doctors are a complete waste of time here

[Denisemomof4]

I really don't mean to offend anyone because I know we have a few doctors here. I've been very thankful for your advice in the past! But how sad is it that I've had to come here for advice when no doctors were of help to us?

 

Today my dd's had their annual check-up. We stretched it out to about 1.5 years and the dr. almost made me feel like I was being neglectful. I reminded her that I was taking care of my mother last year and she kind of lightened up a bit after that. :001_huh:

 

So we go through all the regular feel the belly, tap the knee, check the eyes, ears, spine, etc. Then it's on to parent concern. Well, with 10 yodd it's always the same, and I always leave the office feeling like we've yet again wasted our time.

 

Dd had a history of "something" that we never got diagnosed. She saw 3 pediatric neurologists, 1 ped. cardiologist, 3 pediatricians. All told me she was fine. She used to have more disturbing symptoms but now her only symptom is that she'll get blue in her face. I explained to the dr. AGAIN how I am concerned because now my friends are noticing when my dd is bluing in the face. It's concerned me for 6 years now. She no longer loses her eyesight or falls over, now she's feeling fine but all of a sudden I'll notice she's chalky looking, VERY pale, and her lips used to turn dark blue and that bluish tint would spread up around her nose, under her eyes, and she'd have blue spots on her face. It literally looked like bruises. We'd give it time and it would go away, usually within 10 minutes. Today I mentioned that others are getting concerned with the bluish tint to my dd, and know what the doctor said? "This is out of the realm of what we cover here. Every year you bring up this same concern." :001_huh::ohmy::banghead: I responded with, "Well I don't have answers yet, so I will keep bringing this up. You'll probably hear this again next year. I wish SOMEONE would ***HEAR*** me because it's NOT NORMAL for my kid's face to turn blue!!!" She said to bring it up with the neurologist that's tracking her for her migraines. The neurologist said it's her migraines that cause her face to turn blue, and I asked him to show me in writing where it states that migraines turn a face blue. He's from Boston Children's Hospital. Never did get any written information. And she's gotten 2 migraines in the 2.5 years she's been home with me and out of ps. Migraines?

 

I do wonder if it's somehow related to her pineal cyst in her brain, but don't truly see how it can be.

 

I also told the dr that some days she does perfectly fine with her school work, other days she gets EVERYTHING wrong. She said that's because she probably has ADD. Really? With ADD you can do the same math all year long, and then awake one day and not know how to do it?

 

What would you do if your daughter had these symptoms and you couldn't get help? WHen she was younger she'd lose her eyesight, fall over, often times hit her head, get VERY hot, get SOOOOOOO pale and chalky looking, blue lips and face, dizzy and she'd be TERRIFIED. She always remembered EVERYTHING, which makes me think it wasn't seizures we were dealing with. We recorded one of these "episodes" on the camcorder and the drs saw nothing abnormal. :001_huh:

 

So I just go on accepting that my daughter's face turns blue. And I feel like I'm failing her but I just don't know what else to do.

 

Advice?

 

sorry so long!

[Wyndie]

I would find a naturopath. If traditional docs can't help, alternatives may have new ideas or information to consider.

[Remudamom]

You do not accept this. Keep going, start b!tching, get your dd diagnosed. Our local docs are pretty worthless, we had to go 800 miles to get dh diagnosed, then even further to get treatment.

 

Kids do not turn blue. Show 'em your teeth, mom.

[Denisemomof4]

You do not accept this. Keep going, start b!tching, get your dd diagnosed. Our local docs are pretty worthless, we had to go 800 miles to get dh diagnosed, then even further to get treatment.

 

Kids do not turn blue. Show 'em your teeth, mom.

 

Dh and I have considered this. But where to go? BOston Childrens and Dartmouth are superb hospitals that people come to from all over the world. Neither were of help to us.

 

We're consulting a nutritionist for her to hopefully shrink the cyst. I don't know where else to turn right now.

[littlebug42]

You do not accept this. Keep going, start b!tching, get your dd diagnosed. Our local docs are pretty worthless, we had to go 800 miles to get dh diagnosed, then even further to get treatment.

 

Kids do not turn blue. Show 'em your teeth, mom.

