partial petite mal seizures

My youngest son was dignosed with chiari malformation type 1 at 5 monthes old after battling one thing after another. He had his first decompression surgery at 10 monthes old, because it was causing problems with the flow of CSF. He had his second surgery at 3 years old. But now we are discovering that he is having partial petite mal seizures and he has hearing loss, and a slight lazy eye. The neuro surgerian says that he should not have anymore problems and that she does not need to see him anymore.  What I am wondering is are these starting of new problems associated with the Chiari or these more likely to something new altogether.

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur little guy has had to go thru 2 surgeries already, and u along with him...

We have had a few children that have had seizures b4 surgery and some developed them post op. Surgery of ne kind has risks and the chiari surgery is no different.Plus, it does have a few other conditions that may be going on as well.A few developed epilepsy...

May I ask y ur DS had a 2nd surgery...was it scar tissue?

Was he checked for a syrinx, tethered cord, intra cranial hypertension, sleep apnea.....?

The surgeon does not need to see ur son unless he needs surgery, u need to find a really well informed neurologist to keep tabs on him...if he/she finds nething that needs a NS to review, then u go back to the NS.

The NS treats, the NL dx's....

How old is ur DS now, how long since his last surgery?

  We r happy to have u join us, but not happy for the reasons that bring u.

"selma"

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur little guy has had to go thru 2 surgeries already, and u along with him...

We have had a few children that have had seizures b4 surgery and some developed them post op. Surgery of ne kind has risks and the chiari surgery is no different.Plus, it does have a few other conditions that may be going on as well.A few developed epilepsy...

May I ask y ur DS had a 2nd surgery...was it scar tissue?

Was he checked for a syrinx, tethered cord, intra cranial hypertension, sleep apnea.....?

The surgeon does not need to see ur son unless he needs surgery, u need to find a really well informed neurologist to keep tabs on him...if he/she finds nething that needs a NS to review, then u go back to the NS.

The NS treats, the NL dx's....

How old is ur DS now, how long since his last surgery?

  We r happy to have u join us, but not happy for the reasons that bring u.

"selma"

[motherhen453]

My son is 5 now and his last surgery was due to scar tissue, this was over a year ago. He has not had any imaging since his last decomprtession surgery as far as his spine and head. He has also had surgeries for tether cord, undescended testicles, tonsils and adnoids, as well tubes in and out of his ears. He also is small for his age and hypoglecemic. We have looked for syndromes but have found none. But through all of this he has been awesome. He is always happy and other then when he is tired or not feeling good you could not tell there was anything the matter but in the last six to nine monthes we have discovered he is having partial petite mal with the abdnormal activities being in the right side of the brain which makes sense since his left side is slightly weaker then the right side. We have now discovered that he is enough hearing loss to need aids.  He has just had a neurologist added to his team. I have been fighting and pushing with Doctors and learning as much as I can as to make sure he is getting everything he needs and times it has been very tough especially before we found out that he had chiari. But, now I am kind of loss as to where go from here. Any help I can get would be appreciated. There is so many questions I have, but haven't a clue how to put them out.