NEEDED: Any thoughts about kids and swollen glands and liver

[golfgal]

Yes, we have a good Children's hospital in about a 50 mile distance from us. It is highly ranked, not as good as Mayo, but much closer with great children's specialists. Mayo is a 4 1/2 hour drive from us (we checked on it today) and I don't think that a sick child going on that drive will be the best- especially if she does need further treatments or needs to go back frequently. I, myself, made an appt. at the children's hospital for her next week. That way, these new tests will get enough time to see what they are- and if we find out nothing, we keep the appt...if we don't then, we go.

With the Mayo clinic, they will tell you "plan on being here for 5 days" or whatever, you go the first day for your intake appointment and then they consult with a team of dr's to see what other tests they want to do. You meet again a couple hours later and they will have a week's worth of appointments laid out for you. If you need further treatment, often that can be handled in your home clinic under their supervision. This team approach is what is so nice about Mayo vs having an appointment on Friday for one dr, having to go back the next week to see another dr, then 2 weeks from Thursday another dr, etc.

There are a lot of low cost places to stay in and around Rochester, the mall is connected to the clinic via skyway, etc.

 

[mykidsand_i]

With the Mayo clinic, they will tell you "plan on being here for 5 days" or whatever, you go the first day for your intake appointment and then they consult with a team of dr's to see what other tests they want to do. You meet again a couple hours later and they will have a week's worth of appointments laid out for you.

I was wondering how that worked, because I looked at it today again. But, who do I make the actual first appointment with then? Is it just a pediatrician, or is it someone else? And they will for sure do all the testing and figure it out with in our first trip? That would be good. I just don't want to continue going back and forth to Mayo- especially if it's once every other week or even once a month. That gets to be a long drive.

Some friends from church were doing it for a year, their daughter had cancer and they took her there. They chose to do all their care at Mayo though, and they say that there were some really bad times of driving there- and then the daughter had two emergency trips to go to the hospital and they didn't dare take her to the children's hospital closer to us, because they didn't have any of her health information. They said if they did it all over again, they would have just gone to the children's hospital closer to us. Her recovery time probably would have gone quicker, because it's really stressful for an ill child to have to travel if they don't need to.

If it's an option to go there for a week or less, find out what's wrong and the next appointments are all closer to us, at our more local children's hospital, that may not be a bad idea at all. Thanks for that info!

 

[golfgal]

I was wondering how that worked, because I looked at it today again. But, who do I make the actual first appointment with then? Is it just a pediatrician, or is it someone else? And they will for sure do all the testing and figure it out with in our first trip? That would be good. I just don't want to continue going back and forth to Mayo- especially if it's once every other week or even once a month. That gets to be a long drive.

Some friends from church were doing it for a year, their daughter had cancer and they took her there. They chose to do all their care at Mayo though, and they say that there were some really bad times of driving there- and then the daughter had two emergency trips to go to the hospital and they didn't dare take her to the children's hospital closer to us, because they didn't have any of her health information. They said if they did it all over again, they would have just gone to the children's hospital closer to us. Her recovery time probably would have gone quicker, because it's really stressful for an ill child to have to travel if they don't need to.

If it's an option to go there for a week or less, find out what's wrong and the next appointments are all closer to us, at our more local children's hospital, that may not be a bad idea at all. Thanks for that info!

They will have you make the appointment with whatever your primary concern dr would be. They send out all kinds of paperwork to fill out (or it may be online now, it's been a while). With your DD's liver issues I would guess they would have you see a liver specialist right away and move on from there. I would call the clinic and explain what is going on and see when you can get in and they will figure out who to make the appointment with. My guess given the issues your DD has they would get you in right away. If not, have your doctor call and they can usually get you in sooner. I was just there last week with a friend that is having kidney issues-they got him in right away for a consult and had to go back this week for more testing but we live close by and his isn't "serious". It is an amazing place.

If you do go, bring a lot of books, portable DVD player/computer, whatever because you do a lot of sitting and waiting. They may even admit your DD to the hospital given her fever, etc.

Edit-they will have you bring copies of your medical records or have the clinic send what they have but they may re-run all the tests too.

