New meds, new pants and new plan

Well, the pants aren't very new. But the Ketotifen is. We've had her on Budesonide oral for a while (it's usually inhaled through a nebulizer but when taken orally, it's kind of like a topical steroid for the insides) and we haven't seen any improvement. We've talked about Ketotifen before but wanted to make sure nothing else was working. It's a combination of a couple of different medications she has been on before, working a lot like a steroid and antihistamine rolled into one without the systemic side effects. She has been on it for two weeks and there is still no change. Another bummer is that this stuff isn't immediately covered by Tricare because it isn't commercially available in the states; we have to have it compounded. I'll just say that Canadian drugs are looking GOOD.

Her GI doc is moving in February but will return every six weeks for a year or until they get another pediatric GI. I'm very nervous but hope that it only seems like a bigger deal than it really is. We had our last appointment this week and he calmed my quiet hysteria about the amount of mucous in her diapers. In reality, we should expect it because she has severe allergy in the gut. When you have severe allergic rhinitis, your nose runs, so...you get it. Unfortunately, the hemocult cards they had me wiping poo onto showed some bleeding. Doc is actually thinking that this is more of an autoimmune problem and not completely due to food triggers. We have gone as elemental as possible for her diet. It could still be the tapioca, so we will play with that in this 8 week time frame we have until our next GI appt. After that, it's immunosupression. Doc has been talking about 6MP (Mercaptopurine) that is used mainly in conjunction with chemo for leukemia patients. He has used it with great success in Chrone's patients. Since this is looking like her immune system is attacking her own body, suppressing it could help regain footing and calm it down enough to introduce foods. I'm not wild about the idea, but we HAVE to feed her. We are already in OT and feeding therapy, but when you can only work with a sorry excuse for tapioca pudding, it isn't easy and it might not be effective. There are risks, but she wouldn't be on a dose of leukemia proportions, it would be tailored to her white blood cell count. In fact, we had to run labs to determine whether or not she would qualify for the treatment to begin with. So the fact that she would be getting a fractional dose significantly decreases the likelihood of something going wrong. We are still reading about it and researching, and in the meantime we are REALLY hoping that the Ketotifen is just a late worker. Now for the cuteness!

She really wanted to wear Daddy's baja shirt!

This is how we roll.

It was naptime in the Dollman house, but there was a ruckus in the girlie room. When I went in to check on her, this is how I found her! She was fully clothed plus the tutu when I laid her down. Apparently it was a tutus only kind of party.

My big helper. I simply borrow the cookware.

We let her out, sometimes.

She'd go to the grocery store like this if I'd let her!

She likes the stripes