DAN doctor visit

[Jennifer]

Hi All,

 

Just got back Sunday from the visit to the DAN doctor. On Friday we had a consultation that lasted about 2 hrs then we went back on Saturday for our son's actual exam. We had some blood drawn to determine his blood type, CBC and allergy tests. They sent us home with a stool test kit which will show us if he is digesting and assimilating food and yeast(he has to eat from all the food groups 3x's a day for 3 days prior to collecting the sample.) Then he gave us charcoal capsules he has to swallow and record how long it took for them to come through- which also indicates how efficiently the digestive tract is working. Then last, but not least we will be doing a heavy metal urine challenge test using DMPS and Captomer and a fasting amino acid test. Based on the symptoms we provided and observation he feels that our son is dealing with high functioning Aspergers disorder- which is a very high functioning form of autism. I kind of thought that this might be the case. He doesn't fit the extreme's of the symptoms, but in a mild form he does. Children with Asperger's tend to be highly intelligent, but extremely focused or obsessive regarding their interests..making things a bit difficult for them socially and a tic disorder can be manifest as well. People with Asperger's lead very normal lives. but tend to be perceived as quirky or eccentric by people. The doctor has high hopes, however, that our son will make a complete recovery.

 

The doctor didn't give me any kind of protocol- he is waiting for all the test results to come back. We have a phone appointment for the 27th of March during whch he'll go over all the results and plan of attack.

 

During our visit though he expressed the feeling that we are probably dealing with mercury issues (alot of the symptoms my son has indicate impaired detoxification). His thyroid is not functioning correctly, it is high. The same test results our doc here in town interpreted as normal were in fact high- the lab did not use pediatric reference ranges...big difference!! We are going to work on heavy metal and digestive/allergy issues and if we don't see some big reults we will do some viral testing. The MMR is a live virus and can be a big factor in neuro. problems. Dr. McCandless has a special panel called the McCandless panel that she has done through Dr. Ari Vojdani whom has been a guest in the Latitudes newsletter. Dr. McCandless feels that viral problems can be a big issue with tic disorders. Also the doctor told us that one of the reasons why symptoms wax and wane as they do is for the simple fact that kids are growing...their metabolisms change as do their nutritional needs, I found that to be very interesting.

 

I feel so much better now that we're in the hands of someone who actually understands these issues. I'll still continue to do my own research , but I don't feel like I'm on this desperate mission anymore..I feel a sense of calm.

 

Once we get the results back I'll let you all know. The fatty acid one should be back in another couple of weeks.

 

Jennifer

[Claire]

Jennifer,

 

This is so good to hear, and I know EXACTLY how you feel re the calm, I feel the same way, though set-backs try my patience considerably. You have done so well on your own, far far better than most parents I would say, but the vast majority of us just can't take this on alone. Too many facets and customization and best order of approach. Unfortunately, I think the name "DAN" has limited the number of people who approach them. I would never have contacted one except that Sheila Roger's comments that the protocol and diagnostics were the key.

 

As for the highly functioning Aspergers, well, I would give you the credit for the 'highly functioning' part--for all you have done so far.

 

Thanks for posting the details. These are things for the rest of us to note. I am sure that each DAN doctor has their own contribution to make and new things they have uncovered, given how early medicine is on this process.

 

How frustrating re the faulty test results interpretation!

[Heather]

Jennifer,

 

It was great to hear your positive experience with the DAN doctor. I understand your feeling of calmness knowing the direction you are taking is with someone experienced with the disorder.

 

What did he say about your use of the PCA-RX? Did he not think that it removed enough of the metals? Does he use DMPS to remove metals? Also, what is captomer?

 

And one more.....what are the thyroid symptoms that your son is experiencing? Thanks for taking the time to share your valuable information.

 

Heather

[Heather]

To All,

 

Who is Doris Rapp??????

 

I tried to buy the book "Children with Starving Brains" (Jacquelyn McCandless) today and they said it was out of print. Does anyone have this book or know where I could get one?

 

Heather

[Guest Jean]

Heather,

 

Doris Rapp is the author of "Is This Your Child" (and other books). She is a MD. Here is the link to her site: http://www.drrapp.com/

 

Also, you may get the book "Children with Starving Brain" from amazon.com. Do a search by book title from there. The current price is $20.97.

 

BTW, thanks for the info. on heavy metal/yeast.

[Jennifer]

Heather,

 

Our Doctor didn't really address any of the protocol issues with us. He simply wrote every single thing down that I told him and in about a month we'll meet with him again to discuss of the test results and protocol we should follow.

 

He uses the DMPS and Captomer for the initial heavy metal provoking agents for the urine test.

