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Total Respondents as of 10/5/00: 32
One family gave statistics for three children
The patient was part of an identified outbreak:
| Jack-in-the-Box/Pac NW Outbreak, '92-'93 | 9 |
| Odwalla/Northwest unpast. apple juice, '96 | 4 |
| Burger King, TN | 1 |
| Michigan, 1993 | 1 |
The patient was given antibiotics prior to HUS
| Yes | 8 |
| No | 21 |
| Not Responding | 3 |
The patient received transfusions:
The patient underwent plasma exchange:
The patient underwent dialysis:
If yes, for how many weeks?
| NUMBER OF WEEKS | |
| < 1 week | 3 |
| 2 to 3+ weeks | 14 |
| 4 to 6+ weeks | 5 |
| 6 to 8+ weeks | 0 |
| 8 to 10 weeks | 0 |
| >10 weeks | 2 |
| Not responding | 1 |
The patient underwent additional surgery for non kidney complications?
| Yes | 11 |
| No | 20 |
| Not Responding | 1 |
If the patient survived, the patient was left with obvious neurological
complications upon discharge?
| Yes | 11 |
| No | 19 |
| Not Responding | 2 |
If the patient survived, please check any of the following sequelae
(post hospital symptoms) that apply to this survivor:
Other gastrointestinal complaints (20 total)
( e.g. constipation, sluggish bowels, recurring stomach pain)
Renal (kidney) impairment/dysfunction (16 total)
Diminished ability to fight off infection or has prolonged infections
or immune compromised (15 total)
Unusual learning challenges (14 total)
Unusual emotional disturbances (7 total)
Motor skill deficits (7 total)
Diabetes/insulin related problems (4 total)
Unusual allergic responses (4 total)
Vision or hearing problems, deficits, or anomalies (4 total)
Gallstones (2 total)
Other Submitted Comments:
High blood pressure (after 11 years, no longer exhibits diminished ability
to fight infections).
High blood pressure; tachycardia; tires quickly; dehydration; trouble
absorbing nutrients
Hypertension
Irregular heartbeat and murmur
Memory and vocabulary
Migraine headaches
GFR
Heartburn
Less energy
Noises or smells; sensory deprivation; asthmatic;
Worsened menstrual problems (cramping,bloating)
Increased spasticity; allergies to foods
Post traumatic stress syndrome
Alopecia areata and vitiligo.
Symptoms of rheumatoid arthritis and/or Lupus.
Participants had the following questions in advance of the conference:
Kidneys
Would like better understanding of iothalmate testing & results,
i.e. trend analysis.
I am concerned about kidney damage.
Any insight/prognosis on kidneys which returned to normal range within
the first 2 years of illness but now are below normal range because of
reduced bloodflow affected by scarring of kidneys.
We are interested in the percentages of children who need kidney transplants
after HUS.
My main concern right now is the amount of protein in my daughter's
urine and the use of the drug LisinipriL that her nephrologist has put
her on to slow down amount of protein.
Latest medical outlooks on the long term kidney effects and treatment
ACE inhibitor implications/current research
Longterm kidney issues after kidney failure of HUS
Will she have healthy kidneys for the remainder of her life?
Long term kidney problems (2)
Any insight/prognosis on kidneys which returned to normal range within
the first 2 years of illness but now are below normal range because of
reduced bloodflow affected by scarring of kidneys.
After complete kidney failure (3-4 days), what is the likelihood I
will have further kidney problems?
Autoimmune Disorders or Immune System Problems
Do other survivors have autoimmune disorders?
I'd like to know why my daughter has a suppressed immune system &
when those symptoms will improve or better yet, disappear.
Minus my spleen, what can I do to prevent colds & viruses?
Diabetes
Why , when there are initially such great recovery of the organs, 7
years later would there be things like diabetes. 7 years doesn't seem like
a long time to pass before these chronic issues to "show up."
Gastrointestinal/Digestive Issues
What affect, if any, is there in having no colon for "normal"
ranges in bloodwork; nutrient absorption; hydration?
I'd like to know why my daughter has stomach pain, heartburn &
a suppressed immune system & when those symptoms will improve or better
yet, disappear.
Stomach problems relating to HUS (stomach pain)
Heart/Blood Pressure/Blood Issues
What are the long-term effects (and their severity) of numerous blood
& platelet transfusions?
Why , when there are initially such great recovery of the organs, 7
years later would there be things like arrhythmia manifesting?
Is it possible for hypertension to appear later on in life-- if so,
how would it be different from "standard" hypertension?
Does platelet destruction ever recur?
Lack of Energy or Stamina
Is lack of stamina expected to be a chronic problem from here on out
or can it be improved?
Memory/Learning Disorders
Any way to improve concentration/memory problems due to HUS?
Pharmaceuticals
What would have been the chances for recovery with today's technology
for someone, age 6, who's every organ was effected as penetrated by E.
coli if they had been given Synsorb from the onset? She fell into a coma
on the 5th day and she died on the 8th day.
What is the long term effects of huge doses of steroids such as Prednisone?
Long term effects of LisinipriL
Pregnancy
What about pregnancy? What are the challenges to carrying a child to
term/delivery/etc.?
Possible complications in child bearing years after surviving HUS
Will she be able to have children?
Will 3-4 chemotherapy treatments affect my ability to have children?
Is there any evidence that HUS/TTP increases menstrual problems?
General
Over the long-term, what are the conditions that can appear?
I am hoping that the conference will answer my questions about the
long term
health effects of HUS on my children.
Supposedly my son has been cleared; if there is ever going to come
up again, what kind of testing is needed. No one can ever tell me. What
more can I do?
I am concerned about any health effects that other survivors have experienced.
Also, any kind of follow up care that would be suggested.
How important is it for new doctors in my child's life to know the
details of her medical history?
What should be our response to doctors who have no interest in having
records forwarded to their office?
How much information do new doctors need to know: all that happened
or only current status?
Do medical staff change their approach to a patient if they are aware
that the patient has been involved in a lawsuit? Truthfully.
What long-term effects should be watched for to help doctors diagnose
problems early on?
Possible complications of teenagers
Complications to look for in HUS survivors
I am interested in finding out what has been discovered about HUS and
the E-Coli virus in the last few years. Since I contracted the virus about
26 years ago, there was not very much information around about this subject.
Studies, outcome, overall survival
Longterm problems to look for
New medical information as I continue to work locally with other families
I want to learn all I can about what we can expect in the future &
any warning signs to look for. Also, if diet factors into the picture.
Preventative tips
I would like to know residual things that may be caused
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