBC level was a 5, the lowest possible value to be considered normal. Since we're in a pretty active flu season that has me even more paranoid, lol.
I'm not terribly concerned about the abnormal labs. They could be nothing. I just want to make sure they have absolutely nothing to do with the RLS diagnosis so that we can treat it properly. I'd rather not give her the meds if all she needs is a vitamin supplement or something simple. Her sleep study is scheduled for the end of next month to confirm the RLS diagnosis and rule out the sleep disordered breathing.
It seems like that's definitely on the low end and worth asking about. I'm sorry you're getting the runaround from so many doctors. That has to be frustrating.