Diagnosis in.?? Tourettes confirmed.?? Big super long sigh…………………

I have lots to say about all this tourettes stuff but it will probably just get said over time because too much for one blog post (but I do expect this one to be long because I need to talk this out).

By Friday night, I KNEW Ty had a tic disorder so by the time I got to the Dr.’s office today I was well prepared for what he was going to tell me.?? I had a very emotional weekend but, as I have hinted at in previous posts, I have been working this out in my heart for the last few months and I guess getting this diagnosis today actually brings a lot of things together and makes sense of things that I wasn’t understanding before.?? I also now can see the global picture and realize I have been dealing with this for the last five years in one form or another so I am able to step back from it today and say “Okay – now we know what we are dealing with, have been dealing with, and we’re going to be okay.?? He is going to be okay”.

I hardly even know where to start with this.?? I think the easiest way to summarize would be to write out the conversation I had with the Dr. today as best as I can remember it.?? I’ll probably appreciate having this in the future anyhow.?? Clearly this isn’t a transcript but it will be close enough to what was actually said.?? I’ll include Tori’s stuff too since that was addressed first.

Dr:?? Okay who do you want to talk about first today??? 🙂

Me:?? Tori.?? The conversation about Ty will require my list he hee.?? (I am notorious for my Ty lists).?? What do you think of her skin??? Excema or Vitaligo??? It’s itching her too and she isn’t wanting to wear any clothes.

Dr:?? It’s excema.?? You can still see some pigment so I really don’t think it’s vitaligo but sometimes they can look similar.?? Since she is really itching though I think we need to treat it as excema.?? I am going to prescribe cortizone cream for her.

Me:?? Okay.?? Once we are finished with that, what should the maintenance be?

Dr:?? If the cortizone cream doesn’t get rid of this entirely, we are going to use some oral steroid.?? We are going to get her to quit this itching.

(Side note:?? I will be looking for root causes and what I launder all her stuff with as well as investing in the cream Shauna told me about as well if I can find it).

Me:?? Also do you think I should have her allergy tested because I think she might be allergic to pineapples.?? I gave her some recently and she broke out into an almost instant itching attack and I gave her zyrtec to stop it.

Dr:?? Why should we allergy test her??? You just did!?? :)?? Don’t ever ever give Tori pineapples AGAIN.?? 😉

(Side note 2:?? Our pediatrician is quite abrupt with me and I love him for it.?? You might recall that I interviewed pediatricians when looking for the right one for Ty when Ty was still in the NICU and he is the one I chose and I have never regretted the decision.?? He is very “in your face” with me but not in an unkind manner.?? He speaks my language and we get along very well. 🙂

So then we move on to Ty:

Me:?? I brought Ty in because he is having an issue with throat clearing and grunting.?? I want you to check his throat so we can rule out any throat issues but my gut feeling on this is he has developed a tic.

(He starts looking at his throat as I start explaining my thoughts…)

Me:?? The throat clearing started about a month ago.?? At first I thought he was getting sick and kept waiting for more symptoms but they never came.?? They started increasing pretty dramatically and have a pattern to them.?? They are happening when he is tired, stimulated, anxious, if I am getting after him for something, engaged….all the same times as when he does his head shaking stuff.

Dr:?? I can tell you right now Ty is having tics.?? This is Tourettes Syndrome.?? Don’t get all worked up though about him shouting profanities.?? That is the Hollywood version of Tourettes and is very rare. (2% actually – I already looked that up LOL).

(BTW, he was having tics in the Dr.s office so the Dr. was able to see for himself)

Me:?? Wait a minute lets talk about this more.?? I still want you to check his throat.

Dr:?? I did and he is fine.?? I will do a strep check for you just to rule it out but I can tell you right now Ty has tourettes.?? (Strep test came back negative as we knew it would).

Me:?? Well maybe not actually tourettes but…

Dr:?? Yes tourettes.?? I have diagnosed this many times before and I can tell you it’s tourettes.

Me:?? Well if you did diagnose tourettes then

Dr:?? I just DID!?? Done.?? Already did it.?? Ty has tourettes.?? What are you thinking you want to do about it??? Medicate?

Me:?? Nothing.?? I don’t want to do anything about it.?? I’ll take him to the neurologist and we’ll confirm but I am not going to medicate right now because those medications are nasty business and I want to avoid them if I can.

Dr:?? Okay.?? That might be something we’ll need to talk about later because this probably is going to get worse.?? When he is 9 or 10 it will peak and he will have them through adolescence but he will probably be able to suppress them better on his own by adulthood.?? I can tell when adults have tourettes because if you pay attention you can watch them suppressing.?? They often do things like pausing, looking down, or whatever when they are working on the suppression but they do learn to control them usually in adulthood.

It’s good that we didn’t start him on any drugs for the ADHD though because that can make Tourettes symptoms a lot worse.

