As I mentioned yesterday, Dr. Lopez (neurologist on Hannah’s Gaucher team at the NIH) came to visit with Hannah today at our house. It was wonderful seeing her again, and it was a very positive visit from the standpoint that Dr. Lopez got to see Hannah being “Hannah” instead of tantruming constantly because of being in clinical setting.
Dr. Lopez took video of Hannah, trying to get good visualization of her abnormal eye movements (strabismus, nystagmus, etc.), so the rest of her team at the NIH can see what us going on. She also focused on getting video of Hannah’s movement disorder as well.
Hannah played while we chatted, sat on Dr. Lopez’ lap while she looked through her favorite books, and crawled all around. Hannah didn’t even realize she was getting a neuro exam at the time — it was good!
We had an interesting conversation with Dr. Lopez. Because Hannah has definite “lateralization” of symptoms on her left side (her left eye nystagmus, misuse of her left hand, etc) plus her new-onset movement disorder, one possibility that Dr. Lopez brought up was that Hannah could have suffered a mild stroke back around the time she had her initial seizure in May (which led to her hospitalization). She by no means said that is what happened, but she did bring it up as a possibility to consider.
We know that Hannah had a seizure due to anoxia (lack of oxygen to the brain) due to her tantrum breath-holding spell. Her O2 sats had dropped into the 50s for at least 5 minutes before the paramedics got to her even with the oxygen we were giving her. We know the seizure lasted for about 15 minutes, and she had a significant recovery process those few hours after the initial seizure. Her CO2 was quite high for about an hour or so in the first ER (before we were transferred to TCH). It is an interesting concept that seems to make a lot of sense.
When we go back to the NIH in March, they will definitely do another brain MRI to see what changes there are from her brain MRI back this past March.
Dr. Lopez was able to see her chorea movements, even though they were at the minimum because she had just recieved her midday meds before she had got there. Dr. Lopez was open with the fact the movements could also be drug-induced from the sedation (which actually would be better than her having had a stroke, as there is more hope for the movement disorder lessening and hopefully disappearing someday). It is just really hard to say at this point what caused it.
Dr. Lopez offered to come back to visit us Thursday morning before she gets on a plane back to her home. She wants to see Hannah’s movements at their most significant, which is before she gets her morning meds.
I am so grateful that Dr. Lopez and the NIH team is taking such care in trying to help figure out what is going on with Hannah. I feel so very lucky to have doctors like Dr. Lopez, Dr. Sidransky, Dr. Goker-Alpan, and Dr. Schiffmann looking out for my beautiful girl.
I do have homework — I need to come up with a timeline for Hannah’s hospitalization including the seizure, meds, etc. Thank goodness for my blog — there is no way I could remember all of it!
I know how scary the words stroke can be. I hope this offers some comfort. Samuel suffered from 4 strokes that we were never able to pinpoint the cause of…anoxia is a possible cause, being that he spent hours with sats in the 50s. But, the great thing is that over the course of a year and a half, he recovered almost completely from those strokes. I know that isn’t always the case, but we were fortunate that his strokes healed fairly well as did the damage to his body. I pray that if it is a stroke, that Hannah recovers and her symptoms improve.
Missy
I do hope and pray that if in fact it was a stroke that there will not be any permanant damage and that Hannah will recover from it completely.
So glad to hear tht you have such a wonderful team of doctors. It certainly makes a huge difference!
I continue to pray for you all everyday.
Love,
Susan