We survived another hurdle…

 

5:00 am Monday morning………

Last Thursday I took Tiara to the doctors because I knew she had a sinus infection.  She had been working on a cold and I had been doing everything in my power to avoid it going into an infection but I lost.  She woke up Thursday with a fever and I brought her straight to the doctors and they prescribed a round of Augmentin, her go to antibiotic. 

Friday she seemed not as stuffed up but she was acting weird.  I wasn’t sure if she was having lots of seizures from being sick, was super drugged from the add on of the antibiotic or what.  She was so off balance she could barely walk, so I contemplated reducing some of her seizure medication but that didn’t seem like the best idea.  When she was little, sometimes I would drop down her Depakote when she went on antibiotics because the antibiotics would increase the Depakote levels and if the levels are too high she has more seizures.

Saturday morning she woke up with cold sores all in her mouth and forming on her lips.  Crap!  This has happened before and in the past the doctor said she was prone to cold sores, probably a part of the virus that lead to a sinus infection.  Well, she couldn’t eat and by Sunday she refused to drink anything.  By Sunday night I was getting frantic as she hadn’t urinated in 24 hours.  Lou came home from work early for once, Thank God, and he promised to play hide and go seek with her if she drank a whole cup of Gatorade.  She finally finished the cup after a while and went to the bathroom so I knew she could make it until the morning without a trip to the ER.

I had researched the cold sores and decided they were a side effect from the Augementin and not related to a virus.  Despite my own opinion of her condition, I put in a call to my ER doc friend and wanted to see if he thought I needed to bring her into the hospital for fluids.  I mentioned the sores in her mouth and the fact that is she wasn’t eating or drinking.

He said to stop the Augmentin right away because it wasn’t a side effect but a sign that she was allergic to the antibiotic and the sores were the beginning stage of Steven Johnson’s disease.  HOLY CRAP!  Our family has a long and scary history with Steven Johnson’s and it can be life threatening.  I was so grateful I spoke with him because I was planning on giving her a dose in 2 hours which would have poisoned her more.  He gave me some alternative antibiotic ideas to pass along to the pediatrician and suggested I give her some Benedryl.  I am grateful I figured out why she had the cold sores, but it took me way too long, putting her at risk.  My doctoring skills were really crappy on this one!

So now what?  It is 5am on Monday morning and I woke up a few minutes ago because I am worried about the day.  I need to get more fluids in Tiara and bring her back to the pediatrician’s this morning BUT we have an appointment at UCLA with a neurologist/psychiatrist we have been trying to see for 2 YEARS!  If we miss the appointment we may never get in again, but if we go and she is dehydrated she will end up in the hospital.  Not to mention it is going to be impossible for the new doctor to assess her behavior because she is sick and listless.  I also realized I am going to be in trouble when we get to the appointment, if we go, because I don’t have the zillion page questionnaire filled out because they forgot to send me one, and I forgot to remind them.  UGH!  As much as I am dreading going to UCLA, I don’t think we have a choice. 

———————————————-Off to make a plan__________________________

3:24 p.m Monday

I’m back!  Good news, I was able to force Tiara to drink more fluids and eat a soy yogurt for breakfast so I am pretty sure she is going to be fine. 

I got an appointment for the pediatrician and 8:45a.m. and she was really worried about the sores but was happy we listened to our doc friend and stopped the Augmentin.  She prescribed a new medicine and we were home by 9:30 a.m..

Tiara took a short nap and we left for ULCA by 10:30 am and walked into clinic at 11:55, with 5 minutes to spare.  By some huge miracle we saw the new doctor right away and she was fantastic.  She had been hearing about Tiara for years from TT’s neurologist so she just reviewed her medical file on the computer and didn’t even mention me not having the forms.  LOVE THIS LADY!  She was a really great doctor and we left with a prescription to help with Tiara’s outbursts and were home by 2:00 p.m..  I was so tired driving home I kept having to sing really loud, which of course Tiara loved, so I wouldn’t let me eyes close but now the worst of the day is over and I feel like I have climbed a mountain.

Have a wonderful Tuesday!!!

 

xoxo tiffani

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