Underdevloped Brain
 

Information has been so hard to find on this subject. We have a ten year old who started having what appeared to be motor tics. After a long summer of appointments, MRI, EEG... the neurologist said that his left brain was underdeveloped , and that the 'pull' of the right brain against the left was manifesting itself in the form of these 'tics'. He was put on neurontin, originally at 400mg per day. This caused a lot of behavioral issues and worsened his already unstable emotions. We have managed to cut back to 200mg a day to stop the tics and have somewhat manageable side effects.

I have done a lot of research and come up with little to no relative information. He has a lot of check-ups to keep an eye on things, but we have been told it is a 'wait and see' thing- it might develop enough to catch up, and it might not. He has no serious impairments- just a terrible time focusing, really unstable emotionally, his mood changes 'just like that'. Simple homework might get done right away, or it may take hours of crying to get through something that he understood just fine the day before. Supposedly neurontin is the best choice for him, as he is really small for his age and the other medications of choice cause weight loss.

I was curious as to whether anyone has any experience with neurological issues due to underdevelopment, and if there is anything in particular that we should keep an eye on or do to help him 'catch up'- I've been told all kinds of crazy things such as 'He needs to eat lots of greens', etc. Also if anyone has dealt with this, did it get better or stay a long-term issue? I'm sure every case is different and this is where the doctors just want to say 'wait and see'.

Thank you for taking the time to read. Any input is appreciated.

Sometimes doctors use terms they think will help patients understand things.

I'd wonder in this case if your son has demonstrable smaller left lobe or other details. Doctors say things sometimes that really are not meant to be literally taken. One such common comment...is "you will need to be on this drug for life"... which is basically not a true statement for anyone. But they say it that way to send the message that "medical management will be needed from now on". So this doctor's statement to you may have sent an inaccurate impression to YOU. That needs to be clarified IMO.

Kids develop at different rates, and often behavior may lag in some.

I think Dr. Amen, and his Spect analysis would show exactly what you need answered in clearer terms.

http://www.amenclinics.com/meet-dr-amen/

Also a visit to our Tourette's board, may be helpful for you and your son. There are other ways besides drugs to help a developing brain:

http://neurotalk.psychcentral.com/forum25.html

Check out the "sticky" threads at the top of the first page at Tourette's. They are loaded with good information that may be helpful for you.

Thank you. I browsed a lot here, but never thought to look at the Tourette's forum. We had worried about that when all of this first started going on, but were told that it had nothing to do with Tourette's because he only had two non-verbal tics that were explained by the underdevelopment, and not of unknown origin.

We live in a small town and there is only one neurologist in the area who will see children. I haven't had any problems with him, but he's quite an older man and I wonder if he's up-to-date. After the tests were done and behaviors were stabilized, we have been sent back to our regular doctor. The regular dr. wants to see him routinely for a physical and get blood/labwork done every six months. (Nothing abnormal has ever shown up.) Is this the appropriate monitoring?

Many things medical are self limiting... meaning the body heals the problem and it may go away.

With children, the thought is that they may "grow out of it".

In children a Ticcing issue may follow a Strep infection. This is called PANDAs.... and is typically treated with long term antibiotics.

So there could be a trigger for the tics, or not, depending on the situation.

I'll notify one of our experts on this to come talk to you.

I've contacted someone who knows more about this than I do...

She'll be here later.

Can you provide some details until then?

1) did this start suddenly? Was your son slow to develop milestones as a baby?

2) is he on ADHD medication?

3) What is his diet like? Lots of sugar? juices?

4) What exactly are his "tics"?

If I were you I'd get an exact diagnosis from the neurologist ( in medical terminology) . As a parent you are entitled to that.
And be aware that many neuros are not very friendly, or treat people with compassion. When they don't know something they hide that lack. I'd get a copy of the MRI report, for yourself.
Some members here can understand the language and can help you understand it. If your regular doctor has a copy, see if he will give you one.(if you don't want to approach the neuro).