Me:?? Yeah – I have read that.?? And since I am homeschooling, I want us to just try to cope right now because I really don’t want to introduce those drugs if I can help it.?? It has been really hard though and I have had several emotional break downs this weekend and he has been crying to.

Dr:?? Why is Ty crying?

Me:?? Because it’s driving him crazy.?? One night last week he was grunting every 7 to 15 seconds for over an hour.?? It was before bed and he was getting tired.?? I was crying in my room listening to him in the other room and next thing I know, he comes in, curls up in my chair and just starts sobbing his heart out.?? He didn’t ever say why but I knew and he knew.?? He was whimpering in his playroom the other day too and I knew it was because he was stuck in a really bad cycle of tics.

(We discussed medication options a little bit for if this gets worse for Ty coping wise).

Me:?? I have some questions about Tourettes.?? From what I have been studying, Tourettes is a genetic disorder.?? That is super random to me because a large percentage of people with Tourettes also have ADHD, OCD, and an autism spectrum disorder.?? You know that Ty has been diagnosed with ADHD, OCD and SPD (which is an autism spectrum disorder) but our discussions have always been that this stems from his intraventricular hemorrages and periventricularleukamalacia (brain bleeds post birth).?? Do you really think it is possible that the entire lineup has been genetic all along and not from those bleeds because I don’t think so.

Dr:?? No.?? I think Tourettes can have more than one source and Ty’s tic behavior does fit the description of Tourettes.

(He was never really clear on this point but basically he agreed with me that even though all research on the web says that Tourettes is genetic…sometimes the neurological causes can stem from brain injury as in Ty’s case).

Me:?? Theoretically Ty could have a predispostion to tourettes genetically.?? I talked to his maternal birthfamily about it and they don’t know of this in their history but we’ll never know about the paternal side.?? Still though, that would be awfully random because we know that brain hemorrhages and PVL often do cause ADHD, OCD, SPD…etc so it sure seems to me that the cause of TS (Tourettes Syndrome) in Ty’s case really does stem from brain injury at birth.

Dr:?? Well mom – you diagnosed this one accurately.?? I am sure Ty does have Tourettes.

Me:?? Okay but another thing to consider is that generally a tourettes diagnosis isn’t made until these tics have been happening for a year and are mixed with both motor and oral tics.

Dr:?? (Smiling at me)?? He has tourettes.

Me:?? Okay then let’s talk about other things that I have seen over the years that I am now questioning as to whether or not they are actually tics.?? Since Ty was under a year old he has been shaking his head back and forth.?? He does it during times of stress, engagement, stimulation, concentration, being tired.?? I have always associated this to sensory seeking behavior.?? I do know though that it would be impossible for him to stop doing this – maybe for a second – but not over the long haul.?? I always thought tics looked jerky in motion so it just never registered as a motor tic.?? Do you think it is?

Dr:?? Yes.?? More than likely that is a tic in Ty’s case.

Me:?? Well other things that I now know either are or can be tics are shirt chewing which he has done on and off since infancy and also jumping, hopping, and flailing during times of excitement, conversation, game playing…etc.?? Do you think these are motor tics?

Dr:?? Yes they probably are.?? His tics are likely going to come and go and change and get worse too.?? (Looks at Ty) Hey Ty do you have to go potty right now?

Ty:?? No

Me:?? Uh…he does that all the time to – holds himself.?? We have been trying to break that habit and nothing is working.

Dr:?? (Giving me that raised eyebrow knowing look)?? That is tic behavior also.

Me:?? It us?!!!?? Oh great!?? What do we do about that one?

Dr:?? Distract him.?? If your in public, just grab his hand and say “Hey Ty let’s take a walk…”?? Do something to get his mind off it.?? Don’t point it out though.?? Don’t comment on any of his tics.?? Completely ignore them.?? If you comment or draw attention you are going to make this a lot worse for him and make him focus on them.?? That will make him more stressed and anxious and make the tics worse.

Me:?? Yep.?? Read that.?? Well it seems that I have probably been managing tourettes since Ty was a baby in one form or another, I just didn’t know that a lot of these things were actually tics.?? Explains a lot though.

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After all that there was nothing really more to say about it other than to make a follow up with his neurologist which we were due for anyhow.?????? I will end today’s post here but I will pick this discussion back up tomorrow because I want to write more about Ty’s symptoms, what I need our circle of influence to do, how we are coping…etc.?? I think what I gave you is PLENTY for today though.

One thing I am going to request of my family though is this.?? Please rent Phoebe in Wonderland.?? I believe you can get it at Blockbuster and it is available on Netlfix both on DVD and to play through the computer or X-box.?? I also saw it on Cox ON Demand this week.?? I’ll reference that more in tomorrow’s post.

On a happy note…we have one joy filled little boy.?? He’ll get through it.?? We’ll get through.?? You and I both will be changed because of this probably in more dramatic ways than Ty even and it will be a blessing in all our lives – one way or the other.?? God promises to make it so and I choose to believe Him.