Update on my daughter

[SSS]

Which may not be popular or sound right on these types of forums, but you've all been so good to me, I want to be honest.

 

Remember my post about violence and horrific verbal abuse, my family in shambles? Not a new event, sadly, but escalated to emergency status.

This is the child that is literally perfect at school- beautiful report cards, behavior, never had a developmental delay.

But the second she wakes up in the morning, and the very second she walks out the classroom, it starts.

 

Her OAT came back, no clostrida. She has never had clostrida (c. diff) in all the multiple urine and stool tests I've done over the years.

Yes, yeast is high, I knew this.

No bad bacteria, probiotics good, everything good- just recommended CoQ10, some l-carnitine, said neurotransmitters were okay- and no detox issues- weird.

 

We had a psy. evaluation today- DH, dd and I met with a brilliant Doctor (I know him, long story) he is a member of the 'Mind Institute', a premier research institute for chilhood disorders, etc. and does all the diagnosing in a large pediatric practice for autism, ADD, etc.

He knows about our Lyme,, he does not treat Lyme.

We told him all of it- what is happening, our family life, that we cannot go on like this ( daily violence and horrific verbal abuse)

he asked questions in between, and said:

I normally look for 6 bullet points out of 10 for this disorder, and you've already given me 9 out of 10.

Oppositional Defiant Disorder.

I can't really explain it -authority figure issues, what they are doing they don't think it's a big deal, he said it will go over into school, probably in the next couple of years, her teenage years (if never treated) a complete nightmare, etc.

It fits her to a T. When I got home and read more.

We are starting low dose Risperadol - very low dose, but the equally important, probably more important component,

Cognitive Behavorial Therapy (which we have never done.)

But we need the Risperadol to stop the train crash, help make the therapy more possible.

He knows all the good childhood CBT therapists in the area, and the not so good ones. I am to bring him our insurance list so he can cross off, recommend.

 

As for her Lyme disease, when I can get her stable (week or two, I hope) I am going to resume herbal tinctures gently- our Byron Whites, etc. see how that goes...

 

Whether this came from Lyme in her brain, I don't know. But this is how we are going to try and come out of this crisis.

[LNN]

You will always have my unconditional support, no matter which path(s) you travel.

I am a huge believer in CBT. We use it many times a day. Sometimes successfully, sometimes not. But it's just part of our family fabric. My only suggestion on a therapist is that if you have a choice between more than one, ask if they also do ER/P. Because anxiety responds very well to CBT. But for OCD, you need ER/P, which is a specific flavor of CBT. So working with someone who can help her develop both skills would be really useful.

 

As for the respiradol, I know how careful you are and how much of yourself you've put into this child. If this is what you need to do to keep your family functional, then do it without guilt and no apologies.

 

You're in my thoughts.

[sf_mom]

Wishing you all the best and some reprieve!!!!!

[mama2alex]

You are the mom and you know best what your daughter and your family needs. I am 100% supportive of whatever you decide to try next. I've certainly considered going down that route, just haven't needed to so far. And I know others on this and the PANDAS forum have tried psych meds, some with success. It sounds like you have a great doctor to guide you in that area, so that is encouraging. Please keep us posted on how she does. I'll say a prayer that this gives her, and you, some relief!

[tpotter]

Wishing you all the best and some reprieve!!!!!

 

 

good luck. I really hope it works. If you read the white paper (and/or the website...can't remember which, if not both) she says: go low, go slow (she doesn't say don't do it at all.) If it's necessary, then it's necessary. I think what we have all found over the years is that each of our children are different (both my kids have PANS/Lyme, whatever you want to call it, and both present differently.)

 

I've got my fingers crossed that you will get great relief.