Hi
mrsD let me know of your post.
My son is now in his 20s but has TS, genetic, and diagnosed when he was 10. Your doctor may be correct in ruling out TS as that usually does manifest with both verbal and motor tics.

I must say I have never heard of what your neurologist has described though? and really feel for a young child being on a strong drug like Neurontin??

Does your child have a history of strep infections or has he ever had a tick bite that you are aware of? Conditions triggered by those can manifest with tics.
I have more info if you require it.

Even things like allergies (food and environmental) can trigger tics, and I also know of some people who have developed tics due to misalignment of the TMJ jaw region, photosensitivity and a whole bunch of other factors

I've been thinking about this thread.

You know in the ADHD world and also the autism spectrum disorders, there are comments about brain dominance of right vs left.

This article goes into that:
http://www.leapingfromthebox.com/art...ngstyles2.html

From what I've gathered, over time myself, looking for things to help my son, back when he was young, what I learned was that in children there is a tendency for ADHD kids and some others, to show right brain dominance at younger ages. They may tend to take longer to develop the left hemisphere executive functions, and the age they do this varies from child to child.

I can remember my son one summer at age 12 being much easier to communicate with and interact with. I used to joke that he was finally becoming "human" and more adult. He'd respond to logic more effectively and was almost a different person! (he tended to be emotional and reactive prior to this maturation stage).

So this comment from the neuro about the underdeveloped brain, may reflect this developmental path. And not really an organic defect that would seem to be much more alarming IMO to a parent. Therefore, I think you really should get a copy of that MRI....which would show some organic defect. But if it is essentially normal...I'd question using drugs on him at this point, if he is psychologically at a cusp for a new developmental milestone.

Perhaps seeing a child centered psychologist may be helpful and perhaps even more helpful for you at this time?

Chemar - He hasn't had strep and no tick bites that we know of. Until this point we never had any reason to believe there was anything the matter with him. Now that we've realized something's not right, we can see a lot of signs that could have pointed... really immature developmental-wise, emotional problems, can't focus, etc.

When the tics started we monitored him to try and see if there were any triggers. Tried adding in and taking things away, watching for stressful times, and things like that- to no avail. The tics got to where they occurred every five minutes or so no matter the situation. Now that he's been on medication I only see them appear if he is really frustrated. The doctor seemed to think this was normal.


mrsD- 1.) Development seemed normal, although he had some trouble with speech (stuttering, distorted sounds) but this cleared up taking speech classes at school.

2.) He is not on ADHD medication, or anything besides neurontin

3.) No particular diet. He's never had much of an interest in eating, and doesn't snack much outside of meals. Has some sodas and such, but not everyday. (We tried cutting this out over the summer, didn't seem to make a difference).

4.) The 'tics' we were seeing were sudden darting of the eyes (he was unaware and can't tell when it happens) and an unusual twitch of his head to the side. Haven't seen the head twitch since starting medication, the eye one happens when he's really annoyed.

I wasn't given a copy of the EEG but I do have the images from the MRI... not that I can tell anything from them!

We had a visit with his regular doctor a few days ago, who just wanted to do things like check his height, weight, etc. I'm starting to feel like I couldn't find any information because it isn't out there.

Hi there.

Do yourself a favour before time flies by... organize copies of the report from the EEG and request a copy of the report to accompany the MRI.

I'm sorry if this is a little information overload, but you mentioned stuttering. You say that's cleared up now. My first thought reading your post that it may have been connected to his tics.

I posted a heap of info on the TS forum ages ago regarding Stuttering and Tics. I'll post that here now but I haven't had time tonight to check that all the links are still working. I'll have to do that in my tomorrow as it's late here in Australia now.

EDITED to ADD: I stayed up to check my links. They all work, but as I said, I'm sorry if it's information overload.

Stuttering (from my bookmarks)
http://neurotalk.psychcentral.com/post521996-60.html

My son (adult now) was originally diagnosed with Sydenham's Chorea, which is a movement disorder which sometimes follows Rheumatic Fever, which is caused by Streptococcus bacteria. Later that was replaced by diagnosis of Tourette's Syndrome and some other things including obsessive compulsive behaviours, attention difficulties. Later he was more correctly diagnosed with Asperger's Syndrome (Autism Spectrum) and a tic disorder/TS. The AS diagnosis became primary diagnosis.

He was never developmentally delayed as with regard to childhood milestones. In fact he was advanced developmentally according to the regular guidelines. Crawled 4 months. Walking running 12 months. eek

His first Brain MRI showed a bright spot and also enlarged Virchow-Robin spaces. He's actually adult now and one of the most intelligent people I've ever known. Different in some emotional ways tho

From your first post here
? Can you phone his Neurologist and ask what he meant? That's such unhelpful and unrealistic and downright scary language to give to a parent so concerned about their child and you've gone home not knowing what to think.

Keep posting. Please do call to arrange copies of those reports. You need to keep them yourself. Unfortunately, lots of times we find our selves as mothers having to search and search and take info. back to our children's doctors. I would be asking for an PDD - Autism Screen early just to rule that out.

Did the doctor say exactly what the Neurontin was supposed to help? I've personally not ever heard of using Neurontin to calm tics.

Hang on there. You're not alone!!!

I will read up on that. It didn't occur to me. The stuttering was a problem starting about 3-7 years of age. It was always only at the beginning at the sentence, until they started timed reading passages at school- he would get flustered and get stuck on the words because he knew it was important to hurry.

I was kind of lead to believe the only thing I could get were the MRI photos. This was supposedly the best neurologist in the area- he has been in practice for like 40 years and has great ratings. I feel that any of the times we visited his office, he was just in a hurry and glossed over anything I asked, or spoke to me as if I wouldn't be able to understand. We live in a rural area, and the one we were visiting is one of the few in the area that will see children. I am going to look into other places and see if maybe they'll see him anyway. It depends on whether the insurance will pay again if we can take him somewhere else right now. I'm not sure how that works or if they can use the same MRI pictures or what. Thank you all so much for taking the time to respond. I found a forum that I thought looked helpful because I've not found much information on my own research but I'm starting to believe I just haven't been given enough information... which leads me to wonder are they just not telling me or they don't really know?

There you are. I was just editing my post above.

Here in Australia we can get the full typed reports usually without asking. If in a hospital at the time sometimes they'll try to send you home with just the pics and without the reports but you can ask for them. You own them really. Not sure how it works in the USA.

Hate to say this, but I did it myself. Maybe get a 2nd opinion if that is possible. I did. I got about 4 actually. :) It helped.
Places like the TSA-USA can help you find knowledgeable practitioners in your area if you suspect a tic disorder for example...

Thanks. This is the conclusion I have come to, but unfortunately am having no luck. I have spent most of the day looking up other neurologists and calling around- some won't see patients younger than 16, some have a 5 month waiting list for new patients, some specialize and don't do general neurology... seems like it shouldn't be this hard to take a child to the doctor. I am down to looking into places that are hours away. I hate to drive all that way for someone that I'm not sure will be the right choice.

I know it can be a battle these days. I was just on the phone with a friend and she was very ill with a bladder infection, had a drug reaction, tests, and couldn't get the results, and ended up in an ER of sorts. What a mess. No communication at all!

I think if you get that written report (not just the photos) it will explain alot. Many of us can understand most MRI reports.
I'd do that before getting a new doctor. You might not need one if you have the report. A report showing NOTHING, compared to what the doctor said, would illustrate it was all his opinion in spite of the report. Sometimes doctors do that, and it can make for much confusion!

I just saw your post in the other thread showing your area. I'm in Australia so not familiar with your area but perhaps someone else will read the posts and know of someone.

Even though your child doesn't have an actual TS diagnosis, he is being treated for tics and so I'll post a couple of links. Perhaps you can email the association with your son's history and see if they're able to help you find someone for another opinion or even help you with some more information locally. I'm surprised your son has been prescribed Neuronitin for his tics.


http://tsa-usa.org/aabout_tsa/ausachapters.html

Alabama

• Auburn

• Birmingham

http://tsa-usa.org/aPeople/Parents/parents.html
note: I've removed phone numbers and email addresses. Need to go to links to see them.

