Immunologist

[nicm930]

Today we went to the immunologist at Children's Hospital. He didn't really do to much for us. He knew what PANDAS was, but said he was no expert. He did know more than most of the docs that we have seen so far. He looked at her last titer test done back in Feb. It was 149. He said that it was in the normal range but high. He said if we watied a few weeks later they would be much higher. He ran blood work on her, titers, anti-dianase, and one I thought was strange, tetnus. He did ask what recent immunizations she had. I told him I have an app't with Dr Triffiletti in Dec 10th( the day befor my dd's 10th birthday)) and he said that that is the way to go, especially that her had written published papers. He gave me names of 2 neurologist at CHOP that know PANDAS but said I will probably wait awhile for an app't. He basically did the blood work for the neuro so when we go in December he sees her levels now.

I feel more confident that we are on the right path to getting her treatment. So far she's been pretty good. Not too many rages, still with the OCD, and she has been making a tounge clicking noise. She also said today that her eyes keep blinking. I have never seen it, so I am not so sure about that.I have learned so much from this board. I thank everyone for their support!

 

Nicole

[pmoreno]

Today we went to the immunologist at Children's Hospital. He didn't really do to much for us. He knew what PANDAS was, but said he was no expert. He did know more than most of the docs that we have seen so far. He looked at her last titer test done back in Feb. It was 149. He said that it was in the normal range but high. He said if we watied a few weeks later they would be much higher. He ran blood work on her, titers, anti-dianase, and one I thought was strange, tetnus. He did ask what recent immunizations she had. I told him I have an app't with Dr Triffiletti in Dec 10th( the day befor my dd's 10th birthday)) and he said that that is the way to go, especially that her had written published papers. He gave me names of 2 neurologist at CHOP that know PANDAS but said I will probably wait awhile for an app't. He basically did the blood work for the neuro so when we go in December he sees her levels now.

I feel more confident that we are on the right path to getting her treatment. So far she's been pretty good. Not too many rages, still with the OCD, and she has been making a tounge clicking noise. She also said today that her eyes keep blinking. I have never seen it, so I am not so sure about that.I have learned so much from this board. I thank everyone for their support!

 

Nicole

 

 

Don't know where you live, but if you don't mind traveling, or want to do this over the phone - you can contact a DAN doc who will do a PANDAS panel and find out definitively if your daughter has PANDAS - usually the panel along with a history of her behaviors and titers in combination should give an accurate picture. The panel was so informative for us - well worth it. They will prescribe tests over the phone - you just have to have blood drawn locally, then send it out to specialty labs. The initial appt. is costly (by phone they do an hour the first time because there's so much info to gather) It's roughly $300 - insurance usually doesn't cover. Then after that you can do 15 min or 1/2 hr, depending on what you need to know or discuss. I've learned so much through them and had some very valuable tests done on my daughter since we started with them last April.

If you're interested, let me know and I'll send you the info on them. They're in Florida. We live in Michigan - traveled there once this summer to see them, but can get most things taken care of over the phone. Pat (By the way, eye blinking is really common for these kids - its been something my daughter did with each time she started having symptoms)

[kim]

Nicole,

 

I would guess that the Dr. wanted to see how your daughter's immune system is functioning in relation to something that she has been repeatedly vaccinated for?

 

Anyway, your post made me think of something that I found really interesting some time back. We have two forum members who have taken their PANDAS kids to a Dr. who follows Dr. Amy Yasko's protocol (this excerpt is from a book that she has written). If anyone replies to this, please use the add reply feature below the "reply, so I will be able to remove this post (copyright?). The posted link below will take you to the sign in page for her online discussion group. You have to register to read messages though.

 

 

Yasko threads acetlycholine thread

 

Topic heading Methlyation

 

http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=15730

 

Puzzle of Autism p 32-36

 

Here is a cut and paste from the book:

 

"Acetylcholine is a neurotransmitter that acts on two types of receptors,

nicotinic and muscarinic receptors. Nicotinic receptors are involved with

sympathetic nervous system stimulation, while muscarinic receptors are

involved with parasympathetic stimulation. The balance between these

receptor activities is involved in the sympathetic and parasympathetic

imbalances that have been noted in autism. There have been mixed reports

when it comes to supplementation of choline to enhance acetylcholine

levels in autistic children. Some children appear to respond quite well to

choline, while others have negative reactions. Choline supplementation can

be particularly dangerous in children with seizures as choline and

acetylcholine have been reported to increase seizure activity. Some

children have subclinical seizure activity that has yet to be diagnosed or

treated; it can be especially difficult to make the correct judgment with

respect to choline supplementation in this specific group of children. (To

add to the complexity, vagus stimulation decreases seizure activity in

drug resistant epilepsy; vagus nerve stimulation should cause the release

of acetylcholine.)

