Genetic spastic diplegia

jennirice

We are struggling to get a proper diagnosis for our 9 year old daughter. she wasnt diagnosed until 6 when walking became an issue (she had met all her milestones growing up) they diagnosed CP spastic diplegia, but we are wondering if there is a genetic link as I too have very tight legs that dont straighten when i walk, very busy nerves and have had hip/ walking issues growing up. My father cannot walk and has a profound limp legs buckiling in. Anyone know of a genetic link through generations? what genetic research/ councellors etc are available to me in Wales/England - Help as her condition is worsening.

imogen37

Hi Jennirice, I suspect you're looking for a link that doesn't exist. While some believe that a genetic predisposition to certain conditions e.g. to low birth weight, early delivery etc make cerebral palsy more likely there doesn't appear to be a direct link. Even if there were, what are you going to do about it? We searched and searched for answers to "why us" when our son Marten was first diagnosed; but nothing came of it and the search only proved a distraction.The problem is here and now, the question is "where now".

The GMFCS (Gross Motor Function Classification System) recognises 9 as being the age at which all cerebral palsy sufferers reach their maximum natural potential. For the more "mild" grades this generally means a plateauing of the condition, while for more moderate or severe grades the degree of natural function actually starts to decrease.

Irrespective of the type or severity of the cerebral palsy, all sufferers have the same problems of weakness in the body core. Given that your daughter has been diagnosed (albeit very late on) as being spastic diplegic she will be experiencing compressional weaknesses in her abdominal area which in turn lead to problems of very tense muscles and in turn problems with the pelvis. These soemtimes result in "scissor" type walking and in more severe cases an inability to walk or difficulty in transferring weight whilst walking. Additionally, problems with sitting can also be experienced. These problems will not go away by themselves and are likely to compound.

Bluntly, your daughter needs her body core strengthened and the sooner the better. The most effective method I've seen (and I've been using it on Marten for more than a year now) is ABR (Advanced Biomechanical Rehabilitation). ABR is used primarily for cerebral palsy but it is also used for other brain injuries, including ABI (Acquired Brain Injury) which can result as a consequence of a whole range of problems later on in life: tumour, accident, meningitis etc.

For more information take a look at www.abrscotland.com where there's a confidential information and advice service. Although it's based in Scotland, ABR is a home based therapy where you are taught to work on your child, so you'd only need to travel three times a year for assessment and further training. The next assessment and training session is next month and there's only a couple of places remaining. When we first started we had to travel to Belgium - but the journey was worth it. Best wishes. X