Need help with understanding Echo

[MilanMiller]

Can anyone please tell me what this means?

Left Atrium:
There is evidence of an intra-atrial septal aneurysm

This is from my 13 year old daughter's echocardigram.  It was recently discovered from an MRI that she has lesions in her cerebellum.  She then was sent for the Echo.  The doctor says everything is normal, but I'm uncomfortable with this wording of aneurysm.  The doctor offered no help.

[ddavey]

there may not be anything that caused the lesions, and they may be benign and not ever cause her any problems at all.   you can get copies of the mri and cat scans yourself, the actual films, not a cd   is this the doctor at st. judes that the pediatrician sent you to?   i can completely understand how you feel, and how frustrating this all is.   try as hard as you can to go back your life, she very well could be perfectly fine.   my daughter's lesions were probably there from birth, and did not cause her developmental disability, they have never caused her any problems at all.  she has had headaches throughout her life, but they are migraines brought on by nitrates.   i have been through the jungle that you are going through, and it is hell.  they will test, they will mention conditions you have never heard of and they will scare you death, and then they could say when all is done that she is fine.   i spent a year worrying if my daughter had a brain tumor, six months of that waiting for testing (mri, brain angiography and finally a biopsy of the lesion on the cerebellum) to find out in the end that they were totally benign lesions, probably present since birth, and have never caused her any problems.   please, and i know it is extremely difficult, try not to focus on the worst possible scenario... take it day by day, as long as she is ok and feeling fine it is all good.   i wish i could say something to help, all i can give you is some past experience that can show that she may be perfectly healthy...   i do wish you both all the best......     dawn

[MilanMiller]

I am growing incrediably frustrated.  We went to the second neurologist for a second opinion - nothing.  First of all - the hospital that made the cd for the doctor to review lacked all the images.  It had only 3, when 450 were made.  This neurologist would not even begin to make a diagnosis without seeing the MRI and CT images himself.  But, since my daughter has no outwardly symptoms, he thinks everything is fine and that we are chasing our tail, wasting our time and money, going thru this process.  I just need some answers, some clarificiation, someone freaking person to tell me what caused the lesions, is there anything else going on that we should be concerned with, and whether or not we can go back to living our perfectly normal, boring lives.  This entire process and ordeal has been increadiably unsetteling and stressful.  The neurologist thinks her pediatrician may be overreacting and that all this is so completely unnessary.  We are just going where she sends us.  Why is it so freaking difficult to get answers?!?

[ddavey]

first, i think it is wonderful that your doctor is sending her to st. judes.  they are a premier hospital for children, and it is the best possible place for your daughter.  i know the thought of st. judes can bring a feeling of dread, we have all seen the children treated there on tv.  but they don't only treat cancer there.  it is difficult not to worry about the worst case scenarios, but look at it in the context that while there is a possibility, your daughter may have something that can and will treated there and definately may not be cancer.   in the meantime, ask your pediatrician what to do about her appetitie,  things that she can do to bring her weight up (pediasure, etc)   call your doctor, try to set up an appointment to sit down and speak with her.   write down your concerns, most dr's. dont mind that, especially pediatricians, because they know that working with parents to help with their worries also help the child.  let her know that you don't to go to st. judes and be blindsided with a diagnosis, that you would like to know beforehand what they are looking for or trying to rule out.  alot of times, they have to look at serious diseases and test to rule them out first, which can be agonizing for the parents (my daughter had a brain biopsy to rule out cancer which ended up being a benign lesion but it had to be done as there was no other way to know for sure)      my thoughts are with you and i truly hope all goes well, and take of yourself                dawn

[MilanMiller]

Thanks so much for all the informations.  Believe me, I'm trying to figure this out ASAP and I feel like I'm bugging her pediatrician calling her every other day.  The ironic part of this all is that my daughter looks and feels pretty heathly.  She does tire easily and is starting to develop constant fatiques.  She is also quite thin and doesn't have much of an appitite.  But other than than, she's fine and is hardly even sick.  This process started from some simple headaches that we discussed with her pediatrician during a routine physical exam.  I'm posting here tyring to learn and understand as much as possible.  All the informations has been great and very much appreciated.  My biggest concern (and fear) is that they are sending us to St. Jude.  They are suppose to be wonderful there, but it is a cancer hospital for children.  I'm hoping it's nothing like that.  Does anyone know if any blood disorders that could cause a positive ANA test and a high anticoagulation count be symptomatic to leukemia?  My grandfather died of leukemia when he was 57 in 1970.  Right now that is my biggest concern.

[FLBrat]

I just reread your posts and noticed you are taking her to St Judes.  They should be very receptive to you and your questions.  I doubt you will need to push them for answers, in fact, if possible, bring a family member or friend with you to help keep track of the answers.  In a high stress situation it is very easy to confuse or misplace information.

[FLBrat]

Milan, every question that comes in your mind should be written down in a notepad.  No matter how trivial.  When you see the doctor, make sure that he/she takes the time to help you with the answers.  If the doctor pushes that he does not have time, tell him to make it or to provide you with a nurse practitioner that can answer the questions.  Every time you or your insurance pays these doctors it means they are your employees.  Bear that in mind.  I am sure that you are working as hard as you are able to find answers and ways to help your baby.  Best wishes.

