Generic Jordan Medical Update

It's been quite a busy couple of weeks on the medical front, so here's an update:

Two weeks ago, at the "end" of her massive snot festival cold, she was diagnosed with a raging ear infection, which led to a 10 day treatment of amoxicilan. Her follow up appointment on Friday revealed the infection was gone, but significant fluid build up on her ears. Now, on a "normal" kid, 1 ear infection at age 16 months, with residual fluid wouldn't even be a blip on the radar, but the pediatrcan said that if the fluid isn't gone in 3 more weeks it's off the the Ear, Nose, and Throat doctor. She hasn't seen an ENT yet, but hey why not, whats one more specialist? Then she was right into a discussion of tubes, and adnoid removal, etc. . . . Because of her mucuos issues & (minor) anatomical dysmorphology (but not enough to be genetic syndrome material), she needs all the help she can get clearing and draining her ears & nose.

Then I asked if the fluid in her ears would be making her such a raging, angry beast the last few days, or if that was more likely the erupting teeth. Because she doesn't eat orally her teeth are sslllloooooowwwwwwww to come in. And 3 have popped through this week. Slowly. Also, her teeth farther back in her mouth seem to be erupting very low on the gums. Very low. So, it's off to the dentist she goes on Monday. I tried to prepare them for Jordan's special needs, but they'll just have to watch their fingers and figure it out when she gets there (she's got a heckova bite when she doesn't want you 'playing' in her mouth, but at the same time seems to like having her gums rubbed -- it's a very thin line).

After the dentist we'll be off to the pediatric ophthamologist for her 6 month check-up. So far she doesn't have any physical or mechanical problems with her eyes (she should be able to see), but beyond responding to light, she doesn't seem to use the appropriately. It could be delayed development (like a newborn), or it could be cortical vision impairment (CVI; her eyes see, but her brain doesn't process the images). Her cataracts are still very small & shouldn't be impeding her vision.

Thursday she had a follow up with the pediatric neurologist. He definitely refers to her condition as Lennox-Gastaut Syndrome now, not the greatest syndrome in the world to have. That's about the first thing anyone has really "diagnosed" her with, but it's a pretty easy fit after the Infantile Spasms. She performed well, and showed him many of her odd movements. He agreed with us that some were seizures (myoclonic jack-knives), and many others weren't. She's on a low dose of Keppra right now, but we're going to start increasing that every week until she's up to 2 ml per day. He also says she'll probably end up on the Ketoenic diet, and that its usually a very good fit for LGS management. It really doesn't matter what she eats because of the tube, so the keto diet will much easier for us than most other parents.

And speaking of food, her Compleat came today. Now we have to break her & us into a new food & feeding schedule. I don't know how her tummy will react, and I'm not anxious to add tummy troubles to the mix since she's already so irritable. I think we'll transition slowly from her baby formula to this.

And, last but not least, her Keratosis Pilaris seems to be mellowing out a bit, with diligent Urea/Hydrocortisone treatments twice a day, and cleanser, not soap in her bath. The dermatologist told me to try the cream mixture for 6 weeks to see if it helps (we're on week 2), and if not, give up, there's nothing else we can do about it.

It'll be another busy week of appointments next week, too.