Has anyone brought a child to the Mayo Clinic?

[Only me]

We are taking our 14 year old daughter to another neurologist next week. If the neurologist can't help us then we think that it is time to bring our daughter to a place like the Mayo Clinic. I was just wondering if anyone has had any experience there good or bad. I have heard good things and bad things about it, but at this point I don't know what else to do. We don't know anyone who has brought their child there. I only know a few adults who have gone there. I'm also wondering what other hospitals are similar.

 

We live in the Chicago area. We've tried Children's Memorial (that is where we are going for the neurologist) and I called Loyola but you need to go to a specific specialist there. The way I understand it (and please correct me if I'm wrong) is that a place like Mayo they will have you see several different doctors if necessary. At this point I don't even know what kind of specialist we need. I think it is related to the brain so that is why we're going to the neurologist again, although the first neurologist we saw back in August was of no help. We mostly saw him for the post-concussion headaches that my daughter was getting, but he was no help at all with regards to the insomnia.

 

Is John Hopkins the same kind of Hospital? That is pretty far for us so Mayo would probably be closer. I've heard of the Cleveland Clinic but I think that is more for cancer patients.

[Michelle in MO]

We are taking our 14 year old daughter to another neurologist next week. If the neurologist can't help us then we think that it is time to bring our daughter to a place like the Mayo Clinic. I was just wondering if anyone has had any experience there good or bad. I have heard good things and bad things about it, but at this point I don't know what else to do.

 

Out of curiosity, what have you heard about the Mayo Clinic that is not good? I have no personal experience with it, but I do know that it has an excellent reputation.

 

Wherever you end up, though, I truly do hope that you find the right neurologist for your daughter and that she gets the care that she needs.

 

:grouphug:

Edited January 10, 2010 by Michelle in MO
typo

[EKS]

I have not had experience with the Mayo clinic, but from reading your posts about your daughter's condition, I think a good teaching hospital is what you need (which Mayo is). Teaching hospitals are good at dealing with conditions that are outside the norm.

[MariannNOVA]

Having been in the same situation, I know that not one of us would leave any stone unturned in our attempts to find help for our chidlren. We did take DD, who was 23 at the time, to the Mayo Clinic. No, we did not get the results we were looking for, but in trying to get a definitive diagnosis (which is what we were seeking), I look at our visit there as a step in the process.

 

I have nothing negative to say about our experience there, nothing negative to say about their professional manner, their level of knowledge, in fact, nothing negative to say at all. In fact, although we did not find what we wanted there, they in no way were demeaning, discouraging, and we did not leave there feeling hopeless. We left there knowing that we still didn't have answers, and we had to continue doing research and continue looking for answers.

 

You should pursue this. Sending you prayers :grouphug: that you get the results you seek there -- if not, then continue looking. We found help literally in our backyard (ours, not dd's), but it was a rather circuitous route there.

And, yes, teaching hospitals are the place to get your answers......dd was in medical school when all this was going on and her professors referred us to MC. And, Johns Hopkins would have been our next stop after the place where we DID get an answer. Just keep swimming!

 

Please keep us updated.

 

Mariann

Edited January 10, 2010 by MariannNOVA

[Only me]

Out of curiosity, what have you heard about the Mayo Clinic that is not good? I have no personal experience with it, but I do know that it has an excelent reputation.

 

My aunt and a neighbor of ours went there. Both of them weren't able to get any help. It wasn't necessarily a bad experience but they were both disappointed that they weren't able to get any help. Of course each case is different.

 

At this point I just want someone to help my daughter. Last night we were at a family party. My daughter was on the couch most of the time. She tried but she just didn't have the energy to get up and play with her cousins. She is trying so hard to do things to stay active but is just so exhausted. I have never broken down in front of her but I left the room and started crying. I just feel so helpless and want to help her.

[asta]

I don't know if this will help *at all*...

 

About 7 years ago, my sister was diagnosed with a tumor in her chest. It was HUGE - the size of a grapefruit. They tried a biopsy and could tell nothing. They took it out (had to flay her open), cut it up and examined it - could tell nothing. And this was at a big teaching hospital in Texas.

 

Finally, they packed it up and sent it to the Mayo clinic. Mayo calls right back: Non-Hodgkins lymphoma.

