Thanks so much for taking time to let us know about this.

Yes I'll be keeping them both in my prayers.

Thanks,
Jan

 

Jodie needs prayers and good thoughts right now.
 

Prayers, Jodie!

------------------
oops!
Lymetutu

 

I will keep you and your family in my prayers. Hopefully the Dr. find something soon for your daughter.

Starr
 

--jd--
 

Praying for you and your daughter.

IMHisda
 

So very sorry to hear about all that's going on right now.

Please let us know if there is anything else we can to help you.
 

Goodness, I'm so sorry to know that your precious one is having such difficulty right now.

Just know that we are all keeping you in our thoughts and prayers.

Much love,
Melanie

On Wednesday of this week, my daughter came home from school not feeling all that great. She has prior kidney disease; vesticouretal reflux on the left and right kidney, bladder neck implants, neurological bladder and bowel, ureter implants, kidney scarring and much much more.

The biggest thing that set me off to a potential kidney infection etc was that on Wed. , she kept trying to sleep. I checked her fever, but she had none. When she was woken up, she had no clue what she was talking about. She refused her favorite -raviolis and said "Im just tired, let me go to bed".

The next morning, I walked past her bedroom and told her and my son ( who cant bare to not sleep with each other!!) to wake up. My son got up, but no Destiny. I went to her room, stood in her doorway and yelled

"GET UP, COME ON". As I stood there I noticed something horrifying. My daughter was laying in a pool of vomit.

I flew into her room, and literally started tossing my daughter around like a rag doll to get some response from her. She opened her eyes and immediately started screaming out in severe severe pain. My first instinct was, the abdominal pain= she needs to cath.

While I tried to cath her, she put her hands on my head and said "You know, I have a mommy that looks JUST like you".

That was it... off to the hospital. She was talking about ducks and asking me if I wanted to pet them, talking about angels, ice picks, you name it. She was white as a ghost and screaming in pain, swearing and everything- at 7 years old.

She vomitted profusely in the car and started shaking. She was not even registered at the hospital, they rushed her straight back in and when I said "kidney patient" they started performing immediate xrays, ct scans, and blood works. She threw up so much in the ER that they said she was actually vomitting alot of Bile.

Still yet, she had NO fever. They had to give her THREE shots of fentanyl ( sp) for the pain she was in and she was being extremely combative.

Once her blood work and urine results came in, the next thign I knew, two ambulance men were strapping my daughter down and taking her IV poles with her.

They rushed her ( and I mean rushed her) to childrens hospital and put her in critical care. At this point, I still had no clue what was going on with her and was beyond more than a nervous wreck.

They had four doctors over here before I even got my car parked and got into the room where she was in.

I flipped out on the one doctor and he pulled me aside and said "look, we dont know exactly WHAT is going on" He actually laid her lab values out for me to see and started asking me "is this normal for her, with her birth defect"?????

Her potassium, sodium, chloride was GONE wayyy wayyy low. Her Creatine was a 0.02, her bun was dangerously low. her sugar was skyrocketed at 190, her White BLood cell count ( out of their value of 5.0) was 18.9,

Blood in the urine, her urine culture actually came back "too many WBC to count", ANA, SED, RF, VERY high, liver extremely abnormal, leukocytes, and Red Blood Cell was absolutely off the charts high. I mean there is too much to mention. She was also in tachcardyia.

They had her on full oxygen, and two infectious disease doctors started pumping me various questions such as:
Have you had her out of the country?
Has she been in any lake water?
has she eaten raw foods or undercooked?
does she or did she have any rashes, any joint pain?

Well, duh, how they want me to answer the last questions?

They put her on Rocephin 850 mg in the ER and were giving her potassium, sodium, etc.

They stabilized her pretty darn well with that mix! By 9 pm that night ( from 8 am) she was up playing nintendo games. Once in a while, she would say something

totally off the wall or ask me if I seen the monster run by. The doctors told me it was because her kidneys werent working and her potassium was so low, you can hallucinate.

They performed more testing at Childrens and yesterday morning, before visitors came, they took her in for a Void and Cystiogrammy. They thought that they had this narrowed down to a slipped or blocked ureter implant since her right kidney

was swelled so bad, you could see it.

The Void and cytiogrammy came back normal. Her implants were working.

Her step mom was with her for a long time yesterday as I am battling a HUGE relapse that came on a week before she went down. In one week, i ate a bag of doritos. I just had no appetite, I really wasnt hungry. I had an appointment with my doctor the day this happened

but obviously, Destiny came first!

