blood work

[michele]

I had my long talk with the DAN Dr. DeMio over the phone today. I have to call his secretary tomorrow to get the specific names and print outs of meds. Wow, I feel very overwhelmed at the direction he wants us to go now. First the Pyrrole Disorder he wants him starting on 25 then 50 , then 75 and possibly as much as 100 mg of zinc picolinate. Increase every three days. Start with B 6 (? amounts) and if needed add P5P. Treat amonia by supporting the liver with vit C and coke U 10?. 75-100 mg. 20 billion probiotic a day chewables like Kirkman. Supplementation with amino acids. Give taurine seperate in higher amounts start at an eighth a dose on an empty stomach. Also seperate 5HTP 25 mg. Hold the Coremega for a few weeks then add GLA at 300 mg. twice a week. Give TMG. Vitamin A seperate in a tiny drop. For antifungal give nystatin, and MCT oil Then in a month chelate for heavy metals. He was upset I stopped the Actose. He said it is very good for autoimmune and in five years he predicts it will be given for it knowingly. In time from the Actose he had hoped he could go off antibiotics. Okay, does this seem extreme to anyone else. If I do all this like Emma said how do you know what is working? Also, he said many kids never outgrow this autoimmune problem and have it all there lives in the form of tics. Great news huh? Any takes on anything. I am open to your thoughts. Confused and depressed.

Michele

[emma1]

Oh Michelle! I have been complaining that my doctor has so little supplement advice -- but this doctor sure doesn't have this problem, does he?

 

His statement that PANDAS is life-long is very, very depressing indeed. I feel very good right now because my daughter is doing well, but last week, when she was off the antibiotics and the tics/ocd came back full force, well that was so disappointing. All I had read seemed to say that this would eventually go away!!!

 

My initial reaction is that it is too much too fast. I had my daughter taking a little cupful of pills, and then without the antibiotic, she was taking a little cupful of pills with no good results! I didn't know what was helping and what was not.

 

I believe that someone here has said not to use zinc picolinate -- I remember because I read it right after I had bought it and opened it -- I will try to find it for you if I can. (zinc is good, just not the picolinate form)

 

B6 sounds reasonable -- though I have been reading that P5P is now preferred by some as being "more available" for use in the body. GLA I think is omega 6 -- so there is that whole issue.

 

The nystatin is for a yeast issue I guess? My concern with using that was having symptoms of die-off (increased tics and ocd) and then not knowing whether my other supplements were working.

 

If doing all of this works, and gets your little boy healthy -- that would be fabulous, though. I am just such a chicken. My daughter is in high school, and has such an active social life, I hate to do anything that is going to even temporarily increase symptoms or make life harder.

[Mike]

Also, he said many kids never outgrow this autoimmune problem and have it all there lives in the form of tics. Great news huh? Any takes on anything. I am open to your thoughts. Confused and depressed.

Michele

 

While "many" may have issues throughout their lives, all the articles I have read say TS symptoms usually get much better in late teens years. Anyone have any figures? Hes just one DAN Dr. I wouldn't take his opinion too heavily.

[kim]

Michele,

 

The coke u 10, is Coenzyme Q10 (CoQ 10). Just google it, and you can see what it is used for. Many feel that this is a really good supp. Probably something many of us could benefit from. It is not cheap, though.

 

Do you have any idea, what your Dr. is basing the chelation recommendation on? Did he mention any test that indicated a heavy metal problem? Was aluminum mentioned in relationship to strep, or EDTA (sometimes used to chelate aluminum)? Does he feel, mercury/immuniztions were part of the problem?

 

I read the link that you provided for your Dr. Since he speaks at conferences, I felt like you are lucky to have found such an involved DAN. It worries me, that there are some, that just have a minimal understanding of all of these issues, and still "treat" kids. So many people are working on this puzzle, but there are many many unknowns at this point. I think the phrase "first, do no harm," still applies, and if you are not comfortable with something, don't do it, until you are! I would print an article, that spells out some of the concerns or side effects of Actos, and point blank, ask him, how long he has been using it, in children, and what makes him comfortable with it. How many children has he seen, with PANDAS type symtoms, remit, with the use of Actos. Just suggestions.