[Jack54]

She has high anti-coagulation, but is taking baby aspirin. I think this is a case of a paradox (contrary to expectation), since aspirin is an anti-platelet drug and increases anti-coagulation. Sometimes a more simple clotting factor test does not suffice, I guess. Especially with positive ANA. Yes I think this could all be related, but I am a farmer.

You said you didn't know what questions to ask...Ask what is suspected to be wrong with my daughter at this point in time? Explain everything you know and the things you suspect. Ask for reports and summary statements from all doctors that are involved. Ask what autoimmune disease your daughter has. Once the ANA is positive, more blood work or testing of her blood will be done to determine the autoimmune disease.

Get on the phone with these people!!!! Ask them to explain everything. My goodness, this is your daughter that may have already has a stroke!

[MilanMiller]

She is taking Pamolor - which was given to her by the first neurolgist for migraines, and 1 baby asperin a day as recomended by the pediatric cardiologist.  I'm waiting on pins and needles for her doc to call me back about her appointment at St. Jude.  I don't even know what questions to ask.  Do you think something is going on?

This started because she was having headaches, her doc ordered and MRI, and lesions showed up in the cerebellum.  Could this be related?  What do I do?

[Jack54]

ANA is anti-nuclear antibodies and is positive with autoimmune disease of which there are many as you know i.e. Lupus, Rheumatoid ahthritis, HIV, etc. The bodie's own immune system attacks organs within the body. A positive ANA shows an autoimmune disease condition is present.

A high anti-coagulation count means her blood, or some part of her blood does not clot quickly enough. This can also have an opposite meaning in some conditions. Here is one such condition and a quote:

Paradoxically, a tendency to thrombosis, not bleeding, accompanies lupus anticoagulants and the antiphospholipid antibody syndrome.

Here are some or all of the factors that can be high or low with a resulting "high anti-coagulation count". I am very confused already. You need to ask your doctors for all test results and demand explanations now. Is she taking any medications now?
----------------------------------------------------------------------
Hemostasis » Coagulation
CoagulationADAMTS-13
Annexin V
Anti-Annexin V
Anti-Beta2 Glycoprotein I
Anti-Cardiolipin
Anti-Phosphatidylserine
Anti-Protein C
Anti-Protein S
Anti-Protein Z
Anti-Prothrombin
Antithrombin (AT)
APC Resistance (APCR)
Beta2 Glycoprotein I
C Reactive Protein (CRP)
C1-Esterase Inhibitor (C1-INH)
Factor IX (FIX)
Factor V (FV)
Factor VII (FVII)
Factor VIII (FVIII)
Factor X (FX)
Factor XI (FXI)
Factor XIIa (FXIIa)
Factor XIII (FXIII)
Fibrino Peptide A (FPA)
Fibrinogen
Fibronectin
Heparin
Hirudin
Lipoprotein a [Lp(a)]
Lupus Anticoagulant (LA)
Microparticles
Platelet Factor 4 (PF4)
Protein C
Protein S
Protein Z
Prothrombin (PT)

[MilanMiller]

Latest update.  We have met with the pediatric cardiologist about the intra atrial septal aneursym.  He was wonderful about explaining everything.  What we have to look for next is a PFO (leakage) coming from the septal wall that separates the two chambers of the heart.  This is where a clot can slip through the hole and go to the brain and cause a stroke.  Typically he said if the hole is not too big then it is ok to live with it like that becuase there is only a slight higher chance that it could happen UNLESS there is something going on that increases a persons chance for clotting.  We also have gotten back some of the blood test.  She has tested postive for ANA (autoimmune disease) and her anticoagulation count is high.  The hemotologist thought at first lupus, so called the pediatrician for more blood for more test.  Those came back fine, but now they are sending us to St. Jude.  Her doctor wouldn't tell me anything on the phone, but that the doctors at St. Jude will explain it all to me.  I'm waiting to hear back from her about when we go.    Can all this be related and does anyone have any idea as to what might be going on?

What is an ANA test and what does it mean if her anticoagulation count is high?

[MilanMiller]

Latest update.  We have met with the pediatric cardiologist about the intra atria

[ddavey]

i really don't want to alarm you, or make you more worried.   as i said before, my daughter has BENIGN lesions on her cerebellum. i would be very cautious to mention to anyone that lesions in any area of the brain are due to a stroke, especially in a 13 yr old.   i have been through that situation with my daughter at different ages of her life.  when they first saw the aneurysmal bulge on her heart, they thought it was an aneurysm, and i went through hell waiting for final results that showed it was not life threatening.   she was four years old.    when she was seven years old, we were getting her tested with a neurologist before putting her on ritalin (as i said she is developmentally impaired and has ADD)  it was after an abnormal EEG they ran a CAT and MRI and found two lesions on her cerebellum and one on the pineal gland, and it was only after a brain biopsy that they were found to be benign.  when she was 17 they found a tumor on her ovary, and it was found to be benign after a laparotomy.    please don't drive yourself crazy about what it could be, spend the time with the doctors, find one you trust.  i would never want to see anyone go through what we have, and put yourself through hell thinking the worst.     i will say that there is a new 3D echo machine out there that can give pictures of the heart that can't be seen with a TEE.  i watched while my daughter had one two weeks ago, and i have sat through alot of echos and ultrasounds and the pictures they were able to get of her heart mass were amazing.    take it easy, dawn

