Has Any Heard of This Condition???

Updated on December 19, 2008
K.R. asks from Cedar Park, TX
7 answers

My Ladies,
My daughter 9 years old was diagnosed 2 months ago with a neuro condition called Pseudo tumor Cerbri. Your brain believes it has a large tumor and is producing more spinal fluid to compensate, which causes to much pressure on the brain.

A little of the history is ...

Kylie's school called and said she might have a vision problem, she was seeing double. So the following day I took her to our pedi for a sinus infection, asked the pedi to check her eyes. When the nurse returned she said Kylie bombed the test. Ok ... well ummmm. Kylie has had her eyes tested since she school started and never any problems. I got her in 2 days later which was last Thursday, Oct. 30. Kylie was having headaches, BUT Kylie has serious allergies and was squinting to see, so a headache was not out of the normal. At the eye doc things seemed strange being that I have needed glasses and/or contacts since I was in kinder. They doc seemed out of the normal. Running test I have never done and asking weird questions. Just had a look about her. As a mom in the pit of my stomach I was worried ... I didn't know why or what but something was preparing me for the news. She was in the room with the eye doc for 1hour and 15 min. When the eye doc was done we went out to check out the cool new glasses. well... the doc pulled me aside and said that in Kylie's left eye her optical nerve was swollen. The right was pointing down but no swelling. The left was a very small amount of swelling. She said I am going to call a surgeon and consult with him if you don't mind waiting. Crazy lady say WHAT?? She came out to discuss what he said and what she found and she said there is NO need for alarm and the surgeon and I agree this is minor swelling in only one eye. He will take a look at her eye for you, just pictures and measuring so if it ever increases we will have good numbers. Ok not the best news, well it got worse they explained what caused it to be constricted, it takes surgery to fix and she has a 50/50 chance of loosing all her vision. BLIND? Yes OK - well I talked to the surgeon. They got me in Monday morning at 7 to run tests. While there at the surgeon office, same thing, people seemed scared. Nurses were calling others for codes, checks, and I don't even know what else. They did a total of 40 different test, they said there was no other test they could perform on the eye. The doc comes in and said both nerves were extremely swollen, there was NO constriction. This he said was not what we wanted to see. If there is no constriction, but there was swelling, the swelling was coming from something putting pressure on the back of her eye. Ok I might not be a doc but I do know what is behind the eye. The brain. Right? He ask for our pedi # , asked me to call my husband, and walked out of the room. Before he came back in, our pedi was calling my cell. The pedi said K. this is very serious! I want to call an ambulance to pick her up and I still had no idea why, he said papilledema (swelling of the optic nerve) is caused from pressure in the brain, which is caused from brain tumors or pseudo tumors which is hypertension in the brain. She needs an MRI right now. Ok .... well I didn't want her to know until she had her daddy. I asked him to please let me drive her. He complied. I put her in the car, turned on a movie for her, put in her head phones fighting back a flood of emotion trying to not show her anything was wrong. I shut that door and yelled, cried, threw up, begged for God to help me tell Josh, my husband. I got a hold of Josh I told him. He was strong, and on his way! I drove as fast as I could with Casting Crowns "I will praise you in this storm" blaring. At Children's We walked in straight to a room they had called ahead for her. When the doc came in she said it is one of 2 things that causes papilledema (swelling of the optic nerve), brain tumors or pseudo tumors. They did the MRI and we waited. They came in and said it was normal! Awesome no brain tumors on to the next, Pseudo tumors. That takes a spinal tap, ok no .. the pressure in her spine is normal. PRAISE GOD!! BUT......where do we go from here If there were only 2 things??? Yes we have the faith God healed her from the 2 things. But as of last night, the headaches where more serve, From Thursday to Monday she lost more vision, and the swelling got 4 times worse and now in both eyes. She had to take 2 rounds of morphine, toradol, and Motrin within 2 hours to relieve any of the headache and get out of the fetal position. She hurt so bad. They sent us home. The next day our pedi said NO way, go back I am admitting her for further testing. They did more test all clear. But the symptoms where worsening but the day. And she was getting new ones. Keep us a few days. Then 3 days later back to er in extreme pain. Did another spinal tap. At that point they diagnosed her with the psuedo tumor cerbri. Now we are on meds for it and try to manage the pain.

