are all anti-anxiety meds alike?

[PANDASmcnuggetsw/fry/coke]

Hi everybody,

 

We are newbies here and my daughter is finishing a steriod burst per Dr. K. We have seen some ups and downs on it so far. She keeps asking me if there is something she can take to make this all go away NOW. I know she is suffering with this worry and guilt/OCD thing and I have read on here how if she has PANDAS (Dr K says yes) SSRIs can make things worse. She needs some light at the end of the tunnel and I don't know if there are any safe meds that would help with the burden she is carrying. I know we will not try anything until this burst observation period is over, but after that...is there anything that can help with the mental anguish?

 

Thank you to all who have been so helpful here.

 

Thank you so much,

PANDASmcnuggets w/fry/coke

[peglem]

My daughter has been helped with valium- doesn't do anything about the OCD, but does help with the anxiety. I used to hate giving her this- now I just dislike it. But, when you're in crisis mode, just hanging on until you can get things settled down...one does what one must! I know others have used Klonopin (hope I spelled that right) and I've also had some success w/ valerian root, which is a "natural" OTC supplement w/ anti-anxiolitic properties.

[dut]

Hi - sorry, we've only had experince with the OTC stuff and supplements .... but here it is

 

you've probably read but thought I'd mention it again, many people get some relief with ibuprofen. I didn't use to think it helped us but when I did full daily dosing it did help to take the edge off things. GABA also works for some, it has a similar action to valerian, I believe. Also, our ped recommends curcumin with pepper supplements for the anti-inflammatory properties. The pepper ups the action of the curcumin.

Edited July 21, 2010 by dut

[Worried_Dad]

I totally understand the desperate desire to provide relief for a suffering PANDAS child... but please proceed cautiously with the benzos (anti-anxiety meds: ativan, klonopin, valium). Some kids on here have seen benefit from judicious use, but they were a complete disaster for our son, and Dr. K warned us about ativan in particular for PANDAS children. Here are a few threads you might find useful.

 

http://www.latitudes.org/forums/index.php?showtopic=5830

 

http://www.latitudes.org/forums/index.php?showtopic=7355&view=findpost&p=60186

 

Good luck. I hope you find something that does work well for your ds!

[lfran]

Here is an anti-anxiety medicine you may not have thought of.

 

I was put on atenolol (propanolol) for an irregular heartbeat, and noticed almost immediately that my high level of anxiety went waaay down.

 

I asked the cardiologist about this, and he said that it is known to have an anti-anxiety effect in some people. (I think it is an off-label usage. I did some research about this and found it confirmed).

 

It is a beta-blocker, and considered pretty safe.

 

It might be worth asking about.

[PANDASmcnuggetsw/fry/coke]

Thank you all for your input! I "think" the anxiety is from all the worry and guilt she feels. So if I am understanding her correctly, the Obssesion is with all of these thoughts that "need to be confessed." The only Compulsion I see in any of this is the compuslion to tell me them. But even that does not bring relief as more thoughts pop up, so often she tries to avoid the compulsion of telling me in the hopes that the current ones fade away.

 

Other than that, I see no ritualistic type of repetitve behavior that looks like Compulsions. So I'm wondering if maybe these ant-anxiety meds you all mention may be worth a try. First will try valerian root and go from there.

 

Does her brand of OCD sound familiar to any of you?

 

Thank you again,

PANDASMcNuggets w/fry/coke

[thereishope]

Do you give her Omega 3's? If not, I suggest doing that. It reduces inflammation and eases OCD symptoms. Would you consider having her see a therapist that would maybe do something like art therapy? If she has an outlet ofr the pent up anxiety and emotions, it may help. They may also be able to teach you and her calming techniques for when she feels overwhelmed.

[Mary M]

My dd12 has far more internal OCD than overt compulsions that we can see. As she got worse over the past few months, prior to IVIg, we saw more overt signs of the compulsions and obsessions. I think the intensity of holding it all in just gave way and we saw more, but I still think it's only the tip of the iceburg. Just this morning she complained about feeling all uncomfortable inside because the phone rang twice while she was getting ready. So much of the OCD can be just under the surface.

 

We, too, are working with Dr K and have asked him for support for the debilitating OCD and the intrusive rages. We are 5 weeks post IVIg with Dr K and he has apologized for what we have experienced but would not prescribe anything so that we could see the effects of the IVIg without confounding them with other meds. We have seen results, however, slow and gradual, however transient and intermittent, but improvement is evident. If we had given her psych meds we would not know which was working. That said, PANDAS challenges are fierce and daunting and downright frightening at times to our children and to the rest of the family. But, you need to decide how you are going to proceed. I am assuming you are doing the steroid burst as a measure of future outcomes for IVIg. If so, hang in there, I can speak from experience that that is easier said than done but try to write down what your plans are so you can make healthy decisions for the next few weeks/months.

 

Having entered the IVIg experience drug free we have been able to see its impact more clearly. Has it been painful--YES, do I feel more confident about how we have proceeded-YES.

 

I would certainly try ibuprofen, it does seem to help our daughter, if taken regularly. Valerian also seemed to help, but we had to double the recommended dose (I'm pretty sure peglem recommended that--thank you peglem!).

