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kalise

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my son lives with moyamoya.

Posts: 36
westernaustralia, Australia, australia, 21, 203, WA, Western_Australia
Gender: female

Disheartened
Aug 14^th, 2006 at 6:05am

I know Im not a "regular" on this site, but I have always come here when the chips are down, to read posts or to get some advice, or even just to feel connected to other people who really know what I go through.

I put up a post last week, because I have real concerns about my Son at the moment, and it is really disheartening to know that out of the 24 people that actually read it, NOT ONE responded. Its a really lonely feeling when you cant even get some support from a "support group."

I mean no disrespect to anybody, I think all of you are amazing, weather you have mm, or have a family member with mm.
Maybe im just over sensitive at the moment, its just really upsetting that nobody could offer any advice, that nobody could be bothered to reply.
Kalise

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Islandentity

Experienced Poster

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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male

Re: Disheartened
Reply #1 - Aug 14^th, 2006 at 8:39am

Kalise,
I was one that read your last post. I apoloize for not replying to it. It is just my son has not yet had surgery, so consquently I donot know how to respond to your sons situation.. Robert wheres a helmet like any other 10 year old riding a bike or scooter,he also wears one when playing baseball (batting and in the feild) however I am reminded of what one of Roberts early Dr.s told us......Life goes one, let them live their lives.....because the alternative is to wrap them in cotton
Mike

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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin

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mg12061

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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: Disheartened
Reply #2 - Aug 14^th, 2006 at 8:39am

Kalise,I'm so so sorry.Personaly I never have enough time(especially in the summer with the kids home) to always reply when I read a message.So what happens is I read it with all good intentions of comeing back later to reply,but I tend to forget and just read the top few on the page.I know how you must feel not getting the support you came for.I also know that some of our family ahve been lucky enough to be traveling to Orlando for the reunion. IN answer to your question I haven't really heard of other children needing helmets.Kathleen never wore one,and I don't believe her surgeon Dr. Scott has ever prescribed this to other kids.I'm not a Doc but this is our experience.Sorry I didn't get this so you sooner.I know how high your anxiety can be right now,and how alone you must already feel and then to feel even more alone when looking for support.I hope your feeling a bit better.I probably should ahve answered on the original post to bump it up,maybe you can add to it and bump it up so it doesn't get "lost".And please ask away if you ahve any other questions.I find some weeks are slower here than others so don't be afriad to post up agian if it doesn't get answered.((((((HUGS)))))))(I hope Ididn't ramble on too much LOL but it's early and I'm not quite awake yet)
Mary Grace

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Mar

Ex Member

Re: Disheartened
Reply #3 - Aug 14^th, 2006 at 1:26pm

Hi Kalise,

I’m sorry you feel as though you didn’t get the support you needed. I just have to say that these are a wonderful group people that simply want to help others in their MM journey, and you don’t have to be a "regular" to get their support or a response. They are here with help or support the minute they feel they have a comment or suggestion that may be of some help to anyone.

I just feel that, as an Internet support group, it’s sometimes hard to comment on certain issues when you don’t know the whole story and all the specifics, and in this case, for me, I didn’t comment simply because I didn’t want to say that I’ve never heard of anyone wearing a helmet outdoors after their MM surgery, but perhaps in your particular case the doctors did suggest that Mitchell wear it, so I didn’t feel comfortable commenting after you said you felt uneasy about him not wearing it. A mother makes some calls because they just know what’s best, so it makes it hard for us to say otherwise. Ya know what I mean?

Please feel free to come here and vent or ask questions anytime, and if we can help in any way, I know we’d be here for you!

Mar

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moyamoi

Ex Member

Re: Disheartened
Reply #4 - Aug 14^th, 2006 at 7:14pm

Hi Kalise,
I also read your post and did not comment because I did not want to say yes it's fine not to wear a helmet, when it might not be as every case is so totally different. I also have never heard of someone wearing a helmet, as my neurosurgeon originally said that he would be weary of anything pressing against the head like sunglasses or glasses. I occasionally wear a motorbike helmet but again, I have to be aware of it pressing too hard against my head, so you see this is totally opposite to your son's situation. He DOES wear a helmet all the time. I only comment on subjects where I am fairly sure I know what I am talking about (through my own experience on what I am going through etc) and I was not confident to comment on your situation. Don't take it to heart - I would rather get no comments on a post than get comments that are ill informed and wrong perhaps, and this is where this board is great - I know enough about this board now that if you need help with something there will be someone out there who will help you, and if this doesn't happen it is because they probably feel just like I have stated - don't want to comment on something they dont feel confident about. The other advice to you is if my memory serves me correctly you also live in Perth WA is to talk to a different neurologist and/or neurosurgeon for a second opinion. Both of my specialists are based at the Mount Hospital and I will give you their details if you require.
Cheers Moira

