Our youngest daughter, Sarah, has said she's had a few headaches the past three and a half weeks- maybe four. She's 7 years old, and normal in all other ways. She's also come in in the morning saying she's been seeing stars or clouds sometimes when she gets up. This has not really bothered her, but we took her to the eye doctor today, and the diagnosis was really awful.
After testing her, she is colour blind to just about everything. She has a giant blind spot in the centre of her left eye, and a small one in the middle of her right eye. She could not read the eye chart past the second line, and missed every second letter. Wheh trying to read words from a book, she only hit on every second or third word- using peripheral vision only.
They rushed her to a GP, then to the hosp. for a CT scan to rule out brain tumours- (OK so far) but she has optic nerve oedema- a swelling of the optic nerve that's cutting off blood to the retina. Cause in this case- unknown. No normal or expected cause exists in our environment (diabetes, obesity, MS, cyanide poisoning, no brain tumour...)
They are still trying to see what's causing it so they can start to deal with it and try & stop it before permanent damage occurs.
Fortunately she's a happy girl, and does not see the potential horrors of the quick onset of the problem. Somehow she manages and works around what she can't see. Her teacher did not even notice a problem.
In the meantime, some prayers would be really appreciated, thanks!
Posted by PatRaap (Member # 4290) on :
Ian, Prayers are coming her way as we speak. It is always scarry for anyone of us, but when they are our children and so young, makes it even harder. Keep us posted, and we pray they can get it figured out and takin care of.
Posted by Bill Modzel (Member # 22) on :
Wow Ian, I can't imagine what your going through. Our prayers are with you also.
Posted by jimmy chatham (Member # 525) on :
prayers going out for ya'll.
Posted by bill riedel (Member # 607) on :
Ian, no problem in sending prayers for your little girl. Thank God she is healthy in every other way and not worried. Try to locate the very best eye specialist, this is important and should save a lot of time. Bill
Posted by Darcy Baker (Member # 8262) on :
Ian, I'm praying for your daughter.
Posted by Jillbeans (Member # 1912) on :
I will pray for Sarah, too. I am glad that she had the presence of mind to say something was wrong at such a young age. When I was a kid I thought everyone saw things blurry. It wasn't till I went to school that the teacher noticed I had a problem. Love....Jill
Posted by Mike Faig (Member # 6104) on :
Ian, sorry to hear of your daughter's difficulties. It's a tough spot you're in and I hope she will overcome it. Good luck.
Posted by Dave Sherby (Member # 698) on :
Praying here for your daughter too. Hopefully they will be able to reverse her condition. They are doing amazing things these days. We'll keep praying for her.
Posted by Barb. Shortreed (Member # 1730) on :
Sarah is in our thoughts and prayers Ian, please keep us posted as to her progress.
Posted by Neil D. Butler (Member # 661) on :
Sarah is in our thoughts and prayers also. I hate to see kids sick.
Posted by Gene Golden (Member # 3934) on :
Ian, This is not your normal "I'll pray" response. Forgive me if it seems blunt, but as I get older, I realize that sometimes we can be too passive in issues like this. We like to be "nice and understanding" human beings and we wish to remain cordial. As such, we don't normally like to be pushy or questioning for "fear" of upsetting someone, especially "Doctors". Remember, they are people too, and you need to force your way through their egos sometimes. Attack this as if it is your daughter's welfare that is at stake... that's right, it IS! Do not sit back and watch her being "treated", stand up and make sure everything that can be done IS being done.
I am a realist, and as such, I look at this as something you need to actively research... and don't rely on the doctors to do it all for you. They have many patients - you have your daughter.
I know you are very well versed with searching on the internet. Do your homework, and go to your doctors with every theory you can. If they dismiss your ideas as folly, find another doctor you can discuss this with. Take all the time with the doctors that you want during your visits, call them when you need, don't wait for appointments. THEY work for YOU. You are not imposing on them, don't ever feel like that. Your daughter's health is paramount. Every throbbing headache, every missed moment.
Check out links and see if any of them look promising. Of course, it will be hard to read some of the responses you will see, because many of them will indicate illnesses and diseases that you would never imagine your child to have.
