HELP High Alkiline Phosphate Level

[kim]

Marie & Caz,

 

This is the first time I was able to sign on here, I think the site is not working quite right. Marie, I am finding I am obsessed with trying to find clues in this whole picture. I think there should be a term like "Mom's who can't stop" Syndrome. I was sure a lot more calm when I bought Dr. Jerks (NEURO) explanation of this disorder. ""Give them clonidine and they will out grow it, if it gets worse give them more clonidine".

I don't know if you remember my talking about my youngest son having an increase in tics about 2 weeks ago while roller blading (flashing lights?) well he ended up having a sore throat body aches etc. In about 24 hours he was better but a little hoarse in the morning and not 100% for about 1 week. Then, one week to the day of younger son not feeling well, oldest starts with same symptoms. Older who eats everything while younger who eats nothing ALWAYS get sicker for longer than non-eater, which I have always found so puzzeling. So I take them both in for cultures. Oldest ones comes back positive for streph, youngest is negative. The nurse said kids can recover from streph without an antibiotic. Pharmacists said not usual. Oldest had a few head shakes, which has been absent, with this infection, but both seemed to throw it off quickly. Now I'm worrying about yeast (amoxicillan) which they only put oldest son on, and I definitly saw an increase in tics especially with youngest at onset of this, and wondering about PANDAS. It certainly has not been a crisis, but I am so much more anxious watching for every possible clue, then I used to be. I had to laugh when you said "remember to take care of yourself too,"

Marie, as I am probably the one who is most out of balance right now, hands down.

Caz, I have a few comments on the labs, but I'm running out of room, as is normal for my postings! Guess I'll have to do another one. Kim

[Claire]

Kim,

 

I asked Great Plains about the B6/pyrodoxine in the urine (my son had lots also) and they said it just meant you are supplementing, not that the body was assimilating in properly.

 

I think the opposite is different though--a low level means that you body doesn't have enough to throw off the extra....because mine was low and my doctor said I need to supplement.

 

Well, strep is a biggie--gotta treat that. I hope the nurse completed her statement. The body can heal itself of strep infections HOWEVER, the reason that we treat it with antibiotics is that not treating it can result in much more serious secondary issues for some of them. Even if they don't 'believe' in PANDAS, they know it is true for rheumatic fever. I had the same initial discussion with doctors before.

 

Claire

[kim]

Claire, Caz & Marie,

 

Claire, I agree the streph needed the antibiotic. The part that concerned me was if my younger son has it and they missed it on the culture. That's why I asked if streph can just clear on it's own. Their illness was just so identical, it was hard to buy that one had it and the other did'nt, but youngest seems fine. They didn't seem interested in reculturing him. As for the B6 levels, maybe a P5P /B6 combo would a good way to go. I guess I would like to see blood work to see what kind of comparison you would get i.e no supplements, then P5P and uptake,also does anyones kids vitb level come back in the normal range when you're supplementing? I guess that would tell you for sure, that they need the additional amount. Claire when you stated, you knew you were low, have you been tested since? I wonder if you are in the normal range now, or over, and if over, by how much? I don't know how much is to much, as in taxing the kidneys with unnecessary excretion. I guess I have to believe the level would have to be much higher, since I have read about truly mega doses, and the biggest worry seems to be about the numbness in extremities.

The link you posted from Dr. Walsh from Pfeiffer Claire, really got me looking at the Methylation issue, and my boys blood work. He says the markers for determining over or undermethylation are (1) whole blood histamine ref levels 40-70 mcg/dl, available from labcorp. or quest and (2) Absolute Basophils ref. levels 30-50. available from Direct Healthcare Inc in chicago. Elevated histamine and or/basophils indicate undermethylation. Then it goes on to state symptoms. I have to believe my oldest is under, and if I had to guess I would say my youngest is under also. I know I am probably being simplistic, but if there are people out there supplementing with different things like Inositol, SamE etc. These things appear to be very important. When people have positive results with something like Bonnie's viamins in the beginning, and then things start to go bad, it would make sense to me that they may be reacting to something as simple as the Inositol, as this can have negitive effects on overmethylated people. Claire, I think you pretty much said this in an earlier posting, but my take on this is, even if it gives little hints as to what test your money is best spent on, I think a blood profile even from your regular old Pediatrician can maybe provide clues, if you look hard enough. I still need to find out what MPV is. Does anyone have any suggestions on where I could look? Also, Calire and Caz I'm sure with all of the testing you have done it has been determined if your kids are over or under methylated. I believe Kurt is over? Is one or the other more common? I am particularly interested in this since I am reducing the Clonidine, and stopping all together slowly. I think I may give oldest a little more inositol (in addition to what he is getting in the TS Plus-12 capsules a day) and see the effects if it looks like he even needs anything more. He's doing really great right now, but we all know how that goes. I know Cheri has said Inositol is pretty safe, but does anyone advise against trying this in very modest amounts without testing/supervision by physician? I would not do this with youngest son at all-except for Bonnies vit. which I haven't even started him on yet. Just taking all of this slowly. Marie, maybe some of this will be interesting to you too, since yousaid you haven't started testing yet either.

