DAN Dr.and PANDAS

[michele]

We finally have our long waited for appointment with a DAN Dr. biomedical MD Dr. Demio tomorrow. I am starting to freak out. Should I cancel this? We are already giving supplements Vit, probiotics, fish oils, calm, and on Penicillin V. Yes, he is still having a wax cycle right now. I know this appointment will be very expensive and out of pocket. Will a DAN Dr. be against antibiotic therapy? I read his bio and he mentions getting away from prescription antibiotics and getting into more natural healing approaches. I don't want to change from the Pen. and meds I have already bought. Has anyone ever heard of a DAN Dr. working with PANDAS? He mentions it on his bio. His nurse says he is wonderful. I have tried to get into Florida Shands with Dr. Murphy. It could be a wait. I am a stay at home mom with four kids. Going back to school is a very expensive time. I don't want to spend any extra money then needed. I think my husband is already stressed enough over providing for all of us without any extra medical bills. Any suggestions? Are these biomedical Dr.'s worth the cost?

Thanks,

Michele

[faith]

Hi Michele,

I'm glad you have found a doctor who may be able to guide you on the PANDAS issue -- are you doing this for a second opinion? What type of doctor gave the penecilin v? I think you should keep the appointment, just the get an expert opinion, and it would be good to have a DAN doctor when you are dealing with these issues, a regular MD is not really going to offer that much guidance. You tell him what your concerns are and what you have done so far, he should be able to take it from there.... Did they tell you how much the visit will be? When we have our appointments, it is covered, I think because our DAN is an environmental allergist and that is how we went in, as an allergy patient, but I did tell the doctor what our concern was (the tics). The blood tests and allergy tests were covered and they did do the titers. We do pay for any supplements we get from him out of pocket tho.

 

I think it will be good to check out what he has to say.

 

Good Luck,

Faith

[michele]

We went to the biomedical DAN Dr. today. Yes he was very detailed and spent hours on discussing Andrew's issues. He completly believes he is having a case of his immune saystem attacking his brain.This is causing a war against the good not just the trep or viral. Also he discussed low estrogen levels in boys and not to give acetominophin only Motrin. He said these kids that are at risk for neurological trouble should not get all these vaccines. They are endangering his immune system. He wants us to do a gluten, casen free diet. He wants us to avoid sugars, corn syrups, dyes and artifical colors. Also to try the medication Actose. Has anyone tries it for Autism or autoimmune trouble. Commonly used for diabetes. Helps against the white blood cell attack on the brain. He has ordered a lot of labs including, Comprehensive metabolic prophile, fasting lipids, T3,4,TSH,FTI, rT3, Ceruloplasmin, CBC diff, and plat, Serum Phosphate, Serum magnesium, Ammonia levels, stool clostridrium difficile enterotoxin, IgGAME, IgG subclasses, strep culture, Kryptopyrrole urine quntatative streptozyme, fasting plasma amino acids, anti- mylin basic protein antibodiesGlycoprotein, He believes he is having GI tract trouble and mineral deficiency. Here are some supplements he suggested. Lithium Orotate (low dose)for moods, GABA Solgar capsules for calming effect and mood, Folinic acid or liquid b-12 for calming, TMG for brain calming methylation, Taurine calming detoxifier, and AFP Peptizyde for digestion with use of Actose. He said to continue Penicillin and vitamins, fish oils and probiotics as we had been giving. This seems like alot. I was wondering if anyone has feedback on any of the supplements or treatments he has suggested. It is alot to absorb. He gave me a number of a nurse to call names Angie Shoemaker. Everything was written out very well. He suggested getting started on the Actose right away with the AFP and the diet. Has anyone tried any of these things? How do you get started on this kind of diet?

Michele

[faith]

Michele,

Glad you went for the appointment. It's good to hear what this doctor is saying about the immune system. Boy, that is alot of tests, we did not have that many. Forgive me, I'm not clear on all your son's issues, its not just the tics, right? does he believe there is autism or just the ADHD?

 

Regarding the Actos, our DAN had suggested this for us on one of our visits, after we had the CBC, etc. and tried some supplements and elimination diet. Your doctor sounds alot more thorough, although I am guessing mine went a little slower, because, as I said, we did not pay the visit out of pocket like those on the autism spectrum do (I believe it would have been $750.00 for the consult visit). So I think we just took it one step at a time and did the tests that would be covered under allergy? Well anyway, yes, our doctor tried to explain about the autoimmune response and how the actos worked on repairing the myelin sheath, and I did do some research, and did start a thread on this which you could read, but in the end, I decided not to go that route yet.... We did do the elimination (GF, etc. diet) in which he gave us a written out plan of what exactly to avoid and what is okay. You will have to go to a health food store and get some items to start you off. Its not very easy, but we managed to comply 100%, and if there will be some benefits, you should see it within a month, I think. There was nothing dramatic for us and so I felt I wanted to see what the naturopath had to offer before I agreed to the Actos, and wanted to have the Igg tests and metal tests done first, which we did through the naturo as our DAN did not believe in the Igg testing (he believed it was not accurate) and have since followed that route. The naturo agreed about the Actos because it was a medication (used for diabetics, I believe) that we should go another route first. I'm still not too clear on how of if this is right for TS. I'd be interested to know what your feelings on this and the other things he suggested are.