Plus:

Ataxia foundation have a list on their website with includes child neurologists.
http://www.ataxia.org/pdf/Neurologis...ted_States.pdf

I agree with mrsD that you should try to get a hold of that MRI report. There are a lot of different reasons that children get a tic or tics.

My concern is that you've been left with such little information and I personally wouldn't be happy having my child in the care of someone who said "that the 'pull' of the right brain against the left was manifesting itself in the form of these 'tics'". Also, most tics do not need to be treated with medications. Some tics can be self-injurious and problematic of course, but simple motor tics tend to wax and wane and change and sometimes it's better to wait and see how things go. Just my opinion of course.

My concern is that you've not really been told why your son has been experiencing some difficulties.

How old is your son?

A transient tic or transient tics are actually quite common in young developing children between the ages of 3 and 6 I think it is... will check that. Most will go away on their own.

EDITED to add:

This is an old paper but it's regarding Secondary causes of Tics. i.e. tics can caused or associated with other conditions. That's why it's really important you get a hold of that MRI report or even go back and take a list of questions with you and have a really good talk with your son's present doctor.

MEJIA, Nicte I; JANKOVIC, Joseph.
Secondary tics and tourettism
Rev. Bras. Psiquiatr.,
São Paulo, v. 27, n. 1, 2005.
http://www.scielo.br/pdf/rbp/v27n1/23707.pdf

He is ten. He had to have the tic for at least a year before they would send him to the neurologist, so it's been awhile. I have an appointment next week to go back to the general doctor to get a referral to a pediatric neurologist. (The one he was going to will see all ages, but I've never seen any other children there.) From there, it is my understanding that when we go to a new one, we will take all of our old information so I need to get a hold of that.

In regards to getting copies of the report before trying to go to a new neuro- I think I'm just going to do both! His medication isn't seeming to help much anymore and if I have to take him back to one, I'd rather try and find one that I feel will work with us and not just want to give him some medication to stop the 'tics', which, as mentioned earlier on the page, weren't harmful to him. It made him look strange, but he wasn't even aware that he was doing it... I wouldn't want him to take the strong medication strictly for appearance reasons, but the neuro made it sound like there were other issues going on 'inside' that the medication would also help?

In any event- I am so thankful that everyone here has been helpful. We are new to this situation and I wasn't sure if my expectations were set too high or if we were getting the normal treatment.

Your expections are not too high.

Please let us know how you get on. You're doing the right thing.

Something I found helpful was having all copies of any tests sent back to the one person. In my case it was a Paediatrician. Anyway, that was helpful because in our case there were many different types of specialists and many different types of tests involved at one point. Maybe talk to your general doctor about doing that when you go next week.

all the best

His doctor put in a referral to a pediatric neurologist at a children's hospital. I'll come back and let everyone know what they decide when we go, because you guys have provided an 'outlet' of sorts, and even that makes me feel a little better.

@ Roxieblue:

Have you been watching CNN lately--- about the 12 girls in one school who have had attacks of stuttering and tic like twitching of the neck and head and arms?

It sounds a bit like what you described here!

http://www.cnn.com/2012/01/19/health...iref=allsearch

Scary stuff there. I don't think it applies to him, because he's stuttered since he learned to talk and the tics just appeared last year. Don't know of anyone else that has the issue.

Roxy

I believe you said "He had a EEG" But you don't have the results.

This is something I'd definately get a copy of what was written.

It sounds like something might have been in this part of the report.
If you didn't see anything in the written part of the MRI.

I would definately get this information before you go. So you can
read what it says.

I am not sure if it will help you, but after getting this information.

Going to the epilepsy room here, might be a good place to get help
on what the EEG means.


My son has epilepsy, and has seizures. Its honestly also possible
that what you describe if its like 5 seconds, or less. Could be a
simple seizure.