 

Hey, I have been doing some reading on Azith. I think I have a little idea on it's modulating effects. BUT, as usual, I can't leave it at that, I have to dig into stuff, that I don't have a prayer of understanding, so I will post it on a seperate thread, as soon as I'm sure that I can confuse everyone else too!

 

Deep breaths., and one step at a time Michele. Way to go, with trying to find the best help available for your son and helping all of us in the process, with your posts.

[itsme]

Hi Michele,

 

While we're not all on the same boat here, we are all in the same ocean. We felt like we were going to sink with the boatload of information we received from our dr. 5 months ago!! However it did greatly help our child and looking back (always so easy) it was well worth the effort.

 

We will (like many here) have to follow a certain protocal, No artificial anything, limit carbs, supplement, ect.... but if it helps, the boy is happy and healthy, ticcing greatly decreased.... than the other stuff is just details. However, i can relate to your being overwhelmed. But i beleive you'll adapt as God's grace will be sufficient to meet all your needs, and he will not leave you nor forsake you. Also, we are always here for you to help you through the process.

[ad_ccl]

All the info I have read on PANDAS indicates it is a pediatric illness and will be outgrown! The neuro we saw a last week talked about the worst time being between 9-11 for PANDAS patients. All the doctors I have seen have indicated they believe he will outgrow it and eventually his immune system will manage himself - the same as rheumatic fever. They all seem to think we will be on antibiotics until he is well into his teens. I have read many posts over the years - and when people do come back to post they are saying their kids are so much better - that is Ronna's experience - with her now 11 year old - and also mine with my now 9 year old.

I would take it slow with the vitamins - add one at a time - then wait a few days - and see what your child can manage - I know at times in the past I was giving so many vitamins and my son would periodically say he wanted to stop taking them so I let him - we would find tics coming back after a week or so and he would ask to start taking them again.

 

Good Luck!

[emma1]

Michele, I was looking on the Kirkman Labs site (I had spent three days looking at liquid vitamins on iherbs only to have my daughter nix taking a liquid -- so I was checking out all of their different multivitamins) and see that they have a lot of the different supplements that your doctor was recommending. For most, they have a pretty good explanation of why you would use them, side effects, recommended standard doses, etc. It might be a good resource to check out.

 

Have you considered calling or emailing or faxing the protocal to Dr. Murphy and see what she thinks? I know most/many doctors don't know a lot about supplements, but I would think as she has dealt with so many PANDAS patients she might know more than most. Surely, she has a patient that has tried these alternatives. (Now, I do realize this is so individualized that what helps one won't necessarily help another.)

 

I just keep thinking of my daughter last week. I had her on several different supplements, had cleaned up her diet, and had cleaned up our environment, and -- without the antibiotic -- well, we were not in good shape. Now, I do believe in the "bucket" theory somone proposed here -- basically, that too many affronts to the body's systems occur and then tics happen -- if you can lesson the affronts, the tics may lesson as well.

 

But, I am here to tell you, for us, right now, it is night and day off/on antibiotics. We haven't used zithromax, which is supposed to be immune modulating, so I do not even begin to understand why the antibiotics are working.

 

I am befuddled because my daughter is so old (16) -- could she just now be showing signs of allergy/sensitivity, yeast, toxic metals? Could she have pyroluria? I guess anything is possible. During times she is having significant symptoms, I am ready to try almost anything. And then we have a week like this, where even I am not noticing anything, and I wonder -- if it is pyroluri, or toxic metals, or yeast, or allergy contributing to the tics, why do the tics/ocd go away with antibiotics?

 

I wanted to say one more thing about the Kirman probiotic. It has a "good" strep bacteria in it -- check the label. When I asked my doctor about that, he (who is just the family doctor and not a PANDAS expert) said that there was not enough research and so, in his opinion, as there were other options, he would use the other options, as there may be no "good" strep for PANDAS kids. You might ask your doctor before you start them though, because unless he deals with a lot of PANDAS cases, he may not even be aware of the strains in the product, and for most, the strains would be fine. Perhaps someone else can chime in here, because as I said, this is just one doctor's opinion.

