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Born Prematurely. Diagnosed With Developmental Delay With Epilepsy. Suggest Some Proper Treatment

Posted on Fri, 16 Nov 2012

Question: Dear Doctor
My 4 year old son born prematurely ( 32 weeks ) is diagnosed with developmental delay with epilepsy.He is now crawling and stands with support . He is undergoing physiotherapy. He is showing improvement which is very slow. I have visited many doctors in India. One says he needs surgery , while others are opposing. Also while one is recommending for Botulinus toxin another Doctor says not required. Hence I.m confused. I don't know to whom I follow.
Pl. suggest the correct approach to this type of treatment. Also suggest some good hospitals / Doctors / institutes where I should visit.
pl. note that I have already visited NIMHANS/ AIIMS/ doctors in Bangalore/ Applo bhubaneswar.
Thnks & regards
XXXXXXX
Odisha , India

Answered by Dr. Uma Rajah Ananth (2 hours later)

Hi XXXXXXX

Thanks for the query.

I would like some more details like
1. What type of delay he has?
2. Is it spastic cerebral palsy?
Also does he have adductor spasm - as mentioned by the doctor’s examination?
Kindly give more details about his physical examination by doctor or physiotherapist from Nimhans or Aiims? - If you have the clinical examination/notes of the doctor and reports you may upload them using the site's uploader. Alternatively you may mail across the details to my attention (ATTN: Dr. Uma) and send it to YYYY@YYYY

The treatment depends on whether he has generalised spasticity or spasticity of specific muscle groups.

I will be able to understand and comment about your child's condition better if I can have the aforementioned details.

Looking forward to hear from you...

Best Wishes,
Dr Uma

Above answer was peer-reviewed by : Dr. Prasad

Follow up: Dr. Uma Rajah Ananth (5 days later)

KIND Attn. Dr Uma
Thanks for your reply. I'm uploading some of my son,s report for your reference.
> Doctors / therapists are conforming this case is of Cerebral palsy , but not sure about the type.
>Regarding reports of AIIMS/NIMHANS, they are not giving reports to the patient and keeping the file there itself .
> His IQ is normal. Now crawling, able to stand and walk few steps with support.

kindly give u r suggestions for future treatment.

regards
XXXXXXX

Answered by Dr. Uma Rajah Ananth (2 hours later)

Hi XXXXXXX
I appreciate your sending me the scanned reports.
Thanks for the details.
From the reports,I understand that your child is mentally normal and affected in motor development in all the 4 limbs( both upper and both lower limbs )which is called spastic diplegia ( a type of cerebral palsy).
The child has tightness of some muscle groups.
At this stage I do not think botox will have any effect.
As I mentioned earlier botox will relax the muscles temporarily so that more intensive physiotherapy can be done.
Surgery may help the child like release of tendon in the ankle.
But unfortunately this also will not give him 100% cure.
He will have residual defects.
Surgery will help only for that group of muscles and he may need one or more surgeries.
You say that he is now walking with support.
With surgery he may be able to walk little better - like tiptoe walk may improve.
Please remember that wherever you go the general treatment is same!- physiotherapy only.
In my view please stick to the nearest big centre.
Continue physiotherapy.
Learn from them what to do and do 5-6 brief sessions at home.
Surgery can be tried for ankles and see whether there is improvement while remembering it will not bring complete improvement!
By God's grace he is mentally well - give him good stimulation for learning alphabets,talking etc
Continue treatment for fits.
Check on hypothyroidism ( I saw in one notes that he had hypothyroidism)

Finally train him to be self sufficient like eating by himself,washing himself,reaching for objects,etc.
God bless
All the best
Dr Uma

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar