Introduction

[Alli40]

Hi Everyone!

I wanted to introduce myself. I am the mom of a 12 year old girl who has been suffering from an unknown illness.

In February we found that my daughter needed neurosurgery. She has a shunt for hydrocephalus and it was blocked. They think she was suffering silently for over a year. She slowly recovered and had just started back to school when she had another surgery (only 3 weeks in between). She recovered quickly innitialy from this surgery; she seemed to bounce back. She spent two weeks at home, two weeks half days at school and then we started back to full days. Just as she seemed to be getting better, she started again to complain of headaches, nausea, dizziness, sound and light sensitivity. These are similar to shunt failure symptoms. We went to the hospital over and over again. The did many tests and found that her shunt was working correctly, however, they admitted her and watched her vitals. This showed that her HR goes up every time she gets up. It was significant enough to refer her to cardiology. The have triaged her as semi urgent and advised me of a month to 3 months wait for an appointment. She has had blood tests, xrays, MRI, and ultrasound to try to figure out why she is so unwell.

She has been unable to attend school for more than half a day per week (since all of this started). It takes her days to recover after she has been active (going to school, shopping, etc.). She is suffering from:

Headache

Stomach ache

Dizzy

Lightheaded

Nauseated

Fatigue and sleeping a lot

Trouble going to sleep at night

Exercise intolerance ? winded going up the stairs

Weakness ? difficulty opening doors, general weakness and notable weakness in arms and legs

Difficulty focusing ? in a fog, can?t concentrate

visual problems - she sees shapes and colours like if she pushed in on her eyes

I am having trouble getting anyone to take charge of this medical situation and investigate. I need a Dr. House. All the specialists so far just rule out their specialty or diagnose based on only a small piece of the picture (for example, the neurologist says she is just suffering from migraines). My family doctor is waiting to receive tests from the hospital before he considers any other tests or next steps. His receptionist thinks my daughter just doesn't want to go to school so she won't give us priority when booking appointments. Every day is now just about documenting and waiting for the phone to ring. We are also hoping that each day won't be too bad a day.

I think she is suffering from POTS. I have contacted one of the doctors on the list. He wants to hear from my doctor.

I just wish I could make my little girl feel better. Tylenol and Advil hardly even touch her pain. She takes them together in the hopes of some relief.

Thank you for reading. Thank you for being here.

[lloppyllama]

Hello,

I'm sorry your having so much trouble. Its hard I'm sure when your daughter is so young and cant work with the doctors much on her own to explain things, so I'm sure its hard to communicate with them. That is rather unfortunate that they think she does not want to attend school. Hopefully now that summer is here she will be able to rest and feel a bit better with not having school as somewhere she needs to be.

Her symptoms definitely sound like symptoms POTS patients would have. And since the other tests you have done come back negative, it does seem like a very good guess. I would suggest having a Tilt Table Test, or TTT. I know the doctors might not be super helpful in getting this scheduled, but perhaps if you speak to her doctor your seeing right now about the idea of POTS, he might be more up to doing the test. This is the tests that almost all of us here used to be diagnosed, so its a very good idea to get one, if you feel POTS is what she has.

If she has had a recent growthspirt, that also would make her more likely to get POTS after her surgery. Or even if she is just going through puberty. Perhaps you could educate your doctor about POTS more and tell him how much it sounds like what your daughter is going through. I truly hope your doctor will be more helpful, and get this test scheduled. If it would end up telling you that she doesn't have POTS, don't give up. You'll figure this out eventually!

Best of Luck!!!

Mary

[Lenna]

Hi Alli40,

Your daughter's symptoms are almost identical to my 16 year old son's. He has every single symptom you mentioned. At first we thought his problems were originating in his inner ear, then we thought he had Migraine Associated Vertigo. We were very fortunate that it only took 2 months to finally figure out what was really going on. He has been diagnosed as having POTS by 2 different doctors. One was a cardiologist and the other was a neurologist. Both performed tests called Tilt Table Tests which confirmed the diagnosis.

I've been in your shoes. There is nothing worse in the world than having a sick child. You need to find a doctor who is familiar with POTS and can perform the diagnostic tests. In the meantime, there are a few things you can do that might help your daugther a little bit. She needs to be drinking 2-3 liters of water each day. Mineral water or water with electrolytes would be even better. (If you have a Whole Foods near you, try the "365 Mineral Water" - either sparkling or still. A lot of people will tell you that she should be drinking Gatorade, because she also needs a lot of salt which Gatorade has, but I believe that the sugar in Gatorade will be detrimental to her, and it's better to get the salt in other ways. Feed her as much salty food as you can. The increased salt and water will increase her blood volume and help it circulate throughout her body.

