Well she had her EEg yesterday and Blood work and Urine for further testing from bad results she had gotten while in the hospital. So it all had to be retested with a fasting. Here is an e-mail from the dr that I got this morning:
The EEG continues to be abnormal but is NOT hypsarrythia. I think this is an improvement from before. When you all get back try to set up an appt and we can talk about what is the next step after all the labs are all in.
Her Iron was low-34 (50-120 Normal)
Hemoglobin is 10.3 (10.5-13.5 Normal)
PVC 33 (33-40 Normal)
the rest that is final looks OK. Some labs are pending and take more time
Great news about the hyps being gone! They tested her Iron because she all of sudden had a craving for eating any kind of paper tissues, toilet paper you name it she ate it! They call it "Pyka"(sp?) but they say when kids do this it usually means their iron is low/anemic. Glad we had her tested for it since it seems low!
We are off on Vacation today so I will update more when we get back! Happy Holidays!
Friday, December 01, 2006
Our poor little angel is having the roughest 2 weeks. We have made 5 trips to the Dr. and 1 ER trip all in 2 weeks time! She refuses to eat since coming off the ACTH. Her drinking is very poor, a few sips here and there..
She They have ran many blood and urine tests. Some the tests ran are RSV, Strep, Dehydration, Acidosis, and Chest x-rays. She has white spots on her tounsils but it is not strep just a viral thing and she has bronchitis with temps of 103. She is showing a small sign of dehydration but not enough to put her in the hospital. They assure us she will be ok as long as she drinks a little and isn't peeing out everything taken in. Which for her isn't the problem as she barely goes at all.
Which brings us to her next problem we encountered yesterday. We noticed that when she would go pee she would scream horribly and pull at herself then you would smell the urine. So we took her back to the Dr. yesterday where they had to do a cathetar again to get urine. She now has a Urinary Tract Infection so she is taking an anotibiotic for that. I hate seeing her go through all this it just breaks my heart!
We have been in close contact with her Ped and Neuro of all these problems they are watching her very closely. Her neuro decided to take her Topamax some more since she is not drinking much. So we are down to 100mg right now and we are to see how she is tolrating this move for a few days. So far so good not many seizures maybe 5 a day! But of course she is sleeping the days away since she is sick!
Also the blood test they ran when we wher in the hospital for her leg well those all came back elevated. So they have requested all to be redrawn with a fasting to see if things change. It was tests like Amino acids and such. Her chromosones tests is the only test that came back fine. These tests will be ran on Dec. 14th the same day that they do her EEG with B-6 injection to save us a trip and 2 pokes!
Our next steps as far as meds go aren't really set yet just waiting for her to get well before we move forward. We know its weaning some meds first then add a new one. Which they way things are going it might be the 1st of the year!
By the end of this week we had made 2 more trips to the Dr. on Thursday and Friday rounding out our visits to 7 in 2 weeks.... Poor Baby Girl! On Thursday they had to do another cathetar to get a urine sample and found that she has a Urinary Tract Infection so they gave her an antibiotic, poor baby girl would scream every time she went potty! Then on Friday she was throwing up and had dirreah so it was back to the Dr. for lab work to make sure she wasn't getting dehydrated she was at 7 and the numbers are like 7-15 or something like that so she was on the low end but he thought she was ok. Just told us to syringe feed her every 5-10 minutes with liquids. On a positive note the fever is gone and the cough is almost non exsistent!!!! Now if we can just get her to start eating and drinking again! Cameran is already shedding lots of the chubbiness! Her face and belly have slimmed down lots. She is at 32 pounds right now and losing quickly since she isn't eating! We are so praying that she is well soon!