[Bill]

I think your approach is realistic. Years ago, we were afraid that our son was ODD though he was never formally diagnosed. Everybody loved my son at school. Everything at home was borderline nightmare. I remember being totally scared by what I read so my heart really does go out to you. Fortunately for my son and us, SSRIs managed to control his anger long before we discovered PANDAS/LYME/PANS/MCIDS/etc. Today - we gave him what we hope is the last dose of Prozac that he will ever need! This is 18 months into lyme treatment and 4 IVIGs down.

 

Guess I just want to say that you should continue to have a good deal of hope as I'd be willing to bet that the behavior is the result of whatever is causing her illness - whether strep, lyme, coinfection - yet to be discovered. But - you will figure it out and reverse this!

 

Good luck and hang in there.

 

bill

[Fixit]

I'm sure i'm speaking for some who dont post, as well as myself, you are the parent. You have more of a vested interest in this child/being than any dr or person out there. Not saying that dr's don't care at all. We have all had to make alot of hard decisions.

You are the best gage as you are procedeing, what is the next best logical step!!!

 

 

i just saw this quote today..

 

 

*You never know how STRONG you are....until being STRONG is the ONLY choice you have.

 

 

 

AND BILL, i am so happy for you and your son!!

[911RN]

Sounds very reasonable to me. Sounds like you are doing all the right things! My sister's son was diagnosed ADD, ODD years ago as a young child. He is actually brilliant- very high IQ. Was never "treated" appropriately under the care of my sister while growing up nor as an adult (IMO). Only thing he was ever prescribed that he took was ADD meds like Ritalin. Has never had therapy or counseling. He did take antidepressants for short time which he said was helpful (attended college during that time and did well but later quit).He did not stay on them due to no money, no insurance, poor life decisions etc. No meds like Respiradol etc.

 

Sad to say he never reached his IQ potential- quit HS, got his GED, got a girl pregnant at 17, had 2 kids ,divorced and is in jail currently for DUI and addiction to huffing computer cleaner. He is in his mid 20's now. SAD, SAD, SAD! He is a SMART man/child that is lost.

 

You are doing the right thing to bring your family and child out of crisis. Prayers, hugs and good wishes being sent your way that this is an effective strategy for everyone going forward!!

[Suzan]

HUGS! I hope this helps you and your dd. Everyone is different and there's just so much you can take before you have to try anything and everything you know? You are doing the right thing, trying to find her some help. Slow but sure wins the race. I like your approach of getting her stable and then trying to treat lyme again.

 

Susan

[MamaOnAMission]

S&S...how is it going?

[SSS]

Lilly, thanks for asking.

 

We were stable off all antibiotics and herbs, Risperadone only, until July.

In July, a cold virus came through our house, and set my daughter off-

I couldn't get her stable again, it got very difficult,

so at the end of July, put her back on antibiotics for Lyme (same ones we were on before we stopped, slightly less dose.)

Detoxing her along the way best I can-

She is more stable now, after first 3-4 days of herxing- also notice she is clearer headed (sharper) back in treatment.

So, we are back to treating Lyme and co-infections for her.

She started 2nd grade and is doing well there. Home has it's moments of trying to reign her back in.

[tpotter]

I'm sorry to hear about the setback, but thrilled to hear that you and she got some excellent relief, and that you both now know that something does work.

[JuliaFaith]

So glad you have found some answers as they can be hard to find. Just read about this the other day.

 

Some timely information about how inflammation in the body can cause psychiatrict symptoms was on the surviving mold site the other day, which made me think more about this kind of thing.

 

I hope treatment will help your daughter (and the rest of the family) get through all of this a little bit easier. Huggs!

[SSS]

Thanks!

 

Honestly, I don't think either one of us was treated long enough or properly enough for Bartonella last year...

 

And it's a big infection for both of us. I've been working hard on Lyme, and these past few months felt my Bartonella emerging.

 

So looks like that is what we'll be doing over the fall/winter (prayers please)

 

Recently looks like I am having gall bladder issues (had ultrasound this morning) so may delay my new protocol.

 

What a lesson in patience and 'not on my timetable' the process of this illness (illnesses) has been.