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Old 08-28-2005, 08:28 PM   #1
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Join Date: Aug 2005
Location: Sault Ste. Marie, Ontario Canada
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goulais HB User
SO many questions???

I am new at using the message board, so please be patient. I have a little boy who has been diagnosed with spastic cerebral palsy. There is really NO support groups where I am from & the name of mothers with similiar children are so busy that they really don't have to time to talk to me on the phone let alone come see them or visit them.

My son was diagnosed when he was 5 months old by a CT Scan that showed he had a spot of calcification which is what a brain bleed looks like after it's been healed (like getting a scab on a cut). Because he was so young they couldn't really tell me anything else, the only response to any questions I had for them was "we can't tell you that, we don't know, it's a wait & see thing". My son is now 16 months old & he had his MRI done at 15 months (when they are to young, under 1 years old, the brain hasn't grown much to really tell them much) & the neurologist said he was spastic hemiplegia. He has been in Physio Therapy since he was 5 months old. I have SO many questions to ask other parents, but like I said they few names I was given, they were so busy themselves they really didn't have much time. I don't know anyone else who has CP or to get really narrowed down, spastic diplegia. I don't really know what you would consider mild spastic diplegia, etc.. Me & my husband have been totally all alone with this for the past say 11 months & it has been SO lonely & no one else really understands what we're going through. I really feel bad for you, it's a pain so undescribable that seems to never go away. If you or anyone else could share your symptoms, I would SO much appreciate it.

Thank You

 
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Old 08-30-2005, 05:41 PM   #2
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Join Date: May 2005
Location: North of Atlanta, GA
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lauriejacknseth HB User
Re: SO many questions???

Hi goulais!

First let me say, you are not at all alone. There are other parents in your boat and reaching out and finding common bonds will make you feel so much better.

Our son is 26 months and has spactic dipeligia (both legs). You can search on the internet for better definitions. You said your dr said spastic hemipeligia which would mean one side of the body, left or right. Do you know for sure which it is?

Seth didnt have anything on his MRI and had a totally normal gestation and delivery but when he was about 9 monhts old we noticed he could barely sit unassisted and had very low tone in his trunk. Also he kept his toes and feet curled up tight. He has been in therapy since about 10 months and is doing great. He has gross motor, some fine motor and speech delays (mainly articulation issues from the low town in his mouth).. He also had a lot of feeding/gagging issues that he has worked through too.

Since you call it physio therapy can I guess you are in the UK, Canada or Aust?

There are some great sites but we can post them here or our email addresses. Try doing a search on CP and see what you can find. My son does physical, occupational, speech, and hippo (horseback) therapies as well as conductive education (if you're in Europe or canda you should be able to find it). I meet a lot of other moms at therapy sessions. It makes me feel so much better to bond with them.

Not sure if I am helping or not. My husband and I get that lonely feeling too and we are surrounded with other CP parents, loving family and friends..etc. Its just an emotional process.. and they are right. you do have to wait to see how your child will develop and help them all you can.

Don't forget to enjoy your child, delays or not. The therapy and worry can really get you down if you aren't careful.

Hope this helps.
Tell me more about what you are doing so far and what area you live in
Laurie

 
Old 09-11-2005, 07:27 PM   #3
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Join Date: Aug 2005
Location: Sault Ste. Marie, Ontario Canada
Posts: 49
goulais HB User
Re: SO many questions???

Dear Laurie:

Thanks for the reply. I have never been on these message boards & I have NO clue how to work them. My oldest son helped me to add you to my buddy list, but if it didn't work, please add me to your list.

I live in Canada & my son is in physio therapy & we're waiting for Occupational & speech, which is taking FOREVER! He is spastic diplegia. His neurologist said he was spastic Hemiplegia because she was going by the MRI (damage on left side, so worst on his right), but his therapist & me both agreed that he wasn't. His therapist said he is spastic diplegia. I am so glad you relplied, there is absoluetley no one here to ask questions & if you ask ANY doctors, etc..you just get told the same thing, "we don't know, we can't tell you that, it's a wait & see thing". I know this is true, but I would come right out & ask them, what do you think about Scotty from your personal & past experience with children with CP? There answers would always be the same. Anyway, I hope to hear from you soon. Thanks again for the reply!!!