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janicetedd Experienced Poster Offline Sister - Patty w mm Posts: 221 Waterford, MI Gender:	Re: Disheartened Reply #5 - Aug 14^th, 2006 at 7:35pm Sorry that I did not respond, but read your post. My sister has mm and her case is so different. I hope that you continue with this board - there are many wonderful people. Janice
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LA

Senior Poster

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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female

Re: Disheartened
Reply #6 - Aug 16^th, 2006 at 2:34pm

Hi~

Thank you for being pro-active and posting your feelings of 'aloneness' even on the Board. It's a valid feeling. A valid communication.

I hope I've learned, from your post, to be more active on the sites I read. Just to even touch down with a 'Hello I hear you' note.

So, Hello I hear you and thank you for bringing this matter to light.

Hope too that your question about wearing a helmet is resolved.

Love,
Linda (LA)

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Linda (LA)

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pattil647

Junior Poster

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Mom of Moyamoya Survivor

Posts: 70
Langhorne, USA, usa, 484, 119, PA, Pennsylvania
Gender: female

Re: Disheartened
Reply #7 - Aug 29^th, 2006 at 12:08am

Please don't be disheartened. I just read your original post a few minutes ago, and I didn't respond either. The reason I didn't respond is that I do not know how old your son is or why he his wearing a helmet. (Plus it's almost midnight, and I'm actually too tired to think clearly)

What I can tell you is that I have a 12-year old son with MoyaMoya, and I worry about him all the time too. He was never told to wear a helmet, but his neurologist at CHOP (Children's Hospital of Philadelphia) said that he can't play contact sports or ride roller coasters. Dr Scott in Boston agrees that my son should not play contact sports, but he thinks that we should let my son live as 'normal' a life as possible. Dr Scott's version of 'normal' includes letting my son ride roller coasters if he wants to. I actually compromise on the roller coaster thing -- I let him go on roller coasters - but I don't let him go on any upside down roller coasters!

Don't feel bad - my posts don't usually get replies either -- but I don't let that get me down - especially since my visits here are few and far between. If you read the posts on these boards, you will see that the people here are very loving and caring. I don't believe any of them are purposely trying to hurt anyone's feelings. Dealing with the fact that your child has MoyaMoya is very difficult. Sometimes that stress will make you sensitive and sometimes it won't. Keep posting, and I'm sure you'll get the support you need -- just be patient. God bless you and yours....

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joesmom

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MY SON HAS MM

Posts: 21
BELFAST, United_Kingdom, europe, 149, 190
Gender: male

Re: Disheartened
Reply #8 - Aug 29^th, 2006 at 5:13am

Hi i'm not a regular visitor so much now either, but i felt i had to write back. My son Joe had surgery on both sides in May 2004 when he was 7. He is great now and leads a full life, plays football, and rides rollercoasters. The only time he wears a helmet is when he is riding his bike.
His doctor in Great Ormond Street Hospital in London, advised us to let him get on with his life, which we do. I'm not saying its easy, our hearts are in our mouths sometimes but hes happy and healthy at the minute and at the end of the day thats all that matters

Michele

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Kath41

Experienced Poster

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SOOOO happy to have found
this website for support

Posts: 156
Kansas City, USA, usa, 297, 159, MO, Missouri
Gender: female

Re: Disheartened
Reply #9 - Aug 29^th, 2006 at 10:10am

I too am guilty of reading the post and not responding but only because I am the one with MM and I am 43 years old and I was never told about wearing helmets so I did not feel I had the knowledge or the correct advice to offer....I truly am sorry if we appeared as unsupportive, please know that we are here for you and that when we feel we can help we will in any way possible...dont give up on us because it really does help to have this site, if for nothing else you can vent your frustrations, anger and fears and that is helpful in itself!!
Your Friend
Kathleen

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kalise

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my son lives with moyamoya.

Posts: 36
westernaustralia, Australia, australia, 21, 203, WA, Western_Australia
Gender: female

Re: Disheartened
Reply #10 - Sep 2^nd, 2006 at 11:56pm

I just want to say thankyou to everybody that replied to both of my posts. I would also like to apologise, if i came across nasty in any way. At the time I was stressing out, and I felt like there was nowhere for me to turn, so please accept my apologies, as i said in my previous post i think everybody on this site is amazing.

I still havent let mitchell stop wearing his helmet outdoors at school, BUT... i think what i will do, is talk to his teachers and just ask that he wears it when playing football etc,...anywhere theres a "high" risk of the side of his head getting knocked.
Thankyou all once again.
Kalise

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