I need answers- I am having a nervous Breakdown!!!

I am a 35 yr. old mother of 2. My oldest is 18, he shows no outward signs of NF. My youngest is 10, was born with cafe au lait spots all over her body. Our Pediatrician sent us to Boston for a consult with Dr. Mira Irons when I showed him the spots, and she said that with no other symptoms she could not give the Dx, but suggested we continue to watch her progression with annual visits to the Ophthalmologist as well as her pediatrician. Just shortly after her 2nd birthday we brought her to the Hasbro Childrens Hospital in Rhode Island, as we had moved and insurance directs where we can go... There she was given the 2nd criteria for NF- freckling in the auxillary/inguinal areas. A few months later we moved to SW Florida, where we presently live, for a while we saw a neurologist to follow her symptoms, until we lost our health insurance, and for 4 years we simply prayed nothing was going wrong, as we were unable to attain insurance for her privately or state funded.
My daughter has had soo much trouble with school. Her behavior is out of control most of the time she is a sweet and loving child, and other times she misunderstands everything said to her. She is like living with a fragile egg thats half broken and leaking everywhere!!! I have begged our pediatrician for help, and the schools too!!!
Last year when she was 9, she began to say we didn't love her, and she wished that she was never born. I have never cried so hard in my life, and again I begged the school for help, and instead they pushed her and forced her to deal with children bullying her and teasing her, and every time she acted out I would have to go pick her up at school, and bring her home. Lectures on behaving and what will happen only further exacerbate the issues. The day before Thanksgiving she ran out into oncoming traffic, and says she wasted to kill herself. Where does a child come up with ideas like this? I dont know what to do for her, we lover her soo much and I try to treat her as normal as possible.
Well we finally got health insurance- I only had to threaten to sue the state if ANYthing happened to her in regards to this condition!! Gee, wish I had done it sooner... We went to the ophthalmologist, he didn't find any signs of optic glioma, and said her eye sight was slightly off but by less than a point- no glasses, then we went to get a physical, and nothing wrong there either- yeah! Then, we went to the neurologist who ordered a new MRI after doing an EEG, and of course then theres the follow up to the MRI- which we had last week(the day before her 19th birthday) and there it is- thickening of the optic nerve and a choroidal fissue cyst on the right side. The Neurologist didn't really explain what that means, just said I need to see the Neuro-oncologist as soon as possible...ok so I go home and schedule the appointment, and its for 2 weeks later... I decided to go online and look this optic thing out, so I know what kind of questions to ask....

OMG, why wasn't I told that its a type of Brain tumor? Why would anyone want to wait and see if it goes away on its own and risk a child going blind?

WHy is my mother saying I am getting all upset over nothing? Why do I feel alll alone? Im reading your posts, and I see nothing to look forward to...
Why can't I find information on this Choroidal fissue cyst thing?

I am very overwhelmed, and scared and I really think I need to talk to someone. My mother wasn't any help yelling at me and telling me I am making a big deal over nothing....

SOmeone help me, please?

By pettythoughts
Posted July 7, 2009 at 8:14 am
Report post

I know how you feel about them not telling you everything. I just found out on our last MRI that Austin has plexi's under his ribs. They have always been there but they only mentioned them this time cause they've grown a little. It's a frustrating thing to want to know everything, but then maybe not everything matters, so should I stress over it? If they grow big it's an issue, but if they're small there just extra tissue. I always get a second copy of the films and the reports (usually the disk has both on it) and I build a list of questions from them. When I don't ask, I start imagining what it could mean, and that creates more of a problem than spending a few extra minutes doing a Q&A session w/ the doctor.