 

:iagree: For my daughter's clubfoot, we now have to take our daughter 6 hours each way to get good care for her and this is her third orthopedist. I don't even discuss it with her pediatrician and most people think we are nuts, but I had to get my baby good care. I would do some research on the internet and find out where you might be able to take your daughter. The best sources I have found are yahoo groups, message boards etc for parents with any similar issues. If there are good specialists out there, they will know where to find them.

[happi duck]

"This is out of the realm of what we cover here. Every year you bring up this same concern."

 

grrrrrr....thanks for being so helpful Doc:glare:

[Denisemomof4]

oh, and about the b*tching - BTDT. Then I get told I have anxiety and need to calm down.

 

 

 

HUH????

[Alenee]

You do not accept this. Keep going, start b!tching, get your dd diagnosed. Our local docs are pretty worthless, we had to go 800 miles to get dh diagnosed, then even further to get treatment.

 

Kids do not turn blue. Show 'em your teeth, mom.

:iagree::iagree::iagree: This is when you put other things on the back burner and go after the answers. We have to be our kids' advocates because frankly, no one else will.

eta: NOT saying you haven't tried! ((((hugs)))) Just keep at it! Don't lose hope!

[Jan in SC]

My son turns very pale when he is having a migraine. It can even happen before the headache appears. He hasn't turned blue, though!! I would ask for a cardiology consult. One thing we did (yes, it will be a pain) that really helped our son's neurologist, was to keep a video camera nearby and tape a couple of "episodes." This helped him pinpoint a diagnosis.

 

I'm sorry you're having a hard time with this. It is so frustrating to know your child needs help and not be able to find it. :grouphug:

[MagistraMichelle]

WOW, that is certainly not right at all.

My first thought was seizures. Can you get a second opinion? Maybe do a little digging around online....

 

Our daughter has Hirschsprungs Disease, and we have had many moments with her doctors where I thought I might lose it. Although they we fantastic during her critical stage, oftentimes they would almost pooh pooh my concerns. They learned pretty quickly that I was not ignorant and would not have my concerns pushed aside. We have had to change doctors a couple times but she is getting the very best care.

 

I confess, I am rather impatient with that type of behavior from anyone, regardless of their profession. I have found doctors respond best to me when I am firm, specific, and direct. Often times I bring my husband to appointments as a show of 'force' when I have been pushed around a little. We agree to insist when we believe it is necessary.

 

The one thing I have stressed to all of her doctors is this, we are partners in her health care. We want a doctor who will trust our observations and respect that we have the final decision. In turn, we seek out their expertise and education. This has made a good relationship where we can trust them and the treatment they suggest.

 

I am sure we will have issues in the future but I refuse to be bullied by anyone.

 

It doesn't sound as though your childs doctor respects you and your right to advocate for your child. Don't be afraid to look elsewhere.

 

I am so sorry I can't offer you something in regards to your daughters specific symptoms. I am sure you will get to the bottom of it. Don't give up. You are not failing her, you are just not getting answers from the people who should have something to offer you.

 

Michelle

[Denisemomof4]

One more thing!!!

 

She got her tetanus booster today. After the shot - PALE, chalky looking face, blue spots. The nurse was VERY concerned and had dd lay down. After a minute or two she was fine.

 

I just did a quick search and saw BOston Childrens was rated #2, PA Childrens was #1 so I'm going to call to see if there's anyone there that may be able to help us.

 

I am going to take her to the cardiologist again, but I'm sure nothing will be found.

 

Thanks everyone - I'm going to bed now!

[Denisemomof4]

WOW, that is certainly not right at all.

My first thought was seizures. Can you get a second opinion? Maybe do a little digging around online....

 

 

 

two of the three pediatric neurologists we saw tested her for seizures but said that she wouldn't remember everything that goes on during these episodes, and they were definitely not typical seizures. And again, she's had two migraines in 2.5 years. The doctors also didn't listen to me when I told them that the lighting was causing her migraines.

 

I have gotten firm. I have researched for YEARS. I have brought dh. I have been to so many doctors now. We finally had to stop because dd was getting so worried about going to hospitals all the time because 2 years ago her friend's father was dying of cancer and she was afraid for herself.

 

I just want to know what's going on.

[stansclan89]

I googled "child's face turns blue" and this came up:

 

http://www.aboutkidshealth.ca/HealthAZ/Blue-Spells-Cyanosis-and-Children-with-Heart-Conditions.aspx?articleID=9921&categoryID=AZ1i

 

I don't know if this will help you, but I thought I would post it.

