Progress with NancyE?

[Guest Guest_Jennifer]

NancyE,

 

I am still having problems getting logged on as a member, consequently I can't send you a personal message. I was wondering how your son is progressing.

 

Hope all is well.

 

Jennifer

[NancyE]

Hi Jennifer,

 

Well, I can't go into a lot of detail right now, but things have been very up and down. I think I mentioned before that we had an intial huge increase of rage-type moods when we started the full Pfeiffer regimen. We've cut out certain vitamins for short periods of time to experiment, and have seen the naprapath to try to help sort out what's going on. Things did get better with the moods, but anxiety is still a big issue, bigger than before, I think. Our naprapath muscle tested him and said he's "mobilizing metals" now, but needed help actually getting rid of them, so gave us sodium alginate, which is supposed to work like chlorella. He muscled tested that the sodium alginate would work better than chlorella for him. Honestly, we didn't see any big changes when he was off gluten for several months, and we finally started it again. To complicate things, he was sick with a stomach virus last week, so I had to stop all vitamins for a few days. He seemed to do ok, and was actually dry at night during that time, which makes me believe again that the vitamins may have something to do with him being wet at night.

 

A new shoulder tic has cropped up in the last month, some days it's very constant, some days it's not there at all. I keep trying to connect his behavior and tics to something concrete, but it's never consistent. I just don't feel like we have hit the right combination of everything yet to see clear cut results. Maybe it's just going to take longer with the vitamins, but we have had to interrupt the program several times, so I don't know if that makes a big difference.

 

I'm more worried about the anxiety than anything else. I'm going to talk with the nurse at Pfeiffer again and tell her what's going on. I think it's too early to retest him, but I don't know if his current program is really helping. One thing the naprapath did was have him drink something that's supposed to indicate how high his zinc levels are. I've heard of it before, but we'd never done it before. Anyway, it didn't have a strong taste, which indicates his zinc level is still low, after several months of 50 mg of zinc a day. She muscle tested him and switched the type of zinc he's taking, so we'll see if that helps.

 

I'm feeling a little discouraged, and worried about the anxiety, but I still feel we'll eventually get there, even if we have to go somewhere else for answers. I'm also seriously considering finding a therapist to help him learn coping skills to deal with the anxiety. it's just not an easy fix for us. I don't mean to sound like he's not able to function - he's leading a relatively normal life - doing great in school, etc., but these underlying issues just make things more difficult, sometimes really difficult, and I know he needs help now before he gets any older.

 

Well, I guess I did go into detail! I hope things are going well for your son.

 

If anyone has suggestions for what helped them most with anxiety, I'd love to hear them. Thanks.

[Guest Guest_efgh]

Nancy

 

When you say "anxiety", can you please give examples??

 

I do understand your situation.. these ups and downs are really bothering all of us

 

Goodluck

[Claire]

Nancy,

Sorry to hear re your frustrations!

 

My ramblings on anxiety and the current Pfeiffer treatment....

 

 

Does Pfeiffer include manganese in his supplement list? This is somewhat standard, though they say they take it out if the child has/had a tic syndrome. It apparently can aggravate tics and OCD. Still, on Braintalk they had put it in (different doctor, or they weren't paying attention).

 

Are you still giving him 200 mg (+50 mg in a complex) of B6? You know that this can cause hyperness and aggravate yeast issues, yes? I know yeast wasn't an issue per your naturopath--did you do the spit test at home also?

 

I can't remember if he had pyroluria, but I assume so because of the high B6? This certainly impacts anxiety. Perhaps you could do a pyroluria test directly with direct access to see if the current program is keeping it under control?

 

Have you done an adrenal stress test? www.diagnostechs.com If he has high adrenal stress (.e.g. too much cortisol, which is possible with the anxiety), then they recommend supplements to bring the adrenals back to health.

 

I am curious, did you notice anything at all when you added gluten back in? (Good or bad or nothing?). Also, did you ever do food sensitivity testing for other foods? (sorry if I have forgotten)

 

I have forgotten if you ever did a no screens test? Quite a few here have noticed behavioral improvements as well as tic improvements.

 

Did you ever do the Spectracell vitamin/antioxidant deficiency test? If you call them they give you the name of a local lab to draw blood.

 

Claire

[Guest Guest_Jennifer]

NancyE,

 

Sorry to hear things have been so rough lately. I can certainly sympathize with the mood swings!!

 

I can't remember if you had started a detox protocol prior to going to Pfeiffer. We have been working on detox for almost 3 years now and at the very beginning things were awful. His tics increased and his behavior got worse.

 

I noticed a big increase in night time wetting as well when we started the primer. He had an episode one evening where he couldn't stop using the bathroom for an hour straight. I was very worried about his kidneys, but I was assured that his tests didn't show any abnormalities. I did just read the other day that detoxifacation can caused increased urination.

 

Were your son's copper levels high? When restoring zinc levels you can have undesirable copper detox effects. You may have allready done this, but if you haven't, there is a liver test through Great Smokies that tests the two detoxification pathways (phase one and phase two) of the liver to make sure they are functioning correctly. You may want to ask your doctor or Pfeiffer about it. One of the doctors at Pfeiifer who consulted with our family doc re: my husband, mentioned that if he felt worse during the pyroluria treatment protocol then the next step was the liver test to make sure it could handle the detox. Pyrroluria itself does stess the liver because the high amounts of Kryptopyrroles are actually toxic. I'm not sure why the liver test isn't a standard one.