Decrease the sugar in her diet as much as you can. Get her to eat as much green leafy vegetables as you can.

The other thing that is very important is that she get some exercise every day. The first couple of months my son was sick, he was never off the couch. That just made him worse. His body got totally deconditioned. When he walked, it looked like he was dragging a load of bricks behind him. And he had to run his hand along a wall to balance himself. But when he finally saw the right doctor who said he had to walk every day, he started building up his strength a bit. We walked outside every day, very slowly, starting with just a couple of blocks. Gradually he ws able to build up and go further and faster. The more your daughter works the muscles in her legs, the more effectively they'll be able to pump her blood. Of course, you don't want her to do too much; that will just make her feel worse. Just start very slowly and build up.

My son had a huge problem with insomnia. Regardless of how tired he was, he couldn't sleep. He couldn't fall asleep until about 1AM, and then he kept waking up all night. Of course, he was exhausted and barely ever made it to school. These days, he takes 6 mg. of Melatonin about a half hour before bed. (We starting with 3 mg. and worked up slowly to 6 mg.) He doesn't eat any chocolate (caffeine) after dinner, and doesn't eat anything at all after 8 PM. The theory behind this is that his digestive system is very sluggish from POTS, and if he eats in the evening, his system is digesting well into the night. This is one of the reasons he couldn't sleep. I also get him up at the same time every morning, and he isn't allowed to nap in the afternoon. He's been sleeping much better lately since we started all these steps.

My son is much much better than he was last fall. I don't mean to make it sound easy. It was a year from ****. He missed so much school that he couldn't get any credits in most of his courses. He was depressed, and I was depressed. He lost weight and is still nauseous a lot. He didn't see his friends for a long time. However, at this point he is not taking any medications. He is on natural supplements (Magnesium, CoQ10 and Omega 3 Fish Oil) and he has weekly sessions with a holistic physical therapist (it's called Integrative Manual Therapy). He still has all of his symptoms but the intensity has decreased. He is active again and I can't keep up with him when we walk the dog. He is working part-time at a day camp. He goes out with his friends. He still has a long way to go before he's back to normal, but I finally feel like he's on the road to recovery.

You have one advantage. You know that your daughter got POTS as a result of her surgery. We don't know why my son got POTS and he's still going through so many tests to figure out what triggered it. We've had him evaluated for Ehlers-Danlos Syndrome, he's getting his thyroid checked tomorrow...the testing never seems to end.

I hope I've helped a little. I do agree with you that your daughter has POTS, and you'll get a lot of support from this forum. Have hope. You can send me a private message if you want.

Lenna

[nunibenuni]

Hi,

I'm so sorry that you and your daughter has to go through this. It is horrible that the receptionist at your doctor does not believe you. I had a similar experience when administrators at my school did not believe my family. Hopefully, now that it is summer, you will get appointments because getting out of school would not be a reason to be sick. It is hard enough to feel sick. It's even worse when you know people do not believe you!

The fact that her heart rate goes up every time she gets up is a signal that POTS could be causing her problems. If it is POTS, drinking a lot of water with electrolytes will help (and it shouldn't hurt). I hope that you find a doctor soon who is willing to help you!

Good luck,

Hannah

[dawson20]

A 3 month wait for semi-urgent - are you in Canada? (I am and that sort of 'hurry up and wait' scenario seems all too familiar).

Im so sorry to hear about your daugthers struggles - I went through similar challenges as a teenager and I know first hand how hard it is to try and achieve 'normal' in the middle of all that junk.

Sounds like you are doing the right things... I would suggest talking to her doctor about hte fact that the receptionist isnt taking you seriously when you call (completely none of her business to make judgements like that) - let her know how you feel... if they arent willing to be more receptive you may want to consider a new doc... our relationship with our primary care doc is paramount to ongoing care.

Does she have a pediatrician? You may want to consider this - often pediatricians are able to get kids into clinic and specialists alot faster than regular family docs... especially if you find one affiliated with a major childrens hospital (if your lucky enough to live near one).

We tried to stay with our family doc for my son when he first got sick mainly because I didnt want to start over with a new doc, but once things got complicated we needed a pediatrician... the waits were simply too long through our family doc.

