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Steroid burst. I am ready to cave.


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I am on day 6 of steroid burst. She is up til 4am every nigh with severe OCD. I added the Bactrim in 2 days ago. still not helping. Would u still hang in there. She is getting quite aggressive too. Would you still finish the burst? What if this does not work? ...and IVIG does not work? Man, is this scary. She has been gargling in the bathrooom for and hour. It seems the Bactrim is activationg for her too. Comment and help PLEASE. I am so tired.

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Wilma - I know that this is hard but I want to encourage you to stay the course. Stay the course and see what happens. What you are experiencing is not unusual. You just have to tell yourself that you are in for a rough couple weeks and accept it. Tell yourself that you are not going to worry about what is happening for 30 days. So for 30 days just deal with what is in front of you. If at the end of the 30 days you do not see great improvement, then you can decide if you want to worry about it.

 

You don't want to miss out on the great pleasure that steroids have the possibility of offering your daughter and family. Ride out the storm with the anticipation of seeing the sunset.

 

Realize for the next two weeks or so you will not sleep and your life will be miserable. Accept it and then let it go. It is amazing what the brain can do. It is hard to watch a child suffer so much. Just be there as a source of comfort. Try to hold her or just tell her that everything is going to be alright. Tell her this is just temporary. Keep telling her throughout the day in a calm voice that she is going to be alright. Let your daughter see you relaxing. The more relaxed you are about the situation, the more relaxed she is going to be.

 

Be calm and ride out this storm. There will be only two outcome possibilities - she will either do great and you will be thrilled that you stuck with the program or she will not improve but the craziness that you are currently seeing will go away. You will have your answer as to whether or not steroids work in about 30 days. You are doing this for the answer to a question. You can do this.

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How many more days do you have? We never did a "burst", we did month-long tapers, and in those we did not see the full results until towards the end, but the trend was always upwards, not down. The results were short-lived, though, because in the end my son did have Lyme and Co-infections.

So for one thing, I would say stay the course so you can give it a fair chance and see (otherwise you will always wonder "what if I had stuck it to the end"), but on the other, if you are seeing things spiraling down, I would follow my mommy gut. From your description, it would seem like the steroids have "unleashed the monster". I think steroids worked for us the first time because he had been on abxs a good long time already, and things were "stable" when we started the taper. But if whatever infection is making her react is not under control, then maybe this is not the time to do steroids. This is just my opinion based on what we've gone through, others might have different views.

Another thing to look at is the environment. Any chance someone in the house might have strep? Has anything else changed?

Please remind me what your daughter's original "trigger" was, I'm sorry I can't keep everyone's stories straight!

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PhillyPa has good advice for you-- stick it out.

either it works or it will not-- but you will not know unless you try.

My daughter is as sick as yours-- I know how it is going for you now.

hang in there wilma, I am so sorry for her and you. praying for you both

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What do you do when the ocd interferes w/ sleep? This is very common w/ my daughter. I will tell her that ________ is getting in the way of her doing what she needs to do and take away whatever it is she is stuck on. A huge meltdown ensues, but when it is over she can sleep. I know this will not work for obsessive thoughts, but if she is stuck on objects and I can just accept that we will get through the meltdown (severe aggression)...I can get her to sleep. Sleep always seems to improve overall health.

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I agree with PhillyPA completely...especially the part about evaluating her improvement/backslide in in 30 days -- or even on a weekly basis...day by day is not going to do much except drive you crazy.

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It's just that I see her OCD getting worse and sleep getting worse. I have seen this over and over with meds., I usually keep giving them and it never gets better. I guess I will still keep going...You would still keep going even if she is pulling all nighters every night?

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Wilma, I too suggest you stick with it so that you will know in the end if helped or did not. Going through it is the only way to know. But, you know your child and yourself better than anyone so only you can decide what is too much for her and too much for you. I think it will be important for you to speak with the Dr. tomorrow so that he knows how the weekend went and how severe her symptoms are. He needs to know how severe her symptoms are right now. Maybe there will be something else he can suggest. And if not, at least he will be aware of how things are going. If you are unable to speak with him directly speak with his nurse so that she can keep him apprised of how your daughter is doing. He really needs to understand how she is doing right now. I continue to pray for you both.

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Wilma,

 

My dd would go 48 hours without sleep and then sleep only 2-4 hours before another 36 hours of no sleep during her extreme exacerbation last year. It is mind-numbingly challenging to live this way..I know. But it is important to test the use of steroids. If the steroids are going to help it will take time. I, too, have felt like caving. Between the sleep deprivation and the behaviors we witness...it is incredible that we can even make it through a few hours at a time let alone days of a treatment course of any medication. All of these med protocols are designed for us to see if anything will help. I can only offer to keep focused, moment to moment. Nothing more. Follow the steroid burst protocol. And wait. It is painful, you are tired.

Mary

from Michigan

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I am really going to stick this out. It is not just the steroids that keep my girl. She has not slept since a baby. It has always been really scary looking. Steroids just make it sooo much worse. The good thing is that during the day, she is not bouncing off the walls like she usually does. Man, I hope something good comes from this.

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I am really going to stick this out. It is not just the steroids that keep my girl. She has not slept since a baby. It has always been really scary looking. Steroids just make it sooo much worse. The good thing is that during the day, she is not bouncing off the walls like she usually does. Man, I hope something good comes from this.

Wilma - the steroids can also help to get rid of the sinus infection as they can decrease the inflammation in the sinuses.

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Is Scott monitoring her gut during this time? Steroids can do a number on the gut, thereby increasing OCD. Then there is the idea that the steroids are making lyme worse. Make a list of the gains AND the things that are getting worse and let Scott help you sort it out (or email me). I found that when I did the 30 day taper on my 6yo, his aggression got worse b/c of steroid-induced psychosis, but in the end he was PANDAS free (meaning OCD and such went away). With that being said the psychosis was so bad that I will never give either of my children steroids again unless life-threatening issues arise. BUT what you describe does not sound like psychosis but a worsening of OCD which makes me think gut or lyme issues. In my opinion, pandas-related OCD should not get worse, only stay the same for a while or reduce.

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