Son had tonic clonic

[Khodges]

Hi--One of my identical twin sons had a tonic clonic seizure on 3/8 and it lasted about 1 minute. ER blood tests showed iron deficient anemic. EEG shows risk for focal and generalized seizures. We are waiting to see child neurologist....Any one have similar experiences or advice?

 

[Nakamova]

Hi Khodges, welcome to CWE!

How old is your son? I've heard of iron deficiency being linked to fever seizures in children, but not necessarily to tonic-clonics.

I hope you can get in to see a pediatric neurologist soon. When you do, it might be helpful to have some written notes covering your son's general health history, any unusual illnesses, symptoms, behaviors, or stresses prior to the seizure. Do know why he has the low-iron? Any dietary problems?

Best,
Nakamova

 

[Khodges]

He is 7. He has been eating paper in the last month and was a premature baby born at 32 weeks, 3. 11 pounds. He has a very healthy diet and him and his brother grow very quickly. Maybe he isn't absorbing iron?

 

[Nakamova]

It may sound odd, but paper-chewing is actually a sign of iron-deficiency anemia! So assuming he's getting plenty of iron and B12 in his diet, it sounds like something is interfering with the metabolism.

 

[donnajane]

Welcome. I am mum to a 26month old who Dr's are still trying to work out what exactly is causing his issues. He often also has low iron so his nureologist has put him on a vitamin supplement with Iron which we think is helping a bit. He is also on meds morning and night.
When he was 18months old they discovered a brain lesion on his putamen but they are not sure if this is related to his condition he nureologist explained it could just be like a feckle on his brain, unusual but they can happen. I do know though that is he is unwell and not eating properly his seizures increase and i am sure it is due to him not getting enough vitamins etc so the vitamin supplement has helped with this.
Hope you can find some answers soon.
Donna

 

[Khodges]

Thanks Donna--what kind of testing have they done on your son?

 

[donnajane]

My little man has had so many tests. 5 EEG's on most of them when they did the test using the flashing lights his eye's rolled up and back a bit but the EEG altered very little, on his last EEG over a year ago now he had a slowing on the back right side of his brain. He has had a brain ultrasound. When they did his first MRI at 18months the metabolic specialists also had blood drawn and he had a Lumbar puncture. He has also had quite a few blood and urine test. Before they worked out he was having seizures he had a chest X Ray due to continual bronchitis and a also an ultrasound of his stomach, due to reflux, this has cleared up but he now has myclonic diaphragmatic seizures which they think may have also been causing his reflux early on. Thank fully we found a brilliant private Neurologist who has kept looking. Even he was a little surprised in finding a brain lesion. His blood tests have been confusing low or border line iron at times, he has a strange blood test reslut which no one really knows if it means anything he had border line zinc but almost none in his red blood cells, his Neurologist and Paed asked around and was told at this stage it was of no clinical significance? Yet everyone has this feeling it might be. He also often has really low temperatures, 34.4c is common and often is dripping in sweat after his afternoon nap, often so much so that we need to change his whole bed. His condition confuses everyone as he can appear at times so normal then at others things are definitely not right. As I always say my main worry is that if it is like they think a chemical imbalance which occurs in his brain what potential damage it could cause. At the moment he "comes" back from his seizures and strange behaviors, being not able to walk etc but I do worry that one day what ever happens may cause permanent damage. I am going to continue my search for an answer until he either outgrows this or they do find an answer, not because I need a name for what is happening but a way to help him with what is happening so that he can reach his maximum potential what ever that will be. The common line we hear from his specialists these days is that they are worried they are missing something.
Ask as many questions as you like. This board is amazing and I have been able to get so much more information on here than from anywhere else. The people on here are amazing and to be able to chat to someone who has been through this or are also going through this is the best thing.

I hope you can find answers quickly.
Donna