Should I discontinue Orap before beginning gluten-free diet?

[bcbmommy]

My 11-year-old son has Tourettes/OCD/ADD and is currently on Orap for Tourettes. We were noticing an increase of his tics and OCD behaviors a few months ago, so his Neurologist increased his Orap from 2 mg to 3 or 4 mg. We initially increased to 3, but saw no difference, so moved up to 4. Honestly, I'm wanting to take him off of Orap, but I'm nervous it will get even worse. Yesterday was our first day on a gluten-free diet, but now I'm wondering....should I stop the Orap first? We've also started giving him Natural Calm in the evenings, and epsom salt baths.

I think what I'm noticing more than anything right now is an increase in his OCD behaviors. He has tremendous guilt about things that he shouldn't have guilt about, like looking at a picture of a girl in a bikini, etc. He is constantly telling me he's sorry, constantly saying "I love you, Mom".

I started homeschooling him in November, and to be honest, I have to wonder if that is partially to blame for the increase in symptoms. He's also become very clingy to me.

 

I feel like this has consumed my life, and I'm willing to do anything to make him better. Sometimes, however, I feel like I'm spinning my wheels! I'm supposed to meet with his Pediatrician on Thursday to discuss the medication Intuniv, but there's something that's holding me back from wanting to add another prescription to his life.

 

Thanks for listening.

 

Heather

[gators]

My 11-year-old son has Tourettes/OCD/ADD and is currently on Orap for Tourettes. We were noticing an increase of his tics and OCD behaviors a few months ago, so his Neurologist increased his Orap from 2 mg to 3 or 4 mg. We initially increased to 3, but saw no difference, so moved up to 4. Honestly, I'm wanting to take him off of Orap, but I'm nervous it will get even worse. Yesterday was our first day on a gluten-free diet, but now I'm wondering....should I stop the Orap first? We've also started giving him Natural Calm in the evenings, and epsom salt baths.

I think what I'm noticing more than anything right now is an increase in his OCD behaviors. He has tremendous guilt about things that he shouldn't have guilt about, like looking at a picture of a girl in a bikini, etc. He is constantly telling me he's sorry, constantly saying "I love you, Mom".

I started homeschooling him in November, and to be honest, I have to wonder if that is partially to blame for the increase in symptoms. He's also become very clingy to me.

 

I feel like this has consumed my life, and I'm willing to do anything to make him better. Sometimes, however, I feel like I'm spinning my wheels! I'm supposed to meet with his Pediatrician on Thursday to discuss the medication Intuniv, but there's something that's holding me back from wanting to add another prescription to his life.

 

Thanks for listening.

 

 

 

Heather

 

Hi Heather-

I totally understand your feelings of this consuming your life. I am there too. My son is currently on Topamax- and it started off really great- pretty much took away the tics- but now they are back so we are trying dairy free since he tested positive for a sensitivity to it. I am keeping him on the Topamax bacause like you, I feel it will get worse. We tried Tenex, which is like Intuniv but as I understand it Intuniv stays in your system longer. My doctor just advised us to add Intuniv as well because sometimes the combination of 2 medications seems to work better. I am holding off on the Intuniv until I give the dairy free a chance to work. Have you had your son allergy tested? Hang in there, I know how difficult it is.

 

Leslie

[bcbmommy]

Hi Leslie,

 

I haven't had him tested yet, but I'm going to talk to his doctor about that on Thursday.

 

My daughter is on Topamax for her headaches, but I didn't realize that was also a medication for Tourettes. I'll have to look into that.

 

Thank you!!

 

Heather

[Chemar]

Hello Heather

 

as you are noticing such an increase in OCD, it may be worth looking into PANDAS & PITAND if he has had any history of strep or other infection

 

Is the ORAP helping at all?

 

do be careful when coming off any of those psychiatric drugs as they need to be very carefully tapered to avoid withdrawal reactions

[bcbmommy]

When he first started Orap last year, it helped tremendously. It was like a miracle drug. It doesn't seem to be helping much at all now, however. I've read a little about PANDAS, but I will be honest with you....yes, he has had strep and other infections in the past, but with 3 children I couldn't pinpoint the date of all his illnesses. Should I contact his Pediatrician and have her make a copy of his chart for me? Will they do that?

 

I'm so desperate to get rid of these obsessive thoughts he's having. Yesterday he told me that sometimes he just wants to die.

 

Thank you much!

Heather

[Chemar]

Heather, with that history of strep etc I would definitely try to find a PANDAS literate doctor to check for you as there are specific blood tests etc that need to be done and not many doctors understand PANDAS yet. I am not saying your child does have it, but whenever OCD is a big concern and there is a strep history...well, it is very worth it to check as the treatments for PANDAS are different than for TS, especially if you do not have a clear family history of tics and TS

 

you may want to ask on our PANDAS/PITAND forum about doctors in your area that are knowledgable on PANDAS http://www.latitudes...hp?showforum=17

 

and yes, you can request all medical records from your pediatrician, some charge a fee for the copying, but it is your right to have copies of all medical records

[bcbmommy]

Thank you!! I will check out that forum. There is a history of OCD on my side of the family (myself & possibly my mother), but not sure about Tourettes. Actually, I still battle my OCD and I'm 38. It really seems to be at a high right now, but I've been reading that Wellbutrin (which I am on) can exacerbate that. I'm pregnant, and that is the only drug that is safe for me to take for my depression. I've also wondered if it's increased just because I'm so stressed about my son's issues.