 

Michele -- sorry -- once again raising more questions than I am answering!!

[michele]

I was wondering, did your child's tics and OCD completely go away with the antibiotics? We have not seen a complete recovery this time. He started repetitive movements end of July and they have been present to some degree every day since. His emotional behaviors are improved though. The urine toxic metals blood showed alot of unusual heavy metals present at similar levels that would not all be there at the same time if his body was ridding them properly. The pattern is unusual and shows he is not detoxing them. He thought the red blood cell elements were underspun. He was low in zinc. Magnesium seemed fine so he does not want us to supplement it. He thinks vaccines played a big part in this along with metal fillings I have in my mouth from pregnancy. He guessed that I have more then five which is right. He even recommends the actos for me with rheumatoid arthrits. He said his microbial panel blood work shows high yeast and he would feel like a person who is intoxicated, foggy and distorted. We can vouch he often acts like someone on alcohol. The IgG subclass four showed his regulatory affairs were not working as well as they should. In this kind of test it gives a range and not a report of titers individual just total numbers. His amonia was high and his liver was good. Taurine was low and tryptophan was low. His carbon dioxide was low. He said this shows metabolic isues. Although just treating the pyrolle may show major improvements. He said his condition is not typical and is complicated to treat and involves a very specific regimine that other Dr's would not attemp to look at all the pieces. I guess he believes in treating all these small parts to make improvements in the large picture. I am with you at trying one at a time and taking a step back and watching for results. I have been half tempted to stop everything and look at how he does unmedicated. Like Emma said, it is hard to know what a difference the supplements are doing. What if he doesn't need the antibiotic daily? What if he has tics and the antibiotic will not help that? I am questioning everything I am doing and it really is difficult.

 

We went to OT today. Hopefully that will be an easier step to manage. He was delayed in core body strength movements which would explain the inability to ride a two wheeler. and crossovers and transfering in fine motor like making a t or cutting out a circle. Plus he doesn't press hard enough to be seen. Also his tics toes, and fingers cracking were terrible during the therapy. Why aren't they going away with the antibiotics?

 

Since I wrote the beginning part of this I called Dr. DeMio's secretary. Here is the complete list. I think I will start zinc picolinate only at first to see if there will be a change.

vit a, vit d, coq u ten, probiotic, GLA, taurine, trytotan 5HTP, mct oil, vit c plus compounded amino acids, and nystatin. I am going to wait to research these things before buying them. Of course they can send them to you.

 

Sorry this is so long but I would love to hear what others here think. I couldn't even sleep last night. He keeps having to pee and is cracking so I just feel like why would he be worse when I have been trying to help him more.

Michele

 

 

 

 

 

 

All the info I have read on PANDAS indicates it is a pediatric illness and will be outgrown! The neuro we saw a last week talked about the worst time being between 9-11 for PANDAS patients. All the doctors I have seen have indicated they believe he will outgrow it and eventually his immune system will manage himself - the same as rheumatic fever. They all seem to think we will be on antibiotics until he is well into his teens. I have read many posts over the years - and when people do come back to post they are saying their kids are so much better - that is Ronna's experience - with her now 11 year old - and also mine with my now 9 year old.

I would take it slow with the vitamins - add one at a time - then wait a few days - and see what your child can manage - I know at times in the past I was giving so many vitamins and my son would periodically say he wanted to stop taking them so I let him - we would find tics coming back after a week or so and he would ask to start taking them again.

 

Good Luck!

[faith]

Michele,

thanks for posting the recommendations of the DAN. As I was beginning to read, I was wishing our doc had done these more in depth tests and supplements, our visits were one step at a time as he likes do start with the most non-invasive. I know it seems a little overwhelming, but I would just start one at a time and wait a week before starting the next. I would have no problem with the zinc and P5P since you know about the pyroluria--large amounts are usually prescribed for this. I'd do that first and then start the other things. It doesn't seem any more than we are all giving, at least you have a guidance on this, some of us are shooting in the dark with some supps.