[SonshineLearner]

Wow, how incredible insensitive. I'd ask for a copy of my medical charts... like on the spot... and change Drs... if I had a choice!! That is something to report... (Of course, I don't know... I might be worried about "revenge reporting" by the Dr.... )

What a Jerk!!

 

Sorry....

[Tap]

I hate it when you have a dr that just doesn't get it or just doesn't instill confidence in me as a parent. I have had times when I questioned my old peds judgement (he was always right :rolleyes:) but there were times that I really wondered about his skills. He was very, very into letting illnesses run their course and not over medicating children (this is why I liked him in the first place) but there were a few times that I felt that he let my kids go a little to far before he started treatment. He was always right, they always got better, but I wasn't too sure sometimes. I had other drs look at them to make sure and they agreed that they were doing okay-considering. (Like when dd3 was 1.5 and hadn't taken more that a few ounces of water for 3 days at a time when she had a stomach bug. I was giving her water by a dropper, so I know exactly how much she got. The drs examined her and said she was hanging tough :mellow: I was really worried.) Sometimes I wish they would talk through the thought process a little more, so I could understand where they were coming from...I guess it would be too hard for them, but nice for me. :D

 

 

 

I am sorry you are going through this but I have to lol. You know how we have talked about some similarities in our girls....would you believe that I am waiting for dd3s insurance to approve an EKG for...wait for it......blue spells. LOLOLOLOL

 

In dd3, she gets a blue mouth, not her whole face. We haven't pinpointed it as her first pediatrician (one I trust) said it was fine and to not worry, it was just a 'kid thing' and he couldn't find any other warning signs to cause concern. With everything else going on I hadn't thought too much about it as it hasn't happened in a while. We switched peds this year and the new ped can hear a heart murmur. (She has had two other random drs hear the murmur at times but others can't-it wasn't a big concern either because they felt if she did have one, it wasn't problematic). I asked the dr about the combination heart murmur/blue spells and he said "lets start with an EKG and go from there."

 

I am sure they looked at heart, cardiovascular and lung functions? But what about her blood and the metabolism of food, favism is one thing her old ped brought up, that was ruled out.

 

 

I hope that you find a dr that can help you figure it out. Our bodies do such strange things sometimes.

[Peela]

I would do the research myself, frankly. I have little faith in doctors. Virtually every time I go for some reason, I feel I wasted my time.

[i.love.lucy]

:grouphug:

I'm thinking pulmonologist (sp?). Does she have asthma or any other breathing problems? The blue thing kind of sounds like an oxygen thing to me.

 

I'm sorry you are dealing with this! But, you go, Mama Bear! We're all fighting with you in spirit!!!

[Lawana]

Advice?

 

 

Sorry, no advice, but I totally relate to the frustration of the culture of "leave it to the 'expert'", but when the "expert" doesn't have the answer, what are you supposed to do?![interrobang]

Just think - when you do solve this, then you can get rich on the reality Mystery Diagnosis show:lol:.

[Liz CA]

oh, and about the b*tching - BTDT. Then I get told I have anxiety and need to calm down.

 

HUH????

 

Have you consulted a brain specialist since she has a cyst? Could this be a reason she cannot remember certain things sometimes? Is this cyst pressing on something, if not all the time, then perhaps some of the time?

If one specialist cannot find a solution, go to the next, literally.

I am all for naturopathic solutions, and you can try this option as well, however if your daughter has symptoms that scare you or her and needs immediate results (naturopathic remedies often work well but take a little longer) I would try the next brain specialist, and then the next one.

If you live in a metropolitan area (you mentioned near Boston), go up and down the coast or inland to find the right place.

[Liz CA]

Yes, Check with PA Children's Hospital. Also, have you checked into making an appointment at one of the Mayo Clinics? They have clinics in more than one location and a cadre of specialists.

[asta]

Go to this link and scroll down to the section on cyanotic defects.

 

The pineal cyst may be a completely incidental finding, unless it is increasing in size, in which case the fluid pressure could be contributing to her migraines.

 

HTH

 

 

asta

[Orthodox6]

I don't know where you live, which affects my suggestion. I would do what other parents have done when local services fail -- Make appointment(s) with physicians at a good children's hospital in another city. This requires travel and expense, but should result in the needed answers. Your dd's symptoms sound serious. :grouphug:

 

P.S. I just now read that you already have consulted Boston Children's. I should have read more of the posts. Still suggest that you try another large hospital.

