What does progress look like?

[laure]

Thanks to all for the encouragement for the Igenex testing! Dr. B put dd9 on Augmentin (875bid) and continued the zith (500mg) after Igenex results showed positive for lyme 5 days ago. No real herxing issues, but we were in shock when the second day after adding the augmentin, she pulled out all of her American Girl dolls, deemed contaminated in July, and played for hours. Today I discovered her huge stuffed bear in her bed all dressed up, a symbol of PANDAS which was so bad for her that I had to store it away up high and out of sight in the closet. Yesterday she dialed the phone without a tissue on the keys. This seems like progress, but there are still lots and lots of issues...and we cannot touch any of her things, or the karma is ruined, I guess. We also cannot not notice her progress, or that ruins it for her as well. Does healing from lyme/PANDAS look like this? Is it slow and gradual, and if so, how slow? She really has no other health complaints, not a one - no pain, no sleeplessness, no weakness - just contamination OCD, a few off and on sniffing tics, and maybe a tinge of fogginess in the brain, but nothing that interferes with school. Oh, and the rages (always at us) and oppositional defiance, they are infuriating to me. I would be interested in hearing the experiences of others in similar circumstances, and also if you/your child needed counseling to complete the process, or did the abx totally eradicate the behaviors? ...and make you become better parents, magically

[Phasmid]

Well, I have to say it can be both slow/gradual, and immediate depending on the situation. During my son's fresh relapse in 2009, his illness was very acute- sudden, overnight coprolalia, vocal tics. We treated immediately with vancomycin and within one day he was coming out of it.

 

With the more chronic behaviors, ODD etc, it is a more gradual healing with antibiotic treatment

 

 

[smartyjones]

...and make you become better parents, magically

 

 

yeah - right -- that's what we need! a few months ago, i was really struggling with ds, 6. how can he flip my buttons so outrageously when i truly believe he is sick and not responsible for the oppositional defiance but it is still so difficult to deal with on a daily basis??!!

 

above all -- i do believe it is the medical issues that must be corrected either eradicating infections or calming autoimmune reactions. there's simply things he did not previously do and doesn't when on motrin that i must attribute to pitand.

 

but while on the path of healing, i think it's important for the parents/teachers/caregivers to have coping mechanisms in place. we have not been able to find helpful professional help -- have used tips from this forum, Explosive Child book and anxietybc.com for help much better than any pscyh and behaviorists sought. for ds, he can follow procedures that we impose and can learn -- such as slowing down and trying to find solutions when inappropriate reactions strike -- but it is heavily adult regulated. he can't really 'own' the techniques -- i'm not sure if that's age, immaturity, or brain function. i tend to think it's the illness and use these techniques to help us cope rather than changing his behavior.

 

i found the book When Labels Don't Fit very helpful recently when seeking help for oppositional defiance. it has some techniques to use that made life smoother for all of us. his troubles usually fall in the realm of 'just right' OCD or sensory troubles. i found it a good mix of not totally cowtowing to his needs and differences so that he is controlling all of us but working in ways that can allow him what he needs in reasonable fashions. more along the lines of helping modify his issues for him to better function in the world than either having it all on his terms or forcing him in ways that don't work for him.

 

oh and yes -- i think that sounds like some fabulous good signs in a short period of time! we've seen behaviors melt away. i am always rather cautious though b/c ds had 100% remission in a few short days when first on keflex initally (after horrible 5 days on azith-- ? could have been herx when we didn't know lyme was involved - ?). early on in pitand journey and i thought he was cured. he relapsed when off keflex and i was devastated, so utterly unprepared for that. we've later discovered multiple infections and it's a long journey healing them all. so, i think you should rejoice in what good you've seen -- just be aware of cautious optimism and don't fall too low if there's regression -- it's to be expected from the beginning. it's all perspective, right?

Edited December 7, 2010 by smartyjones

[dcmom]

I have two daughters with pandas.

 

I found, for the most part many ocd things went away on their own.

 

However, there were some issues that were stickier, and we needed a little ERP therapy to work through them.

 

It was like, they were afraid of the fear. So if an activity had caused intense fear during pandas, they were afraid to feel that fear again (even though they weren't necessarily afraid of the reason behind the fear anymore). During that time, it was VERY easy to work on this, and it disappeared very quickly.

 

I think during healing- is a GREAT time to get established with ERP. They learn the basics and the tools with much less fear, they see that they work, and they will then have them there if ocd strikes again.

 

Great news! Healing takes time (a year?)- and you have to be very patient, as long as you continue to see things moving in a positive direction

[laure]

OK, we will be cautiously optimistic...and hopefully remember that she can be a nice, fun, and lovable little girl...but not expect that all yet. I am so grateful to have found good help early, friends and family who were searching for the answers on behalf of her as well, and a kind and good Dr. in Dr. B. (who told me straight away "there are a lot of really smart moms on the forum." ) And of course, for all the wisdom and advice on this forum. Igenex results should arrive tomorrow, so I will be posting trying to understand this new language of "bands"!

Maybe Santa has sprinkled a little hope down her chimney after all...