 

So I guess you have conflicting opinions about the actos, but it is supposed to be for autoimmune diseases, and if this pandas is what you are dealing with, then maybe it could help in your child's case. You may want to do more research into that to feel comfortable, although don't know if there is alot out there. I think what that is ultimately supposed to do is repair the myelin sheath of the nerves that is believed to be broken down in autoimmune diseases, i.e. diabetes.

 

how do you feel about the chelating metals? Did he say how they do it? I'm sure the same as ours with DMSA. I am thinking of asking him to persue that further on our next follow up visit in November, but of course, scared to death of actually implementing this. He has not done the metal testing, we had that with our naturopath (via doctor's data labs, I think).

 

Don't fret, you are way ahead of the game and now you have a plan. To me, it sounds like he is quite knowledgeable and has a real clue--doubt you'll find that anywhere else. As all said, one supp at a time, and I'm sure it will all work out. Good Luck.

 

Faith

[bmom]

Michelle,

The DAN Dr. your son is getting help from- Dr. Demio: Did you have to initially go to his office or has everything been phone consult? What about the tests? Could one do phone consults and tests from their town or do you have to travel? And could I ask on the cost of all the tests? If you could tell me a total of it all and if insurance covered any of it?

[emma1]

Michele, I just picked up on your mention of arthritis -- it is an autoimmune disorder, right? I ask because I also have an autoimmune disorder. And PANDAS is autoimmune. Do you think that is all coincidence, or perhaps autoimmune disorders run in families?

[bmom]

Michelle- one more question. I believe you went to Dr. Murphy also along with the DAN Dr. Did she also run all of these tests and which Dr. did you find more helpful? It sounded to me like Dr. Murphy didn't suggest supplements aside from Omega 3. Correct? or were they both helpful?

[michele]

You are right. Dr. Murphy did discuss PANDAS and was good in that she confirmed he had all the PANDAS history and symptoms. She wrote out recommendations which were helpful in getting local Dr.'s to call in scripts for stronger antibiotics during flares, swabbing our throats during flares, she wrote out a script and stressed the importance for OT as an immediate thing I could do to help him. She did recommend Omega 3's higher EPA then DHA. and a multi vitamin. She said Monolaurin was fine and NAC. . She told me his tics were not bad enough for psychiatric drugs and encouraged me not to put him through things that might bring him more harm then good. However she did not run labs but swabbed our throats. She did read my labs from Dr DeMio.She did not respond much to them. Dr. Demio is more about taking action now and finding the reasons why things are happening. The neurologist is like Dr. Murphy and he is a tic specialist he says lets wait and see. He never writes scripts. He says time will tell and so now what is the question? I don't want to push drugs but I also don't want to wait until he gets worse with each exposure. I think that is what may have happened. Before the tics went away with time and now they are not maybe from repeat damage to the basal ganglia.

 

Emma I have Rheumatoid arthritis. I've had it since I had Andrew in 2003. It is common according to Dr. Murphy for PANDAS kids to have autoimmune mothers she especially notes it with lupus.

 

I am very scared about chelation. I do not want to cause him anymore problems and don't want to risk him getting any worse. I will read up on it.

 

Labs were about $700. The follow up labs appointment I chose to do from home and it was $200. You can do all apointments over the phone if you'd like.

 

I did the initial appointment in his office with Andrew. It was about five hundred. I paid in cash. I have since gotten insurance to allow him for three visits in three months based on metabolic needs and no providers in the area who are covered. Some labs were covered. I paid pyrrole and shipping tests about $100. Insurance says I still owe on labs about $300. I will wait and see if they pay more of it. I am yet to see any reinbursement money.

Michele

 

 

Michelle- one more question. I believe you went to Dr. Murphy also along with the DAN Dr. Did she also run all of these tests and which Dr. did you find more helpful? It sounded to me like Dr. Murphy didn't suggest supplements aside from Omega 3. Correct? or were they both helpful?