So I was wondering if there where any other mom that have faced this and can share any imput. I fell like I am drowning and I cant understand everything they are doing and scared of the medicanes they are wanting to put in my baby. SHe is having 2-3 headaches a day.

Also our neuro is Dr. Kane does anyone know if he is good or should I get a second opinoin?

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More Answers

K.N.

answers from Austin on

Oh my goodness! How frightening! I'm so sorry to hear of your daughter's condition.

I would get a second opinion. In fact I would seek one immediately.. fax records, make phone calls.. I would not wait idle over the weekend. Not because you discount the first doctor but just to be responsible and thorough. Your current doctor should not take offense to you wanting one.

This website (http://groups.msn.com/pseudotumorcerebri/yourwebpage11.msnw) lists some TX doctors that apparently specialize in the condition (I did not see any in that list in Austin).Although I know nothing about any of them, I myself would probably lean towards the pediatric specialists in Houston (Dr. Ian Butler and Dr. Koening) because they are pediatric and Houston is closer... or you can contact the email for the website and see if he has any insight for who you should get a 2nd opinion from (?):

Texas
*Dr. John G. McHenry, Associate Professor Department of Opthalmology, Neuro-Opthalmology, Oculoplastic and Orbital Surgery. Aston Ambulatory Care Center, 5303 Harry Hines Blvd, Dallas, TX 75390-9057. ###-###-####
*Dr. Anthony Riela, Neurologist, Plano Texas and Medical City Hospital, Dallas, Texas. ###-###-####
*Dr. Babu Welch, Neurosurgeon/Neuroradiologist, UT Southwestern Medical Center at Dallas, 5323 Harry Hines Blvd, Dallas, Texas 75390. ###-###-####. Affiliated Hospitals: Children's Medical Center of Dallas, Parkland Health and Hospital System, University Hospitals-Zale Lipshy Building.
*Dr. David Sacco, Neuro-Surgery, (This is the group that worked on sperating the Egyptian twins!). ###-###-####
*Dr. Kurt Bangerter, Neuro-Surgery, Dension, TX. ###-###-####
*Dr. Ian Butler and Dr. Koening, Neurology (Pediatric), University of Texas Pediatric Neurology - Univ of Texas Professional Building, 6410 Fannin Suite 1010, Houston, TX 77030, ###-###-####
*Dr. Judianne Kellaway, Neuro-Ophthalmologist, Hermann Eye Center/ Hermann Hospital, 6411 Fannin, 7th floor, Houston, TX 77030, ###-###-####
*Dr. Rudolph Churner, Opthamology, McKinney, TX. ###-###-####
*Dr. Paul Flavill, Neurology, McKinney, TX. ###-###-####
*Dr. Philip Blum, Houston Neurological Institute, 4141 Vista Rd., Pasadena, TX 77504, ###-###-####
*Dr. Marc Spurlock, Family/GP, Richardson, TX. ###-###-####
*Dr. John Carter, Neurology/Opthamology, UT Health Science
Center, University Eye Consultants, San Antonio, TX. 1-800-778-3627
*Dr. Richard Evans, Opthamology, San Antonio, Texas
*Dr. Lee M. Buono, Neurosurgical Associates of Texarkana, P.O Box 2750-1002 Texas BLVD, Suite 406, Texarkana, Texas 75504-2750. Phone ###-###-####

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M.S.

