EEG and MRI for seizures - Update!!

[RebeccaG]

My gorgeous baby started having seizures last week and was admitted to hospital and put on phenobarbital (sp?) which stopped him from seizuring as they were becoming very frequent. I'm not sure what type of seizure they were but he was lip smacking, staring, his face would go very red and then blue, his breathing becomes very shallow and stops, and his body would be quite still but not rigid. Any ideas?
He had so many blood tests and a lumbar puncture which have all come back clear which is a relief and he never had a temperature. They have also put him on domperidone (sp) and ranitidine (again sp?) as they wonder whether he could have silent reflux which are causing the seizures. He has never been a refluxy or coliccy baby so I'm not sure about this - anyone experience silent reflux and seizures?
I'm so worried about the scans and what they will find - the MRI is on 10th November.
Is there anyone else that has had something similar? I have been an emotional wreck the past few days and never thought anything like this would happen to my baby

 

[Marleysgirl]

Different kind of seizures, but I do know what you might be going through - our little boy Andrew was rushed into hospital when he was 8m because he started having "infantile spasms", which are a body-cramping style of seizure.

They didn't start treatment until after an EEG which confirmed epileptic traces, he was then started on strong steroids (prednisolone). Fortunately he responded well and was discharged a few days later, having not had another episode since starting treatment. He stayed on the steroids for two weeks at high level, then weaned off over two weeks. And again, fortunately, they've never recurred.

(He also had an MRI earlier this summer, but that was for something else!)

It is very distressing watching your baby go through this, and I just hope that your boy continues to respond to the drug combination that he is being given.

 

[RebeccaG]

Thanks for replying and not doing a R&R!! We had to go back in to hospital as he started seizuring again and they were clustering. He is now on a higher dose of phenobarb so I'm hoping that now sorts it. He has the EEG on Monday at 10am - do they give you results straight away? I just want to know what is causing them - it's a nightmare the waiting and not knowing.
That's great that your son's seizures never returned. I'm hoping that Benjamin will grow out of them or that they find it is something that is completely manageable and not something awful.
Thank you again for replying! xxxx

 

[Marleysgirl]

When Andrew had the EEG at the start of the seizures, we didn't get the results "immediately" but we did get them only a couple of hours later - EEG in the morning, Neurologist came round to the ward in the afternoon to give us the result, discuss treatment (as we had a choice) and then prescribe (so the nurses could start administering as soon as poss).

He had two follow-up EEG, and at both of those the Neuro team watched the traces on screen as they took the EEG and could tell us immediately that there were no typical traces for epilepsy.

Good luck for Monday

 

[RaisingMiniMe]

So let me first start by saying I will think of you OFTEN!

When my DD was 3 months old she was going through the same thing! We quickly got the diagnosis of seizures. What I am about to say is not here to scare you or anything bad literally is the WORST case scenario! and is just my story.

Anyways my daughter is now 2 we have had almost 2 years of non stop seizure activity including plenty of hospitalizations and medicines she has failed. If there is one piece of advice and only one I can offer you without a shadow of a doubt that I wish someone would have told me. GO TO A SPECIALIST! Get him off of Phenobarbital yes it might be "slowing" his seizures but it is also "slowing him" my daughter (sorry your story is like filling my heart up. It's like something i wrote two years ago) I remember being scared of the lumbar puncters the MRIS everything! Then genetic testing! OMG Sorry if im overwhelming you! My daughters became so uncontrolled I moved to Mayo Clinic in Minnesota *left everything I have known my whole life*

Sorry... Anyways i know im rambling probably doesn't makes sense but i just I can relate I would be willing to give you my phone number if you private message me! My daughters never had a relation to fevers and there was never a seizure traced in my whole family. Just never give up trying to find a answer and its amazing how now it seems scary and one day it will just be life.

Really BTW im soo serious about messaging me!

 

[RebeccaG]

Thank you for your replies. I'm pleased that we should get the results tomorrow - will hopefully get some answers or reassurance at least.
Why do you say come off phenobarb? What kind of seizures is your daughter having? Yes will definitely hunt down a speicalist if we need to. We are quite lucky that we live fairly close to London where I'm sure there will be good neuro specialists. I'm just really worrying about tomorrow's scan... xx

 

[RaisingMiniMe]

My daughter has seen 7+ specalist just in the nuero field she has Complex partial seizure disorder with Generalized episodes. Phenobarb even though a amazing drug is not made for children and causes stunt in development.
check this link out
https://professionals.epilepsy.com/medications/p_phenobarbital_children.html

 

[RaisingMiniMe]

And the only reason I have such a concern for the drug is how far behind my daughter is, we now have occupational therapist and pyhiscal therapist and shes behind on her speech also. I know short term its fine, but its def not a long term drug.

 

[RebeccaG]

Thanks for info on phenobarb - Will ask consultant about it.

Didn't find anything out today as have to wait for report to be done Going to phone up on wed and should hear then. He was very good and slept through it all! X

 

[Marleysgirl]

Any news today?

 

[Hangin_On_AGS]

Good Luck!!! The kenogetic diet is a really good option for kids too and i know they make a formula that stays in the diets regulations. No drugs for the younger the child the better. raisingminime is very right most anti-epileptic drugs are not made for children under the age of 3-5 and can stunt development. But Regardless I hope you get positive results back and your ds has a happy and healthy life!

 

[RebeccaG]

Yes got the results back from the EEG confirming focal seizures in right side of his brain - have been really upset and not on the internet much. He is having an MRI next Thursday and I pray and pray that it is clear.

 

[Marleysgirl]

Oh hun, that was the kind of news you were hoping not to hear. However, at least you are now on the way to a diagnosis.

https://i306.photobucket.com/albums/nn274/Tigsteroonie/hug.jpg

 

[RebeccaG]

Well we had the MRI yesterday and it has been 3 weeks since his last seizure!! Will be a long 2 week wait for the results of the MRI... Can't stop worrying about it all!!

 

[Marleysgirl]

Three weeks? Wow, that's passed quickly Is he still on any drugs? Andrew was on really strong steroids for two weeks, and then was slowly weaned off them. Are they going to repeat the EEG to see if the traces have gone?

 

[RebeccaG]

He is still on phenobarb but the the dose hasnt been increased and he has put on so much weight! The doctors said that was one way of weaning him off it as the dose would become so small as he grows. We have to wait for our appointment with the consultant and see what he says about the MRI etc. Hopefully we won't have to put him through anymore tests and scans etc. x

 

[Marleysgirl]

I remember the Neuro warning us that Andrew would eat like mad and put on loads of weight with the steroids ... then she looked at him and said "Mind you, that might not be a bad thing!" He was so small for his age. I look back at the photos from the holiday we took during the last week he was on steroids, and he's got chubby cheeks, I think that's the only time he did!

 

[RebeccaG]

Still no seizures! Is 5 weeks today

Had MRI results yesterday. Had to persuade consultants secretary to tell me as consultant had gone home and not called. He is on a course today so won't get to speak to him until Monday!!!
Anyway, he has a 4mmx4mm cyst on caudate nucleus. Don't really know too much about it and google has been hopeless! If anyone knows anything positive I would love to hear from you! x

 

[BabyBoo36]

I don't have any experience, but wanted to say Google is not your friend in cases like this! I nearly drove myself crazy on google when Pud was diagnosed with SB. You'll get more accurate info from your consultant or a neurologist. Hugs to you xx

 

[Marleysgirl]

Ooooh ... they've found something I consider that good news. They've found something, now they can work out how to deal with it. Far worse would have been if they hadn't found anything and he had to undergo more tests.