We have had an ongoing concern about Phoebe's walking. After Thanksgiving, she had an ear infection and I was feeling she was very unstable in her balance. She got her ears rechecked and I was convinced she would still have the ear infection, but the doctor said her ears were clear now. I was very surprised since she did not seem better and was often fussy. Some weeks later, in mid January, she had a very bad weekend and seemed to be having such a hard time walking. Like, she was back to cruising, but she would hold onto things and not want to take a step without whimpering and crying, or asking to be picked up.
I asked Jason if he thought she was in discomfort and he initially said he thought she was just a top heavy baby, with a big belly and a big head, so of course it was hard to get around sometimes. But then I conferred with Jason's mom and once I said something, she also agreed that something was off. I made another doctor's appointment. Doctor Jenn said her ears were still clear. I tried to describe how Phoebe was off balance sometimes and didn't want to walk, but that it was not 100% of the time. I asked if she thought she could have a small fracture, but she said that a broken bone would probably be a consistent complaint for a little one. She moved Phoebe's legs in all directions and said to take some video of what I was seeing and we could discuss it at Phoebe's 18 month check up (2 weeks away) and then if I was still concerned, she could refer me to a physical therapist. Jason's mom was very surprised there was no ear infection and was very firm, "Something is wrong." It felt good to have someone backing up my mom gut, but I still wasn't sure what I was seeing and how much was toddler toddling and fussing and if something was seriously causing her discomfort. We were starting to feel she was worse in the mornings, which made no sense, given that she'd sleep all night, so I figured getting out the door was usually the problem....
I took some videos over the weekend and saw that Phoebe walked at times without bending her left knee, instead shuffling her leg from the hip. Not what I considered a normal toddler gait. She is growling and roaring adorably because we are playing with plastic lions.
Instead of waiting, I made another doctor appointment. I also took another (sad!) video of her cruising and crying when she'd try to take steps.
Doctor Jenn was much more concerned over the video evidence. She sent us for xrays, which showed no broken bones. The next day we had labs done, checking for a scarily named toxic/transient hip infection. Labs showed some minor inflammation markers, but otherwise normal.
Next day after that, we saw an orthopedic. (If he didn't have answers, our next stop would be a neurologist and that was starting to freak me out!) The ortho and his team met Phoebe and gave her a lollipop when she was getting upset about exams. That worked! She ate the whole thing without biting it! The doctors said they did not think that my CMT was an issue (I was worried, going to see an orthopedic takes me back to the time of foot-braces!), but instead supsected that Phoebe has juvenile/children's arthritis. I did not know that was a thing, but it is. So she probably has inflammation in her knee. He said her knee felt full to him, but he didn't determine if it was just inflamed or fluidy, just "full". The biggest kicker for me, ding ding ding, was when they said a symptom was that it is WORSE IN THE MORNINGS. That is exactly what we are seeing. He said to do Motrin all weekend and call back on Monday. Next steps would be seeing a rheumotologist, more labs, or an MRI.
Here is Phoebe walking at the orthopedics:
Saturday we did Motrin 3 times a day. She was the same in the mornings and better in the afternoon. We went to Ikea and she wanted to explore. She tried to go faster, but she fell on her face, bumping her forehead (nothing serious) two times.
Sunday she was so fussy all day. It was after noon when she probably even took her first step. I was getting pretty concerned.
Monday was a typical wake up, crying and unhappy and not walking. I called the ortho and talked to Chuck, the nurse assigned to our case with the weekend update that I hadn't seen a huge improvement. He took down my notes and said he'd call me back. Didn't get called again until Tuesday, today. So I guess the orthos are concerned that we didn't see change with the anti-inflammatory meds, so they think we should do the MRI, which was the last-resort, as she will have to be put under. (aaahhhh) So now it is time to contact insurances and it will probably be in 1-2 weeks if nothing changes.
Anyway, I will have to keep a better log of what I'm seeing, because today was the first day that Phoebe didn't wake up crying. But I don't know if that means anything or not! Obviously, we should still move forward on the MRI, but I hope Phoebe will do a bit better. :(
ANyway, this is a new harrowing part of parenting for sure!
No comments:
Post a Comment