Now what?

[michele]

Today I took Andrew to the Cleveland Clinic again to the children's neurologist Dr. Erenberg. Now Andrew is 5 and his episodes wax and wane based on what i have guessed is exposure to viruses, possibly shots, and strep throat and fevers. We had blood work done last week by an immmunlogist. Everything was negative to strep and elevated titers. Dr. Erenberg says a diagnosis is not as important as knowing now what. How do we treat this? He is emotional, cries easily, hyper, talks excessively, motor delays, short attention, compulsiveness, some obsessiveness. When in an episode blinks, and repeats finger movements, frequents urination, and does leg bends at the knees. His behaviors improve some when he is not symptomatic but are not going away. The Dr. says ADHD diagnosis for school purpose. He is five and should start kindergarten in the fall. How do teachers handle this? How much do you tell them or let them figure out? His preschool teacher seemed to get upset with his attention span and frustrated by his ininterest to her lessons. He is not bad but beats to his own drum! The Dr. says to start school med free and see how he does and reconnect in the fall with him after the teacher gets to know Andrew. How have the others of you with Attention problem kids dealt with this early on in school?

Michele

[Chemar]

Hi Michele

we got a TS dx when my son was 10yo, but his earliest diagnosis was ADD (no H) with Central Auditory Processing Disorder (CAPD) and Sensory Integration Dysfunction (SID)

 

My son was four and a half and just about to start k5

 

I honestly feel that, based on our developmental pediatrician's advice, having him privately tested by an educational psychologist (like Sheila is) and then getting him his IEP (while in private elementary school) followed by a 504 plan when he started public middle school into highschool has been the best move we ever made

 

I believe it is essential to be proactive in letting teachers know what the dx is and that the physicians and you do not want to medicate pharmaceutically, but are instead trying a different form of treatments.

 

Once you get the accommodations your child is legally entitled to at school, it is SO MUCH easier for him and for you, especially when you run up against those teachers who just dont get it when it comes to tics and other issues related to neurological conditions

 

Having documented accommodations built into your child's educational career can spare him and you a lot os misunderstanding, stress and strife with educators.

 

hope that gives a perspective from a mom who has been dealing with this now since my son was four and he is now seventeen.

 

He is a straight A multi-talented student who would likely have been discouraged academically and emotionally looooong ago if it were not for the IEP and the 504 accommodations thruout his school career

[faith]

Hi Michele,

I just wanted to add that as your doctor said, don't get too caught up in the "diagnosis". It is all just a list of criteria that fits into a certain category. Once you know what type of thing you are dealing with it will be a lot easier to handle. When he gets to school, (and possibly on the initial screening they do before kindergarten), they may pick up on certain things and assuredly will advise you on how to proceed. I am glad your doctor agrees to approach this med free until he gets in school and take it from there. Hopefully, once you start implementing some natural health strategies (as I like to call them), that will never become necessary. Believe me, lots of children have these issues you describe, some more, some less, and in my son's school (at least judging by all the moms I talk to) one would think it is the rule rather than the exception!

 

Would you say that right now the ADHD possibility is more prominent than the ticcing? How are the tics going right now? I'm curious if they are practicing for a graduation from pre-school right now and if you think that may factor in?

 

A few months ago I had to deal with having a meeting with teacher and school pyschologist concerning my son's issues (the tics and some procrastination and lollygagging issues). Please take a look at my topics titled "School Info" and "That dreaded meeting" to read of my experience and the wonderful advice of the others on this forum. Hope it helps some.

 

Regards

Faith

[Sydsmom]

I've shared before the successes with my daughter, but for hope purposes, I'll share again. She is now 13. She also was diagnosed at 10 and the bottom of my world dropped. All the what ifs popped into my head, including going so far as "will she find a great guy who understands her and loves her?". I now don't worry about all those at all. She had major ADD, OCD, depression and tics. Her tics wax and wane and right now, hardly notice anything. We have a pool so this summer with the chlorine and increased screens I'm sure her tics will increase. It doesn't throw me for a loop anymore. The big praise is this, she has all B's in major classes and A's in her electives. AND, last week her math teacher said "I've seen an increase in Syd's focus this last semester." Can I just say that I am still marveling that a teacher used the word focus and Sydnie in the same sentence!! We have a 504 for her but rarely need to take advantage of it anymore. Mostly, she is allowed to turn in homework late because she does it, but loses it. I still want it for when she enters high school. What we have done is diet changes and supplements. My husband and I notice an increase in tics when she doesn't take Taurine. I know for some here, Taurine increases the tics but it seems to help Syd. She has also been taking Learner's Edge for 2 1/2 years and a digestive enzyme. She did the MB12 shots for a year and we definitely noticed an increase while taking those. We stopped a little while ago and all seems to be going well, so....The big decrease in ADD came after the diet changes. Decreased sugar dramatically and food dyes. I went overboard at first and it stressed us all out and now have found some balance. Like weekends, I'm more relaxed. It just seems to work for us. Anyway, I like to share our successes because when I read posts from parents who are just starting out, my heart goes out to you all and I remember the stomach and heart aches that I had. I remember sitting in front of the computer, reading all of the info on here and crying because I didn't know where to start. Find a good DAN doctor or natural doctor - that guidance helped me alot. (We went with a DAN doctor in LA. An hour drive, but it was worth it).

