My child has FMD and I have wondered if other parents wanted to start a support group for themselves to share experiences. I wonder if Careplace is the place to set one up. Any thoughts?
Susan,
I hope you don't mind my asking a related question to your post. .. How old was your child when diagnosed with FMD? Where is it? When he/she was a baby, did it seem as though he was in pain with his digestive system? I am wondering because my one-month old grandson is in excruciating pain a little while after he eats. I've heard that somehow narrowed intestinal arteries can cause pain do to the decrease in blood flow.
Nancy in D.C.
Nancy: My daughter was five when she was diagnosed with FMD of the renal arteries. She showed no signs or symptoms of the disease. Her diagnosis was a fluck. Her peditrician started taking blood pressure on his patients at age 3. When Alayna's bp was taken at age three it was a bit high but we shrugged it off as nerves. Same thing happened at age four. By age five though, her bp was really high and we were sent to see a Nephrologist. This is how we found the FMD.
At that point, in hindsite, my husband and I questioned things about Alayna as a baby. For example, as an infant she woke up screaming almost every night at the same time but it wasn't hunger or a diaper, it seemed more like nightmares. When she was being diagnosed with FMD (age 5) they had her wear a bp cuff for a week and wouldn't you know it, her bp would spike every night about the same time that she'd wake up screaming as a baby. We now think she was having bp spikes and it caused some sort of headache or pain as a baby.
Even less is known about children with FMD then about adults with it. What is most important for your grandchild is that the peditrician knows about your FMD and includes blood pressure checks for the baby at each physical and bruit checks if the baby can handle it.
I'm not a medical professional at all. I can only tell you of my own experiences with FMD through my daughter. I will say that infants have all sorts of digestive problems, usually allergy related. Tell the peditrician, I'm sure he/she can help to find a way to help the baby.
Susan,
Thanks for your information. It is very interesting and you are lucky to
have such a good pediatrian, and one who checks blood pressure! Amazing!
The pediatrian knows. He was in ICU at 3 weeks due to some RSV virus.
I don’t have as much faith in all doctors as you do because of my history
(and my daughter’s) of multiple misdiagnoses.
For example, I suffered from lyme disease symptoms for 10 years before I
finally figured out that I had it. I went to several doctors for two years
after that before finally getting into a doctor who had diagnosed thousands
of lyme disease patients. He correctly tested me and discovered I had
co-infection also of erhlichiosis and babesiosis. Turns out, there is only
one lab in the world who tests for multiple strains of lyme disease. That
is the lab the NY doctor uses and that’s when I got correctly tested and
diagnosed.
Same thing with my daughter who had a ministroke when she was 25 wherein she
fell over and simultaneously lost 1/3 of her sight in her right eye. (Which
they never would call a stroke because of her age, but they saw an
occlusion). She went to 13 doctors before one of them would listen to me to
explain to them they should test for lyme disease from IGENEX.
I have two internists, both whom I’ve known for years. Last year I suffered
from 5 episodes of tachycardia and high blood pressure where I lose control.
The last one the medics told the ER doctor my heart rate was >170 bpm when
they got to me. Since then, I’ve gone through months of testing (tile
table: negative) the heart rate monitor (sinus tachycardia), and the bottom
line is no one thought about an arterial dissection or fibromuscular
dysplagia, or EDS.
I learned about dissections in January from an alternative doctor who
mentioned another patient of hers who died after an operation. The authopsy
revealed carotid arterial dissections. That’s when I looked up carotid
artery dissections and bingo! My swallowing and vertigo symptoms were there
in addition to others.
I e-mailed my internist, who lives out of state, that I thougth I had CAD
and his response was, I have had a patient with a carotid artery dissection
before and I do not think you have a disseciton. There are rare.
I then went to another local internist, gave a printout from Medline of the
definition and symptoms with all of my symptoms checked off for dissection.
I just got a copy of her physician notes and she never even mentioned it, or
followed up on it.
I then joined the stroke survivor group on Yahoo and something came up about
TIAs and locked-in syndrome. I had a surgery in 2003 wherein I experienced
the locked-in syndrome. I told my internist in 2003 and she just looked at
me with a blank stare. No doctor ever mentioned I had had a ministroke. (I
now have a brain MRI taken after my last tachycardia episode which shows
mild chronic ischmic changes, which can be a sign of a stroke.) Then I
started reading about TIAs and that literature mentioned FMD symptoms which
I have. So I joined the Yahoo FMD group. Everyone who has e-mailed me from
the Yahoo FMD group think I have FMD. I had a brain MRA done and it just
said I had ischemic changes normal for my age that were due to
artherosclerosis. I just received the disk of a recent MRA from Hopkins and
see what I think is a dissection in an artery. My friends on the Yahoo FMD
group kept mentioning EDS. Someone posted a symptom of EDS that really
triggered my looking into it and now I think I have EDS. The EDS DC Metro
moderator thinks I have it also. I now have an appointment with her
rheumatologist in a couple of weeks. I spoke to him on the phone and he
thinks I have it.