 

She had chemo, was told she was sterile, had a miracle, perfect baby 2 years ago, and is cancer free.

 

If I EVER get the opportunity, I'm shlepping my butt to Mayo for my seizures. They know their stuff.

 

(I've been to a doc from the Cleveland Clinic for epilepsy. I wasn't impressed.)

 

 

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[LittleIzumi]

An older couple in my church went there and the wife was diagnosed properly, from what I remember. They were pleased to have a diagnosis and know what to do finally. But I don't know any details about what they did there.

[rafiki]

.

[praisefor3]

My mother died at Cleveland Clinic when a resident accidentally ruptured her pulmonary artery when trying to insert a swan-ganz catheter - what should have been a relatively simple procedure. The Cleveland Clinic is known the world over for many of its procedures. A dear friend of ours was just recently miraculously diagnosed and operated on at the Cleveland Clinic for a heart condition. He believes the doctors there were God-sent.

 

My point is...While it is true that some hospitals most definitely have better reputations and some should be out of business by the level of care they provide, don't base your decision on individual experiences. Because a doctor made a mistake which cost my mother her life, I would have a real tendency to steer you away from the Cleveland Clinic based on our one experience. However, I do know that if I was told that the Cleveland Clinic could offer what one of my children needed, I would go there again...as hard as it would be to walk through those doors for the first time.

 

Do your research on the Mayo Clinic but just because someone has had one bad experience does not mean that you shouldn't consider it. In my case, I would pray about it and if God said "Go"...I would go.

[Jilly]

Mayo is a great hospital, and I would highly recommend it. Many members of my family have been there, including my father. They all felt that it was a positive experience, and based on all I've heard about it, I wouldn't hesitate to bring my child there.

[Jan in SC]

I'm sorry that I don't have any experience with Mayo.

 

I have read many of your previous posts and I certainly could have missed something, but I don't remember hearing symptoms that calls for a neurologist. Is there a seizure question?

 

We have seen many, many doctors for one of our children and it is a trying process!

 

Has anyone ever suggested that your daughter visit a geneticist? My son had some unusual symptoms and that was one of our first stops. Mitochondiral issues can have a lot of tiredness/insomnia. He was very helpful and ruled many things out.

 

I would find a pediatric clinic that had a team philosophy. I wouldn't worry about the drive. You do need to be prepared that your insurance will not like this idea!

 

 

I hope you find a great place and your daughter feels better soon!

[Only me]

I have read many of your previous posts and I certainly could have missed something, but I don't remember hearing symptoms that calls for a neurologist. Is there a seizure question?

 

Well it's bit of a complex puzzle. She started with the insomnia about 1 1/2 years ago. She also had a concussion in August but she reinjured the area again in September and has hit her head 3 times in the past month. It's hard to distinguish what symptoms are due to the insomnia and if any are due to the concussion. The chiropractic neurologist we have been seeing also thinks that her gluten intolerance has caused neurological issues and that she basically has temporary damage/swelling in the brain due to it. The problem is that she has been gluten free for almost 3 months and we haven't seen any improvement.

 

Over the past few weeks she seems to lose her balance easy and I think that is why she has hit her head. I don't know whether this is due to being so tired of it there is more going on neurologically.

 

To add even more to the puzzle she also had a problem with dizziness about 1 1/2 years ago. The summer of 2008 she started having dizziness and would lose her balance for no apparent reason. At that time they did a complete workup: cardiac, ENT specialist, eye specialist and an MRI. They couldn't find any cause. The dizziness lasted for about three months and went away basically overnight.

 

I was pulling together all of the medical reports, etc. for our visit to the neurologist next week. I don't know why I didn't realize this sooner but she started with the bout of dizziness in summer of 2008, which is the same time that her insomnia started to be severe. She has always had a bit of trouble falling asleep but she went from falling asleep at 11:00 to not being able to fall asleep until 2 or 3 am and most recently it has gotten even worse and she often can't fall asleep until after 4 am.

 

I'm hoping that the neurologist can offer some insight into the insomnia or at least explain why she seems to be losing her balance more lately and hitting her head.

[OrganicAnn]

I've had relatives that went to the Mayo clinic and had a good experience. I was usually related to cancer and usually older relatives. They were very impressed with the people and facilities.

