I know the some of you don't know all the history so I will try to give you an overview of the last couple of months. Sorry but this will probably be long.
Around 5 mths Ellis seemed to be recovery well from his kidney surgery and developing along as he should have been. One day during a feeding he starting doing this "shaking" thing. I thought it was odd but figured I was just being paranoid. I planned on mentioning it at his 6mth well check.
Around his 6 mth well check in February 2010 he was hospitalized for RSV/pneumonia at Holmes Regional in Melbourne. At the hospital he started having regular episodes of shaking. I mentioned it to the pediatrician we saw in the hospital. She wanted a consult with the neurologist and an EEG and maybe an MRI of the brain. The EEG was normal and we consulted with Dr. Cimino a pediatric neurologist in Melbourne. At that time after a brief history Dr. Cimino felt that this was related to his reflux. He did not feel that an MRI was necessary. During this stay I was able to finally get an episode on video. You can view it here if you wish:
http://www.youtube.com/watch?v=TERZOL1o9wk
After reviewing the video the hospital pediatrician thought we should still f/u and do a 24hr EEG. Dr. Cimino agreed to do this with us although by this point it really felt he like he had written us off and was doing it to appease us.
After being d/c from the hospital, we went to see Ellis' regular doctor Jose Fernandez MD. He reviewed the video and was concerned and was skeptical about reflux being the cause. He recommend we f/u and do the 24hr EEG. We finally did the initial 24 EEG in mid-April. Unfortunately, Dr. Cimino's office said the memory card was bad and all the data was lost so we had to do it again. They could not get us in for six more weeks. In the meantime Dr. Fernandez felt we should consult with a GI specialist as Ellis was still having these episodes. If it was reflux then obviously the prevasid was not controlling it well. We consulted with Dr. Bornstein the head of Arnold Palmer Children's GI specialists. He reviewed the video and had his colleague review the video and he said there was no way reflux was causing that. He recommended that we do the 24hr EEG and if that was normal and he was still having reflux sx's at night (he was still up4-5 times a night at this point) then come back and we would discuss. We finally did the 24hr EEG again at the end of May.
About that time we had his 9 mth well check scheduled with Dr. Fernandez at the end of May. At that visit Dr. Fernandez noted that he had not gained any height and not much weight since his 6 mth visit. He had dropped from the 50th % at 4mths to the 7th % at 9mths. Dr. Fernandez was concerned and did not feel that this was normal. Hewas worried because now along with this weird shaking thing we had a growth issue. He felt we should follow back up with the GI and get the results from the EEG and see a different neurologist. Dr. Cimino had written this off as a reflux issue from the get go. Dr. Fernandez and I felt like Dr. Cimino thought we were wasting his time.
I had one last visit with Dr. Cimino to get the 24EEG results in the beginning of June. He said everything looked great. I brought to his attention at this time the growth issue. He thought it could be normal but ordered a urine analysis and neogen screen to check for metabolic issues. He still felt it was not a neurological issue.
Shortly there after we followed back up with a GI specialist. We saw Dr. D. Mehta as Dr. B was not available until the end of July. Dr. Mehta felt that the decrease in growth rate was very significant and wanted to be aggressive with tests. He was eating was very normal and he does not throw up or have diarrhea so it was concerning as to why he wasn't gaining weight. He scheduled an endoscopy, a pancreatic stimulation test, a various lab tests for the following Tuesday June 15th. Meanwhile I had been consulting with Ellis' urologist as he is very well known in the Orlando area and he helped me to get in to see the specialists. He said he would call Dr. B and make sure that Dr. Mehta's plan was appropriate.
On the Friday before the Tuesday we received a phone call at 9:45pm from Dr. Mehta confirming the plans for the following Tuesday. He had mentioned Dr. Bornstein said how "strange" the video of Ellis' shaking was. Dr. Mehta wanted to know if we had done any scans of Ellis' brain. I told him the Dr. Cimino really did not feel like this was a neuro issue and did not order an MRI. Dr. Mehta felt that it would be prudent to do an MRI on Monday before the scope. If it was abnormal there would be no reason to do the scope. He called back at 11pm that same night and said he had spoken with the anesthesiologist and that they would try to work him in late Monday morning or early afternoon and to not feed Ellis after midnight just in case. They wanted him not to to eat b/c of the sedation required for the MRI.
Monday ended up being a big fiasco. Long story short they kept pushing him back on the schedule and I was not able to feed him until about 5pm Monday evening! He was not a happy camper. So we finished the MRI and headed back to Melbourne.
Tuesday 5am came early! We left for Arnold Palmer Hospital at 6am for the endoscopy. They planned on keeping him overnight as they had to put him under general anesthesia and intubate him for the procedure. Dr. Mehta called me that morning about 9:30am with the MRI results. He said that the radiologist reported that there was something around the back side of the pituitary gland that looked like it may be swelling. He said it was really prob nothing but he wanted a neurologist to look at the MRI just to be sure. I of course was still worried but not freaking out too much. I requested a different neurologist as I had planned on seeing a different one anyways and luckily the one I wanted, Dr. Carl Barr was on call that day and the next day.
The scope was performed and nothing abnormal but some reflux was noted. Dr. Barr had requested another EEG so they performed EEG #4 that same night. Dr. Barr came in the next morning and explained that the EEG results were normal. However, the radiologist had missed "some things" on the MRI. He explained that there were multiple vascular abnormalities on the MRI. The pituitary was malformed sort of flattened and he was contributing a vascular abnormality near it as the cause. He brought me out to the nurses station to go over the images. Slide after slide he was saying "see that vessel...it shouldn't be there. see that one...its enlarged. See tha..its not normal!" I was getting nauseous at this point and had trouble concentrating. He said that he really didn't know much until is does another MRI of his veins, arteries, and pituitary. He did say that they may come back and show that all of this was insignificant but he did not believe that this would happen as this was very abnormal looking to him. I also showed him the video of Ellis shaking and he felt that this was absolutely "a very significant event". He said he would prob not recommend medicating with anti-seizure meds unless they got more frequent. The other MRI's will hopefully be tomorrow am as he will be NPO (nothing by mouth) again at midnight.
That's about all the information that we have for now. We do know that his motor and speech etc development is very normal right now. This is very encouraging news. We will try to update the blog as soon as get some more test results.
Thanks everyone for their continued support and prayers.
-Carrie
