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Wilma -

 

I don't think steroids are going to fix your daughter's problems. You say she still has pretty severe OCD at night.... Is that better or worse than before steroids? Are the days better or worse than before? Try to be objective and break down her most difficult behaviors... then rate them before and during steroids. Then when the steroids end you can rate them again.

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Wilma, not sure if you saw the message I left for you on another thread...but you mentioned there that there is alcoholism on both sides of the family, and I commented that sometimes this can be an indicator of a co-morbid condition known as pyroluria, which seems to exacerbate neuropsychiatric symptoms. If you have not done testing for pyroluria, it may be something to consider.

 

I don't know your daughter's medical history or what she is diagnosed with so not sure if this is relevant or helpful but just thought to leave the info here for you again

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Wilma,

 

After reading chemar's comment about alcoholism in your family, I would also wonder if this could be bipolar disorder. Because of my DS(now18) symptoms, it was suspected by more than 1 doctor, and we ruled it out, before starting steroids, because steroids can make a person with bipolar worse. Turns out my DS has PANDAS (not bipolar), but we did rule it out.

 

PM me if you want more information.

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Does that pyroluria have anything 2 do with amonia levels? would scott smith or dr. trifeletti have checked for that when they did all of the blood work. it sounds famiiarl. Two pdocs. for sure not bipolar.

she also never had any good moments. she was always festering. that is the only word that describes her. she looks better these days though. steroids are the only drug we have tried so far that did not make her worse. i see some improvement but i see her getting very tired and grumpy during the day. nights are slightly better. we tried all of the bipolar drugs too though.

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Hi Wilma

many conventional physicians don't recognize or understand pyroluria, although thankfully it is getting more attention as the results are self evident when treating and correcting the deficiencies, especially the B6 and zinc etc. Many integrative and naturopath physicians test and treat if needed. I knew a lady some years back whose daughter had been in and out of psych wards and misdiagnosed with all kinds of stuff, who in fact had pyroluria. After treatment and correct therapy, her life positively turned around.

 

If one has other conditions (eg TS, PANDAS, ADHD or mental illness etc) then their symptoms can be severely exacerbated by the co-existence of the pyroluria

 

here is some more info on it

http://www.naturopat...s/pyroluria.htm

 

http://www.drkaslow..../pyroluria.html

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Hi Wilma-

I have been reading your posts and following along, sending prayers your way. I am so, so sorry for your daughter and YOU...the mommy who feels the pain on a level that noone else does.....probably not even your daughter.

 

That being said, I wanted to just say that while steroids may be a wonder drug for some pandas kids, they are known to have side effects that include behavioral issues, sleep issues, even psychosis. I know this just from having 4 kids, friends who have kids, are RN's, friends who are doctors, etc.....just basically personal experience. You give a kid steroids, and you could easily see tantrums (in younger kids), anger, trouble sleeping, moodiness, and even psychosis (this part was told to me by the neurologist at Washington Children's Hospital we saw....who does believe pandas exists.....he said he'd give his kid IVIG before steroids).

 

From all that I've read here, steroids on occasion (rarely) have an effect that is very positive AND SUSTAINS. I know one doc uses it as "diagnostic" to show if IVIG will likely work. I personally think this COULD have some merit......IF YOUR KID IS NOT ONE WHO GETS THE "NORMAL" BAD SIDE EFFECTS OF STEROIDS....WHICH.....HERE WE GO........ARE VERY SIMILAR TO SOME PANDAS SYMPTOMS!!!!!! Maybe the rage, sleep, etc. would all be a bit better, but they are now outweighed by the rage, sleep, etc. issues from the steroids.

 

Since you can see some improvement, but your daughter is still struggling with rage, sleep issues, etc.....I would just have to think that some of that is just the steroids getting in the way of some of the positives you might be truly seeing from the steroids. Not sure if that made any sense???

 

I also don't think taking your dd off the Bactrim or other antibiotics for "sleep issues" is logical. She is on steroids and antibiotics. Steroids are KNOWN to cause sleep issues. Antibiotics, not so much.

 

It will be interesting to see how she does as you taper off the steroids and potentially LOSE some of the steroid-induced side effects.

 

Just all personal thoughts and opinions here......

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My child gets bonkers with B6 and Zinc, but I will look into it.

Wilma,

I hesitate to give you more to read and confuse the issue, but your comment made me want to pass this along - from the lyme forum...

 

http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdf

 

It discusses a condition known as KPU (or sometimes HPU) an excerpt from the paper:

HPLs bind to zinc, biotin, manganese, vitamin B6, arachidonic acid and other important compounds and lead to a significant depletion of these substances in the body.

later on...

Once zinc is reintroduced into the body, heavy metals are displaced from these sites. Zinc is once again highly supportive of human health. However, the patient now has dislodged heavy metals circulating throughout the body. These are either competing for the already overtaxed detoxification pathways or are redistributed to places where they may be more harmful.

For this reason, it is wise to have detoxification and binding agents on board at all times while implementing the HPU protocol....

Supplementing zinc liberates 2-valent metals such as Mercury, Cadmium, Aluminum, and Lead. Patients express symptoms of acute heavy metal toxicity, which have to be addressed. At this stage of the protocol, the patient generally will require treatments addressed at heavy metal detoxification

 

The article also discusses B6 and other minerals and vitamins in detail. Too much to post here.

 

I'm not suggesting you try to figure this out yourself. But maybe ask Smith about it. Your daughter's severe reaction to these supplements doesn't necessarily mean she has enough of them. It could be a detox issue or a case of a chronic illness causing a cascade of system dysfunctions.

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