Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[pnutallergymom]

Awww. Kelly, I am so sorry you guys didn't have a better morning.
Wish things were different. Sorry.

What were there thoughts about how to treat future bugs? And what about the ceftriaxone? Can you use it or not?

 

[Momofwishkid]

Oh Kelly Im so sorry the results werent good. How did Ali tolerate the tests? So may I ask what you do from here? Will they just go ahead and try the questionable med if she needs something or do they have a defferent plan in place?
She dosent like RFC Was it the noise? Im a little afraid it will be to noisey for Gavin.

 

[kellyw8863]

Awww. Kelly, I am so sorry you guys didn't have a better morning.
Wish things were different. Sorry.

What were there thoughts about how to treat future bugs? And what about the ceftriaxone? Can you use it or not?

No thoughts. We didn't see her allergist today, as he wasn't in clinic. We just got a long list of things that she cannot take and were told that he will be contacting us before the end of the week to discuss what we should do in the event that she does need an antibiotic. I do know that this means there is nothing she can take on an outpatient basis.

As for the ceftriaxone, the nurse said it would have to be administered IV, that it can be given IM, but it's usually paired with something else when it's done that way. She couldn't tell whether it was a positive result because Ali's skin is so sensitive anyway. It was "borderline," meaning she could have a reaction if/when we give it to her.

 

[kellyw8863]

Oh Kelly Im so sorry the results werent good. How did Ali tolerate the tests? So may I ask what you do from here? Will they just go ahead and try the questionable med if she needs something or do they have a defferent plan in place?
She dosent like RFC Was it the noise? Im a little afraid it will be to noisey for Gavin.

She HATED the noise. Every time an animal would screech, she would jump ten feet and start crying. She finally resorted to keeping her ears covered while Garth fed her. We thought she'd love it.

As for the tests, she didn't tolerate them well at all. She had 8 on her back and another 9 in her upper arm. The ones on her back were the scratch tests, so those weren't bad, but the ones in her arm were all intradermal and it took three of us to hold her down. I'm not sure what we do from here. I know in the past, they've talked about doing rapid desensitization whenever she needs abx, which is fine. It's just with the mito, suspected infections need to be treated aggressively, and we can't do that now.

Thanks for the thoughts.

 

[pnutallergymom]

As for the ceftriaxone, the nurse said it would have to be administered IV, that it can be given IM, but it's usually paired with something else when it's done that way. She couldn't tell whether it was a positive result because Ali's skin is so sensitive anyway. It was "borderline," meaning she could have a reaction if/when we give it to her.

I have seen Cef given IM a million times without it being paired with anything. What was she talking about?? We used to do it at my Pedi office ALL the time. Now, whether or not she will react to it, obviously is an entirely different issue.....but, I just wanted to let you know that it absolutely can be given alone. Something just to question the MD with when you talk to him.

Good Luck Kelly! Hang in there!!

 

[Applemomma]

Thanks for the thoughts. It was a truly miserable morning with truly miserable results. She reacted to everything but ceftriaxone, and even that was questionable.

And as if her morning wasn't stressful enough, we took her to the Rainforest Cafe for lunch as a "treat," and let's just say she wasn't a fan. I guess I'll be cancelling those ressies for RC at AK.

Wish things had gone better for you guys today ....I'll keep praying!

 

[maroo]

Thanks for the thoughts. It was a truly miserable morning with truly miserable results. She reacted to everything but ceftriaxone, and even that was questionable.

And as if her morning wasn't stressful enough, we took her to the Rainforest Cafe for lunch as a "treat," and let's just say she wasn't a fan. I guess I'll be cancelling those ressies for RC at AK.

I am so, so sorry.

I am not sure how I missed this...I saw it on your CB first.

 

[pacrosby]

sorry to hear of the unfortunate results

and I'm sorry to hear that she didn't enjoy Rainforest. Not to sound insensitive but I must admit that I actually giggled at the thought of your poor girl jumping everytime the restaurant erupted. There's alot of erupting in there and therefore there must have been alot of jumping!!!!! Just so you know.........I'd suggest you keep her far away from T-rex in DTD too




Pamela
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[Thumper321]

I'm so sorry that you guys had a rough day. I wish you had gotten better news. I hope that the doctor can give you a game plan and put your mind at ease a little bit.

 

[yinyanggirls]

What a day! I'm so sorry that the results were not what she needed! I hope the doc can get creative and figure out another way to treat her when necessary.
And how sad that she was not enjoying RC. I bet after her rough morning, all of her sense were on protective overload. Poor girl, and mom.

 

[dmbfan]

I was just reading your CB site this am.... Sorry it did not turn out the way you had hoped. I do not know anything in this area, so please forgive me for not be able to offer any advice.

I pray she contiunes to stay infection free for a while....my guess is otherwise you have to go to the hospital... Just a thought, what did they use for antibotics in the past when she had infections?

Call me if you wanna chat..

 

[kellyw8863]

I have seen Cef given IM a million times without it being paired with anything. What was she talking about?? We used to do it at my Pedi office ALL the time. Now, whether or not she will react to it, obviously is an entirely different issue.....but, I just wanted to let you know that it absolutely can be given alone. Something just to question the MD with when you talk to him.