By MaryT
Posted July 6, 2009 at 5:05 pm
Report post

Don't wory I had a mass on my kidney and bowel. A lucky 10 /0/0 of us get this. Good for you yelling at the doctor. I think some doctors think them selfs as a gods. I know I had a problem last year and because tests He ordered ran late my appoiintment ran late. I called them numerious times to reoport I was held up dowwn stairs. I was very late for my appointment. The Doctoe comes as says he cann't see me because I am late. Its 2 pm. I have been there since 7. I was upset for the tests running so late. he yells at me like it was my fault.
I was not happy I just yelled back. he found time to take me, Doctors do not mind being late But you betteer not be late

By MyJosie
Posted July 2, 2009 at 7:55 pm
Report post

Mary, we took up scrap booking... so far she's into it for about 30 minutes at a time. We signed her up for the YMCA she likes the cheer leading camp, didn't car for the dance camp and we are going to try the gymnastics camp in a few weeks- after she gets back from visiting with family up North. Her and her brother are going together- should be interesting I had a dream that the plane crew brought her back...LOL

Anyway, I thought I would share what was happening.

We had the MRI of Brain and orbits, plus the Thoracic, cervical, and Lumbar spine series at the beginning of June. Still waiting for the "results" however I requested a copy of the images, and they gave me a CD- IM no MRI interpreter however it took me no time to figure out how to use the included application to view the slides. Sure enough I found the tumors... no surprise there. however I started noticing "thing" elsewhere so I put the CD away to wait for the followup.
Today we had our appointment with the NEW opthalamologist. We were to have the Humphrey visual field test 24-2. Well he proceeds to tell me that since we have not been to him in over 3 years he is going to have to reschedule us for another day for the test today was just a consult. I completely came unglued and started yelling at him right there in front of Josie and the Nurse/tech. I told him that if he did not give her that ttest today that I was not going to let the insurance company pay for the visit! blah blah, and then I whipped out the laptop and opened the photos and told him that her treatment was on hold waiting for the results of this test, and the Oncologist wanted it done by last month but we waited for an opening in HIS office- which was today... so he then he looked at the MRI photos, and said he would squeeze the test in today. I do not condone what I did, but damn they KNEW we needed that test Im sick of wasting time, and money. I want my daughter to be treated properly. thats it.

So when I got home I called her case manager and layed into her about how Josie is getting substandard care, and I am getting angry and sick of being treated like she is not important. Wasted my breath basically.

Anyway then I called the orthopedic who ordered the spinal mri's and asked for interpretations to be faxed to me so I would have them for the visit with the oncologist on next Tuesday, and what I got knocked me over...
My fault for assuming that IF any thing was wrong they would call right away... Josie was thought to have scoliosis- NO she does not- she has a 1x1 tumor in her L1-2 area of her spinal cord. And a mass in her Kidneys.

I have decided I need to FORGET I ever read the report until Tuesday when we go see the Oncologist. Not much I can do about it anyway on my own...

That's it for now, wish us luck next week!

Renee

By MaryT
Posted June 10, 2009 at 9:54 am
Report post

Hi

She is 10 correct? Ok now I don't have any kids but looking back at my childhood. At the moment you are a stay at home mom correct? Since kids in area are gone. I would try a few things to do during the day.
Go to libraby have her get some books out. you can sit down and r ead them together and then talk about it after. 10 is a great age for reading. If you can get her to read books. If you could you coulkd read them together. You could start reading the book to her.
do some crafts together. Are you married? have her make a happy day card for her dad and she could give it to her Dad. If she has grandparents have her make up some cards. Bake make cookies. Have her help in planning dinner. You might have a simple dinner every night have her help planning it. Have her make up a menu and have her place it on table.
Let her name the servings
your having plain ole pea's rice/potatoe,meat, drink's
you could name the servings any thing are you red sox fans? harry Potter fans' name the food anything.
may sound dumb but it will keep her busy. ( Harry's Pea's) Potters burgers
Do you have a nurseing home ,etc near you? if you have some construction paper, some recyled cards magazines or her drawings she could make up Have a happy day cards and she could drop the off to front desk, I did this for many years a few years ago. As I said I am 63 now.
Also you can try to other simple and expensive things

walk the beach and look for sea glass,sheels.

most librabries have free passes to the zoo, museums.
I also would give he a sheet of paper and have her write down her problems so you know how to fix them or have her tell you do not judge her let her just talk and then say ok lets try this.
If school is a big problem talk about what is going on. School for me was just horrible. talk to and ask what she thinks the both of you can do about it what she wants. Maybe a tudor would be better home schooled

let me know how things go.