Donna:grouphug::hug:

The doctor called in a referral to the children's neuro- they called yesterday and said he has an appointment scheduled in June. When they said it might take awhile, I thought they meant a couple of weeks or so... not 6 months. So now I'm a little unclear on what to do. I was hoping we were going to get this under control. Now apparently we're supposed to wait six more months while he takes medicine that doesn't really work anymore, but makes him crazy? Much as I hate to, I guess I'll have to make another appointment at first neurologist, because we can't wait that long. Maybe try something else out and then see what the other one says when we finally get there. It's just disheartening because I thought we were finally going to be able to take him to another doctor and start fresh.

Ask the referral neurologist's office to put you on the "cancellation" list. Tell them to call you if they get a cancellation.

There are always people cancelling appointments. But you have to be proactive and keep at them about this. I'd call frequently and you may get a much earlier appointment as a result.

Make sure you have all the reports in hand when you go to this appointment. Read them yourself. Write down all questions.

It may be helpful to keep a diary/journal, and even videotape,
episodes. Doctors understand better, when there are details and visual aids.

I understand your frustration and worry. It took me so long to get into see the doctor responsible for setting us in the correct direction. It shouldn't be like this.

Phone the department where the referred Child Neuro works at the children's hospital. Ask to speak with a nurse if you can and explain your concerns and situation, esp. regarding the meds.. Sometimes people break their appointments and you may be able to get in much sooner.

Not sure how far away from you this hospital is though.

I just wanted to come back and update. We finally had the appointment this morning with the pediatric neurologist. We went in expecting to have his tests redone and wanted to find an alternative medication for the neurontin.

He reviewed the tests, asked some questions, and pretty much said that the results all looked normal to him on the EEG and MRI. He said the other neurologist has many years of general experience, but not in the pediatric area- he said that the MRI films of the brain look normal, that they might be a little slower growth than average but that there was nothing wrong on it. BIG change from what we were told previously... that the left portions were underdeveloped and causing these issues. Today we were told to take him off the medication, and that if he is still having the tics it's nothing to be really concerned with. As long as it isn't bothering him, leave it alone. He may outgrow it and may not. The doctor also suspected some anxiety issues and tendencies of OCD, which he seemed to think were all common together.

We are going to get him off the medication, which will hopefully solve a lot of the behavioral issues that arose while he was on it, and see how it goes from there. This neurologist said he didn't think we needed to come back, but were welcome to, and even wrote down his email address and a few suggestions of reading materials. I wish it hadn't taken seven months for us to get this appointment. I am upset that we were so mislead. There is a huge difference in one neurologist telling us that his brain is not developed and may never be, that he will probably always be on the medication, etc., and hearing today that there's really nothing too abnormal going on. The first neuro told us upfront that he didn't usually deal with children, and recommended a pediatric visit as well (just didn't think it would take so long), but it seems to me if he's so inexperienced in reading children's test results, that he'd be a little more wary of giving such a diagnosis. Anyway, we are pleased with the good news and now it's just a watch-and-see thing. Thanks again to everyone who took the time to respond.

wow Roxy, I am have'nt been here to learn about your son before today, but i am so sorry that you had to wait so long to get him to a Pediatric Neurologist, i Guess i should not be discouraged about waiting 3 month for my daughters appointment in sep.

My daughter i almost 9, and has just resently developed a tic, that seams to be getting worse after her pediatric gave her antibiotic for a trace of strep from a blod test.

Sorry to hear that you had to wait as well. We live in a rural area and there aren't many choices of physicians. The pediatric neurologist said we'll just have to wait and see if he outgrows the tics, but since he'd had them over a year, consistently, it seemed unlikely. He started medication last August (which now seems it was unnecessary in the first place), and then we decreased the dose by half in December. When we decreased it, the tics started appearing again for awhile. He had no lapses in taking it, so I guess we don't really know if the tics continued all that time. Now that he's stopped taking it altogether, it's funny but I've barely noticed him doing it at all. I suppose it's just a wait-and-see.

I hope the best for you and your daughter. It's hard not to worry, even if you're told it's harmless. Maybe they will find some answers for you.