[Lenna]

One other thing I thought of that might help your daughter a little bit - if she's getting sick when she's eating, divide her meals into 3 portions, and have her eat each portion an hour apart. She should be eating small frequent meals so that she doesn't overwhelm her digestive system.

Where are you from? Do you have any major hospitals near you? You can try calling and asking if they have any specialists who deal with the autonomic nervous system. Let people on this forum know where you live, and you may get some advice about which doctors to contact.

[ajw4790]

Hi! Welcome! I hope your daughter finds some support and answers soon!

I just was reading through the thread and wanted to add that the Whole Foods "365 Electrolyte Water" and Smart Water have electrolytes (Magnesium, Potassium, and Calcium), but no sodium (salt). But, salt or drink packets with a salt content can easily be added to this water. I drink both of these waters along with mineral water, Vitamin Water, sports drinks etc. I find the electrolyte waters are good when I start getting a migrraine, and sometimes add a boost with an Electromix electrolye packet.

Also, Whole Foods has their own sports drink that has less of all the refined sugar etc. that tastes good.

And Gatorade now has their drink in packets which is nice to be able to put in your purse.

Also, Capri-Sun has their version of sports drinks and little packets too.

Good Luck!

[Alli40]

Thank you everyone for your warm welcome and suggestions.

I printed out the journal article that was noted in another thread on this board and I dropped it off at my family doctor's office. Hopefully he will read it and consider the path we should follow from here.

We are going to work on the salt and fluids and all of your ideas are very helpful. Last night was particularly difficult. She couldn't eat dinner, and then she couldn't sleep. She had a warm pad on her stomach, a cool cloth on her forehead, tylenol and advil on board and she couldn't sleep because she felt so unwell. She is a little better today and we got through the MRI with no difficulties.

Does any one have any ideas to help her sleep? She is tired but awake from pain?

She was a dancer until a year ago (studied ballet), now she gets winded walking up the stairs. How did you figure out how much exercise was good to get you going but didn't knock you back for days after?

Thanks again,

Christine

[nunibenuni]

I can give you some of the tips that I got about sleeping when I went to mayo.

~Don't do anything but sleep in bed. (This one is hard, but it trains your brain to associate bed with sleep.)

~If unable to sleep, get out of bed and do something tedious (I make bracelets).

~You are probably already doing this, but don't let her have any caffeine after 5 or 6.

~do something relaxing about an hour before bed.

When you finally see a doctor, ask about some sort of sleep med.

About exercise, start with just walking around the block. Stop if she feels faint or dizzy. I wouldn't start anything drastic until you talk to the doctor.

Hope she feels better soon,

Hannah

[MightyMouse]

The issues you report can be a result of continuing issues with hydrocephalus, and/or the shunt. There is a great deal of overlap with shunt issues and dysautonomia--I know a bit about this b/c my partner works for a surgical company that makes shunts, valves and neuroendoscopy items. I've proofread more than my share of her medical literature! Also, I've seen plenty powerpoint presentations and surgical videos.

One can still have hydrocephalus symptoms with normal CFS pressures--so it would be the MRI that would show the size of the ventricles to indicate whether that's the issue. Normal pressure hydrocephalus can cause many of the issues that your daughter is experiencing. While I'm not saying she doesn't have dysautonomia, it's more likely that her problems are a result of her hydrocephalus issues, until those issues are ruled out as the culprit.

Also, some shunts will change settings from things like using a cell phone, being near any locally intense magnetic field, while others are less likely to do so (i.e. my partner's company makes a shunt that wont change settings even in an MRI up to 3 tesla). Some people with shunts also may have terrible symptoms because of changes in body position, ie. from lying to standing, seated to standing, standing to lying down--there are valves that can alleviate those symptoms by only allowing small changes in cfs pressure at a time.

sorry if I got too technical.

Nina

[lloppyllama]

That is my issue with sleeping mainly. I am tired most of the time but I cant sleep because of pain. Now that I have figured out how to sleep with pain, I actually have more trouble sleeping some nights, if I am NOT in pain, its pretty goofy. Anyways, I take Nortiptyline for my pain at night, and it is also a sedative, so that helps. I aslo take Melatonin, which is a supplament that is naturally in your body, it is the hormone that tells your body when to sleep and when not to basically. You could ask your doctor about both types of medications.

This is a link my doctor gave me for helping with sleeping. Ok my computer isnt working right now, but I will try and post it later tonight when I can bring up the link. Sorry...

Good luck!