Awesome about your compounding success Claire. Your son owes you a big hug! And how nice, it even comes with a little savings.

[Claire]

Kim,

 

Pfeiffer says 45% (of ASD types) are undermethylated, and 15% overmethylated. The point being that 60% have methylation issues. 3:1 under vs over.

 

Jennifer, Nancy and my son were undermethylated, Caz's was overmethylated. Funny, there goes that 3:1 ratio.

 

Pfeiffer usually does TMG with folinic acid for methylation, but notice 5HTP is BAD if you are undermethylated, and good if you are overmethylated. You need both the tests you mentioned, but the histamine one is most important (we did both). We just retested and will know in a month if it made an impact on his methylation issues.

 

 

 

I do recommend the pyroluria $48 test as you know because 1) it is non invasive urine test that can be done at home, 2) it is cheap, 3) so many here tested positive and 4) it needs no doctor's signature. But you need to stop B6 and zinc for a few days first.

 

Also, that spectracell.com test doesn't need a doctor's signature. For us, we could see that my son was at the very low end of normal on inositol. They will send you supplementation recommendations--I personally wouldn't supplement without some testing, but I am super conservative. I know they are expensive, and given that it is tax time, we are feeling a major pinch in the pocketbook, for real. I am almost glad we already did all this re-testing, or we might have had to postpone it.

 

I have postponed my own retesting for financial issues. How funny because my son has had 3 rounds now, and me one round--shows my priorities in life. But then, I don't have symptoms that might potentially interfere with my life and work (e.g. photosensitivity). I finally retook the Spectracell vitamin deficiency test. I do know that supplementing for my son definitely corrected deficiencies.

 

To figure out methylation, I might see if antihistimines made a difference in symptoms--for a night or two (not during school, they can make people sleepy. (for high histamine/undermethylated, they might have an impact).

 

I worry about too many vitamins for a long time, so I was conservative in the multivites. I basically did just the normal daily requirement for many, then a bit more for things he is known to need based on some tests. I am doing enzymes to improve his nutrition absorption also.

 

I still think that zinc is an issue for the son with a 76 score...did your doctor have an issue with you supplementing zinc?

 

Claire

[Caz]

MPV means mean platelet volume. I just did a google on it... Not sure what significance it has, but you may want to check it out some more.

 

I know for us that testing has really helped guide us in the right direction, before we were just stabbing in the dark.

 

Just my two cents worth, but I would think checking for heavy metals first would be a big help. So many systems in the body do not function adequately if there are heavy metals involved. We are just starting out on the metal detox now, yet we have been supplementing for nearly 18 months. I wish we had found someone to do this test back at the beginning, and that we were further down that road.

 

Oh well, cant change the past!

 

Caz

[kim]

Hi Claire,Caz,

 

Thanks for the stats on the Methylation, interesting. I would like to see more people post on their results and how closley the symptoms fit. My sons symptoms are mostly so mild, it's a little harder to even guess. Oldest has no ocd tendencies, younger has 2, eating and showering-have to rinse the bottom of the tub for several minutes before getting in, which I would definitly call ocd type tendiencies. However this is not an "always" thing with the shower. I was all set to order the pyroluria test, then I read Dr. Walsh statement about Symptoms: stunting of growth, (definitely does not apply) unpleasant body odor, (No) delayed puberty,-Oldest has all of the signs for a good 6 months, he's 12, skin stretch marks-No. I know this does not rule out pyrolauria, and I think FJ mentioned that the test will show you some deficiencies anyway, I need to reread her post. I guess since the cost is minimal, I still think it is worth doing. I have to tell you guys one thing I'm seeing, and many of you might warn against this, but oldest has been taking Benedryl nightly for about 2+ weeks, and he is doing really great, in the mood dept. especially. With the streph, and a little head shaking flair, I'm not ready to say WOW, this is stabilizing his histamine level, and making a major difference; but I am very tempted to continue this for a couple more weeks. When I talked to the Ped. about it, he said if it is working to control itching, no problem. I don't agree with this way of thinking, but short term it may be worth it. Also, as many of you have said, it's hard to stop what's working. I really think even the min. amount of the ts plus, and changing from fish oil to flax seed and borage, may have helped. Time will tell. Caz thanks so much for the MPV info. I will see what I can find, and maybe I can enlighten my Ped, since he did'nt kow. I really like this man, and I don't have any wish to be challenging with him.. I just so badly want him to understand some of my concerns, with steph, future boosters, food sensitivities, and my youngest sons appetite, since I can not see how this can continue, without it taking a toll on his health at some point. I envy how far you two are with the testing, and believe me, if our issues were larger, we would be further with it too. When everyone is doing well, I just want to forget this for a while. One more thing with youngest son; to early to tell, but it appears when I stop dairy from after school on (still has his morning breakfast drink) it looks like the bed wetting stops. Going to keep testinig this theory, and giving more non dairy liquids at night to see if it is the milk, or just reduced fluid intake. Have a great day! Claire, did you note where Dr. Walsh said histamine levels may not change in blood work, but symptoms can dramatically improve, indicating the level not does not always correlate to the severity of symptoms? I think that's what it said