 

Lastly, re: school, I never barged into a meeting with teachers or was hard nosed with them. I always took backup and info describing her disablilites and sometimes had to meet a second time until the "got it". I've been lucky that I haven't been met with resistance from anyone at school. So, I hope some of this helps and again, if you, like me sit and cry please know that it can get better. Just keep walking forward with patience. It may take a few years but now being on the other end, it wasn't as long as it sounds.

 

Lisa

[michele]

I've shared before the successes with my daughter, but for hope purposes, I'll share again. She is now 13. She also was diagnosed at 10 and the bottom of my world dropped. All the what ifs popped into my head, including going so far as "will she find a great guy who understands her and loves her?". I now don't worry about all those at all. She had major ADD, OCD, depression and tics. Her tics wax and wane and right now, hardly notice anything. We have a pool so this summer with the chlorine and increased screens I'm sure her tics will increase. It doesn't throw me for a loop anymore. The big praise is this, she has all B's in major classes and A's in her electives. AND, last week her math teacher said "I've seen an increase in Syd's focus this last semester." Can I just say that I am still marveling that a teacher used the word focus and Sydnie in the same sentence!! We have a 504 for her but rarely need to take advantage of it anymore. Mostly, she is allowed to turn in homework late because she does it, but loses it. I still want it for when she enters high school. What we have done is diet changes and supplements. My husband and I notice an increase in tics when she doesn't take Taurine. I know for some here, Taurine increases the tics but it seems to help Syd. She has also been taking Learner's Edge for 2 1/2 years and a digestive enzyme. She did the MB12 shots for a year and we definitely noticed an increase while taking those. We stopped a little while ago and all seems to be going well, so....The big decrease in ADD came after the diet changes. Decreased sugar dramatically and food dyes. I went overboard at first and it stressed us all out and now have found some balance. Like weekends, I'm more relaxed. It just seems to work for us. Anyway, I like to share our successes because when I read posts from parents who are just starting out, my heart goes out to you all and I remember the stomach and heart aches that I had. I remember sitting in front of the computer, reading all of the info on here and crying because I didn't know where to start. Find a good DAN doctor or natural doctor - that guidance helped me alot. (We went with a DAN doctor in LA. An hour drive, but it was worth it).

 

Lastly, re: school, I never barged into a meeting with teachers or was hard nosed with them. I always took backup and info describing her disablilites and sometimes had to meet a second time until the "got it". I've been lucky that I haven't been met with resistance from anyone at school. So, I hope some of this helps and again, if you, like me sit and cry please know that it can get better. Just keep walking forward with patience. It may take a few years but now being on the other end, it wasn't as long as it sounds.

 

Lisa

I feel better after reading the replies. Andrew is really a funny kid. He always makes people laugh. A friend of mine who has an autistic son who has made big changes with behavior modification said ADHD medicines change a little bit of who they are. Andrew is still having some bad days wax cycle. He gets kind of compulsive on things like for instance he wants Spider Man 3 kids meals from Burger King everyday. He goes on and on until it sets you crazy. Then when he got the same Spider man toy he cried for an hour. Little things set him off to a major crying spell. He can really go on and on. He is also obsesed with Web Kindz. He really loves collections and getting them all. Also he obsesses on movies and shows like Harry Potter, TMNT turtles, Power Rangers. He kind of drives us mad. We can't reason with him well. However he can be bribed by a kids meal to be good. Same with McDonalds. He wants the toys. The neurologist didn't seem to believe there is alot of research on the elimination dieting. He said it can be overwhelming. Just to use sence and be aware. I try to avoid dies and sugars with him be causethey add to his hyperness. I know he is smart but does not do as well with traditional methods. He loves computers, and action driven learning not sit and write and color. He drives the teacher crazy because he will not give her a clear indication of what he knows. Hopefully net year he will get a creative teacher who is good with kids who are not always perfect acting. I have two older girls who are quiet little mouses in school. The teachers will be shocked when they get him! As far as tics I am seeing more the finger bending and leg bends repeatidly. I don't know if this is tics as much as compulsive. I am not noticing the linking as much this time. He does shout out some words and can be very loud in tone. Plus he talks back alot and gets mouthy. The Dr. notced him lining up his trucks. He has an order for things. I will try to see the DAN Dr. before school. I have an appointment in Aug.

Thanks,

Michele

[patty]

Sysmom,

 

Thanks for sharing your story with us. It really helps to know that things do get better and never loose hope and have faith. I truely believe that you will find whatever you're searching. It just takes time and lots of observation and trial of error.

 

Patty