I am going to have a MRA on my kidneys and neck done in a couple of weeks at
the Harbor Hospital in Baltimore, and have these films read supposedly by
the same radiologist who reads Dr. Naz’s research patients films.
Sorry about going on and on, but this was a chance for me to 'let it out’
and I took it! I’m just fed up with all of the misdiagnoses!
And more fed up with doctors who resent patients who self-diagnose when the
patient is right and the doctor is wrong!
I really think my FMD is either in my kidney or my groin. I get so
breathless when I bend over and have pain in my legs. Do you know anyone
with FMD that was diagnosed with FMD in the iliac? I think that’s the name
of the groin artery.
Keep up the good work.
Nancy
----- Original Message -----
From: “susan gould” fmd-cpt2664@lists.careplace.com
To: addimus@comcast.net
Sent: Thursday, April 19, 2007 11:03 PM
Subject: Re: [fmd] Children with FMD?
Nancy: My daughter was five when she was diagnosed with FMD of the renal arteries. She showed no signs or symptoms of the disease. Her diagnosis was a fluck. Her peditrician started taking blood pressure on his patients at age 3. When Alayna's bp was taken at age three it was a bit high but we shrugged it off as nerves. Same thing happened at age four. By age five though, her bp was really high and we were sent to see a Nephrologist. This is how we found the FMD.
At that point, in hindsite, my husband and I questioned things about Alayna as a baby. For example, as an infant she woke up screaming almost every night at the same time but it wasn't hunger or a diaper, it seemed more like nightmares. When she was being diagnosed with FMD (age 5) they had her wear a bp cuff for a week and wouldn't you know it, her bp would spike every night about the same time that she'd wake up screaming as a baby. We now think she was having bp spikes and it caused some sort of headache or pain as a baby.
Even less is known about children with FMD then about adults with it. What is most important for your grandchild is that the peditrician knows about your FMD and includes blood pressure checks for the baby at each physical and bruit checks if the baby can handle it.
I'm not a medical professional at all. I can only tell you of my own experiences with FMD through my daughter. I will say that infants have all sorts of digestive problems, usually allergy related. Tell the peditrician, I'm sure he/she can help to find a way to help the baby.
Robin,
What a story! At what age did you symptoms start?
Do you mind sharing with me where you live?
Do you also have EDS?
Nancy
----- Original Message -----
From: “sunryse1” fmd-cpt2664@lists.careplace.com
To: addimus@comcast.net
Sent: Friday, April 20, 2007 12:26 AM
Subject: Re: [fmd] Children with FMD?
Hi...im not Susan but I did want to reply because I had the same symptom's as your grandson. I am 42yrs old and I had so much pain, nausea and sometimes vomiting after eating ( usually within 20-30 min). All of my test's were negative until my MRA which was 3years after my symptoms started ( because they did not look for fmd). I had multiple hospitalizations for tpn feedings and pain control ( wt loss of 24lbs).
On my MRA they found multiple artery involvement, the worst one being my celiac artery. I had patch angioplasty of the celiac artery as well as celiac artery band release and since then I have gained back 20lbs. I must admit that this surgery has not been completely successful and I was warned of that, but my symptoms did drastically improve. I still have the pain and nausea but the pain is not nearly what it was nor is the nausea. I have not had one vomiting episode since
surgery. Also I have not had another hospitalization since the surgery as my symptoms have been manageable.
The surgery itself is a very painful one with along recovery as they ct from the chest to below the belly button. I was in critical care for two days and a total of ten hospital days for this surgery. I had extreme muscle cramping in the center of my upper stomach that was not relieved by pain meds.
I hope this info will help some with your grandson. Oh I forgot to add ....my doctor told me the pain is from Ischemia ( do to decreased blood flow). I was and still have ischemia to my hepatic artery, but the intestinal ischemia has improved.
Robin
From: Nancy in DC
Reply-To: fmd-cpt2664@lists.careplace.com
To: sunryse1@hotmail.com
Subject: Re: [fmd] Children with FMD?
Date: Thu, 19 Apr 2007 15:28:37 -0400
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