Update on doctor visits

This has been a busy week for doctor's appointments! Tuesday the 4th we saw the gastroenterologist because, since birth, Lizzie has been gaining weight very slowly. Our pediatrician referred us to the GI a while back, before she was admitted to the hospital. The neurologist at Children's Mercy thought it was likely that she's been having seizures for quite some time now; if she was burning calories having low-level seizures, it would have an effect on her weight. However, we decided to go ahead and keep the GI appointment just to rule out anything else. We didn't learn much that we didn't already know; basically the GI doc set up a meeting with Nutrition for us and said we'd wait and see what Lizzie's neurologist said later in the week.

Thursday the 6th we had Lizzie's 4-month checkup with her pediatrician and an appointment with the epilepsy clinic at Children's Mercy. At the pediatrician appointment, the doctor noticed a "click" in Lizzie's left hip when she was doing her exam. She said they would need an ultrasound to check it out. She tried to set up an appointment for later Thursday when we would already be downtown at Children's Mercy, but no luck. They tried Children's Mercy South and got us an appointment there for midafternoon.

Off we went to the epilepsy clinic. Lizzie was scheduled to see her doctor there, Dr. K. He will be her doctor from now on, but he was not someone we had met when she was in the hospital. He came in and discussed several things with us, as follows:

Bad news: Dr. K had looked at Lizzie's EEGs from when she was hospitalized and said that they didn't look good. On the second one, in particular, he said she wasn't even showing continuous brain activity. I asked what that meant, and he said that was consistent with very severe brain abnormalities and high degree of developmental delays. He said it looked more like the EEG of a premature infant instead of a three-and-a-half-month-old infant.

Good news: All of Lizzie's test results have come back normal. They have tested her blood and spinal fluid and nothing is out of the ordinary. In her genetic tests, they looked for deletions or duplications of any genes, which they did not find. This leads us to...

Bad news: We still don't have a reason for Lizzie's condition. Since all her tests were normal, nobody knows why she's having seizures. This is frustrating, to say the least.

Good news: We told Dr. K that Lizzie has not had any major seizures for a while now. She seems to be doing fine developmentally, as far as we can tell. She smiles and laughs; she coos; she's trying to roll over (and getting pretty close to doing it); she follows us with her eyes and turns her head to track us. Dr. K said that, while all of that is good, at four months old it's more difficult to notice developmental delays because infants don't do all that much at that age. Then he examined Lizzie and he did agree that she seems to be doing pretty well. He said that she has good muscle tone and seemed surprised that she did not look like her EEG suggested she should look. He was expecting a lethargic little baby just laying there, but she kicked and yelled and was quite active. Because she was mad at him while he was doing the exam, we didn't get to show him how she smiles or tracks us, but he took our word for it.

So this is the plan from here. . . Dr. K ordered another EEG, which will be on the 17th. If it looks much better than the ones she had while she was in the hospital, he will order a genetic test to check to see if the Vitamin B6 is the reason for the improvement. If it does not look better, he will want to see her more frequently. He also wrote a referral for Lizzie to get physical and occupational therapy. He said right now PT might not do much with her because her muscle tone is good, but he wanted her to go ahead and get started with it. Also, he increased her dose of Keppra slightly and continued her on the B6 and folinic acid. Lizzie will see someone from the Nutrition department on the 11th to see if there's anything else we can be doing to help her gain weight.

Then we left and went to Children's Mercy South for the ultrasound appointment on Lizzie's hip. She was a perfect angel for the ultrasound; she just laid on her back and looked up at the mobile on the ceiling the whole time. They did both hips and sent the records over to the pediatrician's office. Late in the afternoon they called and said that everything looked normal with her hips and they would just keep an eye on it in the future.

So we're relieved that there are no problems with Lizzie's hip joints. We're also glad she's doing so much better than Dr. K expected her to be doing. It's going to be hard to wait another 10 days for the EEG and then a few more after that for the results, but there's not much else we can do. We are so grateful for all the prayers you have been saying for Lizzie, and we humbly ask that you please continue praying--obviously it is working!