In a bit of a shock after the EEG....

[lovelyboy]

So we went to have the EEG this morning....shame poor difficult child was very angious....hiperventilating....very stressed!
After a while dr said, ok he had seen enough....so I thought...ok.....
30 min later psychiatrist phone me! She says they found 'something' on the EEG...abnormality in the left posterior temporal lobe! She said something about C waves? Dont really understand.....she says thiscan be because of a seizure earlier or something else! I am now so worried about the 'something else'!!!!!!???? A tumor? OMW!?
So now we are on the waiting list for an appointment with the pead neurologist. The psychiatrist wanted to do a full MRI of the left brain ASAP! But the receptionist at neuro said we must wait for neuro to see difficult child to give a referral to motivate for payment for the MRI...and also because after a full assessment he might want more or specific MRI or maybe not at all!
This mommy suspected epilepsy from difficult child was 9 months old! But NOBODY ever listen to the overprotective, obsessive mother!!!!!
Well at least we are going in a direction now! psychiatrist said, this could be causing the aggressive outbursts!

 

[Ktllc]

Lovely,
I am so glad the medical team is FINALLY investigating the problem.
I understand your worries and my advise to not let your imagination run wild... good in theory but almost impossible in reality.
V is actually scheduled for an EEG as well as his "spacing out" are worrisome to the doctor and might very well be seizures.
Try to find comfort in the fact that whatever IT is, you and the doctor are on IT.

 

[tiredmommy]

(((Hugs))) I can imagine you are terribly worried but ktllc is right in advising you not to let your imagine run wild.

 

[Bunny]

No, they never do listen to the overprotective, obsessive mothers, do they? And it's to the detriment of the child involved.

I know that this sounds scary, and if I were in your shoes I would be freaking out right about now, but ktlc is right. Take a deep breath. Don't let your imagination run wild. difficult child will pick up on your panic and that will not make for a good combination.

 

[TerryJ2]

Well. It's about time.
What a mixed blessing. Scary info that vindicates you, but scary info that means more testing and potential medications and changes.
One step at a time.
Congrats on being a Warrior Mom!

 

[buddy]

OH HONEY!!! As one who has lived the worst possible scenario I quadrupedal the not getting too upset suggestion. Most electrical abnormalities are just that, abnormal electric activity....maybe rising to seizure level. It IS frustrating they let this go on. But many kids with autism have seizures. And they are able to help with them in most cases, and you will cross that bridge when you come to it. I know you would NEVER accept no MRI so dont even worry that the neuro would suggest that. You make it clear that if there ever were to have further issues and he/she missed it you would be coming for them IF they say no mri is necessary. And, do a full mri, they may want a contrast one and there are different levels so it is right, best to have the neuro order it. Q's seizures start on one side and go to another.... so just doing an mri in the area of the electrical issue is not enough... need to check the whole thing out and it gives peace of mind and a baseline for future issues doing this too. Once under the test, do it all.

I don't know if you remember, but I had been referred to adopt Q before they found his brain mass. I only knew he had seizures and some delays. His neuro had refused to do an MRI (foster child, low income for him kind of kid right??) and who was there to advocate for that??? Foster mom tried over and over but she had no authority. Finally the school backed her up and social services caved. They got a new neuro who ordered a CAT scan immediately...(I know now that an MRI would have been better earlier on but for him by that time a CAT scan said it all quickly) Your son has you as an advocate so that kind of miss is not going to happen.

This is frustrating and great news in that strange sense. Can also explain why he suddenly changes moods on you.

Adjacent areas in the superior, posterior and lateral parts of the temporal lobes are involved in high-level auditory processing. In humans this includes speech, for which the left temporal lobe in particular seems to be specialized. Wernicke's area, which spans the region between temporal and parietal lobes, plays a key role (in tandem with Broca's area, which is in the frontal lobe). The functions of the left temporal lobe are not limited to low-level perception but extend to comprehension, naming, verbal memory and other language functions.

Extra electrical activity even if it is just that, (not seizures) can zing those areas around where it is being picked up on the eeg..... so it helps to understand why he may have on and off difficulties, no one can say.. oh he knows better or he can do it if he tries harder... so this is really helpful.

For now Breathe and help difficult child to be calm and not worry. It is great to let him know that the doctors are helping him to feel better though. That was reassuring for Q.

Impossible for YOU to not worry, but keep it in perspective.... odds are on your side.

LOVE AND HUGS, Dee

 

[lovelyboy]

Thanx all!
Buddy...isnt this so interesting! My anilitical side is already thinking.....wonder what is the connection between AS and this!!!!!
Funny....I spoke to his ST today and mentioned that I am sure if I remember correctly the TL has something to do with speech....NO she said.....only the frontal lobes!!!!! Gues who will be sending her some info!!!! OMW....and she just finished her masters degree in AS!
Must say...its going to be difficult for me to keep being strict! I am going all soft and mushy on him now!

 

[buddy]

You mean the speech therapist said that??? undergrad 101 speech and language anatomy classes would teach her differently. I dont know the certification and licensing of your speech therapists there though. In the USA speech/language therapy grew out of teachers who started helping kids with articulation (speech sound) problems. So more than other therapists it is linked to schools and many of us have teaching licenses even though it has long been a medical profession. Maybe in your area there are still speech therapists like that???

No doubt the temporal lobes are critical for language and when people have strokes in that area they may become very frustrated and act out because people sound like they are talking in a mixed up language to them.

You just keep doing what you do best and stick up for your difficult child. Is there any way to do your s/l therapy in a medical-habilitation setting??