 

here is the thread on Actos that we discussed on the board.

 

http://www.latitudes.org/forums/index.php?...72&hl=Actos

 

 

Faith

[michele]

Those are some great articles. Very helpful. I looked all day and couldn't find those relevant articles Kim found. Yes Andrew has some tics and compulsions Plus very ADHD. This is brought on by an immune reaction to the strep thought to be in the brain. PANDAS. His body is at war with the good matter in the brain too. I want to be proactive. I have really seen a decline in his behaviors over the past year. It is as if with each infection a part of his brain is damaged and some never seems to improve. I am scared and want to get him all the help I can. Dr. Demio seems to be a leading expert in the field of DAN. He has an autistic child. Andrew is not autistic but his behaviors/neurological symptoms are in the autiistic spectrum. I am worried about implementing the diet. It seems like alot to go sold turkey on. How do you get started? What are staple foods GFCF? I don't want him to snack but to be able to prepare meals for him. Thanks again for your support.

Michele

[kim]

Michele,

 

I was wondering if you have decided to go ahead with testing?

 

I was following a thread this morning on another forum about the genetics and what part it plays in ASD's (autism spectrum disorders) and it made me think about your post and the Dr. ordering the anti-mylin basic protein antibodies test.

 

If/when you do have testing, I hope you will post results.

 

This article talks about this a bit

 

http://www.healing-arts.org/children/vacci...to-immunity.htm

 

I hope Andrew is doing well.

[michele]

Thanks Kim for the interesting article. Yes I am going ahead with the testing. However, I am taking Andrew to an outpatient lab.

One of the testing kits from Great Plains Lab has not came to my house yet. RBC Metals I believe. I was waiting so we could do it all at one blood draw. I am not sure what the bood work was ordered to reveal or not reveal. That is why your reply was so helpful. I pray he will go over the results. If Andew is going through all of this I want some follow-up. I have started a fourth of the Actos pill a day and the Natural Lithium and the AFP. I pray I am doing the right thing. Andrew is coming down with a cold as is my other daughter today. I hope it does not make his tics worse. We received his K teacher yesterday. He will be understandng and patient with him. I have not talked to the school yet about his trouble. It breaks my heart he has to start school during this waxing episode. I did call Shands again today. No appointment yet. He is still waiting for Andrew's files which were supposed to be sent last Mon. We are trying the GFCF diet and Andrew is mad and not liking it. He likes junk food like donuts and is angry. I will try to get him GF donuts. He has not liked much GF yet. He is already way behind in weight and height for his age and I hope he doesn't loose more weight. Also I came across a supplement in an article by NIMH on PANDAS that recommends NACETYL glucosimine. Have you heard or tried it yet? I also have R Arthritis and want to try it. Thanks alot for your warm response. It means alot. God bless.

Michele

 

 

 

 

 

 

 

 

 

 

Michele,

 

I was wondering if you have decided to go ahead with testing?

 

I was following a thread this morning on another forum about the genetics and what part it plays in ASD's (autism spectrum disorders) and it made me think about your post and the Dr. ordering the anti-mylin basic protein antibodies test.

 

If/when you do have testing, I hope you will post results.

 

This article talks about this a bit

 

http://www.healing-arts.org/children/vacci...to-immunity.htm

 

I hope Andrew is doing well.

[kim]

Michele,

 

I know how confusing those tests can be. Without scrolling back up, it looks like he is testing thyroid (all the the TH3,4 etc) lipid (cholesterol and triglycerides) and this one, you might want to read about....Kryptopyrrole. I think you have mentioned that Andrew is small. This test can show zinc (can be related to "stunted" growth and it seems many kids with these types of disorders are low on zinc) and B6 deficiency.

 

http://www.kryptopyrrole.com/

 

Heres a link on C diff

 

http://www.cdiffsupport.com/aboutcdiff.html

 

Just keep learning. It will all start to make sense.

 

I know how hard school is when your dealing with all of this, but remember, there are many many children with issues and it's much easier when they are in the lower grades. Kids at that age are so accepting and I really don't think they notice (or dwell on) differences much at all. I only wish I would have been able to get started on the things you're doing when the boys were that young.