Sherry

 
Old 09-14-2005, 10:30 AM   #4
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Join Date: May 2005
Location: North of Atlanta, GA
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lauriejacknseth HB User
Re: SO many questions???

Hi Sherry,

So you have an older child too? I have two sons also (almost 5 yrs and then SEth is a little over 2yrs old).

My therapist is the only one who would try to give us a feel for things too.. impressions. But I have come to terms with the fact that we really won't know where he will "land" developmentally for a while. Does Scotty bear weight on his legs? Can he pull up or cruise at all? He is 15 monhts now or how old? The guideline I use is the sooner they do it, the better the prognosis BUT, I know lots of CP people don't walk til much later like 7 or even 10 years old. Some kids they know early on whether or not they will ever walk with assistance or independently or at all. I hear "there is no crystal ball" ALL the time. I have sort of stopped asking things but its hard, I know. Each child is so very unique. What helps me is that Seth is in Daycare full time (I work full time) so I see where he is in relation to his peers almost every day. I try my best not to compare him to my older son who was very aggressive developmentally - and it was so long ago.. I sometimes can't recall exactly when he did this or that. I try to put him in his current peer group and do a broad comparison. We know he is going to be behind in gross motor skills.. he just is.. no questoin. I try to keep an eye on areas where he falls into 'normal' range but is still at risk of falling behind becuase he can't run, climb, etc. (ie, he is going to learn and absorb a little differently becuase of that). So for fine motor and speech.. He does have therapy but I feel confident he will catch up to be at or above his peers. We all feel he has no cognivite impariments and he talks a lot but his articulation is pretty bad due the to the low tone in his mouth.

I will try to check back soon. Tell me what all Scotty is doing developmentally so far.

Laurie

Last edited by moderator2; 09-14-2005 at 01:40 PM.

 
Old 09-14-2005, 08:36 PM   #5
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Join Date: Aug 2005
Location: Sault Ste. Marie, Ontario Canada
Posts: 49
goulais HB User
Re: SO many questions???

Laurie:

I am SO GLAD to hear back from you. My oldest son is 14, can you believe it!! I had him when I was 19 years old. We were pretty young, I am 36 years old now & my husband is 39. When talked about it & decided not to have anymore children & Scotty was an oops, which me & my husband had no problem with, but then when all this happen, well you could just imagine.

Ok, Scotty! He is 16 months old. He's been in physio therapy since he was 5 months old, when we first found out. It was a fluke that they actually found the brain damage because they weren't looking for it & his neurologist team did 2 major physical examinations before the CT scan & told us that they weren't to concerned & were pretty positive to say he probably doesn't have any brain damage. The next day when the CT scan came back (the ABSOLUTE WORST day of my life!), ALL of the neurologists were TOTALLY shocked & couldn't believe the results because after his examinations they couldn't believe how strong he was when he grabbed their fingers & pulled himself up & they also couldn't believe how strong & good neck & head control he had. Honestly, Scotty fluked the head neurologist of the team who was a world renowned neurologist. Since last year when Scotty was 5 months old, we only got the "crystal ball" answers too, until last month when they finally did him MRI scan, they finally would go more out onto a limb to give us a little more an answer (which can also be wrong too). His neurologist said he was spastic hemiplegia, I didn't tell her this, but I disagree with her, he isn't worst on one side. When I told his physio therapist the doctor's answer, she agreed with me 100% & said he was definitely spastic diplegia.