 

[lovelyboy]

Buddy.....our speech therapy is a para medical profession!!!!! She is suppose to KNOW anatomy.....dont worry....she will be informed! But how can they help our kids if they dont even understand the impact their area of disability has on functioning...not even talking about speech! I am an Occupational Therapist (OT) and I knew this! Lol...and its years in the past!!!!

 

[buddy]

yeah, not sure how she passed her boards if they have them... really interesting, right? Well as an Occupational Therapist (OT) you have this all under control LOL--like anything is in our control hahahahahaha

 

[rejectedmom]

OK ....breathe....first step taken next step soon to come. You can do this!

I agree with all who said not to panic or let you imagination run. My difficult child has a very abnormal EEG with not a single brainwave pattern within a normal range. The doctor told me that the only time she had ever seen this type of anomolly is in LSD burn outs. (My son was 14 AND NOT USING AT THE TIME). There was no tumor... no mass of any kind.

 

[lovelyboy]

Lol buddy!!!!!I am so glad you believe in my ability to ' have things under control'!!!!
The last few months it felt as if nothing will ever be under control again!!!!
Thanx for all the support!

 

[susiestar]

Breathe, sweetie!!! I have had a couple of scares like that too. It does NO good to get too upset. Heck, one time they told me that J had a heart problem and I needed to get a home defibrillator and learn to use it by the end of the week because she was going to just drop dead. REAL responsible medical advice. Esp because the problem was that they did the test wrong AND read the results wrong. But we PANICKED. For nothing. It seems the hospital that did the test has a habit of doing this - I know of TEN people who were told the same about their kids, only to learn there is NOTHING wrong.

Seizures can explain a LOT of why he is a difficult child. You know what is AWESOME??? We have some really good seizure medications now. Not perfect, and finding the right one can be tricky, but hey, there are CHOICES.

 

[JJJ]

This could actually be good news!! I suspected Tigger had seizures since he was little too and I even got a referall to a pediatrician neuro but testing that time showed nothing. This last time (about 2 years ago) they found "something" on the eeg, that led to treatment with Lamictal and a massively improved Tigger -- happier, better behaved, making academic progress!!!

Better to know what is wrong and be able to treat it, than to keep trying to stay ahead of symptoms with an unknown cause.

 

[SocRocks]

I am glad that they are on to something. Just take it on day at a time maybe they can get you in to see a pedneuro soon. If it is seizures, medications can can 6 months or more because the have to find the right one. Good luck!

 

[lovelyboy]

Thanx! In my heart I actually feel releived, because I always knew we are missing 'something'! But I feel sorry formy son he is so depressed! Asked me why God make people sick, why is his life so difficult, is he going to die, can he make other kids sick, and suicidal thoughts! So I am working very hard to explain and just chill! And trying to load up on positive experiences!
But I do think things can only get better!
I just feel very guilty for the damage we have done to our family relationships, misunderstanding the difficult aggressive behaviour.... Its difficult to manage explosive behavior if its on a neurological level and he cant really help it!

 

[susiestar]

I am sorry he is so upset and the family has been damaged. The really tricky part of this stuff is figuring out what is and what isn't a part of the disability. I hope the docs can help explain things and answer his questions. Does he ever see a therapist? Seizure disorders are a chronic disease and that is a tough thing to handle. Counseling as he goes through the process would be very helpful. A lot of the time our kids don't believe us but will believe a 3rd party (and you can bet I have a roflmao story about that with Wiz, but it is better PM'd), so if you can find a therapist that he connects with who understands the problems of chronic illness it would probably help a LOT. In the US I would send you to the nearest children's hospital to find one, but I don't really know your system.

 

[buddy]

For now, I would explain to him simply how brains work... we all have something called nerves in our brains that make us think, talk, move, feel things and where our happy and sad and other feelings are thought about. For all of us sometimes what makes the nerves work can get a little goofed up. Lots of times it does not make a difference. right now we know there MIGHT be something that is causing a little problem but we dont know yet. If there IS something then we will learn more about it. Most people who have times when the nerves have problems can take medicine to try to help. There are many famous people who have this kind of thing. Your friends won't even know unless you tell them and no one can catch it. Dont make any promises about anything because of course you dont know what it is, but odds are in your favor that he is going to do fine.

When you do know, and if they say it is seizures there are children's sites that can help explain but at this point you dont even know that this is what it is. There is a level of extra electricity that may not be classified as a seizure. may indicate there was a brain injury that happened at birth or later, or a current issue etc... so while mommy and daddy will worry a little until you know, of course difficult child doesn't need to know all the possibilities yet. May be a medication related thing (stims and other medications can lower the seizure threshold).

Maybe let him know as far as you know now he is not "sick". No one will even know if he does not tell them. You just want to check everything out to help him be able to learn and feel his best. There are millions and millions of people who have these kinds of issues.

If needed for future: Neuroscience for Kids site: Neuroscience for Kids - Epilepsy

Q does know some things and his neuro. asks him each and every time if he has any worries or questions. He has asked her to put back his broken brain parts etc. He tells her every little pain. Even if not in her field because she listens and relieves his anxiety. I hope you find a doctor like that.

 

[lovelyboy]

Thanx all...thanx Buddy for the effort of explaining all!

 

[Cass40]

Sending positive thoughts your way I really wish the doctors here would give a scan when asked but no its like pulling teeth to get them to to any kind of scan on kids when theres some serious issues.I asked my grandsons Dr as he has a flat head at the back and a bump on the front left side that has been there over a yr and his behaviours are getting worse but oh no Dr says his heads fine well um hello can you see inside it NO so Im pushing for a scan but have had no luck so far.