I made it to the hospital last night by 6:00 pm, wheelchair in tote, because my severe headaches ( again) are preventing me from walking, AT ALL. By this time, Dad was there

and said to me that Infectious disease doctors had done all kinds of testing on Destiny during the day, but that he had not heard anything. I went to the nurses station and DEMANDED that someone come talk to me, and even though Destiny was bouncing around and playing games, etc, I wanted to know what had happened!

I had spoken with her urologist earlier that day ( by having to call his OFFICE!!) and did not get much answers there.

Dr. *M* came in to talk to both me and my husband after I complained.

he started asking about a history of cats and then left it at that and said

"What happened to Destiny is that her body shut down from a severe infection that primarily targeted her kidneys" "OR, because she has kidney disease, a systemic infection hit her body that went TO her kidneys".

"We don't know what that infection is, but whatever it is, responded quite oddly on lab value reports to Rocephin

He then said, like it was no big cookie at all, "due to our suspicion of cat scratch fever and with your history of cats , we have moved her onto Omnicef.

She will need to be on Omnicef for two weeks to cure this infection

I just sat there and blinked at him. If I could have gotten up and choked this man, I would have. If I could have groaned loudly without my head falling off, I would have.

But alas, he then said "You can take your daughter home, she is to see her urologist in two weeks. If she starts

spiking a fever, talking abnormally, sleeping too much, etc, you must bring her back immediately and make an appointment with infectious disease for three weeks".

That was it. Me and my family left and dad scooped up all of her belongings and was not far behind us on the way home.

IRONICALLY? I was sooo sick yesterday and have been so sick for the last past week, and I mean SICK to the point of considering quitting work,

that I called an old LLMD of mine out of desperation of being sick. He was nice enough to talk to me and listen to all of my symptoms and concluded that

A.) its a relapse
b>) it REALLY sounds like bartonella.
c.) Since bartonella has a great habit of being the infection that wont let you COMPLETELY resolve your symptoms, and babesia is the one that holds back MUCHO recovery, and since I have recovered ALOT up until that point, it MUST be bartonella, but he could be wrong

He called in Rifampin for me. My family that stayed at home yesterday after I heard the word "bartonella" from my LLMD

has been calling no kill shelters for my animals. I love them, but not this much, at all.

One half hour after starting rifampin, my severe jaw, ear, neck and headache, frontal forehead pain and eye pain alleviated itself. Three hours after taking the pill OH MY GOD--- I was in tears with pain back in the same places.

So, my daugther is home and sitting fairly close to me sucking down as much chicken soup as she can ( hey its early, but she can do whatever) and Im beyond useless for her.

Hopefully, the rifampin kills me slowly , and the omnicef treats her right

To NJ and CT for DR. J we go.

It sucks that her and I are both in this position again. But thats ok, we can relapse and get well together again.

Considering that she went down EXACTLY around the same time I did, I have no doubt in my mind that this is in fact bartonella again due to the fact that

on the warmest day of the year here in PA about three weeks ago, our little kitties fleas were at an all time high. BOTH of us were bit BADLY while we were playing cards on the floor.

heh, playing cards of the floor? Now I can barely type this and I certainly have no appetite.

I should have foreseen the warnings: I lost TEN POUNDS this month. No lie. Absolutely not hungry at all. Eye pain started to come back, brain fog came rushing in, etc.

And still yet, I thought "NAH".

Welp, thats all folks. I must muster up energy to drive myself to the license center tto get a new license. Joyous.

if I dont come back, its because I had Rifampin rage in front of the cops at the license center. Send Rifampin, candy and alot of water to the Westmoreland County Jail.

Thank you SO much for posting this for me, and everyone that gave prayers for my family.

I was beyond stressed out yesterday when I was awaiting a call from my daughters hospital and ended up getting a pretty obscene phone call from a lyme patient seeking a doctors number, even though I mentioned my daughter was in critical care. ( Not like I dont love you guys or doing what I do!)

Im back in the saddle again, hopefully.

Lymesux, squeneff: You guys rule. Thank you so much for checking on my baby when I was laying in bed half dead and completely useless to my own child.
Mel, CBB, Beach4so, cindy, Ima, Lymetoo, and all else:

Thank you so much. I NEVER want to see my child go through what she went through again. The one thing that completely brought me to my knees and took two nurses and the doctor to console me ( and make me leave the room) was when my daughter

started talking about angels. That was it. I will NEVER forget her saying that she seen them. EVER. It just wasnt her time.

Maybe it was you guys ?

I can't imagine how you are enduring all this.

Please know you have lots of prayers on the way and lots of positive thoughts.

I'll keep praying.

lifeline
 

Take care. We love you!

------------------
oops!
Lymetutu

 

Their is so much love and caring flowing your way it must be taking the train because it is such a HEAVY load. Your health and your daughters are foremost on our minds "RIGHT NOW". Stay on the meds, they are the absolute best you can do at the moment.