Mary

[lloppyllama]

Sorry, I forgot to reply about your exercise question. My doctor at Mayo in MN is always stressing how important exercise is. For me right now I walk for about a half hour a day, and run for about a minute or two within that. For her, I do think its important to push yourself, but just not too much. You aren't really going to be able to know what is exactly "too much" for her, until you experiment a bit with the exercising. I would start with a 5-10 minute walk, close to home in case she starts to feel a lot worse. She is most likely going to feel sick when exercising, but it is just something that has to be done to get well.

When she does exercise she might feel sick the next day. But it is important that she still gets up and perseveres through the pain and such, because she cant just "give in" and let her body rest all the time and lay down when she feels ill, or she is only going to get worse. However if she does feel sick the next day, I would recommend cutting back a minute or two on exercise, so that she wont feel ill the next day because of it, and gradually work up to 30 minutes or so a day.

Now all this I am telling you, is my advise only once you know she does have POTS, until then, it might not be the best idea to push herself as much, but she can still exercise, within reason.

Best of luck to you both,

Mary

[Alli40]

Hi again!

Thanks for the input about exercise and sleep. It is helpful to have an idea of what others have done. I don't want to push her and I just would like to find a way for her to get some sleep.

As far as the shunt is concerned, that was the first thing we investigated when she got sick. She has had CT, MRI and a Shunt-o-gram. She was monitored in hospital for three days. All the tests indicated that she is doing better than she has in the last couple of years. We are quite satisfied that the shunt is working as it should be. Her ventricles are not enlarged at all. We had another MRI today just to be sure but she has just had two shunt revisions so she knows what it feels like when her shunt is failing. And no need to worry about being too technical with hydro and shunts, that is a language I am well versed in! Oh, she does not have a programmable shunt so we do not worry about setting changes.

We don't have a diagnosis but everyone that we meet has an idea. What no one takes into consideration is the increased heart rate that was documented at the hospital (during our 3 day stay) and in the doctors office 2 weeks later. We are waiting for a cardiatric consult that was requested in May. Everyday I hope they will call. They told me it would be one to three months. They do want to see her though because of the heart rate issue. I would just like someone to help her, no matter what the problem is. POTS has been the only thing that I have come up with that encompasses all of her symptoms, but I don't know what she has.

Thank you so much for your help. It is nice to be listened to, to receive support and not have to prove anything. I feel like I am fighting for her every step of the way. The doubt I see in other peoples eyes is heart breaking. They see her on a good day and don't understand what we are dealing with. I know from her face that she is not okay.

Christine

[lloppyllama]

Sorry this is so long, I couldnt get the site to go on here so I just copied it.

Hope it helps!

Page 1

Some Facts To Help You Sleep

Introduction

Many people may have trouble sleeping from time to time. Frequent, persistent

problems with sleep may affect your mood, your daily activities and your

general health. However, you don?t have to live with sleepless nights.

Many factors can affect sleep:

? General health (hormonal changes, pain, allergies)

? Life habits (diet, smoking, alcohol and caffeine intake)

? Psychological problems (depression, anxiety)

? Trauma or abuse

? Personality style

? Stress

? Reaction to medications or withdrawal from medications

? Poor sleep habits

? Sleep disorders such as obstructive sleep apnea, restless leg syndrome,

narcolepsy, etc.

This material is meant to tell you about sleep and give you information that may

help you establish and maintain sleep habits that allow you to get a good night?s

sleep.

Stages of sleep

During the night, you typically have four to six sleep cycles (figure 1). There are

two types of normal sleep ? rapid eye movement (REM) and non-rapid eye

movement (NREM). Throughout the night, you continually move from one stage

or type of sleep to another in cycles that can last about 90 minutes each.

As you pass from being awake to being asleep, you are in stage 1 NREM sleep.

There are three other stages of NREM sleep. Stage 2 is the most frequent stage.

Stages 3 and 4, which are called delta sleep, are the most restful.

Page 1 of 7 MC2593-16 Some Facts To Help Sleep

Page 2

REM sleep is a period of increased brain activity. Although your brain is active,

your body does not move. During this phase, you dream and your body functions

speed up. Early REM periods are very short, usually five to 10 minutes long.

During the later part of the night, REM periods are longer, usually lasting about 20

minutes.

Sleep restores us mentally, emotionally and physically. Sleep may help strengthen

the immune system to fight off viruses and bacteria. Lack of sleep affects not only

your energy level, but also your mental and social functioning. Losing sleep over

long periods can cause irritability and difficulty concentrating. Insomnia (inability

to sleep) also may be related to depression.

