The Neurology Visit Today

[Newtothis]

We were very happy our Neurologist had a cancellation today so we moved up our appointment and went to see him. The short story it went ten times better than we were expecting. We were expecting the normal check em and chuck em 15 minute visit but we didn't get that. Instead we got a great doctor that was great at putting our son at ease (he was very hesitant about the visit) and happy to take all the time we needed.

 

We started by giving the doctor a 2 page quick summary of our sons symptoms, how he had progressed the changes we made and the questions we had. We did that for two reasons number 1 so we would not forget all the symptoms and questions we had. Also, so the doctor would not have to waste time to ask us what we knew and also, we just wanted to cut to the chase. After all we were expecting the 15min quickie.

 

Our son was examined then a few test all of which our son enjoyed. Then after he answered all of our questions for an hour and a half. He reassured us it was indeed a tic, not likely a tumor. We will be getting a MRI soon. His big thing was if the tic goes on for more than a yr it is TS and not just transient tics. He told us today it's an eye roll, tomorrow it could be something else. He told us to be more concerned if a vocal tic occurs. He backed up things that we have all read he like how common tics are and how most people don't even notice them.

 

So as for the vitamin and triggers questions well, he did not dismiss them but gave us the medical disclaimer as to how no one is sure about vitamins, TV, Games and how other stress factors affect tics. However he told us that the body is very individual and do what ever we thought would help (mostly us). He went over the vitamins we have been giving him. We had brought them in, he told us we were giving 5 times the amount of A than he needed and over all we were giving him a bit to much. So we are going to give him the multi vitamin only once a day and continue the other vitamin and supplements only once a day instead of twice. He reminded us that that is only 68 lbs and not a full size human, makes sense. We were happy to get guidance for the vitamins, because while there are lots of answers to what works there are not many answers as to how much to give.

 

As for the TV and game triggers, he told us that our son gets relaxed and when someone with tics is relaxed they tic more.(is that true?) As for absence seizures he said not likely, something we had already kind of ruled out too. However, he said we will never know if it could be seizures because EEG's give out to many false positives/negitives to determine Absence seizures.

 

We know diet affects our son, just in the two weeks we have changed his diet he seems better in many ways. He reassured us that our son sees fine when his eyes are rolling around (scary), but it seems true because it does not affect his ability to catch a ball or watch a show. Also He reassured us that the tics are more scary for us than him. He mentioned if his school work drops off because of the tics to let him know. Apparently that is a sign of something more serious.

 

In the end he gave us his personal card and direct phone number if we had any new or other concerns to call him. Wow, I can't tell you the last time a doctor did that. Our son has a follow up visit in October. We are going to see a D.A.N. doctor next to get not just his nutritional needs handled but also our daughters and ours too. We don't want him to feel alone in all this. After all we all know the last things kids want to feel is different from their piers. Thanks again for all the good info on this site -Matt

[kim]

Newtothis,

 

How lucky that you were able to find a Neuro that would spend time at least trying to give you some useful info. Ours suggested that it was time to "part ways," if i was going to mess around with vitamins or info obtained from the internet. We did just that, and have not looked back.

 

He went over the vitamins we have been giving him. We had brought them in, he told us we were giving 5 times the amount of A than he needed and over all we were giving him a bit to much. So we are going to give him the multi vitamin only once a day and continue the other vitamin and supplements only once a day instead of twice. He reminded us that that is only 68 lbs and not a full size human, makes sense. We were happy to get guidance for the vitamins, because while there are lots of answers to what works there are not many answers as to how much to give.

 

Vitamin A is something that you want to be careful with. The vitamins that store in fat ( D E and K are other fat soluable vits), as opposed to water soluable vits can build to toxic levels. You want to have a good idea of how these things work if you are not being guided by a physician with usage.

 

I was thinking that these sites might be helpful to you. I found the Pauling site very useful when trying to get a handle on vits and minerals.

 

Also, Bonnie's (Bontech) site has a chart with her ingredient list and recommendations based on weight. You can get a pretty good idea of how much shoud at least be safe to use, if you do a little math.

 

http://lpi.oregonstate.edu/infocenter/vitamins.html

 

Bontech ingredient list with useage chart according to weight

 

http://www.bonniegr.com/ts-PLUS%20CONTROL.htm

 

HTH's! (hope that helps)

 

BTW..my youngests sons first noticable unusual movement was eye rolling. Like your guy, hee is a sugar craver with a limited diet. My oldest has never had the eye rolls