Posted by Kim on June 12, 1999 at 10:03:43
Hi. My son was diagnosed with D.K.A and new onset IDDM in November 98. At that time an EEG was done which showed 'slowing', which the neurologist said was nothing to worry about. Recently, I was told that his brain had stopped growing. At 22 months, his head is 45cm, below the 2 percentile. At the time of his dx of diabetes, he was 14 months. He had previously been diagnosed with faliure to thrive, developmental delay, hypotonia, +1DTR's, asymmetry in the use of upper extremities, subtle dysmorphism, 2 hair whirls, skull is fused and sacial dimple. He does not walk or talk. He had an MRI done while in the hospital at 14 months, that showed "slight prominence of the cerebral sulci and the prepontine cistern". The same neurologist who said the slowing on the EEG was normal, said his MRI was normal. I don't know what any of that means. No one seems concerned with the head growth failure. Crainistinsos (SP) was ruled out. He did have uncontrolled hyperglycemia for months before his dx of IDDM. He was IUGR, eitology unknown, and 4lbs, 4oz a 38 weeks gest. I need to find a neurologist who will look at him and let me know if there is anything I can do to make his brain start to grow again. Is their a growth horomone or something he can take? I have been told that uncontrolled hyperglycemia can lead to significant loss of nueral capacity resulting in retardation to relatively minor attentional problems. What I need to know is does he need to see a neurologist. No one seems concerned about his poor head growth, his delays and his EEG slowing. I am concerned! I don't know what it all means and I need some answers. His hearing is normal as well as vision. He recently began having reflux, an upper GI was done which showed slowed stomach emptying. Could that be autonomic neuropathy? I know this is long and complicated, but any help you could provide would be appreciated. They tell me he has a mental handicap, but they say that they can't tell me the extend of it until he is 3. Why is that the magic age? What if I wait until he is 3 and I am told that if I would have had him checked at 2 they could have done something. Please, any help????? Thank you
Posted by CCF Neuro[P] MD, RPS on June 12, 1999 at 12:48:03
Sorry that your son has so many problems. It is difficult for me to make a comment on what the other neurologist had to say to you concerning your son's condition. Certainly from my standpoint, you son has developmental delay, both motor and cognition. It is unlikely that the DKA that signalled you son had diabetes caused the brain damage, from what it sounds like it was previously suspect to begin with. When a child goes into DKA, during the correction back to normal glucose levels, the brain often will mildly swell. This, combined with the metabolic shock of high glucose and ketone bodies, and low pH will give the EEG reading of slowing. This just means that the brain has been shocked metabolically. From what you are telling me, the MRI was not normal and likely this abnormality has been with your son from before birth (he was IUGR).
I would suggest that you seek out a good pediatric neurologist. Your son needs early intervention to maximize his potential. Your pediatric neurologist can coordinate all this. At least in Ohio, by law you and your son are entitled to this type of care.
Whether you son's brain has stopped growing. What was the head circumference at birth, 6 months of age, 1 year of age etc. It probably is that your son head (brain) has started off small and continued to be small but is growing. The measurement at birth is average of 34 cm, so your son's head size has grown since birth. The "rate" of growth is important and it sounds like your son's rate is somewhat slow. There is little one can do about brain growth except to have proper nutrition. We do not know too much about the regulation of neuronal and non-neuronal cells in the brain.
Again, seek out a pediatric neurologist sooner than later. The earlier the intervention the better.
CCF Neuro[P] MD
Posted by Kim on June 12, 1999 at 15:01:00
Thank you for your reply. The hyperglycemia was over a period of 10 months at least. I have a geneticist looking into a chormosome mutation of Insulin Promoter Factor 1. Which produces small for dates, IUGR and early onset diabetes babies. Which is why I question the nutrition his brain and nervous system received during those very important months. He has caught up--into the curve instead of below it--since he has been on insulin. His head has not though. At birth it was 31cm, at 6 months it was 39cm, at 12 months it was 42.5cm at 14 months it was 44cm and at 22months it is 45cm. At birth it was at or below the 10 percentile and now it is below the 2nd percentile. Could you please tell me what "slight prominence of the cerebral sulci and the prepontine cistern" is? That is from the MRI when he was in for DKA. His Ac1 test was 17.1 which is a test to see how well ones sugar is under control for a period of 3 to 4 months. The doc at the hospital said that with a reading that high he had diabetes at least 3 to 6 months probably longer. He never had a time where he did not soak every diaper and his clothes and drink bottle after bottle and eat and eat. He just did not thrive. Once his pancreas completely stopped making insulin he developed DKA. He was producing enough to survive but not to thrive which is why I am questioning damage do an infants brain and development. Any further information you could provide would be very helpful along with a name of a good ped neuro in Florida. I don't care where, I will do whatever I have to to provide my son every chance of a normal life. Thanks.
Posted by .. on June 13, 1999 at 00:37:12
Please also look into early intervention therapy in your area...they may be able to offer some training to you and your family in how to help your child develop those delayed skills, as well as working directly with him. I hope things get better for you all.
Posted by CCF Neuro[P] MD, RPS on June 13, 1999 at 11:56:05
thanks for the comment.
CCF Neuro MD
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