What can Scotty do. Well, he rolls ALL OVER the place, he's done that since he was about 6 or 7 months old, but he does roll much better now than he did then. He has a Little Tykes Coupe Car & he sits in it by himself & pushes it all over by himself, but backwards. He has a regular walker from a department store & he goes all over the house in that, frontwards & backwards. He has been able to sit in his highchair without any support since he was about 7 or 8 months old. When you hold him up by the arms, he can take pretty good steps, putting one foot in front of the other, but I do find his feet tend to turn outward (he is getting casted soon for a special pair of casted shoes to keep his feet straight, flat & bent). He can sit up unassisted, but only for a short period of time & he can't get himself into the sitting position. Before I use to have to bring his stroller to the department stores because he couldn't sit in a store buggy, but he can sit in the store buggys fine, without assistance or support for about a month now. He can't crawl, but he now gets on his hands & knees & will bear weight & play with his toys. He will also kneel on his legs & weight bear like that for a while & play with toys, mind you, I have to put him in that position. If I stand him up to a coffee table, he will bear weight on his legs & play with his toys for a while without assistance or support. His worker was just at our house last week & she was playing with him & her report was pretty good cognitively, but again that feeling is ALWAYS in the back on my mind, it's a wait & see thing & you can never be 100% sure!

I was wondering Laurie, did they do an MRI on Seth & if they did what they tell you & how much brain damage was done & where? What does Seth do & when did he start doing it? It was SURE hard on our marriage & I am so VERY surprised our marriage survived through this, SO FAR? How did you guys cope? Scotty SCREAMED day in & day out for over 9 MONTHS, which I ALMOST didn't make it through. He had extreme reflux, but even after they put him on the medication for that, he was STILL VERY VERY irritable. I just got tired of everyone, including doctors saying, "just enjoy him"! Nobody could understand how hard it was to enjoy a screaming baby for so long & to FINALLY get through that & he is STILL ALWAYS fussy & SO irritable. Did Seth cry alot? Also Scotty would NEVER EVER sleep, I still don't understand how he ever grew & thrived. Only up until about 3 months ago would he actually have a nap in the afternoon for a whole hour. It was ABSOLUTE heaven on earth to get a nap like that in the day. I also got tired of family & friends saying "YOU should be sleeping during the day when that baby sleeps"! Again, nobody understood that he would NEVER sleep, ever! Did Seth sleep all right or did he have sleep problems too? The whole time, I had ABSOLUTELY no help from anyone, family or friends, only my husband who I thank God for. My own mother wouldn't even help me, even after we found out the terrible news about the brain damage, STILL no one would come & help me. I felt SO abandoned by friends & family & SO alone. I would NEVER abandon anyone like that, especially a friend or family member. Anyway, that's in the past & things are much better now. He's finally no so irritable & he sleeps way better than before & I am starting to get my strength back, slowly. It's been SUCH a hard, hard road & I think the crying & screaming was worst them the bad news. Honestly Laurie near the end, I told my husband, I would NEVER harm the baby, but I just don't want to live anymore. It killed me inside to hear my baby scream like that for so long & there was NOTHING I could do to make him feel better. It was just awful. I just wanted him to be happy & not in pain. I don't care what any doctor says, I believe if a baby is screaming like, their screaming for a reason if their not hungry or have a dirty diaper. Him screaming like that is what made me travel to Toronto Sick Children's Hospital because no one would listen to me at home & kept telling me he had colic. The screaming had nothing to do with the brain damage & that's why the doctor's were so shocked, because it was the reflux making him scream, he had cronic heartburn!! I KNEW when he was screaming he was in terrible pain & it broke my heart to think he had to suffer like that for SO long!!! He has really been through so much pain!!

Well Laurie, I better get going to bed. It was SURE nice to hear from you & I hope to hear from you again & let me know everything Seth did & when? Take care & talk to you soon. God Bless.

Sherry

 
Old 09-19-2005, 05:22 PM   #6
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buzzy1970 HB User
Wink Re: SO many questions???


Hello!!! I'm just writing to encourage you about your son. Children with CP can be very productive as children and adults. My dear husband and myself both were diagnosed with CP at a young age. He is now 38 and I'm 34. He holds a very respectful position as a systems analyst with a well known company. We both drive. We own a beautiful home and have 2 beautiful boys. So, there can definitely be a rainbow at the end of all the struggles!
Let me know if that helps. I would be glad to answer any questions you may have. Take care.

 
Old 09-20-2005, 07:15 PM   #7
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Join Date: Aug 2005
Location: Sault Ste. Marie, Ontario Canada
Posts: 49
goulais HB User
Re: SO many questions???