Figure 1. Cycles of sleep

2

Awake

REM

REM

REM

REM

Awake

stage 1

2hr 3hr 4hr 5hr 6hr 7hr 8hr

Hours of sleep

Stage of sleep

stage 2

stage 3

stage 4

1hr

Page 2 of 7 MC2593-16 Some Facts To Help Sleep

Page 3

General sleep information

Sleep, body temperature, and alertness are all part of a daily rhythm or cycle that is

regulated by our brains. For all life on earth, this cycle usually lasts about 24 hours

and is called a circadian cycle. Because our bodies tend to operate on 24-hour

cycles, what we do during the day affects how well we sleep at night.

Most people seem to need seven to eight hours of sleep a night to feel rested. But

that varies from person to person. If you feel alert and function well during the

day and do not feel like sleeping when you sit down and relax, you probably get

enough sleep.

Good sleep habits (sleep hygiene techniques) can help you establish and maintain

healthy sleep/wake patterns.

Medications and other substances and your sleep cycle

Many prescription and over-the-counter medications can cause sleep problems.

Some common medications that can disturb your sleep pattern may include:

? Some medications for high blood pressure.

? Any medication containing stimulants, such as prescription diet pills.

? Caffeine-containing medications.

? Bronchodilators, such as those used to treat asthma and chronic obstructive

pulmonary disease (COPD).

Illegal drugs such as marijuana, cocaine, amphetamines and heroin are also known

to disturb your sleep cycle, preventing you from getting the rest your body needs.

Alcohol is another substance that can change your sleep cycle and result in poor-

quality sleep. If you use alcohol, do so in moderation and be aware of the dangers

of alcohol dependency.

If you suspect that a medication or other substance may be causing your sleep

problem, discuss your concerns with your health care provider. Never stop taking a

medication without first discussing it with your health care provider. Before taking

over-the-counter medication to help you sleep, talk with your health care provider.

3

Page 3 of 7 MC2593-16 Some Facts To Help Sleep

Page 4

You may have to try these techniques for three to four weeks before you start to

notice an improvement in your sleep. You may notice disruptions in your sleep

before you start to see an improvement. Use the techniques that work for you.

Create a pleasant, comfortable place in which to sleep

? Wear comfortable pajamas or nightgowns. They should not be too loose or too

tight.

? Make your bed and bedroom as comfortable as possible for sleeping. Have clean

linens and pillows and a firm, comfortable mattress.

? Make sure your room stays dark during your sleeping hours.

? Keep the temperature comfortable. A room that is too warm can cause problems

sleeping.

? Keep your bedroom as quiet as possible. A fan or other devices can produce

?white? noise to drown out noises that can disturb your sleep, such as snoring,

dogs barking, traffic noise, running of the furnace or air conditioner, etc. If you

use a fan, point it away from you.

? Get rid of your clock. Don?t just turn it around; hide it in the dresser furthest

away from your bed. If necessary, set it to wake you up. Grandfather clocks ?

or any clocks that chime on the hour ? also can disrupt your sleep.

? Do not allow pets to sleep in your bedroom.

? Do not use your bed for activities that do not help you fall asleep.

Develop good habits for a good night?s sleep

? Go to bed and get up at the same time every day of the week ? people who do

this tend to have the most efficient sleep.

? Establish daytime routines.

? Eat your meals (especially dinner) at the same time each day.

? Avoid heavy meals two to three hours before going to bed. A light snack with

milk, cheese or crackers at bedtime may be helpful.

? Try to exercise 20 to 30 minutes most days, at least four to six hours before

bedtime. Exercise increases your body temperature, which initially makes it

harder for you to fall asleep. However, four to six hours later, your metabolism

and body temperature will drop more than if you had not exercised. And that

will help you sleep.

? If you bathe in the evening, take a bath two to three hours before bedtime. As

with exercise, a hot bath increases your body temperature, which makes it harder

to fall asleep. It may take two to three hours to cool down after a hot bath.

Tips to help

you sleep

4

Page 4 of 7 MC2593-16 Some Facts To Help Sleep

Page 5

? Limit naps to 30 minutes at least six to eight hours before bedtime. Some people

function better if they don?t nap during the day and others feel refreshed after a

ten-minute power nap. You may need to experiment to see if napping works for

you. However, do not nap for more than 30 minutes to avoid reaching a deeper

stage of sleep, which will make you feel groggy when you wake up. If you get

sleepy during the day, increase your activity level.