[Jack54]

That type of aspirin might be the best for her. When you get the time, just google "intra-atrial septal aneurysm". A TEE test is much more accurate than an echocardiogram. The ultrasound device is placed down into the esophagus where it can see the back of the heart and some if not all valves better. This is done before valve surgery to locate the position of the valve with pinpoint accuracy. I have never had one, but I have had and endoscopic analysis. For the endoscopic analysis, you are consciously sedated. I was knocked out.

If you need help in research, let me know the specifics of what you need to find out. I have time and it seems like you are very busy. Be well :)

[MilanMiller]

Wow.  Thanks guys. I've been up all night working on an extreme deadline at the office and I'm just reading all this information. It's quite overwhelming.  I tried to call a pediatric cardialogist, but they will not see her without a phycian's referall.  I have gotten the test results faxed to me so I do have them in hand and can send them to anyone that needs them - all but the first MRI.  

To anwer one question above - the first MRI was done becuase she has been complaingng about a lot of headaches lately.  Durinig her last pediatric checkup a couple of weeks ago - we talked to her pediatrician about them.  He doctor thought it was probably just migraines onset by puberty, but wanted to do an MRI to make sure there wasn't any other underlying condiontion going on before putting her on migraine medicine.  That first MRI showed the cerebellar lesions so the pediatrician sent us to the neurologist.  Which then got us in to do the Echo, EEG, and CT Scan.  What I can't understand is why did the neurologist say that all her results are perfectly normal and that's it.  It's beginning to sound like to me that this could be something very serious and it concerns me that the neurologist is only prescibing Pamelor to treat her migraines and not investigating this any further.  I've faxed over the ECHO report to her pediatrcian (who is out of the office today) so now I'm waiting to find out what to do next from her since the pediatric cardialogist will not see her without first discussing the case with her doctor.  This is quite frustrating.

Would children's asperin work - like St. Joseph baby asperin?

[Jack54]

Hi again :) I meant to mention that the lesions in your daughter's cerebellum could very well be due to a previous stroke. Get the radiologist's interpretation of the MRI report and start saving all of her medical information in a medical file. It could help make her treatment successful. Always demand raw numbers or reports from tests. This way if you switch doctors, you will have her medical history before him/her. If she has a TEE test, GET a copy of the film!

Jack

[Jack54]

I just did some reading on ASA. There seems to be differing opinions among professionals on the associated risk. Some clinical trials have shown 1) an old stroke had already occurred in those with ASA chose for the trial, and 2) there seemed to be a slight risk of future strokes in patients with ASA.

I agree with Davey in that you need to find a very good pediatric cardiologist and make sure that a TEE (Trans-Esophageal Echocardiogram) is done. I would see a cardiologist at Vanderbilt. I just noticed you were from Tn :) The last thing you want to do is see a small town cardiologist. The neuro gut is a nut.

I would also give her an aspirin each day. Check with a physician as to how much she can have and always take it with food! Aspirin is an anti-platelet and is used along with Plavix for stroke prevention. The combination of these 2 meds make gastrointestinal bleeding more likely in older adults. I am supposed to take both but I can hardly tolerate aspirin.

Make sure she is above the age for Reyes syndrome!

G-d Bless your daughter, and keep us informed please :)

Jack

[ddavey]

you definately need to set up an appointment with a pediatric cardiologist.  find the best hospital in your area and get the name of a pediatric cardiologist.   get a copy of the tape of the echo and bring it with you when you go.  you can also bring the written report of the echo.  like i said, then you will have peace of mind if it is truly nothing to worry about.  why did she have the MRI done, did you request it or did the neurologist request it?  she should be seen by a pediatric cardiologist who works in a good hospital.  you shouldn't have any problem getting the copy of the tape, or make an appointment and have the dr.'s office request it              good luck     dawn

[MilanMiller]

We live in TN.  She is perfectly healthy and normal.  What should we do next?  The neurologist who ordered the the ECHO (after I requested) says the echo is normal.  We were uncomfortable with the statement under the Left Atruim, but really don't know what it means.  The neurologist says "There's nothing else we can do for you." But what do we do next?  Her father passed away from Hyper Tensive Heart Disease at 33.

[ddavey]

i am sorry to hear of your daughter's trouble, especially at 13. if you are uncomfortable, get the tape and the report and have her seen by another pediatric cardiologist.   my 22 yr old daughter (she is developmentally impaired) was also born with benign lesions on her cerebellum and her pineal gland.  she also has a benign mass, what they call for lack of another name a pseudoaneurysm, at the mitral aortic junction of her heart. years ago they also called it an intra-atrial septal aneurysm.  with the echo's that are available now, it can be seen if there is anything to be worried about, or if it something that needs to be watched.  what state do you live in?   i hope everything goes well for you both            dawn