Good Luck Kelly! Hang in there!!

Thanks, Shannon. I'll definitely ask about it. After doing some reading, my guess is that she said that because after doing some reading, it seems that ceftriaxone doesn't offer great coverage. I know both times that Maya had it for kidney infections, she was on something else at the same time. We haven't heard from Dr. L. yet, so I'm not sure what the plan is.

I hope that Brig is feeling better soon - it seems I read she has RSV? Poor baby.

Wish things had gone better for you guys today ....I'll keep praying!

Thank you for the thoughts and prayers - they mean a lot!

I am so, so sorry.

I am not sure how I missed this...I saw it on your CB first.

Thanks, Maroo, and thanks for leaving a message in her guestbook.

I'm so sorry that you guys had a rough day. I wish you had gotten better news. I hope that the doctor can give you a game plan and put your mind at ease a little bit.

Unfortunately, I know the results are grim because they confirm what we already assumed to be true. But, a plan would be good because that is one thing that's lacking. Thanks for the thoughts!

What a day! I'm so sorry that the results were not what she needed! I hope the doc can get creative and figure out another way to treat her when necessary.
And how sad that she was not enjoying RC. I bet after her rough morning, all of her sense were on protective overload. Poor girl, and mom.

It was totally our fault. She was still on edge from the morning and RFC just put her over the edge. We did have a good laugh about it last night, though. Not that it was funny, funny, but you know what I mean. Thanks for the thoughts!

I was just reading your CB site this am.... Sorry it did not turn out the way you had hoped. I do not know anything in this area, so please forgive me for not be able to offer any advice.

I pray she contiunes to stay infection free for a while....my guess is otherwise you have to go to the hospital... Just a thought, what did they use for antibotics in the past when she had infections?

Call me if you wanna chat..

Thanks, Christine. In the past, we still had antibiotics to work with, but then we'd lose them 1/2 way through the course of treatment. So last spring, we lost Zithromax. Then with this past sinus infection, we started with Bactrim in the ER but she broke out in hives. Then we tried levofloxacin, and again, she broke out in hives. The last one she tried was cefixime, and she broke out in hives. That was the end of the line with antibiotics, but at that point, she had enough days of ones that she reacted to before reacting that the infection cleared. But, it left us with nothing. Does that make sense?

I'll try to give you a call in the next week or so to make plans to get together! Have fun celebrating Jake's birthday!

sorry to hear of the unfortunate results

and I'm sorry to hear that she didn't enjoy Rainforest. Not to sound insensitive but I must admit that I actually giggled at the thought of your poor girl jumping everytime the restaurant erupted. There's alot of erupting in there and therefore there must have been alot of jumping!!!!! Just so you know.........I'd suggest you keep her far away from T-rex in DTD too




Pamela
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

Oh, believe me, we had a good laugh about it last night! Though now she's saying that she wants to go back as long as her sister Maya is with her. So we'll see!

So thanks again, ladies, for all the thoughts, prayers, hugs, and words of encouragement. She's having a rough day today and is all broken out in hives. I went to work this morning but came home early to be with her since she's so miserable. She's also running a temp, but I'm pretty sure it's just a metabolic fever. Hopefully, it's not something else. We'll see!

 

[dmbfan]

Oh no, sorry to hear Ali has a temp...how high is it? Hannah has been running fevers on and off this last week, along with a bad sinus thing going on. She dose seem better today, fever wise.

Hope Ali feels better soon...

 

[kellyw8863]

Oh no, sorry to hear Ali has a temp...how high is it? Hannah has been running fevers on and off this last week, along with a bad sinus thing going on. She dose seem better today, fever wise.

Hope Ali feels better soon...

Thanks! She's doing much better today, so I'm sure it was just a reaction to everything from the day before.

My sweet girl before she really knew what was coming...

 

[dmbfan]

Ohh poor Ali...she still looks so sweet though...glad she is feeling better today..

 

[Momofwishkid]

What a cutie! Glad she's feeling better today.

 

[pnutallergymom]

Glad she is feeling better. Cute pic!! Were those PJ's from Children's Place I spied her wearing?? If so, Brigge has the same ones...and LOVES them!!

 

[dmbfan]

Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys... Are you as excitied as I am...

 

[kellyw8863]

What a cutie! Glad she's feeling better today.

Thank you.

Glad she is feeling better. Cute pic!! Were those PJ's from Children's Place I spied her wearing?? If so, Brigge has the same ones...and LOVES them!!

Those are CP pajamas! We do Christmas PJs every Christmas Eve. I was such a procrastinator this year that I waited until Christmas Eve morning, and then was so irritated that I couldn't find red PJs. But in hindsight, I LOVE these PJs. They're so soft and cute!

Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys... Are you as excitied as I am...

Yup! How much did you love him and Neil Young in their Hope for Haiti performance? I'm loving me some Black Eyed Peas right now, but what the heck are they wearing?!

 

[kellyw8863]

Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys... Are you as excitied as I am...

He rocks. Going to bed!