answers from Austin on

My son was 9 years old when he was diagnosed with the same thing, first let me tell you that he will be 18 in January and is doing great! We were told this condition usually happened to young women who are overweight! I do not know Dr. Kane personally but his partner Dr. Jeffrey Kerr was Clayton's doctor. His eye doctor is Melinda Rainey at Children's Eye Center and she is very familiar with pseudo tumor cerebri. Fortunately he only needed Tylenol for his headaches but he was on diuretics for years and we always kept Phenergan on hand as he would become nauseated when the headaches hit and would have blurred vision. He had two spinal taps, both times his fluid level was close to 40 (over twice what it should be) and they would "drain" him down to about a ten. We took him to a doctor in Houston at the Children's Hospital for a second opinion. Dr. Kerr encouraged us to do this, we just wanted to make sure that he was receiving the appropriate treatment and felt much better when we found out that he was. Clayton had not had any headaches in quite awhile so he was taken off the diuretics when he became a Freshman in high school and has not had a problem since, that may just be luck or our prayers were finally answered. We have not had his eyes checked in a long time but his optic nerves were not "normal" the last time. I do know what you mean about the "pit" in your stomach, it is an awful feeling because your hands are tied. I am so sorry for what you are having to go through but please hang in there. Get second opinions and just stay on top of it, you will feel like you are living on eggshells but hopefully she will eventually grow out of it or the medication will keep her stable. Please let me know if you have any questions, I would be glad to try and offer you more information.

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C.S.

answers from Austin on

Hi, I can't tell you a lot of info, but I can tell you that I am a 32 year old adult who has had pseudo tumor cerebri since I was about 19 or 20. Back when I was in college, I had huge headaches and then like you said, I had always had perfect vision,but for a short period of time, I wore glasses for about a year until I got it under control with a medicine that I have now been taking for almost 12 years. I don't have any vision problems anymore, don't wear glasses anymore and my headaches are under control. I do think the weather changes affect my headaches now, like I know when it's going to rain usually, b/c I can feel it in my head. Let me know if you have any more questions. I know I am a lot older than your daughter, so it's more scary to go through that with your young daughter.

1 mom found this helpful
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O.C.

answers from Austin on

K.,
I will have you and your baby in our prayers, God WILL see you through this.

Ask, no TELL your Dr to do a CRP test on her, this is a simple blood test. CRP stands for C-Reactive Protein test,
this test will show How Much Silent Inflammation is in her blood stream. It will also show where it is coming from.
dr do not like to give us these test as there in NO drug for it, also dr do not like to get challenged.
we need to take control of our body.
the dr will probably tell you WHY do you want this test and WHAT are you going to do with the results,
answer;
I will find a Natural Alternative. like aloevera, or something natural,
Dr's don't like to hear that, but sometimes natural way is better since we ALL know the Serious SIDE EFFECTS of drugs,

ask the Dr, What can XANTHONES do for my child.
what are xanthones?
they are powerful anitoxidants, anti Inflammatory, anti VIrus, and the list goes on,
find the scence to it, on www.pubmed.gov, the National Library of Medicines.

I have not heard of this condition, I know my Mom was going blind and these xanthones found in fruits, have helped her tremendously.

I can send you more info or dr's websites so you can be prepared to answer questions you need answered.
tecuento123 at yahoo. com

God bless,
Oly

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J.G.

answers from Austin on

WOW! My heart and prayers go out to you! I don't have any idea about this problem but since it is so serious I would get a second opinion NOW! Maybe even a third. Doctors sometimes are blind to all the other possibilities. They get locked in on one diagnosis and that's where they stay until something drastic changes and then they still try to figure out why their diagnosis caused that change versus looking to see if it was a different problem all together. They are human but they forget this sometimes.

Talk to someone else immediately! They may come to the same conclusions but have a better idea as to what is going on or how to treat it. I would also consider seeing a neurologist if the surgeon you saw isn't one. They will have more to do with the brain and might have a different view of things.

Again, my prayers are with your family and daughter.
Keep us posted.
Jen
http://www.mommysjoy.com

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S.H.

answers from Austin on

I'd love to pray for her over the phone. We've seen a lot of people healed of various things this way.

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J.H.

answers from Austin on

My heart goes out to you K..

I would get a second opinion. My son's neurologist is Dr. Dilip Karnik and he is awesome. I'm just not sure how long it could take to see him. He's at the Children's Hospital here and his office number is ###-###-####.

Good luck with everything.

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