When we got released on Monday and she hadn't had a fever in over 18 hours and still wasn�t normal, they began to wonder if everything was really alright. We told them that she was NOT her NORMAL self; she was crabby, clingy, whiny, dizzy, walking into walls, falling off of chairs, frustrated that the TV was sometimes blurry and her "eyes didn�t see right"
So they dropped her dose from 10mL to 6mL twice a day.
We gave her the evening dose on Monday night and the morning dose on Tuesday morning and then took her to the dayhome where she fussed for a moment and then proceeded to sleep the ENTIRE day and then came home and just lay on the couch, not eating more than a few mouthfuls and drinking whenever they saw her awake.
I had several discussions with her paediatrician through the day who advised me to just stop giving the anti-convulsant to her at all and we would have a follow-up appointment on Friday when all the Phenobarb had a chance to run through her system. That night (Tuesday) she was terribly lethargic, her eyes hovering at half-mast and looking pale despite being warmish to the touch. Since the medication was still in her, I figured that it was just weighing her down. But then she had this really hyper period where she was running around in circles, jibbering and jabbering nonsense. Now, when I say �running� keep in mind that she was still very disoriented and frequently falling into walls, furniture and people nowhere close to her. But it was a change from the lethargy so I just let her go.
And then she lay down to "have a rest"
She rolled her eyes a few times, I called to her, my heart leaping with a sudden rush of adrenaline-fueled fear. She'd open her eyes, roll them back and close them again. She repeated this about three times and then fluttered her eyelids for about 30 seconds and then fell into a deep sleep. Her breathing was slow and unlaboured and, by all accounts, I shouldn�t have been terribly worried. But I was. This latest incident in a string of strange happenings, was just a nother part of the puzzle that is Julia�s health. I couldn�t rouse her for about 2 hours (her normal �post-ictal� period) so, I packed her back to the hospital after Health Link emphatically thought I ought to take her in. Once there they said that she probably had a seizure but since it was past the post-seizure period and she was coming back to "normal" we could just go home since we had a follow-up appointment with the ped anyway.
On Friday, she was switched to Tegretol, another anti-convulsant, and everything seemed to be going well. The medication didn�t taste nearly as horrible and Julia�s reliance on fever reducers was dropping as well. She was back to her almost normal happy self and everything looked really good.
Then about 5 days in, she broke out in a FULL BODY rash. She even had bumps on the tips of her ears and in between her toes! Off to the doctor, once again, where they told me what I already knew: she was allergic to Tegretol and was taken off post haste and given some Benadryl to counteract the reaction to the anticonvulsant (are you still with me?!) but, of course, things were still not OK. She was getting worse not better, her face started to puff up a little so I took her to Emerg and they prescribed an oral steroid to take care of the allergic reaction to the meds. The attending physician at the hospital gave me some run around about how she didn�t look so bad and I should just keep her on the Benadryl since he didn�t see anything wrong with how her face looked and he couldn�t hear anything that showed that it was affecting her breathing. He went on to say how oral steroid use could stunt her bone growth and cause liver damage and I was freaking out. But I took the prescription anyway and asked the pharmacists on duty if I really did have to worry about stunting Julia�s development by giving her this steroid to bring down the rash and swelling and they looked at me like I had grown two heads. With prolonged use, sure there were concerns but 5 days wasn�t exactly cause for hysteria. It was all crazy business and I really did just want her to get better quickly so I gave it to her. And it only took two days for her symptoms to subside completely.
And now, we wait. She has a follow-up appointment for the EEG that she did, way back when, in Edmonton. At that time I will ask if we can get the referral to the pediatric neurologist bumped up to the early summer and maybe see how things go.
I am just glad to have my Julia chirping about birthdays and surprises and toothpaste.
Much appreciation to those who prayed and sent positive thoughts along this tenuous world wide web that draws us together even as life pushes us apart.
3:46 p.m. - 2006-03-02