Friday, May 17, 2013

Eliah Update- Good and Bad News

Tuesday, March 4, 2008

Eliah has been doing great.  Every day he improves.  We reduced one of his seizure medications on Thursday morning, and by evening he held his head up for 15 minutes and talked up a storm.  He has been much more active and involved.  He looks around the room, follows objects, and makes great eye contact.  Last Tuesday he rolled from his belly to his back for the first time.  We just had to put his shoulder down, and he went the rest of the way.  We have been thrilled.

He has started some Physical Therapy and we have seen some good improvement with that.  We also have a list of exercises to do with him daily to get even further.  I feel like he is just now starting to be a baby.  I cannot wait to see in two weeks when he is off Phenobarbital completely.

As he has been coming off one of the seizure meds, I have been concerned about his blood pressure.  It has always been elevated, but the Phenobarbital is used to reduce blood pressure.  Since we have been weaning him off this medication, we have seen an increase in his blood pressure.  I called the doctor and insisted that we be seen by a specialist.  We went to a specialist the week before last and were very surprised to see that is was worse than I expected.  Blood pressure for a 1yr old (which Eliah is only 9months) is supposed to be no greater than 104/45.  His was 169/97 in a calm state.  He has Stage 2 Hypertension.  And companied with his Hemophilia, he is at great risk for a stroke when he gets upset.  Basically, he is a ticking time bomb. 

So the doctor immediately put him on Norvasc, which has never really been used on infants.  He didn't even know how to dose it.  He also ordered an MRI/MRV, blood tests, an Echocardiogram and requested that his blood pressure be checked 3 times a week.  We are still waiting to hear the results from the MRI/MRV and blood tests. 

Yesterday I took him to get his blood pressure checked.  It was down to 75/50!!!!!!! 

We then ran upstairs to get the Echo done.  After the test, the Cardiologist came in the room to tell me that Eliah has a Congenital Heart Defect.   It is called a PDA.  Here is a website that can explain what it is.
The doctor explained that this is the reason Eliah turns purple and stops breathing when he cries.  Fun.  He also has some thickness in the lining of his heart from the hypertension.

Right now the approach is to wait and see since his Hemophilia complicates  all the ways to resolve it.  We go back to the Nephrologist (blood pressure specialist) on Wednesday to find out test results. 

That's about it for now.  I will hopefully be able to update in a few days.

eliah james: Eliah Update- Good and Bad News
Mar 4, 2008 – eliah james. Eliah was diagnosed with Severe Hemophilia A at birth. He has had a total of three strokes which left him with Brain Damage (Cerebral Palsy). ... his Hemophilia, he is at great risk for a stroke when he gets upset.

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