Love

Mary

By MyJosie
Posted June 9, 2009 at 9:49 am
Report post

Thanks to all of you who helped me to get past the initial shock!

It's been just over a month there hasn't really been a whole lot thats gone on.

We went to the oncologist- who told us the EYE doctor did not perform the proper tests, and being that on her first MRI they didnot find the tumors, and it was 4 years between MRI's and now the eye doctor not giving her the proper eye tests, leaves us with no answers as to how fast the tumors behind her eyes are growing so we had to schedule another MRI and another visit with a different eye doctor since the first one doesn't own the proper equipment to do the fields tests she needs.
In the meantime she has been diagnosed with scoliosis, and we went to the orthopedics doctor who took xrays and says yes she has it and its not bad enough for a brace just yet, being that she just turned ten 2 months ago we now have to observe, they also requested spinal MRI to check for spinal tumors, we going on FRIday this week and have another brain/orbits and they will do the spine at the same time to save on anesthesia.
Schools out so now I am going crazy everyday, she cannot entertain herself for more than 5-10 minutes if I am lucky... She's eating us out of house and home..lol but shes had a slightly nicer attitude. All the kids are gone for the summer, only a few left on the island now so shes very bored...i feel so bad.
Hopefully when we go back to the oncologist at the beginning of july all the tests will have been done correct this time, and they can tell me it was a big mistake there are no tumors and life will be good, otherwise they will tell us she needs chemo now.

I considered going back to school since I cannot get a full time job with all the appointments but hows that possible? I can't see trying to study for an exam, and keeping her entertained at the same time....

By MaryT
Posted May 11, 2009 at 5:35 pm
Report post

Hi

School could be the worse place for her. Does she have friends? Boy I remember those days. I am sure the teachers are telling her bad things about herself. I know I was told how I was stupid, usless, lazy,this was not done by children but by teachers, guidence conc (sp) one told me in high school I was usless and would never make anything of my self. I flunked typing. If there are lots of kids that are her friend I was make the scholl send home a tudor her. Do Not homeschool her. Mothers and daughters at this age are not a good mix. Do not let the school pass her off to you to do the teaching.

OK we all can be penpails to your daughter also. That way we can ease her way thru the years a head and give you a break. PS Telling her you love her does not work its the day. Some days she will be your best friend others she will hate you

Mary

By MaryT
Posted May 11, 2009 at 5:11 pm
Report post

Hi

I am 63 now and when I was younger pre teen/teen. I had the same thing Crying, yelling at mainly mother thats she did not love me. Wishing I was dead. School was horible teasing. I still have the scars.I am fine now. One thing does she have a aunt or close friend (Trusted by both of you)she can talk to? This person should not tell you what they talk about unless its a danger to her or your family. Believe me all my mother would have to look at me the wrong way And I would be off screaming and crying. I never knew it was NF related. I am telling you its not you. Is you daughter starting or anay signs of her getting her period? He genes maybe raging in her bady and she doess not know how to handle them. (None of us did) Does she have a close friend/friends. Looking back I would not want to be that age again. its bad enough if your healthy.

Love

Mary

By TexasGal
Posted May 11, 2009 at 2:28 am
Report post

I am so amazed at all the things that you all are saying about NF and symptoms! My son who is almost 17 has NF..he was diagnosed at an early age. He was checked when the doctor recommended and we were told to watch out for signs of a tumor until the time he was 10. When that year passed, I basically thought ok that's it!
Well, here recently I have been noticing some patterns in his behavior, communication with him, grades in school, etc. When you all said that your child repeats everything, I almost fell over! He does that all the time! He is a sweet, sensitive guy!

But he continues to get in trouble at school for his inability to stop himself from talking, touching, annoying his classmates. He gets angry easily! He is very self conscious of everything. He struggles to make friends.