 

[mykidsand_i]

Wow, thanks! It's good to have that info. from someone who knows a bit about what's going on. It means a lot right now, you have no idea! With your info. I was more interested to see how it all would work, so I called. The lady I spoke with was wonderful and full of great information. Telling me that when people travel from a distance, they figure out what's going on before they send you back home. I like that idea and it's just as you stated! She was also very re-assuring and told me that the mayo specialists are always working with more 'local Dr.s' so their patients aren't always having to go back and forth that long distance to mayo. She said most times they require 1-4 visits a year to do 'upkeep' with a patient. I know we could handle that!

I am going to talk to my husband tonight and after we talk to our Daughters Dr. tomorrow and get results back, I believe Mayo is the place we'll go! My husbands grandma went there for several years (she passed away 4 years ago, or we would ask her more about it), even though she lived 8 hours away, but she'd fly there. She had nothing but great things to say about it. I've also done a lot of research and believe that it is far superior over any other hospital in most of the USA.

Thanks!

 

[dis-happy]

When you go see the doctor tomorrow, ask for a copy of all the blood work labs that have been done so far (even the ones from last summer). It helps a bunch to have your own file of everything. That way when you go to visit a specialist and something hasn't been faxed over or whatever, you have all the info you need at your fingertips. Spoken from one who's been there....

 

[golfgal]

Wow, thanks! It's good to have that info. from someone who knows a bit about what's going on. It means a lot right now, you have no idea! With your info. I was more interested to see how it all would work, so I called. The lady I spoke with was wonderful and full of great information. Telling me that when people travel from a distance, they figure out what's going on before they send you back home. I like that idea and it's just as you stated! She was also very re-assuring and told me that the mayo specialists are always working with more 'local Dr.s' so their patients aren't always having to go back and forth that long distance to mayo. She said most times they require 1-4 visits a year to do 'upkeep' with a patient. I know we could handle that!

I am going to talk to my husband tonight and after we talk to our Daughters Dr. tomorrow and get results back, I believe Mayo is the place we'll go! My husbands grandma went there for several years (she passed away 4 years ago, or we would ask her more about it), even though she lived 8 hours away, but she'd fly there. She had nothing but great things to say about it. I've also done a lot of research and believe that it is far superior over any other hospital in most of the USA.

Thanks!

I am glad I could help. Bring a lot of "stuff" to do. I brought a rolling briefcase to carry my laptop, books, etc. because there is a lot of walking. The Mayo campus is pretty spread out. Parking passes are $25/day but my guess is that there are free shuttles from the local hotels and they won't charge for parking. There is a mall connected to the clinic via skyway, there is a medical museum in the clinic that is worth visiting. If you come in the next week or so the fall colors will be amazing. There is another mall south of the clinic a few miles. Stop by Miracle Mall off Highway 52 and Elton Hills (or so). It was the first "mall" in the US. It is just a strip mall, nothing much there but heck, it's history. There is an airport in Rochester so you MIGHT be able to fly up for a reasonable price.

Here is a google search of hotels in the area :

http://maps.google.com/maps?hl=&rlz...local_group&ct=image&resnum=1&ved=0CEUQtgMwAA

The hotels up by 41st and Circle Drive are all pretty new and easy to get around town from. I see there is a Microtel up there. We like staying at Microtel's when we don't need a pool. The rooms are small but they are clean and the are usually under $50/night. I just checked their website and they have a free shuttle to Mayo, free wi-fi and a free breakfast.

Depending on how your DD is doing and time, Rochester is an hour south of Minneapolis/St. Paul so you could run up there and sight see if that works too.

 

[tiggersmom6]

My niece was 11 when she had similar symptoms. The doctors first thoughts were cancer but after being in the hospital for 2 weeks and having all kinds of tests done she was diagnosed with sarcoidosis. She was on steroids for awhile and goes back to the hospital for check-ups but she is doing fine now.

I hope your daughter is feeling better soon.

 

[ugadog99]

Just checking in for an update. I'm sending lots of good thoughts!

 

[Tinkh]

I am sending prayers and positive thoughts to your daughter and your family as well. So sorry you and your family are going through this, but try not to worry too much. This could still be a mono case or something else.

