Focal Seizures?

[QueenofWhispers]

Hi Everyone,

it's EandZ--just in case anyone remembers me and my Ds.

He's started to have focal seizuresthey began yesterdayI saw a paediatric neurologist today who said that my son will now have to follow the epilepsy protocol and he will now be tested intensely in the next two weeks.

what does this mean? what is the best case scenario (that it's all just a twitch and will go away?) what is the worst?

I am currently pregnant with dc#2 and I honestly do not think I can afford to have a second child if Ds's needs continue to grow. please help me, I am absolutely terrified. DH and I aren't really getting along at the moment and morning sickness is making daily life unbearable.

[QueenofWhispers]

does sound like a nightmare.

[Badvoc]

Ds1 has limited carbs, dairy, additives, sugar and more protein.
It's really made a difference to him.

[QueenofWhispers]

I was just mentioning that if we did decide to do the ketogenic diet it wouldn't be too difficult to do for N as he's already quite obsessive with low carbs.

[QueenofWhispers]

N has a six pack; he's been an atkins baby since 2009. he seriously walks up on play dates and says stuff like "i don't do carbs".

[QueenofWhispers]

I was told to look into ketogenic diet...while I was in Texas over the summer there are a few trial studies which are showing improvements in children with ASD while being on the Ketogenic Diet...My uncle told me to have a look at it as well. This is where the Ketogenic Diet came up, the doctor we saw also mentioned looking into it.

I do agree she was quite quick label a diagnosis, but when I asked my uncle he felt she was right.

Regardless, thank you all soo much for helping me, if I was alone I would be a larger mess than I am right now...and I wouldn't be able to think about this critically.

[adoptmama]

DD has focal motor seizures and recently had to go onto medication for it. Prior to that she had an inconclusive EEG while awake, a more informative one whilst sleeping and confirmation via MRI (general anesthetic) of diagnosis. We have been told with this type of early childhood epilepsy there is a very high chance she will out grow it. Good luck.

[DisAstrophe]

I agree it sounds like a very quick diagnosis. The thing about the nhs is that it moves so slow but does have the best Drs.

If the Dr you saw also works at one of the big hospitals in a neurology capacity then it sounds like it is worth listening to their advice. Otherwise you need a second opinion.

A relative of mine nearly died after going private. His doc was a brilliant surgeon but a rubbish diagnostician. Not epilepsy admittedly but goes to show that you need to keep your wits about you when you go private.

[Badvoc]

This is part Of the problem with going private IMHO.
We had a private paed tell us my son had ADHD within 4 minutes of meeting him.
My son does not have ADHD.
He is dyslexic.
Listen to bee mom.
X

[BeeMom]

The ketogenic diet has NOTHING WHATSOEVER to do with ASD - why you might have considered it confounds me.

The ketogenic diet works essentially on the basis of starvation - like on old-order anti-epileptic drugs, therapeutic levels of drugs are determined by blood tests, the ketogenic diet is not considered therapeutic until the child is in moderate-severe ketosis, or clinically starving. This is not a diet that can be "introduced" - it MUST be initiated while inpatient. ALL sources of carbohydrates of any form are withheld until severe ketosis has been achieved, and then the fat and protein based diet starts. The child is not discharged until he or she is in constant ketosis consistent with their treatment plan, their liver has stabilised from the insult from the diet, and their weight loss is stabilising. Many children leave the hospital off the diet is it is that hard on their bodies.

Any neurologist who would recommend that course of action (or frankly, declare that a child is "definitely having seizures" after seeing unusual movements that had been occurring for only one day) after meeting them once and not doing any sort of investigation is foolish at best and negligent at worst. If one suggested it to me before medication trials, I would pick up my belongings and walk out of the office without another word.

I have seen neurologists "fooled" by non-seizure activity many times - I have never seen or heard of one that would make a declaration like that out of hand, for the very real reason that they could be very wrong, and that parents hang on to what they say very tightly when they are stressed and upset.

Bee has been on 11 different medications, and still has dozens of seizures a day. I was told when she was a toddler that while we could consider the ketogenic diet (after her 4th or 5th medication failure) the consultant strongly recommended that we go home and research it well before we jumped into anything. He explained that the formula was vile (it is) and he had never seen success with a child who did not have a gastrostomy tube, as the amount of formula or food required was precise, and it had to be consumed completely. Doing the diet orally, he said, particularly with a child who has a neurological compromise (you stated your DS has ASD) was nigh impossible, as they will resort to pica, food seeking and theft to get what they are craving. If, after all this and our research, we still wanted to consider it, we would need to be referred to a special centre to have it initiated. This is NOT something that is offered out of hand and certainly NOT without medication failures. Even Epilepsy Action UK says this.

We saw a new neuro this year - Bee's regular epileptologist (200 km away) wants her to have someone local to help in a crisis. When we talked with her, after going through the last 7 1/2 years of Bee's meds and seizure history, and the fact that she has a "malignant" epilepsy, she asked if we had considered the ketogenic diet. Before telling her what we had decided 5 years ago, we asked her what her opinion of it was. She felt the way the first neuro did, and Bee has a gastrostomy now. For Bee, primarily because of her impulse control issues related to her ASD, she said she might recommend pursuing vagus nerve/deep brain stimulation before the ketogenic diet. Clearly, it is not the same as trying the GAPS diet or going GFCF.

As for carbs - you would be surprised what there are carbs in. This isn't the Atkins low carb/high protein diet, this is a diet that is primarily fat (true ketogenic diet is 80-90% fat, 10-20% protein and no carbs). When a child is on the diet, even a small amount of carb in a dose of Calpol or Neurofen can kick them off and cause status seizures. Things are calculated to 0.01g.

The ketogenic diet is a medical act, doing it part way achieves nothing. Doing it without medical supervision is dangerous.

[QueenofWhispers]

Ladies, I know how difficult this diet is going to be. I really do. Only reason being is I thought about doing this diet for DS a few years ago...then figured if the GAPS diet didn't help us, this diet wouldn't either. I don't know if it will work for us, not at all, but I don't have a problem with giving it a try. Maybe I'll think about introducing the changes after all the tests are done. We already have locks on the cupboards+fridge because DS is allergic to a great many things...he only eats one carbohydrate anyway and it will not be difficult to cut out. The dog eats raw anyway. (Lucky dog)

[BeeMom]

Sorry about the typos, on my phone.

[BeeMom]

Please PLEASE research the keto diet. It is NOT a first line treatment. If your child has even the smallest hint of impulse control issues, it will be impossible to follow. Children who are on the keto diet and independently mobile have been known to eat food out of the dog's dish or become violent with food seeking behaviour. Fridge and cupboards need to be locked and inaccessible and going "off" the diet suddenly can cause rebound seizures. The actual mechanism by which the diet works is not understood and takes religious adherence, bordering on fanatical, to follow. Even in children who follow it to the letter (immobile and tube fed) fully 1/4 of children are not able to tolerate the diet (liver problems, sky high triglycerides etc), but of the remaining group, 1/3 each improve significantly, improve slightly, or stay the same/deteriorate. The key phrenic diet is considered when a medication failure is declared.

I think you are being taken for a ride, but if you are ready for the ketogenic diet, prepare the entire family for a lifestyle change.

[QueenofWhispers]

you know, cream for breakfast sounds pretty awesome. some almonds and blueberries and yum.

can you eat blueberries on this diet? (I read you can---not sure though)