 

As far as the thyroid symptoms go (his thyroid is overactive) he is hot all the time. Never wears P.j.'s he just sleeps in his underwear and he still on top of all that sweats at night. He is extremely irritable and short tempered and he eats non stop...literally! Yet he is thin...healthy looking, but certainly thin.

 

As far as Dr. McCandless's book goes she has a first and second edition, I would go with the second edition as it has a little more info. in it. She also has a website with some great articles and this is where she posts the latest news.

 

http://www.autism-rxguidebook.net

 

 

I may have allready mentioned this, but when she was a guest on the Latitudes forum I had the wonderful opportunity of asking her some questions. As far as Tourett's and tic disorders go she said that they are on the ASD spectrum and she would follow the same protocol as she does with autism.

 

 

Jennifer

[Guest Guest_efgh]

Jennifer

 

Read your posts on your doctor's visit. Goodluck to you in your sincere efforts. Your son is too lucky to have such a persevering mother.

 

Did the doctor give any medicine for his thyroid? Is it hyperthyroidism or hypo? Does your son get tired easily?? this is one of the thyroid symptoms as far as I know. Is he losing weight and does he get tired all the time or is he active?

 

How are your son's tics these days? Is he totally tic free?

 

What made your doctor suspect aspergers in your son's case?

 

Thanks in advance.

[Guest Guest_Heather]

Thanks for the info. on the books.

 

I have them ordered.

 

 

Heather

[Marretts]

Jennifer,

 

wanted to let u know I have been reading a book called hitchhiking through Asperger Syndrome by Lise Pyles, its a mothers story about her son and what helped him, and she mentions that she talked to Bonnie Grimaldi about minerals and basically follows her regime, but she gives more B6 more towards autism than tourettes although her son did have tics as well. Her son also had milk allergy, all colours and preservatives and found several other triggers by doing emlin. diet and feingold. Anyway her son is much improved after all her efforts, he also had a sulfation problem which apparently can be common in autism spectrum, anyway not a bad book if u can get it.

[Heather]

Jennifer,

 

Thanks so much for sharing your DAN doctor visit information. My husband is just coming around to believing in all of this, although he won't read much on here. I just got him to read your post and I believe it is finally sinking in that there are experienced doctors that treat this disorder with much success.

 

As Claire said, I agree that you are to be commended on all of the success you have experienced so far. We will look forward to reading about your future success!!!

 

 

 

To All,

 

Just need to report that my son has fallen asleep within 10 minutes for the last 4 nights. This is unheard of for him. As I have mentioned before regarding his habits, he has had going to sleep issues long before the tics started. I do feel that his imbalances are correcting themselves as we the metals come out.

 

Heather

[Jennifer]

Marretts,

 

Thanks for the book info. I've been looking for a good book on Aspergers.

 

 

efgh,

 

Our son's thyoid is overactive (hyperthyroid) . He doesn't get tired easily at all he has plenty of energy to spare. As far as the Apergers goes, he has a one track mind. He is very intelligent, but only seems to be interested in talking about what he wants to talk about...there isn't really an "exchange". He could have a friend come up to him and start talking about a movie he saw and if he just read a book on tarantulas he would totally start talking about tarantulas and not really acknowledge the other person. When he was much younger he was obsessive about certain play themes and if no one else was interested he would go off and play by himself. He lives in his own little world. He is very clumsy and can't seem to absorb what is going on around him. He has litteraly bumped into people before and not even noticed. A lot of the times when someone greets him I have to prod him to answer because he doesn't "hear" them. He is overly sensitive about the way someone treats him, he doesn't handle conflict very well and he doesn't understand that something he is doing is bothering someone until the other person gets really mad. Many of his problems are on a social level which is much of what Aspergers is about. My 3 year old is completely different. He only had 2 rounds of vaccines and has never had his MMR. He is extremely perceptive, empathetic social and has pretty good conflict resolving skills for his age. No difference in environement or parenting. My 8 yr old was alot like my youngest when he was 2 then at about 2 1/2 everything started spiraling down hill.

 

As far as his tics go he had one motor tic that has come back. He takes a few steps and then spins around, but this is nothing compared to what he was dealing with before.

 

 

Heather,

 

Thank you for your kind words. It is great to have a forum like this. We are definately not alone!

 

 

Jennifer

[Guest Guest_efgh]

Jennifer

 

YEah, read the details of your post. What exactly is "high functioning"...Will pass on the details to my friend. thanks.

 

What is the difference with regard to treatment, etc for aspergers vs TS?

 

Does your son have a lot of friends?

 

thanks in advance.

[Guest Guest_Jennifer]

efgh,

 

"High functioning" is when many of the symptoms are present, but mild rather than extreme. There really is no difference in treatment. All these problems ..Autism, Aspergers, Tourett's, ADHDand PDD fall in the same spectrum. Many of the biochemical issues are pretty much the same.

 

 

Jennifer