 

[ugadog99]

Bumping back up and hoping for some news. The OP and her daughter remain in my thoughts.

 

[mykidsand_i]

We have an appointment for Mayo next week. Her fevers have gone down, but she is still getting them on occasion. The Dr. there said that this is not an immediate life threataning issue, or he would have seen her this week. She continues to have a swollen liver, VERY swollen throat and swollen lymph glands. They did an advanced blood test for the mono virus to see if she's ever had it and it came up negative, nothing has been positive so far and I pick up her medical information and chart in the middle of this week. I asked for two copies. The Dr.s believe that this is something that needs to be treated, or she will continue to have health issues.

 

[golfgal]

We have an appointment for Mayo next week. Her fevers have gone down, but she is still getting them on occasion. The Dr. there said that this is not an immediate life threataning issue, or he would have seen her this week. She continues to have a swollen liver, VERY swollen throat and swollen lymph glands. They did an advanced blood test for the mono virus to see if she's ever had it and it came up negative, nothing has been positive so far and I pick up her medical information and chart in the middle of this week. I asked for two copies. The Dr.s believe that this is something that needs to be treated, or she will continue to have health issues.

That is great that you have an appointment at Mayo. Let us MN posters know if you need any info, etc.. I hope you can get some answers, quickly. The weather, so far, looks really good and the fall leaves should be amazing next week there.

 

[PrincessKsMom]

Prayers that you are able to get to the bottom of this illness and that it's nothing serious.

 

[mykidsand_i]

We are just praying that it is some crazy minor thing that has just been 'overlooked' or something that needs a certain type of medicine and it's gone for good. I don't even care if we go all the way there to find out it's something that's minor and been overlooked! We just want answers! At this point, ALMOST anything is better than not knowing what it is. Because at least in knowing, we can be doing the right things to move toward recovery. Thank you all for your thoughts, prayers and tips! I am forever greatful!

 

[MELSMICE]

 

[The Mystery Machine]

 

[lemondog]

OP I am also praying it is nothing serious. Sounds like you will be in good hands at Mayo.

BTW, this sounds like it would be a great episode of Mystery Diagnosis!

 

[mykidsand_i]

Yeah, mystery diagnosis! My dd would be a great candidate for that show! Last night my mother in law called and reminded me of why I don't talk to her more often...She said "Oh, I was watching this medical show where a bug layed eggs inside of someone and bugs were crawling through this young ladies ear and it was causing her all sorts of health problems...did her Dr. check for bugs?" Just what I wanted to hear. My MIL has a great way of seeing things on TV and thinking that she's got certain illnesses or health problems because she makes herself believe that she's got similar or the same exact symptoms. It drives my husband and I crazy.
Then, my grandpa called (he's quite elderly and forgetful) and said "Does her Dr. know that she cracked her head open three years ago, maybe that's why she's getting all these headaches now"...In my mind I wanted to correct him, but didn't have the heart to. My DD has not had headaches while she's been sick, unless she's been dehydrated and that's not even the issue. It's my niece that's getting migranes, not my DD. AND my DD did 'split her forhead' open 3 years ago, but there was nothing that opened or cracked the skull, just the skin. And, it's not a 'head issue' it's a glands and throat and liver and fevers issue.

 

[LuvOrlando]

When I read your first post my immediate thought was get to an Infectious Disease Specialist at a BIG well known facility. Now that I read through I agree that going to the Mayo Clinic is an excellent choice, your daughter will be in the best of hands. One thing I never play games with is health issues, I'd rather pay $500 for an expert to tell me something I BELIEVE than go to someone I don't trust for a canned response, I've done it before and I'd do it again. I'll keep you guys in my thoughts. I hope there is a quick fix and your daughter will be back to herself quickly

 

[mommytobug]

I know you are getting lots of advice right now but if there is any way you could get her to St Jude, I would. I am a survivor and my daughter was treated there 2 years ago when they thought she had ewings sarcoma. We were there off and on for almost a year. They provide everything, housing to food to bandaids to flavored meds. They are an awesome hospital and do a lot of research also. PLEASE consider getting a referral. They will even pay your travel to get there, plane or car.