Hello All, I Am New To All This,so I Have No Idea If I Am Doing This Right, I Will Give It A Try. This Is A Very Long Story And Quite Hard To Beleive. I Have A Daughter Of 27 And Went On To Have Another Daughter 20 Yrs Later After A Sterilisation Reversal Which Was Magic. Sadly Though My Little Girl Has Been Ill For 7 Yrs And Why Nobody Seems To Know. I Had To Undergo An Ammniocenteses Test At 5 Months,it Was Very Stressfull As The Doctor Had Problems Trying To Get It Right After Inserting The Needle In My Tummy 3 Times He Was Ordered To Stop, And I Was Sent Home I Went Back And Had It Done Proprly Next Time . After Giving Birth To My Little Girl (she Was Indused) Things Seemed Fine For A While, She Did Sleep Alot, Then At 4 Wks, She Stopped Breathing Was Rushed To Hospital And Given A Lumbar Puncture, I Was Told She Just Had A Virus,and Was Sent Home Next Morning With No Follow Up Appt. All She Seemed To Do For The Next 2 Yrs Was Sleep, The Day After Her 2nd Birthday She Went To Bed As Normal And I Heard Noices Coming From Her Cot, She Was Gasping For Breath But Unconsious We Tried To Wake Her Whilst Waiting 25 Minuites For The Ambulance, They Eventually Bought Her Round And Rushed Her To Hospital, Again They Said It Was A Virus And Sent Us Home With No Follow Up Appt. My Little Girl Has Not Been The Same Since. She Has Slept Half Her Little Life Away, Had Bowel And Bladder Problems, Cannot Run Skip And Play Like Others Her Age Cannot Read And Write, Falls All The Time, Drops Things All The Time And Cannot Wake Up In The Mornings, Her Memory Is Very Bad Too. After Yrs Of Complaining To The Dr At The Hospital, He Decided To Send Us All To A Psychiatrist, This Broke The Familys Heart, Thank God That The Lady There,laughed About Us Being There, She Said We Were Getting The Run Around And Didnt Want Us Back Again, We Went Back To The G.p To Complain She Too Was Upset For Us And Sent Us To A New Hospital, Whilst Waiting , She Agreed Sophie Needed A Wheelchair Now, And It Was There That The Physio Who Measured Up Sophie For Her Chair, Found That Sophie Had No Reflexes , Her Left Side Had Dropped And Just Hung And She Had Scolliosis Quite Badly, I Was Devastated, We Are Now Awaiting A M.r.i Scan And A Spine Xray Also A Muscle Biopsy And Blood Tests. I Feel That My Little Girls Smptoms Are Those Of Cerebal Palsey, Please Is There Any Body Out There That Can Relate To Any Of These Symptoms, I Know We Cant Diagnos Her, But We Can Give Opinions. Thank You
Hello All, I Am New To All This,so I Have No Idea If I Am Doing This Right, I Will Give It A Try. This Is A Very Long Story And Quite Hard To Beleive. I Have A Daughter Of 27 And Went On To Have Another Daughter 20 Yrs Later After A Sterilisation Reversal Which Was Magic. Sadly Though My Little Girl Has Been Ill For 7 Yrs And Why Nobody Seems To Know. I Had To Undergo An Ammniocenteses Test At 5 Months,it Was Very Stressfull As The Doctor Had Problems Trying To Get It Right After Inserting The Needle In My Tummy 3 Times He Was Ordered To Stop, And I Was Sent Home I Went Back And Had It Done Proprly Next Time . After Giving Birth To My Little Girl (she Was Indused) Things Seemed Fine For A While, She Did Sleep Alot, Then At 4 Wks, She Stopped Breathing Was Rushed To Hospital And Given A Lumbar Puncture, I Was Told She Just Had A Virus,and Was Sent Home Next Morning With No Follow Up Appt. All She Seemed To Do For The Next 2 Yrs Was Sleep, The Day After Her 2nd Birthday She Went To Bed As Normal And I Heard Noices Coming From Her Cot, She Was Gasping For Breath But Unconsious We Tried To Wake Her Whilst Waiting 25 Minuites For The Ambulance, They Eventually Bought Her Round And Rushed Her To Hospital, Again They Said It Was A Virus And Sent Us Home With No Follow Up Appt. My Little Girl Has Not Been The Same Since. She Has Slept Half Her Little Life Away, Had Bowel And Bladder Problems, Cannot Run Skip And Play Like Others Her Age Cannot