Dear Newbie:
Thank you so much for replying. I ALWAYS feel SO awkward asking people questions. When we are at the Children's Hospital with my son, I always see other parents with children with disabilities & I just want to come out & say "what is wrong with your child" so I can talk to someone & maybe ask them some questions, but I am always to scared to in case I really hurt them because they don't want to talk about it & it's to upsetting for them or their child is sometimes more severe & I don't want to seem ungrateful. It just seems like I would seem SO unsensitive. Even now on the computer as I am about to ask you some questions, I feel awkward & this is not even in person face to face!

What kind of CP were you & your husband diagnosed with & did you have any brain damage? My son was diagnosed as spastic diplegia. I just came back from his appointment with his neurologist & she said his brain bleed was grade 3. He has PVL & IVH bleeding (periventricular Lukalaia & Interventrical Hemerraging). We're you hypertonia (stiff & tight muscles) or hypotonia (low muscle tone) as an infant & did you crawl, walk & sit up? Did therapy help as a child & did you have botox, surgeries, etc...? Were you sensitive to noise, light, pain, etc...?

I am sorry to bother you, but I would sure appreciate it if I hear back from you.

Thanks
Sherry

 
Old 09-22-2005, 11:02 PM   #8
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Suecat3 HB User
Re: SO many questions???

Hi, Buzzy1970...

Excuse me for butting in. I don't know any adults with CP, as my son and I moved here to Maine just a year ago. He's 20, has CP, and is very body-conscious (as they are at that age). Do you (or maybe your husband) have any tips on what I can do as a parent to help him feel good about himself as he compares himself to AB guys his age? I've done all the typical things you do to try to instill confidence and pride as he was growing up, and still try to, but Mom's words don't count for as much anymore! His CP is mild, but noticeable, and I sense that he doesn't feel very good about himself sometimes. It breaks my heart. Any advice would be great! Thanks. Sue

 
Old 09-23-2005, 10:04 AM   #9
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Posts: 95
Freestyles HB User
Re: SO many questions???

Hi Suecat

I'm a 24 year old guy with spastic diplegia I use 2 canes to get around. Issues relating to self confidence and body image are ones that come up time and time again on this board... I now realize that these are a major factor with the majority of CPers, most of which I can personally realate to.

The bad part of the deal is that emotional issues that often come with CP don't get a lot of focus by the medical community as a whole and as a result they can spiral into secondary conditions affecting an individual's mental health.

I now realize that it's important to keep a balance of friends who like myself, have some physical limitations as well as friends who are ABs... I'd encourage you and your son to try to find some sports clubs or other organizations that cater to folks with disabilities... From a personal point of view it's very humbling to hear about how other people have overcome life's adversities and become successful... Stories like these keep me striving to overcome every obsticle that I'm faced with... At the same time it's also equally important for PWDs to keep a balance of AB friends so we don't feel isolated from society as a whole.

Growing up, most of my friends were ABs, as a result, I kept striving to be the best AB I could be.. I never really came to grips with my disability... What happens when you have a disability you've never come to terms with? Your self confidence suffers.

The important thing here is to accept yourself for who you are, and be confortable in your own skin... This is the foundation of self esteem.

But how does this happen? It can happen by focusing your efforts on things in life that you CAN change. Sure I can't change the fact that I have CP... This is beyond my control... Focusing any energy on this is like complaining about the weather.

What I can change is my outlook on life dispite my CP... I strive to stay healthy, I work out regularly, I appreciate the simple things that many take for granted. Is it always easy to maintain a positive outlook... No - I say it's something that needs to be learned and practiced.

I'd encourage your son to talk to other adults with CP either on boards like these or in real life.. For me this has been a great place where I can relate to others and vice-versa.. Knowing that you're not the only one is therapeutic in itself.


FS

 
Old 09-24-2005, 01:26 PM   #10
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Suecat3 HB User
Re: SO many questions???

Hi, Freestyles,
Thank you very much for your reply. It was great to hear it from a young guy's perspective, although I realize that issues like these are not age or gender specific. I really appreciate the time and thought you put into your answer, and you gave me some good suggestions as to what to do next.
Take care! Sue

 
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