[Soph the vet]

Get a thorough cardiology workup including an echo. Go to Mayo if you can. And get a new primary care dr. No reason you need to put up with that attitude.

[thescrappyhomeschooler]

This makes me so angry for you. The doctors don't have to live with it, so they don't take it seriously. For years, my mother would complain to her doctor about strange heartbeats. The doctor did some tests and couldn't find anything wrong, and would tell my mom it was stress from having 5 kids. She told my mom to go home and bake cookies and take a bath. Fast forward a few years, and mom was having worse heart symptoms and they tried to do a heart catheterization and couldn't do it because it turns out my mom's heart is not shaped like a normal heart. She only has one artery that wraps around her heart instead of splitting in two with each artery feeding its own side of the heart. She had cardiomyopathy from an overworked heart and an aneurism on her aorta. She had open heart surgery to replace a valve and fix the aneurism and is doing much better.

 

All this is just to say, don't give up. Keep trying until you get a doctor that will finally listen to your concerns and get to the bottom of it.

[MariannNOVA]

:grouphug:Good grief -- I have btdt and I know how frustrating it is.

 

ASTA always has great info -- please read whatever she has sent you.

 

I will PM you --

[Denisemomof4]

I hate it when you have a dr that just doesn't get it or just doesn't instill confidence in me as a parent. I have had times when I questioned my old peds judgement (he was always right :rolleyes:) but there were times that I really wondered about his skills. He was very, very into letting illnesses run their course and not over medicating children (this is why I liked him in the first place) but there were a few times that I felt that he let my kids go a little to far before he started treatment. He was always right, they always got better, but I wasn't too sure sometimes. I had other drs look at them to make sure and they agreed that they were doing okay-considering. (Like when dd3 was 1.5 and hadn't taken more that a few ounces of water for 3 days at a time when she had a stomach bug. I was giving her water by a dropper, so I know exactly how much she got. The drs examined her and said she was hanging tough :mellow: I was really worried.) Sometimes I wish they would talk through the thought process a little more, so I could understand where they were coming from...I guess it would be too hard for them, but nice for me. :D

 

 

 

I am sorry you are going through this but I have to lol. You know how we have talked about some similarities in our girls....would you believe that I am waiting for dd3s insurance to approve an EKG for...wait for it......blue spells. LOLOLOLOL

 

In dd3, she gets a blue mouth, not her whole face. We haven't pinpointed it as her first pediatrician (one I trust) said it was fine and to not worry, it was just a 'kid thing' and he couldn't find any other warning signs to cause concern. With everything else going on I hadn't thought too much about it as it hasn't happened in a while. We switched peds this year and the new ped can hear a heart murmur. (She has had two other random drs hear the murmur at times but others can't-it wasn't a big concern either because they felt if she did have one, it wasn't problematic). I asked the dr about the combination heart murmur/blue spells and he said "lets start with an EKG and go from there."

 

I am sure they looked at heart, cardiovascular and lung functions? But what about her blood and the metabolism of food, favism is one thing her old ped brought up, that was ruled out.

 

 

I hope that you find a dr that can help you figure it out. Our bodies do such strange things sometimes.

 

we really do need to talk, don't we? :D My youngest is going through a TERRIFIC upswing right now, but it's my older dd that has this issue.

 

I will try to call you this week but it's CRAZY here with the construction going on! But I want to talk to you, and please update me when you get any information. My dd has an extra "click" in her heart that some drs hear, others don't.

[Denisemomof4]

I do remember they checked the oxygen in her blood, and they stressed that if it was her heart, she would have issues when exercising, which she doesn't. She will hold her breath for long periods of time doing synchronized swim and has never had any issues with that.

 

I feel I've beaten a dead horse in regards to her cyst. The cyst is on the pineal gland, which controls memory. ALL doctors poo poo this, telling me it hasn't grown in 6 years. I belong to a yahoo group for people with brain cysts and EVERYONE has the same symptoms, but the large majority of doctors keep insisting that the cyst and the symptoms EVERYONE shares are NOT connected. I don't care what they say - they ARE connected, and I'm POSITIVE of this. My problem is that finding a doctor to even agree that the cysts cause problems is almost impossible, but finding a PEDIATRIC one is pretty much non existent until they grow too large. Thankfully dd's is unchanged.