[Harriet Vane]

I had a friend whose husband was very pleased with his Mayo experience.

 

I read your posts about your dd with such sympathy. I pray God leads you to the solution. I'm sorry it's so hard.

 

:grouphug:

[MomtoCandJ]

have you thought about having her ears checked? my brother had dizziness and some other problems and come to find out he has a huge build up of earwax, cleared out the wax and with in a day he was doing a lot better

[tdeveson]

I have not had experience with the Mayo clinic, but from reading your posts about your daughter's condition, I think a good teaching hospital is what you need (which Mayo is). Teaching hospitals are good at dealing with conditions that are outside the norm.

 

This has been my personal experience as well. When things are outside the box, a good teaching/research hospital is the place. Mayo is both. I've never heard anything bad about the Mayo Clinic, but then again, I've never been there or known anyone who's been there. What have you heard?

 

Also, I agree with the previous poster about earwax buildup. If you haven't checked that, do it right away. Before ds was born, I worked with a girl who started suffering form dizziness and lightheartedness. She fell down the steps twice in our office! She went to the doctor who sent her to a specialist, who sent her to the hospital, which sent her to more specialists. In the end they found she had a giant ball of wax in one of her ears. They cleaned that out and she was cured. This went on for a couple of months and you could have knocked me over with a feather when I found out it was ear wax. I'd seen her tottering in the office, hanging on to the rails so she wouldn't fall.

 

I'd have that checked and ruled out.

Edited January 10, 2010 by tdeveson

[TravelingChris]

You are in Chicago right? Have you tried the teaching hospitals there- University of Chicago, Northwestern, etc. ? I have heard some people swearing by Mayo and others who didn't get the help they needed. But I think that can be anyplace.

 

I have been very impressed with Johns Hopkins as have some other people I know who have different problems and are seen at other clinics. SInce you believe this is a neurological problem, start doing the research online. You will find who does specialize in intactible insomnia with other problems. There could very well be someone in Chicago. Good luck to you.

[kalanamak]

I did a quick search on academic articles on teens and children with insomnia, and several basic and applied researchers were working at Brown University. Just a lead to look at, not advice...unfortunately, I don't know anyone, professionally, that works with children at all....

[m0mmaBuck]

My best friend's daughter has spina bifida and they have had nothing but the best experiences with Mayo since she was born 8 years ago. She has worked with a team of specialists, not just one doctor, because her issues have run the gammet from hydrocephalus to open wounds to neurological issues to pneumonia to... well, you get the picture.

[Only me]

We have definitely had her ears checked but thanks for the suggestion anyway. The insomnia is the biggest problem but I'm just wondering if it is related at all to the dizziness she had back in 2008 when the insomnia began. Lately she hasn't really had the dizziness like she did in 2008 but has just lost her balance a few times lately (in the past few weeks) and happened to hit her head in the same spot as she did when she got her concussion in August. I have no idea if they are all tied together.

[Jan in SC]

I applaud you for being so willing to get help for your child! I wish you the best and I hope she feels better soon! :grouphug:

[CalicoKat]

Both my husband and dad had open heart surgery there, 10 years apart with the same surgeon. DH was the first. He was 24.

 

Dh's aunt was treated successfully for her cancer there too.

 

It was a very good experience. All specialists that you need to see, even the ones you don't know about, are right there. Appointments can be made after your intitial workup for those specialists and all results are in one place for all the doctor's working on your case.

 

It's tedious waiting, waiting, waiting . . . but walking (via. underground tunnels) from place to place is a snap or using the shuttles makes your stay less of a hassel.

[Michelle in AL]

I asked my husband who is a pediatrician, which hospital he would recommend in your area (midwest). We used to live and work 3 hrs south of Chicago so he's somewhat familiar with the area's Children's hospitals. He said he would start with Milwaukee Childrens, even before Mayo. He thinks pretty highly of Milwaukee Childrens, but doesn't know if the neurologists there are any good. It might be worth a try.

[Denisemomof4]

My aunt, who lives in Oak Lawn, mentioned memorial, but she also said Christ Hospital in Oak Lawn opened a new wing called Hope solely for the treatment of kids.

