No TV - NJ Mom Documents Day By Day

[kim]

Dara,

 

Could I ask why you are ordering the stool test instead of the urine test again?

I think someone posted that the stool test can miss yeast easier than the urine test? Also, I was wondering if you could tell me a little about the die off period. Did your son have a hard time with it? I don't really know what to expect and am wondering if I should wait until school is out to start persuing this.

 

How is your little guy doing? My 12 year old is having a hard time right now with the head shaking tic, and a bad bout with colds/allergies? It seems so much worse when he's in the house, than outside or at school. We are new to all of this, so I'm watching everything they eat, breath, look at (computer, tv, lighting etc.) and how Bonnie's vit. and the EFA's might be affecting things, and I have two, with different issues. Not complaining, as right now everything is quite mild.

 

Thanks for the help Dara

 

Kim

[Claire]

Dara,

 

I tried to return your PM but your mailbox is full. You need to delete some old messages...

 

Claire

[Dara]

Claire,

 

I don't think my mailbox is full. I only had 14 messages and I moved 6 of them to another folder. Can you try again??? I'm stumped that it said my mailbox was full????

 

Dara.

[Dara]

Hi Kim,

 

I'm so sorry I never responded to your post. It's been so hectic around here for the last week and Karl's tics had been terrible for the last five weeks. During this past week, Kar'ls tics have gradually gotten better. Thank-god.

 

As far as the comprehensive stool test and the organic acid profile, I've decided to hold off on both. You asked why was I doing them. During times of insanity and desperation I try to do everything at once even when it doesn't make sense. After dealing with Karl's tics for almost a year, and dealing with many ups and downs I think I've finally seen the light. My new motto is to slow down and take one day at a time. It seems that whenever Karl's tics get really bad, I get that helpless feeling and then I try to implement everything at once. Instead of doing the stool and urine tests (again), we've decided to take Karl to the Pfeiffer Outreach Clinic in Maryland during the second week of May. Claire has told me so many good things about this clinic, we couldn't pass it up. At our visit they're going to perform an array of tests, so for now we'll wait on the Great Plains Lab tests. I'm not one to tell you about the yeast die off period. This yeast thing is still all very new to me. Claire seems to be an expert in it. She's been so helpful to me.

 

I'm really sorry to hear about your 12 year olds head shaking tic. Lord knows we've seen just about every tic imaginable during this last year. Currently Karl has humming, coughing, sniffing and head nodding. Seems drastic but in actuality, it's quite managable right now. Karl has also had a cold/allergies during these last couple of weeks. I'm sure his flair up is directly related to those things plus some other things going on.

 

Love to hear from you.

 

Dara

[Claire]

Hi Dara,

 

I tried again, and got the same message re your personal mailbox being full, how odd! I will just respond here instead.

 

I am really happy to hear this that your son's tics are settling a bit! Maybe the Nystatin is starting to help? So many things it could be, I know...

 

Cool that you are going to Pfeiffer! I agree that the money is better spent on Pfeiffer than a second Great Plains test at this point. You already know that yeast/bacteria is a problem and are treating for it. We are just doing the culture because the nystatin didn't get rid of it all.

 

I sure wish these doctors would get together so we didn't need to go to multiple doctors to get all the tests done. I wouldn't have gone to Pfeiffer if our DAN doctor would have done the same tests (methylation, MT promotion, labcorp.com zinc etc blood test) but then Pfeiffer doesn't do all the ones that he did (food sensitivities, etc...), so it is actually mostly complementary. I too think (hope!) that between a DAN doctor and Pfeiffer, you will have covered all the bases.

 

When you go to Pfeiffer please ask about their MT promotion therapy. It is supposed to help if their are food sensitivities, yeast and metals. If you continue with the zinc supplementation, you may be able to start MT promotion right away if they agree it is suitable....they won't do MT promotion until the zinc levels are normal, and their test uncovered a zinc deficiency that our other ones didn't.

 

Claire

[KJS]

Hi Everyone,

Yes, I'm a newbie, so I'll be thrilled if my post even makes it to the big screen! My 11 year old daughter is on day 9 of no screens and I'm sad to say that we haven't noticed a change in her tics. Does anyone have a suggestion for how long we should continue? She has bought into the idea of doing this until Sunday so that will be about 12 days of no screens.

 

Thanks,

Karen

[Andy]

Hi Karen. We are treating our son's condition with limited screens,1/2 hr a week, vitamin/mineral/amino acid supplements, special restricted diet and currently started detoxing for metals which includes IV's, lotions and the nightly epsom salt baths. We are also testing his intestinal track for yeast and other nasty stuff and I am researching into food enzymes as supplements as a possible plan for the future. There is no one magic bullet and it is a long path to take but if you read all of the posts carefully you can find short cuts and save alot of money from other people's experiences.

[Claire]

Hi Karen,

 

If you haven't noticed ANY change, then I suspect this just isn't a trigger for her. That is good news, really, there are still plenty of other things to try, and one less restriction!

 

I would go ahead and reintroduce screens, then just pay attention (without her being aware of scrutiny) to see if she tics more.

 

Otherwise, I would rule this out for now and go on to other things. Diet seems to be the next biggest--we have a thread on this one. I will update the TV/computer thread for your efforts.

 

Keep trying, but I would move past TV at this point--it has never taken anyone here this long to see ANY improvement.