Do the research, and you can weed out many of those illnesses, but keep an open mind. Don't just summarily dismiss a symptom or a particular disease because you can't imagine your child having THAT disease or illness. Just wishing it away won't make it less possible.
Prayers are all fine and good, and you can sit back and wait for them to work, or you can actively pursue every imaginable resource until this is figured out and resolved. Hopefully this post will give you just one more avenue to pursue, one more observation of your daughter's symptoms, one more moment in front of your doctor because you are a PARTICIPANT in you daughter's health, not an observer.
You brought her into this world, don't let up until everything has been exhausted, including yourself. It will not be easy - stay strong.
Gene
Posted by Bob Kaschak (Member # 3146) on :
Prayers are on the way my friend.
Like others have said, glad to hear she is in good health otherwise.
We will be thinking of Sarah and your family.
Peace, Bob
Posted by FranCisco Vargas (Member # 145) on :
sorry to hear about your daughter, yeah do all you can You can count on my prayers...
Posted by Dana Stanley (Member # 6786) on :
My son got a headache one day and it turned out to be an IVM. I think that's what it was called. It seems a-lot of people are born with malformed arteries to the brain. They are hard to find some times as thay are between the layers of brain matter. They did a CAT-scan, and no luck,( I told ya so) then they did an M.R.I.(always a better way to go) They found it. It required surgery but it was near the outside so it wasn't so bad.
He was in from a few days before Christmas to a few days after new years, but didn't mind as he had his Mom all to himself. He also liked that he had a video game available 24/7, and room service.
It grew back and he needed another operation the next year, but this year he checked out fine and won't need a check up for 5 years. Some people don't know they have this until they are in their 20s or 30s.
If you want to know more feel free to call or E-mail. I too am prying for Sarah. She can call my son Nic (10) if she is worried about any hospital stay and he would give a good report.
[ March 07, 2008, 10:06 AM: Message edited by: Dana Stanley ]
Posted by Bill Lynch (Member # 3815) on :
Ian, I'll definately pray for her, and I'm with Gene, unfortunately relying on the medical community is not always the best course, you have to educate yourself and advocate for your daughter. I know our daughters went through some stuff, though not as frightening as what Sarah is experiencing, and I had to go the second and third opinion route.
Posted by Deri Russell (Member # 119) on :
Oh Ian, the poor wee girl. I too send Reiki to Sarah Stewart-Koster, and your whole family. So glad you listened to her. Now go and find your specialists, quickly.
Posted by Harris Kohen (Member # 2139) on :
Ian I'm sending good prayers out for Sarah.
Like Gene said, Fight for her and get the best you can get and strive for nothing less.
Your freinds are here to help lend a shoulder when you need it.
Posted by Candace Wosminity (Member # 8887) on :
Definately keepining Sarah in yy Thoughts and Prayers!!
What at post to fond, my first time here!! My daughter, Briana, just turned 8..at 7 she also started complaining of headaches, so bad she would cry...Blurred vision, bladder inconsistency, seeing spots, ect. She seen a neurologist who did a MRI....same, he wanted to check her brain, he also checked her spine....Just talked to him this Morning...No brain tumors, but there is a cyst within her spinal colum..We go see him on Monday, and she is being reffered to a neurosyrgeon.
Sending Hugs and Healing to You and Yours!!!
Posted by Glenn Taylor (Member # 162) on :
Wanda and I will definitely be keeping her in our prayers, Ian.
Posted by Shane Durnford (Member # 8125) on :
We have a nine year old daughter, I can't imagine what you must be going through. Hang in there, I hope everything works out sooner than later.
Take Care
Posted by Tom Giampia (Member # 2007) on :
Ian,
Sharon and I willkeep your family in our prayers.
Like Gene said, find out all you can and don't assume that every medical professional who treats your daughter is always right. They too are human and make mistakes... be dilligent.
My only other advice would be to find the VERY BEST in the field.
I know this because my daughter was born with a hole in her diaphram which was diagnosed a month before she was born on a sonagram.
Had she not been treated by the best doctors, with the best resources, she would not have lived more that a few hours.
We were fortunate to live only an hour from Columbia Presbyterian in NYC, which at the time, was 1 of only 6 facilities in the world that was prepared and researching her ailment.
My Amanda is now a happy and healthy 21 year old.
I hope you and your family have the same outcome.