Today, being mothers day..he questioned me all day about what all we were going to do..even though I had answered his questions thoroughly or so I thought!
He does many impulsive acts, never, ever thinking about the consequences of the act!
Thanks for listening. Even though today was Mom's Day..it was over shadowed by his thoughtless acts!

Be Blessed,

By dawnjoennikki98
Posted May 4, 2009 at 9:14 am
Report post

Wow. My ten year old daughter has not been diagnosed, we've been without insurance for a long time, she just has 6 cafe au laits, one is covering half of her thigh, the rest are smaller. But anyway, she has had the exact same behavior problems, the "wanting to die" etc.. I wonder how that relates to nf, if it does at all? She was tested for learning disability last year, she was diagnosed with a "processing disorder" she too misinterprets things that are said to her. And takes her a long time for things she learns to sink in.Thank goodness, in second grade her teacher referred her to be tested. She also has Sensory Processing disorder. She has really improved since having an IEP. I know they are hard to get, but if you can get a teacher on your side, or just write to the school board, request your child be tested by the child study team. Good luck everyone! If I wasn't a single mom who had to work, I would homeschool her!! :(

By jakeee09
Posted May 3, 2009 at 2:46 pm
Report post

this is called non verbal learning disabilities it is when the kids don't read non verbal cues for example you could be upset your face could show it but they may think you are being funny they may get to close and in somebody's space because they don't understand and cant comprehend it they can be very smart but this they don't get for some kids with NF it is common not all of us with NF have this that is one of the variables of NF i hope this helps

By stitcher
Posted April 21, 2009 at 7:16 am
Report post

hi ,
I had a similar problem with my daughter,,, it all started when she was 2 -2 1/2. and she's now a grown adult. I'm sorry to say I don't have time to write it all now,,, have to run off to work, it's very lengthy,,,,
I'd be happy to e-mail you and tell you everything we went/and are still going thur.
watchmestitch@yahoo.com
please feel free to write and I'll answer
and tell you what all we went thru.
have a blessed day and sorry,,, it's time to dash off to school.
Donna

By MyJosie
Posted April 20, 2009 at 4:14 pm
Report post

NO, we're on the other side of the state. I am extremely bummed out today, The Oncologist secretary called today to reschedule our appointment. Apparently, Doctors have emergencies too (that was supposed to be funny)! We have to wait another week to find out what is going on inside her head now... IF it wasn't for the information you guys have given me, and stories I have read (good & bad) I think I might have come unglued on the secretary... I'm still stressed out, but for some reason today I just feel numb more than anything else.

By wildflower
Posted April 20, 2009 at 10:45 am
Report post

Are you in the Orlando area? If so, The Florida Hospital there has an NF Clinic that they set up periodically. Although my daughter has not been seen there, I've been told that they bring in specialty doctors of all kinds to address the variety of problems that can result from NF1. I did talk to the nurse who sets up the clinic though, and because we needed some quick testing done for disability, the nurse referred me directly to a neuropsychologist who did the testing for my adult daughter which was helpful to me and supportive to her disability claim. He was very good and patient, treating my daughter respectfully. BTW, the neuropsychologist recommended that my daughter have a scan for optic glioma, but she has no health insurance right now. We are hoping that we can get that done when she gets disability.

By CindyLouWho
Posted April 19, 2009 at 5:12 pm
Report post

Well, emotional and social issues unfortunately are a feature of the disorder for some NF children.

Does your daughter seem to sleep well?...neurofibromin has a relationship to the circadian clock which seems to make it more likely that NFers will have sleep disturbances. Optic glioma in certain locations is sometimes linked to precocious puberty but since your daughter is ten unless changes, emotional and physical, happened some time ago then this is probably not relevant. But she could just be starting regular puberty...my daughter will be 11 in June and we are definitely noticing changes, of every type.

http://www.ncbi.nlm.nih.gov/pubmed/17726688

http://cat.inist.fr/?aModele=afficheN&cpsidt=1849218

http://journals.cambridge.org/download.php?file=%2FDMC%2FDMC47_04%2FS001216 2205000460a.pdf&code=5045fadeeff96da383c2e95bce65491e

I hope you get some reassuring answers soon.