Lots of facts need to get sorted out to be clearer for YOU.

You mention your dad is in your area somewhere. Is he able and willing to help you a bit???

You mentioned once you had a new love, is that a source of support today???

You also mentioned a (former?) husband and / or his wife?. Can he help out some or at least support your immediate needs.

How soon to get to Dr. J?

When you are better and more able we need to talk about what you said about babs is cause of ongoing probs, bart is cause for immediate probs. The reason I say this is my cats (all 15 of them) ALL outside, have fleas too, but are too wild to catch and treat. Is there a way to kill fleas without petting tame cats??? Anybody???? These cats keep down my mouse and rat pops to a dull roar.

I get fleas or what I think are fleas in the house just by dragging them in the door on clothes and shoes etc. Just trying to make a cnnection and learn from all this. lyme is too difficult.

Jodie , I am so glad you both are home and doing as well as you both are. Just know we are all concerned for you right now and concentrate on getting better and back to square one. One day at a time, dear Jodie, we will make it okay. Dont bother answering my dumb questions if it stresses you at ALL!!!

[[[[[HUGS and WELLNESS]]]]]]]but I be --just don--
 

I was so shaken by what you and Destiny have gone through. To witness your child so very very sick is gut wrenching...and you not well either. The sheer strength to rebound like you both did is absolutely amazing. I am relieved to hear that Destiny (what a beautiful name) is o.k. Thank God. I'm happy to hear that you got some relief with treatment as well.

I will be thinking of you both and sending prayers.

warm regards
paisley

p.s. I just realized that I could renew my registration on line. Any chance your state has the ability to do the same? Take care of yourselves
 

have no words but happy Dessie is home and very sorry you are doing so badly. Hoping you both got some well needed rest today.

Will talk with you later.
love to you both,
me
 

quote:

---

Originally posted by just don:
Jodie,

You mention your dad is in your area somewhere. Is he able and willing to help you a bit???

I realized after I posted, that I meant to say HER dad. My dad is not in my life, never has been. He is a definate help.

You mentioned once you had a new love, is that a source of support today???

Yessum, I love my Lew.

You also mentioned a (former?) husband and / or his wife?. Can he help out some or at least support your immediate needs.
Most definately, he took the kids this weekend, and every weekend, so I usually sleep through them. Im considering hitting the bed real soon!

How soon to get to Dr. J?
Calling first thing on Monday. As soon as they can get me in, Im gone. I have $$ to get there from family.

Is there a way to kill fleas without petting tame cats??? Anybody???? These cats keep down my mouse and rat pops to a dull roar.

Just dont let em around you, or scratch you, or if you can, get rid of them and get mouse traps with that permithin stuff that the mice carry back to their nests and it kilsl ticks.

---

Thank you SO much Don. You're muh bud.

Paisley and others: thank you so much for your support.

Destiny was out FLYING A KITE TODAY!!!!

She is still very fatigued and started to spike a small small fever before she left, but her dad has a close eye on her.

Im off to bed

LOL

Thank you SO much for being there for me, I was a livid mess yesterday and the day before.

Thanks for listening to me ball
 

So glad Destiny is so much better, and that you were able to respond promptly getting her the crtical care she needed! My heart breaks for you for what you are both enduring together. Gives new meaning to Mother-Daughter relationship.

Take care of yourself. Post as you feel up to it. Hugs & PRAYERS galore are headed your way for you both.

Betty G., IOowa
 

WOW. Loads of prayers for you and Destiny. She will pull through this! She is strong like her mother! I am holding good thoughts for you and your family all the time. I cant believe how much she has had to go through at such a young age. She is going to be such a strong woman and a leader when she grows. She is probably stronger and tougher than most adults are. You take such good care of her, and you all deserve only the best.

My prayers are with you and Destiny, and if there is anything I can do just let me know!
WildCondor

------------------
Lyme Disease Help
http://www.wildcondor.com

[This message has been edited by WildCondor (edited 19 March 2005).]
 

I knew you were having a bad week, but this just tops it. My heart goes out to you and I am SOOO glad Destiny is better.

Many thoughts and prayers are with you.

If you need ANYTHING at all, let me know, ok?

Your friend in Jersey.

------------------
Julie G.
___________
lymeinhell
 

It's more than I can comprehend.
Just can't imagine going through all that with your precious daughter.
I'm so glad she has bounced back so quickly.

Sending lots of love & support.
Will continue to pray for you & Destiny.
 

You and your family are in my thoughts....
 

daniella

So happy things are doing better - flying a kite sounds like fun, tell Dessie I'd like to fly one too!

And no thanks are ever necessary, you know that.