 

Claire

[KJS]

Claire,

Thank you for your comments and suggestions. I am still overwhelmed by the notion that there is support out there for me (and, by extention, for my family)! Bit by bit I am finding and reading the various threads and trying to plot a course of action, as Andy suggested. Our family schedule is quite hectic right now so it may be another couple of days before there is even time for screens.

 

Karen

[Dara]

Claire,

 

I don't understand what's wrong with my mailbox???? Karl, my husband is coming back from Florida today, so I'll have him take a look at it. Sorry about that. Anyway, I just received the Health History form from Pfeiffer yesterday. I'm going to fill it out tonight and mail it back tomorrow. As I said, I'm really excited to go. I think you're right about the yeast finally dying off. Considering that Karl's been on Nystatin for almost four months, maybe his flair up was a result of the yeast dying off and maybe now things are leveling off. I've been so much more relaxed during this last week knowing that his tics haven't been as bad.

 

I'll definately ask Pfeiffer about the MT promotion therapy. Thanks a bunch.

 

Dara.

[Andy]

Karen, I myself find the whole thing overwhelming and emotionally taxing. The road we are on is a long one but once you start with appropriate plans of treatments you will see various improvements. This site was a godsend to me a couple of years ago. It was actually the first time that I saw that I was not the only one who thought something could be done. If you have not already done so, I would recommend that you check your health insurance policy and go looking and for a doctor, then research him or her, who specializes in treating kids who have the conditions that our kids have. Like I said before and I will say again, I had a mainstream doctor who looked at my kid for five minutes and wanted to prescribe heavy medication and now I have an alternative doctor who plans a course of action based upon blood test, urine tests and stool tests for minerals, amino acids, vitamins, yeast, delayed allergies or food sensitivities, and of course heavy metals.

[Guest Guest]

Dara,

 

I'm so glad things are getting better with Karl. It's horrible when you have that out of control feeling.

 

My oldest son's is not experiencing any head shaking at all for about 1 week (knock on wood) and I have only seen him push on his front teeth about once every two days. This is associated with the teeth grinding tic. I cut back on Bonnie's vitamins to 9 Vit. and one fish oil per day. We are staying there for a while, although I am sure his his immun. system could use more of the fish oil so we may try increasing again in a while. They have been on Spring break this week, so I am wondering if stress reduction is playing a part. He still gets itchy at night, and takes about 1/2 a tsp-or 1 tsp of Benedryl about 5 nights a week. I have really been trying to avoid corn products in his diet. At this point I'm not sure what has made the difference, but it is wonderful to see him almost tic free and happy, and feeling better. He hasn't been annoying his little brother as much either.

 

I tried to have urine testing done fror yeast, through my pediatrician. They usually use Mayo or Lab Corp. when something can't be tested locally. Neither of these labs do yeast testing, and my ped. would not send it to immuno. I tried to send myself, and found out they need Blood-not urine. What a mess. It was really dissapointing. The new plan is to have a local lab collect blood-spin it and pack to send to Immuno. I pay 150.00 for first child-113.00 for 2nd. Immuno will send the instructions to the lab before the drawing is done. I'm also considering having food allergy testing done by the good old fashioned allergy Dr. Insurance will cover this and it may give me a clue, although I know from all of you that I could very well get false negitives. He did test positive to corn pollen a while back, when we did environ. allergy testing (mold, cat, dustmites). Since I have both boys, and their symptoms are quite mild most of the time, I don't think we're ready to go the whole 9 yards. This is easy to say when things are going well, but one flair up changes your mind in a big hurry. If anyone has blood work from just their regular Dr. I sure would be interested to know what the zinc level is. Younger son had blood profile done 3/11-zinc serum done through Lab Corp. It was 76, Normal range 70-150. Just curious. Dara, I'm happy to hear from you anytime. I sure understand staying away from the computer when things aren't going well. It's time consuming, but is such a wonderful source of support. I'll be so anxious to hear about your results with Pffieffer.

 

Kim

[Claire]

Kim,

 

According to Pfeiffer, 76 is NOT normal zinc at all. I had the same sheet from Labcorp and interpreted it the same. My son's zinc per Labcorp was 70. Pfeiffer says that is just the testing range listed, not the normal levels. The normal range is 90-150 mcg/dl for the Labcorp test.

 

Furthermore, they look at the copper/zinc ratio, and my son's copper was in the normal range, but the ratio was off. Take your copper number and divide it by the zinc number. Per Pfeiffer, it should be .7 to 1.00. Thus they said my son's zinc needed to go to 120.

 

Someone else here who went to Pfeiffer had almost exactly the same stats at my son and the same recommendation of zinc at 120. For my son, they wanted his zinc supplement at 75 mg/day, though I do 50 (occasionally 75 mg, e.g. during a growth spurt, when more zinc is needed). I think the other poster had the same zinc supplementation recommendation as we did. However, I am sure it varies by age and weight (and copper level as well as zinc level).

 

My point is, based on Pfeiffer's input to us, your child is low in zinc. It sounds like you have a regular doctor doing this, not a specialist, so you might want to get a second opinion from a specialist. Right now it sounds like you aren't concerned due to low tics, but if it comes up in the future.

 

Zinc affects more than tics--low zinc can stunt growth and affect attention too.

 

Claire