 

You can also request to speak with the doctor at Pfeiffer rather than the nurse, I found that the doctor was much more helpful.

 

 

 

Good luck and hang in there

 

 

Jennifer

 

 

P.S. I found chocolate and molasses to be major agravators for our son, interestingly they are both very high in copper. A few of the cereals we were using used molasses as a sweetner.

[ropeterson]

In repose to Claire and the high B6 levels. I have started taking supplements as we have worked with my son (I'm the apparent, undiagnosed carrier with tics that I have hidden throughout life). We were on Super Nu Thera with our son and then switched him to Bonnie's (I'm assuming my wife will correct me if I'm wrong on this). Things went downhill pretty soon, but we were also going through a yeast reduction protocol and thought it might be due to die-off. Anyway, we switched his supplements back to a lower B6 level and things went back to peacful. Not saying anything about tics, but his anxiety disappeared compared with Bonnie's. I had started taking SuperNuThera when he was on Bonnie's, then swapped with him to conserve pills.

 

Bad idea.

 

I freaked on Bonnie's. My head itched, I was yelling at everyone, completely stressed out the first day. I never took them again.

 

I doubt TS is caused by one single metabolic problem, so everyone will probably have different reactions to different treatments. You might want to discuss with the experts here the possibility of lowering your B6 (P5P) levels.

[NancyE]

Thanks for all your replies. First, he is not taking manganese and was negative for pyroluria.

 

I spoke with the P.A. at Pfeiffer the other day, who was very nice. He was almost out of his original compounded prescription so she recommended taking things individually for awhile, as it is easier to adjust and separate things if necessary. We decided to lower the B6 a little and increase the P5P a little, change the fish oil brand, and change the inositol brand (I had actually run out of inositol sometime in the last month, so I don't know if that has played any role in anything). We are also doing a stool test for yeast/parasites (we haven't done this yet), and possibly a follow-up urine test depending on the 1st results.

 

I will schedule his follow-up visit for February and see one of the doctors she recommended to ask about some of the other tests.

 

His copper was high and the ratios were out of whack, and his aluminum was very high in the original tests, but the P.A. told me they don't really consider the aluminum results all that accurate in that test, so who knows? I keep reading that detox reactions should last a couple of weeks, but can they last longer? The horrible rages are pretty much gone, but the anxiety is there, and I cannot figure out why he's ticcing again.

 

By anxiety, I mean irrational fears, overreacting to possible bad scenarios, convincing himself that something bad will happen. A lot of it seems OCDish, and I just read Tamra Chansky's book, which was very helpful, and we're trying to use her techniques.

 

We had really cut out gluten to see if it improved his mood, and I honestly don't see any connection there. However, I realized his new ticcing started up when he first started gluten again. Of course, there have been days when he didn't tic since starting gluten again, and many virtually tic-free months while eating gluten before the experiment. Would it really make him start ticcing again when he was usually ok before we removed it? He's had tics come and go with no explanation before, so I'm hesitant to connect it to this too readily.

 

As far as screens, he rarely watches tv, computer is very limited. When he was at his worst when initially ticcing I always noticed he'd tic more when watching tv. However, there have been long periods when he's been doing better when screens really didn't affect him. Even times when he's been exposed to playstation or computer a lot at his cousin's house and I EXPECTED him to be affected and he wasn't. Again, we just don't get a lot of the clear cut connections that a lot of people do, unfortunately.

 

HOWEVER, he's doing ok overall, we'll keep plugging along, and hope that the follow-up tests give us some indication of whether we're on the right track.

 

Thanks again to everyone.

[Guest Guest_Jennifer]

NancyE,

 

As far as copper goes, I believe the detox lasts until the copper levels are where they should be. Kind of like with yeast, you have die off till all the yeast is gone.

 

Copper can actually take the place of zinc as a neurotransmitter in the brain when too high. The anxiety may be more pronounced as changes take place in the brain.

 

It sure will be nice to have the follow up tests to be able to see where things are at.

 

Best wishes,

 

Jennifer

[Claire]

Nancy,

 

Yes, you can not notice symptoms when on gluten, then remove it, then notice them when you add gluten.

 

We had only noticed excema with my son when he ate gluten, which improved remarkably when it was removed. But when we added it back in, it got him wired or sleepy. Tried it 3 different times until I was convinced.

 

Not saying that is what it is, just that it could be. Our DAN doctor calls it masking--sometimes daily intake masks symptoms that appear clearly when withdrawn and added. The doctor at the food sensitivity lab confirmed the same thing re milk.

 

Also, I think it is rare for someone to tic at the same rate everyday when exposed to a trigger anyway. So the variation in ticcing certainly doesn't rule out gluten by any means (nor does it confirm it of course). Just like the computer exposure.

 

The bottom line is the only real way to know re the gluten is to remove it again--I forgot whether you had formal testing done to justify this. We love our gluten free bread and don't even miss it at all (a gluten-free house now) these days. Not true for everyone, and I think the bread is key.

 

Claire