Posted by Don Booher (Member # 126) on :
Ian, Speak the healing over her in the name of JESUS verbally and claim it by FAITH that she WILL be healed.
Blessings to you and your family
Don
Posted by Deb Fowler (Member # 1039) on :
Ian and Joan, I was out all morning, to return and see your post. Little Sarah is so sweet, I can attest to that, as staying with your children and growing to know them during and after the meet in your home. You are in my prayers and The Great Physician's hands. As Gene and others have said to find the best of the best, and research as you are internet savvy, you don't know where you'll hear about the right specialists or research.
I will also consult some of the doctors here and in Ohio as some study unusual conditions as maybe the ordinary General practitioner may not know about others since it isn't their specialty. You just never know where new developments are discovered. I also was full of worry when my granddaughter had migraines and then stomach migraines and landed in the hospital for a week keeping nothing down, in excruciating pain, losing weight and weak; we just didn't know what was going to happen if things didn't change.
I brought my concerns here also and there were many, many prayers. She is fine and is on a mild medication and has to slow down sometimes and drink more water when active, but is very, very active and leads a nice normal life now. It's been three years since then and things are pretty good.
Sarah always has that nice, sweet smile and the big brown eyes; what a cheerful girl she is! Please give her my love; and yes, it is good that she told you right away, and soon maybe with the right help she'll be jumping around chasing the dogs and horses and guinea pigs!
Posted by Amy Brown (Member # 1963) on :
Wishing all the best from the Brown's. Keep on those doctors.
Posted by jack wills (Member # 521) on :
Many, many prayers for this young lady...
Jack
Posted by Jane Diaz (Member # 595) on :
Hang in there, Ian! We will be thinking of you and hope all goes well! Keep us all posted here.
Posted by Jon Butterworth (Member # 227) on :
That's realy sad news Ian. She's a real sweetie.
Sue and I both send our best wishes. We will be thinking of all of you.
If there is anything we can do to help, just ask. Even if it's just a bed here in Tooowoomba to save that trip back and forth to your place.
Posted by Deb Fowler (Member # 1039) on :
Ian, Cleveland Hospital in Cleveland, Ohio, is one of the best in the world: the division for children is called: The Rainbow Babies' and Children's Hospital. You could do a search as they are world renown. They work with any income and have a Ronald McDonald's house for the families to stay across the street: no charge. I have a friend whose children have been using this for years. Another option, depending on the situation is St. Jude's and it is completely free for any child. They are where I would take my children for anything that needed the best specialty. You can stay in the children's rooms overnight also if you wish; both hospitals are "very accommodating".
John Hopkins and University of Chicago, Harvard, MD Anderson in Texas, UCLA in San Diego, are other options to look at as the U.S.A. has the best with technology as my friend, a surgeon told me.
[ March 07, 2008, 08:27 PM: Message edited by: Deb Fowler ]
Posted by Bobbie Rochow (Member # 3341) on :
I feel so bad Ian, I will surely pray for Sarah too!
Posted by jake snow (Member # 5889) on :
Ian, have hope brother. It will get better. Pray for ya.
Posted by Judy Pate (Member # 237) on :
Sarah and you and your family are in my thoughts and prayers. Keep us posted,Ian. Judy
Posted by Craig Sjoquist (Member # 4684) on :
my prayers for sara and strenth and speedy recovery
Posted by Ryan Culbertson (Member # 7560) on :
We are praying for you in South Carolina.
Posted by Alicia B. Jennings (Member # 1272) on :
I pray tha her Doctors can find what's wrong and can know what to do about it. Children are very strong and can be healed of most things. I feel very bad for all of you. Hugs from me.
Posted by Todd Gill (Member # 2569) on :
Absolutely prayers from our family to yours Ian...may God awash your family with a peace and calmness as you go through this, and we pray for healing and restoration as well as expert diagnosis and treatment from your doctors.
Keep us posted Ian....we're thinking about you and your daughter!
Posted by James Donahue (Member # 3624) on :
Sorry to hear it, I've been praying.
Ditto about the strength of kids: our past president, Theodore Roosevelt, had a lot of physical problems as a child. My brother had terrible stomach cramps when he was little, but he's fine now.