Read And Write, Falls All The Time, Drops Things All The Time And Cannot Wake Up In The Mornings, Her Memory Is Very Bad Too. After Yrs Of Complaining To The Dr At The Hospital, He Decided To Send Us All To A Psychiatrist, This Broke The Familys Heart, Thank God That The Lady There,laughed About Us Being There, She Said We Were Getting The Run Around And Didnt Want Us Back Again, We Went Back To The G.p To Complain She Too Was Upset For Us And Sent Us To A New Hospital, Whilst Waiting , She Agreed Sophie Needed A Wheelchair Now, And It Was There That The Physio Who Measured Up Sophie For Her Chair, Found That Sophie Had No Reflexes , Her Left Side Had Dropped And Just Hung And She Had Scolliosis Quite Badly, I Was Devastated, We Are Now Awaiting A M.r.i Scan And A Spine Xray Also A Muscle Biopsy And Blood Tests. I Feel That My Little Girls Smptoms Are Those Of Cerebal Palsey, Please Is There Any Body Out There That Can Relate To Any Of These Symptoms, I Know We Cant Diagnos Her, But We Can Give Opinions. Thank You
I do not know the extent of your girl's problems simply because I have never looked at her. You can tell a whole lot from the ways their bodies move and their general posture. I too have a baby with Cerebral Palsy. My daughter's name is Storm. She has a long story too. Your baby sounds to me like she has the problem opposite of my daughter. My daughter has the Spastic CP type. It has a lot of challenges to be a mother of a needy child, but the joys can be just as beautiful as the hard times can be sad. I too, knew somehow there was something wrong with my precious little doll. As an infant she hated to be swaddled. Instead her legs would point stiffly inward and rigidly straight. Nobody would tell me what was wrong with my baby, even though her body would turn a scary color purple and pale white when I bathed her. She screamed bloody murder at night and the only answer the doctors had was "colic". I think that is a fancy term for "definitely something wrong, but I have no idea." I felt so frustrated because I knew there was a reason all the other children could sit, crawl, walk, run, feed themselves, become toilet trained and play with toys. It is so sad to see your little one have wasted the time any other child would have been enjoying learning and making typical mischief and somehow I know I miss that. Do not mistake me for discounting your pain, but this will make you and your family good understanding people, and I only say this because I have been where you have been and I know the emotional rollercoaster you are going through. This makes no light of your pain or mine but sometimes we must go on and be grateful that these beautiful little babies made it. My daughter has had physical therapy and SEIT for the last 2-1/2 years and it can envelope your life but it is well worth it. Yes there are those who have suffered and worried like you and there are little babies out there that have difficulty, and always will in some degree. [ removed - no contact information allowed - it does not show in the profile - not allowed to post other boards - please read the posting rules - thank you. ] Bless you and your Little Sophie, Love, Blueyd1 and Stormy Sky
Last edited by moderator2; 05-12-2004 at 10:02 PM.
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Thank You So Much For My Reply, It Was So Nice Of You...
I Too Am Sorry To Hear About Storm And Her Problems Bless Her. Yes It Is Tough For Us , But The Love And Pleasures That Our Children Give Us Compensates For All.
It Will Be A Matter Of Weeks Now And All Will Be Reveiled, I Will Know Exactly What Wrong With Sophie, The Two Things I Am Most Worried About Is Muscular Dysrophy And Cerebal Palsey.
I Will Keep In Touch With You , And I Will Let You Know The Diagnosis. Once Again Thank You, Take Care, And Luv To Storm (beautiful Name) Lynne
Re: My Sleeping Beauty 
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