 

Michele, you mentioned Andrew loves donuts. Does he crave sweets or have a limited diet?

[faith]

Kim,

Have you ever had the pyroluria testing done? And do you currently give your boys zinc or B6? I recently asked my naturo about it and was a little surprised that she didn't seem to be familiar with that, but she did agree that he may need zinc. She did say I could order the test and she would guide me on it, but also gave us some zinc 25 mg. and a B6 (P5P) to try. What do you think? I probably should have done this long ago, my son is still pretty skinny for an 8 yr old (43 lbs, 48 inches tall).

 

Thanks

Faith

[michele]

I have the Dr. order for the Kryptopyrrole. I have to order it myself. We went today for the blood draws. Andrew was so freaked out he ran out of the place and down the sidewalk and around the building. He got about ten vials drawn. He is really small. He does crave sweets. He lives on junk foods. Today I had to turn away from a pretzal at the mall when the others were getting it. I felt bad. I bought another Webkinz for him after the tests. My husband said I am feeding his obsession. My husband does not understand the bloodwork and does not like the fact alot of this is out of pocket. He has never expressed an interest or worry about Andrew's trouble. Maybe if he was more involved he'd understand.

Michele

 

 

 

 

Michele,

 

I know how confusing those tests can be. Without scrolling back up, it looks like he is testing thyroid (all the the TH3,4 etc) lipid (cholesterol and triglycerides) and this one, you might want to read about....Kryptopyrrole. I think you have mentioned that Andrew is small. This test can show zinc (can be related to "stunted" growth and it seems many kids with these types of disorders are low on zinc) and B6 deficiency.

 

http://www.kryptopyrrole.com/

 

Heres a link on C diff

 

http://www.cdiffsupport.com/aboutcdiff.html

 

Just keep learning. It will all start to make sense.

 

I know how hard school is when your dealing with all of this, but remember, there are many many children with issues and it's much easier when they are in the lower grades. Kids at that age are so accepting and I really don't think they notice (or dwell on) differences much at all. I only wish I would have been able to get started on the things you're doing when the boys were that young.

 

Michele, you mentioned Andrew loves donuts. Does he crave sweets or have a limited diet?

[kim]

Michele,

 

I'm sorry I didn't warn you to give Andrew lots of water before that kind of a mega draw. I wonder if his arm ached? My youngest son is pretty tough, and he said the aching in his arm was pretty bad after a 10 vial draw. Then, a parent here told me about drinking water prior to, helping, and I have read that several times since.

 

Boy, your "pretzel" remark really hit home here! Sugar cravings too. Could you give me any specifics about his diet? Did his eating patterns change over time, or was his diet like this from the git go? Does he limit protein containing foods?

 

There was a BIG thread on an autism bd, titled something like "what's up with McDonalds french fries" You should have seen how many people were posting about their child wanting those fries!

 

About hubby, I think many (not all) men are "action" guys. They are not the thinkers or planners. This is true of my husband. One thing that really helps is to point out behaviors, if Andrew reacts negatively to something like a red slurpee, or a Sunday morning donut and chocolate milk. It even took me a while to see this. I was always watching for tic increase. I failed to notice that my guys behavior deteriorated. I guess I will just say "noncompliant."

 

When you point that out, he may get onboard a little more quickly, again, if this is true in your son's case.

 

Hang in there Michele, this all gets easier as you go. Prayers are with you and all of our members, old and new!

[michele]

Andrew did well after the blood draw. He had a little bruising but seems to getting used to it. He had to fast before thw blood draw so he had no water prior to.

 

He likes sweets like donuts, sugar cereals, fruit snacks, cheeseburgers, fries and chicken nuggets, hotdogs, fries and candy. He likes soft drinks too. He eats very little vegetables or fruits. I think he has eaten this diet for a few years. He never ate alot of bread though although he is missing his buns on his cheeseburgers and hotdogs. Fast food like Burger King and Mc Donalds has become a compulsion for him. It seems more about the toys then the food.

 

As for my husband I think he is not on board on this because of the money it is costing and the fact that he is in denial. He comes from a family of perfectionist. They never admit or see any faults in their own children or grandchildren only their horrible daughter-in laws. I notice his brothers' compulsively cracking their knuckles and chewing their fingers but his parents would never agree to any of this. My husband and most of his family have ADD and depression but they don't speak about it. In fact I think my husband is compulsive about saving money and he worries about it nonstop. I am a talker and find comfort from sharing things with others. He is not a good sounding board for me because he chooses not to discuss things. Thanks for listening to me ramble.