[LNN]

Mary M - we have the same anniversary week as you. We will be 5 weeks post-Ivig tomorrow. And we have had the same experience. The past two weeks have been particularly stressful. One day last week took us back to a dark place we hadn't seen in almost 18 months. When I mentioned to Dr K (who is not our doctor) at the IOCDF conference, he was of course thrilled (you know what I mean). He also thought it was an excellent sign that my son had a fever during day 2 of IVIG. Of course, he doesn't know our history, so I take this all with a grain of salt. But when you're feeling at the end of your rope, you take what reassurance you can get. We do see glimpses of sunshine. I hang on to that.

 

McNuggets - I'd suggest reading some of the ERP threads, especially old posts by Meg's Mom, and get the book "What to Do When Your Brain Gets Stuck". But if you also feel you need something more, and hesitate about SSRIs, you can look into Inositol. It was once called Vitamin B8 and is a "natural" SSRI. You can PM me if you want specific info (kids are flooding the yard right now - this has to be short - or I'd paste the info right now).

 

Please realize Inositol and any SSRI meds may take several weeks (up to 6) to build up and make significant changes. There is no quick fix, or we'd all be on it!

[PANDASmcnuggetsw/fry/coke]

Thanks to you all again so much for giving me more things to consider. So true... if there WAS a quick fix, everybody would be doing that! But it IS comforting to know that there may be other options to consider and possibly try.

 

On the ibprofen, is there a fixed period of when it is too much? I thought Dr k said not do it, but I don't have those notes in front of me. Do you give it every day for a set length of time or "as needed?"

 

What scares me the most is I don't know WHERE we are in the course of this disease. Dr k says it was probably dormant since she was very young and with the Hepatitus A vaccine, (due to our adoption of twins from Ethiopia) it just triggered it all. May was a nightmare. June was a little better. Now she is up and down with big seperation issues with me and obvious memory and concentration problems, intense worry and guilt. She does not want to go anywhere. I guess my rambling is I'm asking is this going to get a whole lot worse before it gets better? Or are things going to gradually improve with the ABX she is on and possible future IVIG. Million dollar question maybe. But tis wax and wane thing, I don't get it. It's like PANDAS showed up one day and said I'm here to stay. No more normalcy. Where is the wane part?

 

ps Vickie, she has been doing Omega 3s for quite some time, but she is growing so fast, maybe she needs more.

Also read somewhere that symptoms may diminish when a girl get her period for the first time. Anyone blessed to report that?

 

Thanks for listening!

PANDAS McNugettsw/fry/coke

[peglem]

Also read somewhere that symptoms may diminish when a girl get her period for the first time. Anyone blessed to report that?

 

Ahhh, didn't work that way here!

[MomWithOCDSon]

Thank you all for your input! I "think" the anxiety is from all the worry and guilt she feels. So if I am understanding her correctly, the Obssesion is with all of these thoughts that "need to be confessed." The only Compulsion I see in any of this is the compuslion to tell me them. But even that does not bring relief as more thoughts pop up, so often she tries to avoid the compulsion of telling me in the hopes that the current ones fade away.

 

Other than that, I see no ritualistic type of repetitve behavior that looks like Compulsions. So I'm wondering if maybe these ant-anxiety meds you all mention may be worth a try. First will try valerian root and go from there.

 

Does her brand of OCD sound familiar to any of you?

 

Thank you again,

PANDASMcNuggets w/fry/coke

 

McNuggets --

 

Your daughter's OCD sounds as though it is of the "scrupulosity" variety . . . thoughts of having somehow done something immoral, unkind or unfair, a need to confess and obtain reassurance, etc. Our DS13 has some of that form of the behavior, as well, so we're very familiar with it. Given our 7+ years of experience, I can offer the following:

 

1. Cognitive behavioral therapy (CBT) and, more specifically, the form of CBT known as Exposure Response Prevention (ERP) therapy may help your daughter deal with the intrusive thoughts. The OCD Foundation can help you find a good practioner in your area, and as LLM noted, there are other threads here on the forum with regard to ERP.

 

2. Our DS is one PANDAS kid who has been on SSRI's over the years, sometimes to good effect, sometimes to no effect at all, and sometimes to poor effect. We've not had good results at all with benzo's, much as WorriedDad has already noted for you. In terms of the standard SSRI's commonly used for OCD (Luvox, Prozac, Lexapro, Zoloft, etc.), our experience indicates that they CAN be of assistance, but you MUST begin with a very low dose and watch carefully. There are a number of threads here regarding SSRIs and PANDAS kids and the tendency for "activation," basically the opposite effect from what one desires from an SSRI. We initially had a good result with a low dose of Lexapro, which DS took for over 4 years with no negative side effects. More recently, DS was given Luvox, and it wasn't until we decided to try lowering his dose that we realized he was, in fact, being activated by the dose he's originally been given. The other thing to note about SSRIs is that, typically, it takes somewhere between 2 and 6 weeks for them to reach their full efficacy, so your DD will not recognize any immediate relief, even if you luck out and find the right one for her, at the right dosage, the first time out.

 

3. Some here have mentioned ibuprofen. I would also suggest Valerian Root, which is an herbal calming remedy that you can get at nearly any drug or natural health food store. It smells horrible, but it can work wonders for anxious kids. The added advantage, too, is that it can work pretty quickly . . . in our case, within 30 to 45 minutes of dosing.

 

Good luck with it all!