Michele

[kim]

Hi Michele,

 

I just wondered if you have done any research regarding your sons test results.

 

The info about your sons zinc levels being within normal range, made me curious.

 

My understanding is that zinc is used in the "excreting process" resulting in low zinc, and high Kryptopyroles.

Maybe you can find an explanation for that, prior to your appt. or can ask your Dr. at the consult, why zinc was "normal."

 

Can you give the reference range that was listed on the test for zinc? Was your sons level in the low normal or higher end of range?

 

This is an interesting article. It mentions low zinc in white cells? I don't have time to really try to figure out what it's saying, but would be interested to know what symptoms you see as a "fit" with your son. There are tons of articles in relationship to this. I see omega 6 mentioned in a few of them, which I don't remember reading before.

 

Also, in regards to high hippuric, you may want to search toluene & benzoic acid. Not long ago I did some reading about benzoic acid and posted about it being in every maple syrup (the reg. ones like aunt Jamima, log cabin etc.) on the store shelf. You can also search benzoate on google. There are some researchers who are starting to warn of how toxic it is, and how many foods contain it.

 

When you go in and pay for these expensive consultations, I think it's really important to have your list of questions ready. The more understanding you have of the test results in advance, the better!

[michele]

I have read a little on the kryptopyrrole websites. I don't really understand it completely. The symptoms really match with my husband so Isuppose he may have it too. Yes I guess you take replacements of zinc and vit b 6. His zinc results on the urine essential elements were 0.47 putting him in a reference range of 0.15-2.5. It would be in the low to mean range. He showed lower on potassium and maganese and chromium and vanadium then zinc. His molybenum rate was high. One standard deviation above the mean. Lithium was off the charts but I give him natural lithium orotate daily one capsule. His cryptopyrrole urine was 28.50 high. I have more blood results expected to come today. The packed red blood cells found no abnormal finding. Zinc was 9.4 ug/g and was in the reference range of 8-14.5. Boron was lower 0.023 ug/g and in the range of 0.01-0.1110. Vanadium was lower at 0.0002 ug/g. I don't get what this all means. Thanks for any interpretation you may have. I will take these to Dr. Murphy. I don't know if this is what she looks at for tics and PANDAS or if this is more biomedical. You are right about getting a handle on this before the appointment. I want to make the best use of the time.

 

Hi Michele,

 

I just wondered if you have done any research regarding your sons test results.

 

The info about your sons zinc levels being within normal range, made me curious.

 

My understanding is that zinc is used in the "excreting process" resulting in low zinc, and high Kryptopyroles.

Maybe you can find an explanation for that, prior to your appt. or can ask your Dr. at the consult, why zinc was "normal."

 

Can you give the reference range that was listed on the test for zinc? Was your sons level in the low normal or higher end of range?

 

This is an interesting article. It mentions low zinc in white cells? I don't have time to really try to figure out what it's saying, but would be interested to know what symptoms you see as a "fit" with your son. There are tons of articles in relationship to this. I see omega 6 mentioned in a few of them, which I don't remember reading before.

 

Also, in regards to high hippuric, you may want to search toluene & benzoic acid. Not long ago I did some reading about benzoic acid and posted about it being in every maple syrup (the reg. ones like aunt Jamima, log cabin etc.) on the store shelf. You can also search benzoate on google. There are some researchers who are starting to warn of how toxic it is, and how many foods contain it.

 

When you go in and pay for these expensive consultations, I think it's really important to have your list of questions ready. The more understanding you have of the test results in advance, the better!

[faith]

Michele,

forgive me, I can't remember, where did you have these tests done so far, and what is it called? Is this for viitamin deficiencies? Did you do this through a doctor or on your own? sorry, I'm not thinking clearly today, was it through Pfeiffer?

