Have you ever heard of this? Post # 173 Test results, she is better!

[Mommy2cody]

I dont have any advice, I just wanted to tell you I hope everyone in your family gets well soon!

 

[RUDisney]

They have two little boys so a little girl would be great even though the four year old wants a brother because "a sister would follow him around and want to be his girlfriend".

That is just too precious. I hope his Mom writes that down to remind him of it later. Congratulations on the new addition! Isn't it funny how good comes with bad?

Sarah's illness is starting to sound like my BFF's DH about 20 or so years ago. He did a tour in Panama with the army. He came home with a horrible parasite. He went through testing like Sarah is but they could never figure out what the actual parasite was to treat it. Actually, they were assuming it was a parasite. He got better within a couple months and life went on. He's never had any issues because of it since.

Hopefully, if no dr can define what is wrong with Sarah, she'll be healthy on her own soon enough and none of the hows and whys will matter.

 

[booger73]

We almost never (i.e. ever want to) put in a picc or port when someone has a fever, much less a possible unknown infection.. just makes things worse. Sorry about the vampiring, but probably unavoidable

Well.. it's obviously not bacterial, that would have shown up by now.. course still seems viral more than anything.. some titers might come back eventually that point to that, but then again, may never find out... the doxy may or may be helping - i'm sure they'll ask to complete the course regardless (esp if etiology is still unknown)..

Interesting that the liver enzymes are still high - goes along with inflammation.. which could go along with inflammation earlier (i.e. fever, headache/meningeal or brain irritation).. if they're trending down i'd say the whole course seems like it's getting better (i.e. HA, fever, etc).. I don't remember if I had asked before, but did they run a ANA, ESR or CRP (just to look for autoimmune/inflammatory things)?

Interesting that she feels palpitations and such at a Hg of 10.4.. that's usually well above a level and should be fairly compensatable (although i know she's felt bad for a few weeks now).. good that Echo is normal.. CMV shouldn't be in this picture because she's fairly immunocompetent I would guess, but it would be something to think about if they haven't already (as CMV causes hepatitis, myo/pericarditits (heart stuff), and meningitis/encephalitis)

Sorry ain't got much else for you.. they've run most everything I can think of... may just have to wait for the viral titer/cultures

 

[minniecarousel]

aw, gee - you guys hang in there. What a tough time for your family. I hope Sarah continues to feel at least a little bit better. (although it must be so frustrating to not know what this is.)

Congrats on a new little coming to the family!

 

[CJBaby]

Just wanted to add in some hugs and prayers. I pray that this is all a distant memory for you all soon and that your daughter and sister are restored to health quickly. God bless you.

 

[Rose&Mike]

Continuing to keep you all in my thoughts.
Rose

 

[mommytobug]

 

[Piglets Mommy]

I'm sorry that you still don't have any definitive answers. I'm glad she has been feeling good enough to go to school though..that's a start.

Congrats on the new little one on the way!!!

 

[lucyanna girl]

She made it through another day at school but was tired out. Fever hasn't been over 99.6 today that I know of.

I guess it just takes a while to recover from being so sick. I look at her and am so thankful she is better. A little while later her eyes look so bad that in my heart I'm scared there is still something wrong. You can always tell when my kids are sick by looking at their eyes.

Just being a hovering mom now I guess. I really am thankful that she seems to be better.

booger73. I know the Hepatitis test was negative. I'm not sure about ANA, ESR or CRP. I know there are some test that they said took quite a while to complete.

I asked what he was looking for when he said really weird stuff but I had never heard of and can't even remember the odd names he told me.

Three years ago when she had the surgery in Orlando they gave her four units of blood. They assured me that blood is very well tested for HIV now but what about other weird diseases and could any thing take this long to show up?

Penny

 

[klj27]

How has the rest of her week been? I hope she is continuing to improve.

 

[kafitty]

i was thinking about you guys today, trying to keep sending those positive vibes. i'm so glad her fever came down! having it being high for such an extended period can't be real good. She's so tough for continuing with school, good for her!!

 

[mommytobug]

Any news yet? I was thinking about you all.

 

[lucyanna girl]

I just wanted to come back and thank everyone for their kindness.

Sarah is better. She has not run a fever in four days and is slowly regaining her strength. She still comes home after school and takes a nap on the sofa.

We saw the doctor yesterday. He says that most of the blood work is in and that frankly he just doesn't know what she had. Her Lyme titer was ever so slightly elevated but not enough to make that a likely possibility. Her liver function is back to close to normal. She still is anemic, 10.5.

I questioned him as to whether her surgery three years ago when her blood level fell to 6.1 was connected and he said he just doesn't know. He also said that there are still a couple of other doctors following her case and that he intends to talk some more with them. I asked him how we could be sure this would not come back in three months or three years or whenever and of course he said we can't be. She is to see him again in a month.

My husband and I are considering taking her to a hematologist. I know she will hate the thought of having more blood taken, all of the bruises are just fading.

I very much appreciate all the support I got from all of you. Thanks again.

Penny

 

[DisneyBlonde]

So glad to hear it. Sarah may not want to think about additional testing now...but if it can prevent something similar from occurring in the future, it's so worth it.

 

[RUDisney]

Hopefully, she'll have no repercussions, just like my BFF's husband after his parasitic infection from Panama.

I'm so glad she's feeling better.

 

[lillygator]

glad to hear she is better.

 

[booger73]

Glad she's better..

If it was Lyme, at least know the Doxycyline should have helped do it's job.. I'm sure he/they know they can always repeat Lyme titers or do a Lyme PCR if they really want to know..

Either way, I think it might just be watch/wait.. it's good she's better

I would think the anemia is from blood draws plus her bone marrow not wanting to work some with the acute 'illness'.. i'm not sure a hematologist would have too much more to offer... (if the Hg returns to normal in a month or so, then, i would think no biggie.. the only other thing they might do is a bone marrow bx, but.. i would doubt she's up for that)

 

[CJBaby]

I hope she continues to improve and you can relax a little!

 

[lucyanna girl]

I just wanted to come back and let you all know how Sarah is now.

She is better. She is not yet well.

She still is not 100 percent. She runs a low grade temp occasionally, just around 100 and not all day. Sarah hasn't napped since she was two but now she comes home from school and falls asleep on the sofa more days than not. Her color is still off too. We are still seeing the doctor and he thinks she is just slowly recovering from whatever she had. She has lost twenty-five pounds since all of this started.

I am thankful that she is much better than she was and hope that he is right and she will eventually recover completely. Now H1N1 is confirmed in her school and today she came home and told me one of her friends has it.

Thank you for all the prayers and good thoughts that were sent our way.

Penny

 

[Liberty Belle]

I just wanted to come back and let you all know how Sarah is now.

She is better. She is not yet well.

She still is not 100 percent. She runs a low grade temp occasionally, just around 100 and not all day. Sarah hasn't napped since she was two but now she comes home from school and falls asleep on the sofa more days than not. Her color is still off too. We are still seeing the doctor and he thinks she is just slowly recovering from whatever she had. She has lost twenty-five pounds since all of this started.

I am thankful that she is much better than she was and hope that he is right and she will eventually recover completely. Now H1N1 is confirmed in her school and today she came home and told me one of her friends has it.

Thank you for all the prayers and good thoughts that were sent our way.

Penny

I guess I don't need to tell you to have her wash her hands frequently and get as much rest as she can. Does she take vitamins? If other illnesses are going around, she needs her strength to fight them off. I'm glad she's better and hope she is soon fully recovered.