Severe UTI foils 16mo seizure free

[rackelsmom]

Hi all,

I've been out on vacation for a bit but wanted to pop in and fill you in on what is going on with Rachel. She was 16mo seizure free and then July 4th began szing again. Two weeks prior I took her to her ped for trace amounts of blood in the urine, thinking UTI. He didn't agree, argued with me and said they would send out a culture. I never got a call back and when I called they said they assumed it was fine.

Then on the 4th she wasn't acting right, I checked and there was gross amounts of blood. Wound up in the ER. New type of seizure accompanied this, she had over 160 of them on the 5th. Diastat didn't work, long story short, she is back on Klonapin for a couple of weeks to see if that will get her over the hump until the infection is gone. A full week on the meds and she is still showing trace amounts of blood.

We found a new ped, one who will actually listen to the parent. I'm still a bit ticked off that he blew me off not once but then again on the 6th when I took her for follow-up. He said, "What do you want? I didn't cause her szs! This isn't my fault." I told him I just wanted him to say he was sorry for not listening to me and he rolled his eyes.

Rachel's seizure's are now down to about 12-20 per day and we're hopeful as the infection clears she will stop altogether again.

Blessings,

Ann

[Bernard]

Oh my... best wishes for Rachel. That pediatrician sounds like an asshole.

[Meetz1064]

to agree with Mr B. And, I'd be talking to the Medical Licensing board, and possibly a lawyer. That was TOTALLY unnecessary. She was enjoying a great quality of life until that happened.

[Cint]

Ann,

I have to agree with Bernard and Meetz, also!! They both were thinking what I was thinking as I read your posting.

I certainly hope Rachel is seizure free soon!

[katie's mom]

Oh, Ann I'm so sorry for this heart-wrenching time. And what an awful ex-ped on top of it! It so often seems like the world just piles up on you with our epilepsy valleys. Please keep us posted on Rachel. We are sending many prayers your way. Sorry for the delay I have not been back on this site for many weeks. Would a kidney specialist be in order? What does Dr. K think?

Love & Prayers!!

Kristi

[rackelsmom]

Update on Rachel, the UTI is now gone and her seizures are fewer and further between so we are counting our blessings. Right now she is going through a lot though so please keep her in your prayers. Her new ped is really nice and we are happy with her. We are saddened though because the secretary at her old ped was fired for commenting in the office, "Ann was right, these multistix are expired." Since there is no permanent damage to Rachel's health (Thank you Jesus!) we will not be pursuing action through an attorney but this isn't something that is just going to go away for him. I hope that as a result of this it will affect how he treats others in the future in a positive manner. I know we all have bad days and he is obviously going through something in his life that he is having a difficult time handling so we are praying for him in that arena, but it doesn't excuse the harm that came upon my sweet baby. We were all fortunate this time it wasn't life threatening.

Kristie, looking forward to seeing you in August!

Blessings,

Ann

[katie's mom]

When you have time, it may be worth a call to the Boards, etc.!! There is no excuse whatsoever for mistreating you & Rachel that way! Glad things are getting better - keep us posted. Am excited about seeing you, too!

[Kayleesmom]

I'm so sorry for what you guys have been through. You are in my prayers.