[Claire]

Kim,

 

The positive response to the antihistimines sure makes it work looking into the labcorp.com histamine/methylation test. Then possibly treat to correct the histamine levels vs just using antihistamines.

 

My son had none of the pyrolura symptoms mentioned on the site. Dr. Walsh skips light sensitivity--that is a symptom too. The stunted growth is just due to low zinc by the way, and it doesn't affect everyone of course.

 

I agree with Caz on the metals, especially for the son with low zinc, but I know you need a doctor's signature for that one and don't really have a cooperative doctor. I think that is the underlying cause for possibly even the majority of us here.

 

Don't know about the other comments from Pfeiffer.

 

To save $ just test one son and if it is positive, test the other.

 

Claire

[NewTSMom]

Hi everyone,

 

Well I read this thread and my mind is completely boggled . Where do I go for help?

[kim]

Hi New TS Mom,

 

Sorry you're stuck with the non-expert for the moment. Claire and a lot of others here will be way better at answering specific questions if you have them. I can try to help with basic questions. There are a ton of threads that have so much useful information. Once you kind of get fimiliar with some of the tests, and places that do them, it will be a little easier to understand what others are talking about.

When I decided we needed to use something other than clonidine (because I could see it wasn't helping control a painful head shaking tic) for my oldest son, I came across Bonnie Grimaldi's web site. She developed a product called TS PLUS which is basically a combination of vitamins and minerals that many have found to be useful for tics, and a lot of the conditions which sometimes accompany tics. I will try to post the link for her web site. If you start there, and read everything on it, it might help. That's where I started, and I really feel I have gained a lot of knowledge since then. It's funny, my oldest son started ticcing in 1st grade. He's now in 6th, and until January of this year, I never really knew anything about this disorder except what I was told by the Pediatrician and the one of the few pediatric neurologists in our town. I now realize how little they know about it. That was scary and very maddening. Many have found great relief for their children, getting to the bottom of inbalances and correcting them without prescription medications. It is confusing and overwhelming especially at first, but read read read and don't be afraid to ask questions. Everyone here is really wonderful and supportive. If you care to tell a little about your situation, It may help in pointing you in the direction of the information that might be most useful to you. Was your child recently diagnosed? Did they have an explosive onset of tics, or did it come on gradually? Is he/she on prescription meds? If you read the threads regarding pyrolauria, and yeast, this is a starting point for many. I was really BAD when I joined here, I had no idea how to use the forum, so just in case; just go to the top of this page and click "Tourette Syndrome/Tics" and look at the thread titles. Click on what seems of most interest to you. If you have a question regarding that topic, click on the add reply and submit your post. It will automatically take that subject to the top of the message list. Welcome, and I hope you find some answers here to help your child. http://www.bonniegr.com/Interview%20with%20Bonnie.

[Guest Rick]

To KIM:

 

My 13 y/o son had his ALK Phosphatase level tasted. The average range is between 66-265 on the lab report parameters. His was in the mid 200's. The doctor who is an Endocrinologist said this means he has another growth spurt in him and kids with higher levels of this enzyme are still growing.

 

Hope this helps.

[kim]

Rick,

 

Thanks so much for taking the time to post that. I'm really glad to know it was an Endo. that said the same thing I was told. Two of my sons both had high MPV and

Low neutrophils also and from what I have read, both can mean a lack of B 12. Neutrophils can be associated with low folic acid also. If you have your son's results handy, I would love to hear if either of these were out of range, and am wondering if your son has tic issues?

 

Again thanks!

 

Kim

[Guest Rick]

Kim,

 

MPV = 8.3 in a range of 7.0-10.0

 

Neutrophil = 63.6 in a range of 35-65

 

Lymphocyte = 27.5 in a range of 28-48

 

I don't know what any of these mean and he has no tic issues

 

Rick

[imskb]

Hi,

 

Where in Canada is the functional B6 performed ?

 

Thanks,

Susan