Rohan’s Congenital Bilateral Perisylvian Syndrome Blog

One step forward and three steps back

March 23rd, 2008

Things have been pretty difficult for Rohan over the past few weeks.  Unfortunately he was diagnosed with having infantile spasms which is also known as West’s syndrome.  This essentially means that the seizures have changed to the worst type of fits which cause even more brain damage each time he has one and they are very difficult to treat.  We were given the option of a drug (vigabatrin) which has the side effect of him losing his peripheral vision permanently or high dose steroids (prednisalone) which can cause his blood pressure to increase, diabetes, irritability and obesity.  What a choice!  Girish did his research and found that vigabatrin was the drug to be most effective in stopping infantile spasms. Even with the terrible side effect we felt that this was the right choice.  Unfortunately it didn’t work and Rohan’s fits went from 6 a day to 20 a day and lasting up to 15 minutes a time.  He was hospitalized again for 4 days.  Because he was getting so many fits a day they were just seizing his brain and the only time he ever woke up was about 10 seconds before he would have a fit and then once it had finished he would be back to sleep again.  Feeding him became impossible.  This was the most distressed we had been since his diagnosis and it got to the stage where I just didn’t have the strength to be strong for him.  But of course being a mother one needs to find the strength from somewhere and I did.  Rohan was then put on the high dose steroids.  His blood pressure did increase slightly but thankfully he didn’t have any other nasty side effects.  The seizures are now down to 2 a day and only last a few minutes.  This I can live with.  Seeing Rohan in such distress has made me change my views.  Initially when Rohan was diagnosed it was absolutely devastating to think that he may never walk or talk.  Now I don’t care if my son will do any of those things as long as I don’t see him having such horrible seizures/fits.  I can learn to communicate with him, I can carry him or transport him wherever he needs to go but I will never be able to stop his fits for him.  It makes me feel so helpless and it breaks my heart.  I just now pray that these seizures get under control.  I am hoping that one day our life will be somewhat normal again.  We do try to do normal things but sometimes it is difficult with so many appointments with various therapists.  Lily seems to be so strong and adjusts so well to my going into hospital with Rohan so many times.  She must get so tired of my suddenly not being there again but she has been fantastic.  She is learning new words every day and brings us such joy.  She also loves Rohan and likes to rub his head and shake his hand.  I will update this blog on a regular basis and thank you all for reading it.  

Entry Filed under: congenital bilateral perisylvian syndrome,Uncategorized