 

I remember when she had a high fever once and she lost her eyesight. She held her head and very quietly asked me to bring her to the hospital. This is a kid who didn't cry when she broke her wrist. She's NOT a wimp. I called Boston Childrens and they told me it didn't sound like a medical emergency. :001_huh: I voiced my concern and disgust so they told me that "If it made me feel better I should bring her to the local ER." Well, when I sat her up in bed, within 30 seconds her pain was gone. Now I'm CERTAIN that the cyst blocked the cerebrospinal fluid (and I think her brain swelled from the high temp and this caused the cyst to press on the ventricle, blocking the fluid but will doctors hear me? NO!!! I *KNOW* this is what happened!!!) but nobody hears me. Again, SEVEN doctors. I've switched pediatricians three times now. I don't think the doctors are being rude with me, but I do think they don't know what else to do so they respond as they do. Yesterdays dr is an *ss that we won't be seeing again. I only wanted the girls to see a female for their annual check-up but I use another male dr. in the practice all other times and I love him.

 

I read much of the link you sent, Asta. Thank you! I need to read more but have company coming soon.

 

I did want to update you all to tell you that I'm taking dd to see a well regarded cardiologist in Boston Childrens. We didn't have success with the BC neurologist, but they are a fantastic hospital. It's a start. I'll be insisting on more tests again, and if we don't get answers, I think I'll check out PA Childrens. TN Childrens was #3.

 

We used Mayo for my mother in the past, and I'm not sure it would be a trip I would do at this point. I'm going to try the East Coast first.

 

Thanks everyone!!!

 

Oh, BTW, I have spent countless hours researching this for YEARS. And I do one day hope dd will be on Mystery Diagnosis because if she is, WE HAVE ANSWERS!!!

[lailasmum]

My son has reflex anoxic seizures. Although it doesn't sound exactly the same as your daughter there are similarities. However there are tons of similar conditions. My son has had blue and white seizures in the past, sometimes he will he be blue starting around the mouth and sometimes very pale and white. These days its mostly white Seizures/blackouts or near misses where he will not quite black out but be near and sort of obviously dizzy. It happens after pain, shock extreme anger touching strange textures. The vagus nerve is over sensitive.

 

The website of STARS (the syncope trust) may be of use to you. There are lots of these dizzy/fainting/blackout type conditions. I have noticed that the people on the forum have all kinds of conditions that I hadn't heard of before. may help you with a diagnosis.

 

Anyway the web addresses are here

Stars us site

The uk site (I think its easier to use)

 

It may be worth reading the section about POTs as this has headaches, temperature control problems, dizzyness, blackouts and blurred vision as symptoms. The sites have lots of case studies too.

Edited May 25, 2010 by lailasmum
adding information.

[Sandra in FL]

just want to encourage you to never give up. The internet is your friend, and message boards are wonderful sources of information. You have to become an expert on your dd. Because the docs are not cross-trained, they see only their specialty and if something else, say a deficiency, is causing a problem, you might be seeing the wrong kind of specialist.

 

It's coming up 2 years now since my ds has had stomach problems and the associated malabsorption/malnutrition/failure to thrive. I've been to so many docs I've lost count. The most help has come from a "natural" MD that specializes in autistic kids. He ran so many different tests that other docs don't. He was the one who found out my ds has a MTHFR mutation that I described in another post.

 

The hematologist that I followed up with for the MTHFR (her specialty) didn't have a clue. Her advice was make sure he gets a multivitamin with folic acid everyday. I finally found the solution (a simple $15 bottle of methylfolate) from reading messages boards of people with MTHFR who manifested with a myriad of problems: miscarriages, depression, digestive issues, etc.

 

Don't give up. Research, research, research. Good luck.

[Lovedtodeath]

I would find a naturopath. If traditional docs can't help, alternatives may have new ideas or information to consider.

:iagree:Electrodermal Scan. It finds everything in the whole body with one test. I had problems with chest pain and irregular heartbeat and the MDs could never find anything. The Electrodermal Scan found it, ND treated it, and the symptoms are gone.

[stripe]

Sorry. It's also been my experience that the pediatrician is more concerned about whether there are guns in the house, smokers in the house, where my kids sleep, and what sort of milk they drink, while missing major health issues. I hope you find help. Keep looking. We parents care much more for our kids than anyone else, and you are right to be your child's advocate.