Take care and let me know how everything is going.

I just got on to lymenet and saw this post. Oh my gosh you poor thing.

You and Destiny are in my prayers. Please let me know if there's anything I can do. We live a long ways from each other but know I'm thinking of you and your family.

Hopefully Dr. J can see Destiny quickly due to the recent circumstances. Can her currrent LLMD call Dr. J and possibly consult with him? I know of others who have done that and I think he'd be willing to help!

Take care!
 

Destiny is doing a bit better, a little bit more off from what she was however.

I think the hospital was entirely premature to let her come home. The antibiotic ( Omnicef) is giving her horrible diarrhea. The last thing she needs right now is dehydrated- again.

Im pumping her full of pedialyte and probiotics, and she is taking them without a fight- which actually means SHE IS that sick, or trust me, ( shes like her mom) she wouldnt take them

She has some odd spontaneous VERY LARGE bruises going on, but we are keeping an eye on her.

She'll be going to work with me more than likely tomorrow. She can hold my head up, and I can drag her to the potty

Hope all is doing well too. I am back on meds, and feeling SO much better in the pain department.

Jodie

So sorry for all you and Destiny have been through this past week. Sorry I didn't post earlier, but I have been back and forth to the doctors and ER with my 6 year old daughter with chest pains.

It is so heartbreaking to see so many young children become so sick from this disease!!!

I will keep you and Destiny in my prayers!

God Bless!
~Missy
 

For the cat issue -- I lived in a mouse-ridden house once, so I know how essential the kitties can be. Not to mention the sheer bliss of getting purred on. As a friend of mine once said, "Dogs (and cats) are a necessary inconvenience."

What about an entirely indoor cat (with a tick/flea collar)? What would your vet say to regular prophylactic abx for the kitty -- is such a thing possible?

And for sheer snugglyness, I have to recommend a Chinchilla -- totally useless, but soft and warm and sweet as can be.

Hugs and best wishes, Jodie. And pat Lew on his cute little buns (I'm conjecturing here, but don't disillusion me) and tell him we think he's a peach.
 

I am so sorry for all of your troubles. I will be praying for you. I thought I was having a bad day util I read this post. Now I know what a bad time really is. I am so so sorry that all of it is happeing at the same time to you. Hugs!
Mule

I cried when I read this. Sent a prayer right away. Wish there was more that I could do.

BTW, can't believe someone had the nerve to be rude to you! I'm one of the people you helped by giving out your phone number to locate a doc lickety split.

The raw courage you exhibited during your daughter's harrowing ordeal is the stuff true heroes are made of Jodie.

Hang in there my friend and thank you for helping me.

Joann
 

I hope she continues to improve. If I were closer, I'd be happy to come try to help u out. But 4 now, all I can do is hope and pray things get better for ya'll.

Have u tried Advantage on the cats for fleas? I worry about this too as occasionally my kitty wants in to lay on the chair.

She "picked" me w/ her claws the other day and the site has ended up w/ two unhealing lesions. I showed them to my PCP - and he said they just "look infected" - still, very scary to me!!

Hopefully the zith and Mepron I was already on would act to stop a potential Bartonella bug!!!

If I had the money, I'd love to have all of my pets tested for TBD. For now, I just try to be very proactive w/ flea control!!!

Take care and hugs to u all!
Sherry

------------------

 

I had a problem with Destiny this week literally not being able to move from the potty. I was smart enough to know, that more than likely, this child had c. Difficile.

Unfortunately, none of her doctors ( urologist, pediatrician, or attending and admitting doctor at children's ) were anything but dumb, so my ex husband had to resort to taking her BACK

to childrens to get some stool testing done on Sunday. Sure as chit ( pun intended) they called today-

she has c.difficile. She has been on Flagyl since yesterday, so that is helping a bit.
OUt of that, I believe that my NOW brand probiotics are helping the most.

HOWEVER, the c.difficile has caused her to immediately have to STOP her antibiotics for her kidneys and infectiosn- which isnt good. She CANT take them due to the C. difficile, so hopefully, once we get the c. difficile under control

SOMEONE will be smart enough to run the Flagyl WITH her necessary abx as well as I will continue to keep up on the probiotics- which are working more than anything.

If it isnt one thing, its another.

On the kitties- unfortunately, they are leaving my home this week and I have no plans on ever owning any more cats. I can't be certain they are a vector, but I know one thing:

I cant be certain they are not. Im not willing to take that risk. heart-breaking yes? Health saving? probably.

Thanks for all your replies again!

She's doing much better in all aspects, but she is running a bit of a fever today ( with flushed face) and when that happens...

she is usually getting sick( probably because her infection isnt and cant be treated right now)

Praying for both of you.