[tlkinser]

Hi Michele,

I wanted to let you know that I've been following your updates on Andrew and am thankful that you are taking the time to post so much info that the rest of may benefit from. I haven't posted in a while, but I've been keeping up with everyone and am more confused than ever, but also more grateful than ever for the wealth of knowledge here. We are getting the results for my son's biomedical testing next Tues. It feels like I've been waiting for this day forever... it took so long to get all of the tests done (blood, stool, urine, saliva, hair). I am so nervous that the results will not show anything in particular to be a problem, OR that it will show everything to be an issue and we will have to go back to struggling with a very restrictive diet and environment. Either way, I am very anxious and can't wait to reach this next point in our journey.

 

I found the talk above about the mother's autoimmune illnesses playing a part in the PANDAS dx. I have a blood clotting disorder that required me to take blood thinners and 81 mg of baby aspirin daily during all of my pregnancies. While I don't have lupus, I do test positive for anticoagulant antibodies and lupus anticoagulant and was told this is an autoimmune disorder. Then again, my dh has recently remembered having tics as a child (minor such as eye blinking or a head shake once in a while, sometimes a quiet hum under his breath; nothing like the loud and constant vocals my ds has presented with since last spring during his strep). So, I guess in some way, we may have both contributed to our children's illness and tics. (My 6 yr old dd also struggles with tics and tested + for strep when they exploded with her last spring. Her tics are not as obvious and are less severe than my ds, but I am terrified that they will get worse in the coming years.) My children didn't stand a chance, did they? LOL. This is all so interesting (and frustrating, heartbreaking, unfair, scary, etc.) I still don't know if my children have PANDAS or TS or transient tic disorder or WHAT?!

 

On a separate note, my ds has 2 staples in his head because he banged it into the corner of the wall while crawling around and rubbing his forhead on the carpet last week. He really likes to feel pressure on his head and my dh and I know in our hearts that this "accident" was due to his tics/PANDAS. His lack of fear for anything dangerous and his clumsiness (sp) scares me to death!

 

I have rambled, but just wanted to let you know that I am keeping up with you and Andrew via your posts and keeping you in my thoughts. I will let you know what we find out next week about my 5 yr old son. Bless our little guys! Best wishes to you all.

 

tlk

[emma1]

Michele, I am so sorry that you and your son are going through all of this. It is so hard and confusing. I so know the feeling of being awake at 2 AM trying to sort this all through. With our case, I was in denial for a while, as was my daughter. We just kept going on like nothing was happening. Finally, I spoke to the doctor, and we did the strep tests because the onset was so sudden. She first took amoxicillin, and did pretty well, but still had some minor symptoms. Still, I was pretty pleased. Then, suddenly, I noticed more symptoms while she was on the amoxicillin, and my heart sank. I then learned that her best friend had strep. I called the doctor, and discussed the situation, and he decided to keep her on the amoxicillin for another 10 days. Within a day of her friend getting treated, my daughter was better again. We then tried it without antibiotics (but with other supplements). For the first couple of days, it was all good. Then, I thought I noticed more symptoms. By the time she had been off a week, well -- it was not good. This time I asked for the antibiotics you had mentioned. I ended up with augmentin. As I said, within an hour there was noticable improvement. I am almost afraid to say it, but right now, it is all good -- no tics at all, and I only noticed two very minor ocd things in the last seven days. I wish we could stay on this, but I don't think that is the plan.

 

I find that when my daughter is doing well, I am very logical and calm, and listen to what people are telling me, and try to be very conservative and analytical in how I approach my daughters treatment. But, when the symptoms are bad, I freak out and would do just about anything to get them to stop. Not good, I know.

 

I stopped everything now except for the antibiotic and her allergy med. I was beating myself up for going too fast -- my doctor advised to go slowly so I could try and tell what would work. But, he also said that sometimes something will initially help (perhaps because the body needs that supplement) and then later will not (because the body is no longer deficient in it). Or, you may tolerate a supplement for a while, and then suddenly develop a sensitivity to it. So, basically, if you go slow, and watch carefully you have the best chance of figuring out what is working -- but even that doesn't guarantee success.

 

You are such a good mother trying all of these different things for your son!