Michele

 

 

Michele,

 

I'm sorry I didn't warn you to give Andrew lots of water before that kind of a mega draw. I wonder if his arm ached? My youngest son is pretty tough, and he said the aching in his arm was pretty bad after a 10 vial draw. Then, a parent here told me about drinking water prior to, helping, and I have read that several times since.

 

Boy, your "pretzel" remark really hit home here! Sugar cravings too. Could you give me any specifics about his diet? Did his eating patterns change over time, or was his diet like this from the git go? Does he limit protein containing foods?

 

There was a BIG thread on an autism bd, titled something like "what's up with McDonalds french fries" You should have seen how many people were posting about their child wanting those fries!

 

About hubby, I think many (not all) men are "action" guys. They are not the thinkers or planners. This is true of my husband. One thing that really helps is to point out behaviors, if Andrew reacts negatively to something like a red slurpee, or a Sunday morning donut and chocolate milk. It even took me a while to see this. I was always watching for tic increase. I failed to notice that my guys behavior deteriorated. I guess I will just say "noncompliant."

 

When you point that out, he may get onboard a little more quickly, again, if this is true in your son's case.

 

Hang in there Michele, this all gets easier as you go. Prayers are with you and all of our members, old and new!

[kpt]

Hi Michele-

 

I hope you hang in there with all of the changes you're having to make The GFCF diet is really hard- I had Jack CF for about 6 months with no noticeable change at all, never made it to totally GF- but I wish I could have stuck it out. I had very little support from family members- it's sort of hard to get your child gluten free when your husband comes home with a donut or soft pretzels as treats for the kids! There are some enzymes that can help with small slip-ups, but that's when you are already following the diet. Do you have a Trader Joe's near you? They have a list of GFCF foods in their store- it's actually quite long. Kinnikinnic is a brand I've heard good things about- you could do a search online. George's makes a good GF brownie, and Van's makes really good mini-waffles- my boys both prefer the GFCF version to the regular ones. Ian's has good chicken nuggets, too. Check out Autism Web's forum (www.autismweb.com) for some good tips on following the diet, including a 10 week plan to ease yourself (and Andrew) into it. Just do a search and you'll come up with all sorts of info!

 

Good news- McDonald's will sell just the toy! I think it's $1.50, but that could save you some headaches down the road. Maybe a good motivator to try some new foods.

 

Good luck with everything and I hope you see some improvements!! I am also stressing about the upcoming school year and hoping that a new batch of kids will e accepting of my guy and his differences.

 

Take care!

Kristin

[michele]

Thanks for the gluten free tips. We will continue to try it. Today at the pool he had a meltdown when I took away the bun from his hamburger. He really cried. Finally he ate the patty with ketchup. Then I got him chicken fingers that were broiled. He ended up liking them. It is hard on him and me to take away things he likes. I hope it works. Yes he likes the toys at Mc Donalds because he wants to collect them all. I will have to try getting the toy only! Yes I hope they have a good school year too and teachers that are understanding. Blessings.

 

Michele

 

Hi Michele-

 

I hope you hang in there with all of the changes you're having to make The GFCF diet is really hard- I had Jack CF for about 6 months with no noticeable change at all, never made it to totally GF- but I wish I could have stuck it out. I had very little support from family members- it's sort of hard to get your child gluten free when your husband comes home with a donut or soft pretzels as treats for the kids! There are some enzymes that can help with small slip-ups, but that's when you are already following the diet. Do you have a Trader Joe's near you? They have a list of GFCF foods in their store- it's actually quite long. Kinnikinnic is a brand I've heard good things about- you could do a search online. George's makes a good GF brownie, and Van's makes really good mini-waffles- my boys both prefer the GFCF version to the regular ones. Ian's has good chicken nuggets, too. Check out Autism Web's forum (www.autismweb.com) for some good tips on following the diet, including a 10 week plan to ease yourself (and Andrew) into it. Just do a search and you'll come up with all sorts of info!

 

Good news- McDonald's will sell just the toy! I think it's $1.50, but that could save you some headaches down the road. Maybe a good motivator to try some new foods.

 

Good luck with everything and I hope you see some improvements!! I am also stressing about the upcoming school year and hoping that a new batch of kids will e accepting of my guy and his differences.

 

Take care!

Kristin

[kim]

Faith,

 

I never had the pyroluria testing done, mostly because I knew the boys were low zinc from blood test done through their reg. Ped. I have used 25 mgs. of zinc picolinate for youngest son pretty consistently. I recently got 50 mgs because they were out of my reg 25 mg. I am hesitant to use the 50's long term though. I only give that every other or every 3rd nite. They also get B6 and zinc in Bonnie's vits, so I have to take that into consideration too. I'm lucky to get 10 a day, into youngest son, and that provides an extra 10 mgs of zinc.