Cindy

By MyJosie
Posted April 19, 2009 at 4:43 pm
Report post

Unfortunately, we can't shut her up NOW, and that's what bothers most kids & the teachers. Plus, shes so clumsy she knocks into people all the time(hands and whole body), and has been accused of doing it on purpose by the teachers to other children, etc. Then if the classroom gets too noisey or theres chaos she gets headaches and starts to cry hysterically, because she gets confused as to what she's supposed to be doing.
She IS beautiful, thank you.
She now has a therapist that comes to the school once a week, but that just started a month or so back, we have a long way to go!
Still everytime we ask things of her (from drying her hair, to homework, to get ready to go out)she either melts into a puddle of tears, or yells we don't love her.

By little-laura
Posted April 19, 2009 at 4:00 pm
Report post

First I would like to say your daughter is beautiful!

I used to have social issues growing up, I read body language poorly and was over emotional to situations.

I have adhd and ocd which added to the issues... My parents took me to therapy I had a play therapist as a child and I love it, I enjoyed talking to her and playing as I got on the therapist taught me how to deal social situations and my anger and frustration issues...

I still have therapy now as an adult and I now read body language very well and am fine in social situations. You cant shut me up now lol

By CindyLouWho
Posted April 19, 2009 at 3:11 pm
Report post

I don't know how long it takes to move past the shock and awww of it all....NF is progressive so I guess it just kind of waxes and wanes. A lot of moms refer to it as a rollercoast ride and to me that seems exactly right, sometimes it's uphill, sometimes it's downhill and sometimes it's a white knuckle ride all the way! At times when I am very worried, it actually helps me to think of the rollercoaster analogy and remind myself just to hold tight...that the scariest, most worrisome parts generally pass....or at least let up a little.

I'm not sure you did anything wrong at all as most kids are totally normal and should absolutely be treated as such. It's only when some new sign develops that we are reminded that NF is always there, sleeping sometimes but still there. For me, staying on top of the research and information, along with keeping a keen eye on my daughter's emotional well being, particularly at school, gives me a sense that I am doing all that I can. We can't expect anything more from ourselves than that.

How much to tell your child and when is always an individual matter. My child knows a lot about NF and it's complications but not the full extent of the dermal tumoring. I don't believe in frightening her about something that may not happen. She understands that some kids have very serious consequences. As long as you deliver the message with love and reassurances and are open to questions, then I am sure it will be fine.

Your little girl looks lovely BTW.

Cindy

By MyJosie
Posted April 19, 2009 at 2:17 pm
Report post

Thank you Cindy.. that info deffinately helped me some. I have lots of questions not all medical- like, how long did or does it take to move past the shock and aww of it all? How do you treat your child?She looks normal you know( that's her picture), other than the spots which are mostly hidden by clothes.BUT I sometimes forget that its there and I find myself treating her as I would say normal- and then something occurs and she melts down or blows up and then I remember and say to myself-oh crap what am I doing to her? then the guilt sets in... I feel like I did this to her, its all my fault. I don't even know what I could have done wrong-and I know everyone says its nothing I did, ok but it feels that way. I let all this happen to her and listened to teachers and doctors tell me what to do and it was ALL WRONG! She has already been through so much mental trauma from those schools policies, teachers opinions, and other childrens actions. How do I right that now? How do I help her move past that and become the happy child I once had? And how do I tell her about this, I mean she knows that she has NF birthmarks (CAL), and yesterday we told her she's going to the doctors (oncologist) wednesday for her headaches (which she has complained about every day for the last 9 days). But I have no idea what is safe to say and not safe to say and what she will react to or not.... I'm so worried about doing the wrong thing again.

Welcome to Inspire!

Explore topics in this discussion:

26 replies

Add to the discussion

Group leaders

You