 

Faith

[michele]

Red blood cell elements were through The Great Plains Laboratory, Microbial panel and urine toxic metals were Great Plains as well. Kryptopyrrole was Direct Health Care Access Plus lots of labs were done at our local lab. I don't have those results yet. They were strep and titers and many others. 10 viles worth! I can't remember them all. The DAN Dr we saw Dr. Demio ordered the labs. e felt he has an attack going on in his brain from the autoimmune disoreder. I am waiting to have the results interpreted. If I bring them to Dr. Murphy I am interested in her thoughts. I hope she doesn't order more labs. My son is getting sick of it and so am I. I think the nervousness about the Dr's and blood draws have made him more anxious and could be making the tics worse. I can't figure out why they have not gone away this time. It seems the more I've done to helphim the worse they have gotten. I am very upset about having to take him to Florida and leave my other three kids including a baby but I want him to see the best Dr. we can who understands this disorder P

PANDAS or tics. I am nervous about being gone.I have never left them before. I have been holding it in because I don't want him to know. Were other kids scared to go? Did you stay in the room with them the whole time? I have never taken him to a psychiatrist.

Michele

 

 

Michele,

forgive me, I can't remember, where did you have these tests done so far, and what is it called? Is this for viitamin deficiencies? Did you do this through a doctor or on your own? sorry, I'm not thinking clearly today, was it through Pfeiffer?

 

Faith

[faith]

Michele,

I think your son is young enough to not really have to know the whole picture and I think the professionals are used to dealing with children and will make it easy on them.

 

I really must say I wish I had it as together as you do. I truly admire how you managed to get these tests and appointments and with three other children to take care of..........I wish I could have some more comprehensive tests done, but I don't know if I can justify it to my husband, we are already spending so much on the naturo appts. and keeping his supplements replenished. I am feeling a little low right now because I am beginning to feel like I'm losing my confidence in all that I am doing. My son's teacher has noticed his little sounds and we are already having to once again revisit the possibility of the 504 plan for him. I will probably post about this soon....I'm just so down.

 

I really hope something is found in all the tests that will shed some light on your child's issues.

 

Faith

[michele]

I know what you mean. Today I was driving down the street and I started thinking about telling Andrew's teacher where we were going and I just started crying and I couldn't stop the tears. You do have it together. You are constantly searching for help and that is all we can do. I know what you mean about costs too. Yesterday I about cried when the insurance nurse said she would add the DAN Dr. on for three months to my PPO so I could see him out of network. We try to do everything for our kids. My husband asks questions too like why are you seeing this Dr. I thought you said the DAN Dr. was the one you wanted.I just went ahead and made the reservation. I know it is an added expense but in the long run if it makes a difference it will be worth it. I think Andrew is doing good at school. It helps his teacher is a laid back man who has ton of patience. Andrew is liking it. The bus driver said he is loud but he seems better since we talked to him. We watched a video in his class of fifteen minutes. He was pressing his hands to his face several times. At least they are healthy otherwise. Get your son the help he needs at school. I am an elementary teacher and a 504 plan will make the school accountable he gets the best education to meet his needs. It will make the school accountable. You are a great mom and the way you help others here is a testimony of the love you show! God bless you.

Michele

 

 

Michele,

I think your son is young enough to not really have to know the whole picture and I think the professionals are used to dealing with children and will make it easy on them.

 

I really must say I wish I had it as together as you do. I truly admire how you managed to get these tests and appointments and with three other children to take care of..........I wish I could have some more comprehensive tests done, but I don't know if I can justify it to my husband, we are already spending so much on the naturo appts. and keeping his supplements replenished. I am feeling a little low right now because I am beginning to feel like I'm losing my confidence in all that I am doing. My son's teacher has noticed his little sounds and we are already having to once again revisit the possibility of the 504 plan for him. I will probably post about this soon....I'm just so down.

 

I really hope something is found in all the tests that will shed some light on your child's issues.

 

Faith

[Guest]

I just wanted to mention that you can have Pyroluria and still have zinc levels within the reference range. I had zinc within the reference range, but still had Pyroluria.

 

Kim-it seems like I asked this question(about how you can have Pyroluria with normal zinc levels) or a similar question on biochat one time. It could have been a different question though as it's been quite a while.

 

Carolyn

[kim]

It's funny you would mention biochat. My youngest son, who was not on vits at the time, had a level of 76, which was at low end of normal ref. range stated. It was a biochat Dr. who first said to get it up to at least 90 to 110, I believe. That was not in relationship to Pyroluria, I just gave the background of tics and gave the info on his current (at that time) zinc level. I think that was a very general answer with the info he was given.