? Spend less than eight hours in bed.

? Read or watch a video if you become ?antsy? and begin to worry about getting

to sleep.

? Don?t drink liquids for three hours before bedtime if you often wake up during

the night to go to the bathroom.

? Don?t drink beverages with caffeine (coffee, tea, and soda) after 12 p.m.

(or 10 hours before your bedtime). Don?t consume more than three caffeinated

drinks in one day.

? Find time each day to relax if you are under stress. A diary to record stressful

events (do this earlier in the day) may help you to recognize stress-related

symptoms.

? Avoid falling asleep in front of the TV, only to wake up and go to bed. For the

most restorative sleep, use the bedroom.

? Don?t worry about an occasional poor night?s sleep. There is most likely no

noticeable difference in your performance the next day.

Have a routine to prepare for a good night?s sleep

? Reserve one to two hours before bedtime for quiet, relaxing activities.

? Develop a bedtime ritual. Do things that give you a sense of security and

comfort. Check the lights and heat, lock the doors and perform personal

grooming activities.

? When you are in bed, focus on images that are pleasant and relaxing.

? Don?t go to bed until you feel sleepy.

? Don?t use your bedroom for worrying, studying, discussing problems,

arguing, or paying bills.

5

Page 5 of 7 MC2593-16 Some Facts To Help Sleep

Page 6

Tips for shift workers

Many people who work different shifts report difficulties with sleep. Working

different shifts may make it difficult to maintain a regular sleep cycle.

If your work schedule changes, the following tips may help you get a good

night?s sleep:

? Limit the caffeine you use.

? Make a transition time between work and sleep. Use this time to do quiet,

relaxing activities.

? Make the bedroom dark and soundproof and hide the clock.

? Tell people around you that you are sleeping during the day and do not wish

to be disturbed. Turn off the telephone.

? Establish a new routine right away. Work with your family, so family routines

can be adjusted, if necessary.

If you have a partner who snores

Discuss the snoring with your partner. You can try to create a white noise

background (a fan) or use ear plugs. However, if snoring keeps you awake,

you may want to sleep in another room. Go to bed together as usual, but if your

partner starts to snore, leave the bedroom and find some other place to sleep.

Good partnerships are made during the day when both partners feel well rested.

Staying in bed with a snoring partner will not improve your relationship.

If snoring is associated with breathing pauses, gasps or snorts, encourage your

partner to be evaluated for sleep apnea.

When to

contact your

health care

provider

6

You may want to contact your health care provider about your sleep problems if

you notice the following:

? It has been a month since you have been able to sleep soundly or fall asleep

when you want to.

? Your inability to sleep affects your functioning during the day.

? You snore or have irregular breathing.

? You think your sleep problems may be related to depression or anxiety.

? You need pills to get to sleep.

? You generally feel anxious and the anxiety is associated with poor sleep.

? You often feel sleepy when you need to be alert such as when you are driving.

If you have questions about this information or concerns about your sleep,

talk with your health care provider.

Page 6 of 7 MC2593-16 Some Facts To Help Sleep

Page 7

BARBARA WOODWARD LIPS PATIENT EDUCATION CENTER

Mrs. Lips, a resident of San Antonio, Texas, was a loyal patient of Mayo Clinic for more than 40 years. She was a self-made business leader who significantly expanded

her family?s activities in oil, gas and ranching, even as she assembled a museum-quality collection of antiques and fine art. She was best known by Mayo staff for her

patient advocacy and support.

Upon her death in 1995, Mrs. Lips paid the ultimate compliment by leaving her entire estate to Mayo Clinic. Mrs. Lips had a profound appreciation for the care she received

at Mayo Clinic. By naming the Barbara Woodward Lips Patient Education Center, Mayo honors her generosity, her love of learning, her belief in patient empowerment and her

dedication to high-quality care.

?2005

MC2593-16rev0405

Page 7 of 7 MC2593-16 Some Facts To Help Sleep

[MightyMouse]

Is this a vp shunt? May I ask which nonprogrammable type she has? Also, does it have an anti-siphon? Does she feel better/worse in any particular position? Any time of day? I know you said her ventricles aren't enlarged right now--any chance she has slit ventricles based on the MRI?

When you say your daughter is in pain, is it localized to a particular area?

I'm hoping maybe I can help to put you in touch with someone who can help you--my partner has contact with many physicians who specialize in hydrocephalus treatment, both here in North America and abroad.

Nina