Posted by Tony Ray Mattingly (Member # 469) on :
Almost sounds like a similarity with me and migrane headaches. I get blind spots. As far as your daughter seeing "stars" with me and again kind of similar, it looks like somebody took a picture with a flash. Maybe she is having some form of a migrane headache.
Posted by Catharine C. Kennedy (Member # 4459) on :
Please keep us posted for anything we can do as well- My prayers of you all from upstate NY- Cat
Posted by Charles Borges de Oliveir (Member # 3770) on :
Ian,
My heart goes out to you and your family. I too have a young daughter. We will keep her in our prayers.
Posted by William DeBekker (Member # 3848) on :
All our Prayers and Best Wishes to you and Your Daughter
Posted by Ian Stewart-Koster (Member # 3500) on :
Thanks folks, we've been out all weekend, at a big school fundraising function & Sarah was amongst friends- but clearly she sees with difficulty, though most there did not notice it. She was better on Saturday than Friday. It's kind of like a permanent blot in your eyes from catching an arc-welding flash.
Tomorrow she goes back for more diagnoses. The chiropractor, who's a kinesiologist reckons he can fix it. I'm inclined to believe him.
The problem is weird- search it on the net, and it may go away of its own accord, or it may rapidly get worse.
We really appreciate your prayers & good wishes- thanks!
Posted by Bob Noyes (Member # 8317) on :
Prayers are with your daughter and the rest of your family. I had a scare a long time ago with my youngest daughter, Thankfully everything worked out fine, as I pray it will for Sarah.
Posted by Paul Jordan (Member # 1198) on :
Ian, I'm lifting up Sarah in prayer right now.
Posted by Donna in BC (Member # 130) on :
Prayers are sent for all of you Ian!
Posted by John Deaton (Member # 925) on :
I hope everything works out Ian. Ive had something simular in ways over the years, they are called "floaters". Actually looks like an out of focus blob that blocks the vision in my eyes. Sometimes one of them, sometimes both of them. It usually leaves in a few hours, but has stayed for a day or so also. They are sometimes brought on by stress or anxiety, but can be triggered by other things also,all of them not serious. Keep us informed.
Posted by Todd Gill (Member # 2569) on :
John - I've got "floaters" too....which are actually tiny bubbles or debri in the vitreous fluid of the eye. They are a permanent feature and don't come and go with stress....I'm wondering if you have something else?
Your description sounds more like pre-migraine visual aura to me...which I have occasional migraines (very occasional thank goodness)... but they always start out with white or silvery blobs that block out a very small section of my vision; sometimes they go away and other times the blob grows and sparkles like Scotty beaming up Captain Kirk on Star Trek until most of my vision is corrupted.
Migraines can indeed be caused by stress and will cause "blank" spots in the vision. Luckily, as soon as I see that first little "blob" of missing vision, I can take an aspirin or ibuprofin, lay down in a dark room and it will kill it off in about 15 minutes.
Ian - I too thought of Migraines as a possibility - but it sounds more complex than that...I'm sure the docs will give you a diagnosis....still thinking about your daughter, and your family Ian - keep us posted.
Posted by Gene Golden (Member # 3934) on :
Ian, Ask your daughter if she happened to stare at the sun for some reason. When you mentioned the arc weld flash, it sounded plausible. Kids do strange things. It may not help any, but it could help rule out other issues.
I used to stare at 100 watt bulbs until I could read the name and wattage on them, just for the heck of it. Hurt like hell too, but it was "fun" to be able to do. I saw stars for several minutes afterwards. Luckily it was just light bulbs.
Posted by Sheila Ferrell (Member # 3741) on :
faith.
No need to capitalize it. All ya need is a little.
He's willing and able.
Posted by Dana Stanley (Member # 6786) on :
Don't feel bad John ever since the 70s Ive seen colored spots. There much worse in the dark and if I am emotional. I count myself fortunate to be able to still feed myself after my 70s experiences. Ian have they done an MRI yet?
[ March 10, 2008, 04:20 PM: Message edited by: Dana Stanley ]
Posted by Kissymatina (Member # 2028) on :
Ian, sending good energy. Gene is right, do NOT let the doctors pull their ego trip on you. Demand their attention & if they don't seem like they're open to talking to you, find 1 who is. Then find a second opinion.
