So it has been a few weeks since Casey had her stem cell injection. They say over the first month or so the changes that we will see will be due to a growth hormone that her body is triggered to produce while the stem cells are getting into her system. Then after 3-6 months we will see the stem cell changes. Anyway, we have not seen a lot yet. Casey has been growing at a pretty consistent rate which may be related. She is gaining about 1/10th of a pound per day on average. She continues to get a little more vocal every day too. She has decided that she prefers to be on her tummy lately. It’s kind of hard for her though. With her feet being flexed all the time and her legs being rotated out the feet work like anchors when she tries to roll. We prop her up on pillows and let her feet hang over the end so she is able to practice her rolling (she loves it!!!!) but she is not able to get past her feet with out having us hang them over something. She still loves to smoosh her face too. If she is being held she wants to smoosh into the holder, on the couch she smooshes the cushion, etc. When she rolls on the pillows she starts with her head to the side, but then quickly lifts her head and turns face down then buries her face in the pillow. We are working on getting her to keep her face out, and to lift her arms during the roll practice. She is getting there, it’s very cute.
We had an appointment on the 8th with our third neuro. Even though the first two were highly recommended and experienced in Casey’s diagnosis, the first one had HORRIBLE bed side manor and was just so unpleasant. The second one was not as bad, but she was a too old-school for us and wasn’t comfortable with more progressive treatments. The new one we were sent to by our second ortho. The new doctor is giving us a bit more hope. Rather than throwing his hands in the air and saying there is nothing he can do, he sent her for tests. He has been talking to us about a few different things he wants to explore, but ultimately he wants to first find out what’s going on, then find a way to improve her stiffness. FINALLY!!!!!!
Casey raises her arms a lot and tries to roll over. This is a very common movement for her, and we never thought twice about it. The new neuro was concerned that the action could be related to a minor seizures. He at first wanted us to have Casey admitted for tests and immediate treatments. We talked him out of that and agreed to take her back the next day for an EEG. EEG’s are used to detect any seizure activity in the brain – Casey has had multiple EEGs since she was born, and they have always come back negative for seizures, even the EEG done right after she was born.
On Friday afternoon (just hours after the test) I spoke with the doctor. He had not looked himself yet at the EEG, but was told by the tech as well as his resident that they did not see any obvious seizure activity. He said they would be doing a more comprehensive review of the tests over the weekend, but at first glance we do not need to worry. On Monday he called back to say that they did see some activity that could be seizures. My first thought was, ‘How long has this been happening? and have they caused any damage?’ There is no way to tell, especially since small seizures that show up on an EEG with children like Casey don’t always show themself with a physical movement.
We started Casey on a seizure med that same day. So far we have not seen any difference. The doctor has called us at home a few times in the evening to check in on her, and we are still adjusting the dosage. He is hopeful that once we get the dosage correct that it will not only help the seizures, but will also help her tone. It would be great if this could help loosen her up some. He is sending us for an MRI (not yet scheduled) to give a more specific diagnosis on affected areas. We haven’t had an MRI for about 6 months so it will be good to check changes since then, especially since we have done hyperbaric and stem cells.
Then in March (1 month later) he wants a follow up EEG to follow the possible seizure activity. We are so relieved to finally have a neuro that is actually trying to help. Once he is sure the seizures are under control he is going to start focusing on other areas. He is much more proactive, and seems to really care about his patients.
We had our second appointment with our new ortho on Valentine’s Day. He is working with the neuro to try and best determine how to approach care for Casey’s stiffness. He is focusing on getting her loosened up and comfortable (which is all we have been asking for). We are going back to his clinic on March 8th. There is a gathering of specialists from around the world that happen to be meeting that day at Children’s LA; he suggested bring Casey in to get the benefit of having that many eyes/minds/etc thinking up ways to help her. We are excited about the appointment.
We are focusing on the feet (anchors) first. If we can get them fixed so she can roll on her own she will be so happy. We are looking at possibly doing botox in mid April (depending on what we hear on the 8th). Then depending on the out come of the 8th we will either see what if any affect the botox has on her feet, or we will look into getting her into surgery. Either way, we should be moving forward in the VERY near future.
We are so much more happy now that we have better neuro and ortho. It makes such a huge difference. We are very optimistic on finally making some real progress. With her new doctors, and the stem cells kicking in soon, we hope to have some very exciting posts coming.