 

I didn't realize your daughter had a concussion before her sleep issues. Concussions are far more serious than anyone realizes. Unfortunately, we are a concussion/head injury family so I have a ton of experience with this. I've also done a TON of research. I've mentioned this to you before, but I really wish you'd see someone who specializes in neurofeedback. They would take brain scans of your daughter called SPECT scans and it would show where her deficits are, and this would show the dr. how/where to do the neurofeedback. I've had chronic incomnia and only ONE session had me sleeping like a baby for 3 - 4 months. If you have not checked into it yet, I would highly suggest it. BUT, you really need to see someone who knows what they're doing The person I went to was written up by Boston Hospital and he was excellent.

 

Edited to add that Mayo is the place that finally diagnosed my mom's Lewy Body Dementia. Nobody else knew what was going on. It's one of the worst to have. :(

[Barbara]

I'm sorry I've haven't read your other posts about your daughter, but I thought I might throw something out there. My 13 yr. old daughter and I (and other members of my family) have mitral valve prolapse syndrome and dysautonomia. The symptoms vary widely among people who have this....even among my siblings and my daughter and I, there is much variation. It is very different from just having mitral valve prolaspe, which is basically benign and causes no symptoms, problems, etc.

 

The symptoms also mimic lots of other things, but it is amazing how much of a lifestyle disability it can cause. I have had dizziness, heart racing, extreme fatigue, slow heart rate, panic attacks, nausea (for weeks), anxiety, low blood pressure....and that's just me! Many people have fainting spells or dizziness, and sleep problems are very, very common. I think the doctor said something like 90% of his patients have some type of sleep problem. My daughter is among them (she is currently having a very difficult time falling asleep).

 

Feel free to email me if you like or check out the following website which should give you lots of information. I think it's beginning to be more well-known, but many doctors do not believe this is a "real" diagnosis. But I can tell you from my experience and my daughter and my sister, it is a real thing to us. The biggest problem is when the doctor's run bloodwork, etc. everything checks out normal. I'm sorry if all this is way off track, but I just wanted to tell you just in case...best wishes.

 

www.mvprolapse.com

[RanchGirl]

different hospitals have different specialties. Mayo is great for some things but I have not heard anything about them for pediatrics in general or neurology in particular. I would suggest you start with a phone consult with one of the top 3 listed here:

 

http://health.usnews.com/health/best-hospitals/childrens-hospitals/neurology-and-neurosurgery-hospital-rankings/

 

Also try finding a yahoo group or online support group, sometimes other parents can lead you in the right direction.

 

We live fairly close to Mayo but go to Cincinatti Children's in Ohio because the #1 doctor in the world for my son's condition is there. We found him before he moved to Cincinatti but come to find out, they are the #1 children's hospital in that specialty! I am also involved in an online parents support group and get tons of information that way. When you get into rare conditions you have to find a super specialist.

 

Obviously it's much more difficult when you don't even have a diagnosis yet, but starting with experts in the field you suspect might be the your best bet.

[nd293]

All the best with resolving your daughter's problems. I am sure you have looked at all the obvious causes, but I was just wondering about thyroid problems? My aunt suffered and she was a ghost of her normal self - lifeless with exhaustion. Sorry - you must get sick of people bringing up "ideas", but you never know where a breakthrough will come from.

[Scotch Pine Academy]

Possible acoustic neuroma? My family member had one, it can cause balance issues.

 

:grouphug:

[Soph the vet]

I am in Minnesota and know plenty of people who have used Mayo. They are great and I would go there in a heartbeat for anything complicated. Be prepared to "wait" for an appointment, it may be months so get on a list now. Also, if you are looking for hotels, the Kahler Inn and Suites is right there and offers free parking and breakfast, which is very hard to find in Rochester. And if you happen to be there the weekend of April 15-17, you will be there for the state homeschool conference. So book hotel early because Rochester has lots of conferences, etc. that keep the hotels busy.

[MaMa2005]

Our son-in-law went to Mayo when he had exhausted all options for the treatment of Crohn's Disease. He was almost incapacipated by the disease. They got him started on a new drug and he is a different man! Mind you the shots he now administered himself twice a month are $1200 each - but they work!

 

He did (and does) have some issues with getting all the doctors coordinated about sending him his shots, but it has gotten better over the past few months.

 

I highly recommend Mayo.