Posted by Ian Stewart-Koster (Member # 3500) on :
Thanks again folks. No, she's not had an MRI, just some other (an ultrasonic ?) scan which came back all clear in regard to tumours, but which did indicate the swelling around the optic nerve. Yesterday and today she was better than last Friday- she can read text if it is about 10-12mm tall, bold, like 24-36 point fonts with thick strokes. Writing that is about 16-18 point is a blur, and 'normal' text like 10 to 12 point letters just appear as white space-nothing there.
The chiropractor found her back out-of-whack again- but he's decided that it is going out as some result of trying to compensate for the eye problem, and not the reverse. She strains and looks sideways to try & see things. Today she's back at school, so we'll see how she goes. She's not visibly distressed about it, but the greatest problem to her is if she gets up at night to go to the toilet, she cannot see anything, even using a torch, so she wakes her sister up for help. She's got an appointment with an opthalmologist in a couple of days to try & work out what, where & why.
Gene, she hasn't stared at the sun- we're a fairly sun-conscious nation here, because of prevalent skin cancers, and also the few eclipses of the past few years mean that the message gets to all kids at school about never looking directly at it.
The only light source that may have had something to do with it, is possibly my screen UV exposure lamp, but again, they know to NOT look- and that would affect the cells on the back of the retina, but I don't think it would cause the swelling/oedema that's constricting the optic nerve & reducing the blood supply to the eye.
So far the medical profession has been admirable in their concern & efforts.
Prayers (& good wishes) all make a difference too- thank you again.
Posted by Len Mort (Member # 7030) on :
Heavenly Father we lift up Sarah to you and her afflictions, we look to you to guide the doctors in your healing for her. Jesus, said that we must be like children. I belive that children have much faith in their parents for their health and safety. We as parents must have faith that God's word is the truth. Jesus, said where two or more are gathered in My Name, what so ever they shall ask shall be granted by My Father in Heaven. This we ask in the name of Jesus our Lord, Amen
Posted by Dana Stanley (Member # 6786) on :
Ian Doctors don't offer to do MRIs as MRIs are the most expensive way to go. I have seen several cases, including my sons, in which they did a battery of tests and until they did the MRI they couldn't find the problem. My wife's brother is a radiologist, and I have had conversations with him about this sort of thing ,so I'm not speaking out of turn. I am with Lenny too, prayer is a big part of the answer
[ March 11, 2008, 09:38 AM: Message edited by: Dana Stanley ]
Posted by Ian Stewart-Koster (Member # 3500) on :
Thank you all again- an update on Sarah- it's now been a week since we officially knew of the problem- she's had two more visits to the chiropractor/kinesiologist and her headaches have gone, and her blindspots have reduced a lot in size- both are the same now, but much better than last week. With effort, she can manage to read 14-16 point text in a book, but 12 point & under is just a blur still, and 9 point is invisible.
She's off to another specialist next Wednesday whose name-pardon the pun-is Dr Seawright!
Posted by Dana Stanley (Member # 6786) on :
Is that really his name Ian? Thats too much. God bless you all.
Posted by Darcy Baker (Member # 8262) on :
I had an attorney named Kreep once. for real.Best to ya Ian.
Posted by Joe Golden (Member # 6870) on :
Ian, I and and the few friends I have made in town here in Kentucky have added Sarah and your family to our prayer time.
When I lived in Texas, a good friends daughter had a very similar situation to your daughter. The MRI always came back clear, but his daughter would get very dizzy and sick to her stomach when standing, could not read and she also had spots clouding her vision. Took the Dr's back home 6 weeks to find the problem, turned otu to be a sinus infection, a very bad sinus infection that wound up being corrected with surgery of her sinus'. But instantly she was back to normal.
As we Pray, we will pray that God will give you the boldness to ask even the wrong question, something that will cause her Dr/s to think out of the normal routine so that God's healing power will be revealed through this.
Bummer you dont live in Kentucky, I have a great gift of just sitting with friends in hospitals while all sorts of stuff goes on with family members. Just remember, when your sitting somewhere all alone, that ALL OF US are right there with you. God does not allow us to go through the valley alone, and since He has done it for me, I am confident He will do it for you.
God Bless you Ian. God Bless Sarah, may God Bless everyone who has a hand in this and reads this.
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