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 MyJosie
Posted April 18, 2009 at 6:58 pm
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oops correction my oldest is 15, and losing vision in both eyes.... by the way his pedi decided after the sisters DX Optic glioma to now genetic test the boy...hhhm

By inmemoryofjoval2007
Posted April 18, 2009 at 9:03 pm
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I am so sorry this has happened to you. Sometimes, even if we have the health insurance, it's the doctors who are slowwww......about doing anything. I am confused, you said your daughter is ten, then at the end of your post said you got the MRI before her 19th birthday. How old is your daughter right now?? I'm going to add you as a friend so we can talk.

By MyJosie
Posted April 18, 2009 at 9:27 pm
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I am sorry I was typing so fsst cause I was sooo mad at my moms attitude. My daughter is currently 10, we found out about optic glioma the day before her 10th birthday. My son is 15 ( and dont even know how I messed that one up...lol) He has eye problems since he was 7 years old and it just keeps getting worse with every passing year( he has no symptoms of NF). They both struggle with daily headaches, but he is the only one that sleeps for many hours afterwards...

By MYBRIAN
Posted April 19, 2009 at 6:19 am
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We basically went through sort of a similar curcumstance. When My son was 8, a scan revealed a ''lesion''. they called and told us that and said they would schedule an appointmen. When we got the papers in the mail, it said neurooncology, which sent me into hysterics. When we went they acted like it was no big deal and they wanted to watch it. We now go to the cleveland clinic where they are still monitoring it, they believe it is a astrocytoma and said its a slow growing tumor and unpredictable. He also has had some thickining of the optic nerve but nothing has come of it. Just try to take things one day at a time and see what they say.If you dont feel comfortable with what they are telling you, seek a second opinion. I ''freaked out'' whuch was the wrong thing to do and it sent me into an anxiety frenzy''' of which i am sorry i went into but I think they handled it wrong. You can have thickening of the optic nerve without it being an glioma.Also releating to behavior, My son is so sweet and loving to but..his poeers have trouble relating to him, and he does not have the intuition to know when he is irritating , I do believe most of the things he says or does he cant control. He asks repeative questions, over and over and most of them have just been answered. So i think its a change in the way these children process information. They need alot of patience. And one more thing, I pulled my sonn out of school because of bullying and ,my son talked about wanting to die. They need things to build there self esteem up, they ned to know we love them and tell them they we are proud of them even if its for the little things.I know this is tough,...
Blessings...Dianne

By MyJosie
Posted April 19, 2009 at 9:12 am
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Thanks Diane,
Your so right! Repeats everything over and over, and misses social cues to stop talking and the kids at the last school told her she was bad person, and she now thinks it too! it's so awful. She was almost expelled because she can't keep her hands to herself and we just found out it's because she cannot perceive distance in relation to herself with objects & people, so it always "looks" like shes doing intentionally when she's not.. I cant remember how many times I accused her of pushing her older brother....

By CindyLouWho
Posted April 19, 2009 at 11:10 am
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Optic glioma is fairly common in NF. About 1 in 5 kids will have it, but a much smaller percentage will require chemo to preserve vision. If your daughter's vision is not significantly affected then they will likely just monitor it over time. If chemo is required for your daughter there are plenty of parents both here and on the other BB who can offer you information and reassurances on that process. I can tell you that while chemo is a horrible prospect for any parent to have to consider, the chemo protocal used in NF has far fewer obvious side effects...few children get very sick or lose a significant amount of hair for example.
Optic gliomas have been occasionally known to totally disappear on their own following puberty. Choroidal hamartomas are not all that uncommon in NF, I don't think. Some work suggests that they are not unlike the iris lisch nodules. There are rare reports of more serious choriodal tumors in NF but those are rare.

For the issues at school, my best advice would be to hire a licensed private psychologist to do a full psycho-educational assessment. Do you have insurance now? This can be an expensive prospect but IMHO the private psychologist's report is often much more informative than the assessments the school provides. Many children with learning disabilities experience an incredible amount of frustration. The private psychologist can indicate what tools and interventions your child will require....having a letter from a doctor, which is what this essentially becomes, makes it much more difficult for the school to turn you down for any special requirements. That would be a place to start IMO and also get some guidance on the behavioural issues as well.

Sending good thoughts.

Cindy

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

By CindyLouWho
Posted April 19, 2009 at 3:11 pm
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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 little-laura
Posted April 19, 2009 at 4:00 pm
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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 MyJosie
Posted April 19, 2009 at 4:43 pm
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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 CindyLouWho
Posted April 19, 2009 at 5:12 pm
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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 wildflower
Posted April 20, 2009 at 10:45 am
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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 MyJosie
Posted April 20, 2009 at 4:14 pm
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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 stitcher
Posted April 21, 2009 at 7:16 am
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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 jakeee09
Posted May 3, 2009 at 2:46 pm
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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 dawnjoennikki98
Posted May 4, 2009 at 9:14 am
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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 TexasGal
Posted May 11, 2009 at 2:28 am
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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 MaryT
Posted May 11, 2009 at 5:11 pm
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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 MaryT
Posted May 11, 2009 at 5:35 pm
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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

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