 

It is important to consider all of the components of any supplement that

you give to your children, as they may contain hidden sources of choline

or other ingredients that may be a problem. Many transdermal delivery

systems (topical delivery gels) contain lecithin as part of the delivery

matrix. Lecithin is a source for choline. In addition soy lecithin in

topical gel preparations may be a problem for individuals who are allergic

to soy.

 

?Supplementary lecithin requires a special note of caution. Many people

take lecithin either under a physician's guidance or from the vitamin

counter to eliminate fats and cholesterol from the body. Lecithin is a

natural substance that occurs in some plants and animal tissues and in egg

yolks. One of its components, choline, is suspect for people with

seizures. In a 1983 study, a choline-supplemented diet significantly

increased seizures. The researchers concluded, "Our results suggest that

supplementation of dietary choline above NORMAL levels might result in

increased susceptibility to epileptic seizures. This could result from

either a reduced threshold for seizure or from an increase in the rate of

seizure development." This conclusion definitely suggests supplementary

lecithin with its choline component is not the treatment of choice for

people with seizures. (Taken from Epilepsy: A New Approach by Adrienne

Richard and Joel Reiter, M.D., Walker and Company, New York, 1995)?

 

Excess levels of acetylcholine are regulated by the enzyme

acetylcholinesterase which causes the breakdown of acetylcholine. Although

it is counter intuitive, a lack of acetylcholinesterase will result in a

down-regulation of muscarinic receptors. Potentially this would have the

unexpected outcome of high levels of acetylcholine, however with low

levels of muscarinic (parasympathetic) receptors. It has been assumed

that there is a lack of choline in autism. However, it may instead be a

lack of acetylcholine muscarinic receptors. Muscarinic receptors are

implicated in processing of cognitive functions, memory, problem solving,

regulating pancreatic secretions as well as depressing glutamate release

in both the prefrontal cortex and the temporal lobe.

 

A number of parents believe that their children began the ?downward? slide

following one or more of the DPT (diphtheria tetanus pertussis)

vaccinations. As already mentioned, tetanus toxin (by its action on

synaptobrevin) blocks the release of GABA and glycine. In addition tetanus

toxin can also inhibit the release of norepinephrine, enkephalins,

acetylcholinesterase, and acetylcholine. Tetanus toxin affects the

hypothalamus, decreases hormone levels (such as testosterone), causes

excessive sympathetic discharge with urinary excretion of catecholamines

(i.e.dopamine) and can cause chronic seizure activity. Antibodies against

the GAD enzyme (the enzymes that converts glutamate to GABA) have been

reported in some cases of tetanus toxicity. Tetanus toxin binds

irreversibly. Nerve function can only be returned by the growth of new

terminals and synapses.

 

Toxoid vaccines are made by treating the toxins with heat or chemicals,

such as formalin or formaldehyde. The rationale behind this inactivation

process is that it should destroy the majority of the toxins ability to

inhibit and affect neurotransmitters. However, the toxoid should still be

able to stimulate the immune system to produce protective antibodies. Once

these protective antibodies are made and bind to the toxin, it should

eliminate the toxins ability to bind to the receptors on the host cell

membrane.

 

If the body is having difficulties with the immune system, it may be

unable to mount a proper antibody response to the injected toxoid. In the

absence of antibodies this may allow the toxoid to be free to bind to its

target and to interrupt the release of neurotransmittors such as gaba, and

glycine and to affect the level of acetylcholinesterase. This would have

the consequence of creating imbalances in acetylcholine regulation, with

the ultimate result of a decreased number of muscarinic receptors.

 

The quality control of toxoid vaccines is based on immunogencity and

safety testing in animals, who are capable of mounting an appropriate

immune response. This leaves open the possibility that the toxoid may

behave differently in individuals who do not mount an appropriate immune

response. Tetanus toxin behaves like a normal antigen in terms of the

immune system, and as such it is recognized in a MHC dependent fashion.

The carboxy terminal portion of the toxin is both necessary and sufficient

for the ability of the toxin to bind. What this means is that if the

carboxy terminus of the toxoid has not been sufficiently denatured it will

still be able to bind synaptobrevin and have toxic effects.

 

In vitro (test tube) analysis of binding activity found that:

 

?When toxoid or crude toxin is used, non-specific cleavage of

synaptobrevin substrate occurs? (Kegal et al Federal Agency for Sera and

Vaccines Germany).

 

This indicates that the vaccine toxoid can have similar effects to the

toxin itself, especially in the absence of an adequate immune response.

Therefore, tetanus toxoid may also be able to inhibit neurotransmitter

release. Currently in vitro (test tube) tests are not used to monitor the

efficiency of toxin inactivation by formaldehyde before use in vaccine

preparations.

 

Nystatin has been shown to prevent cleavage of synaptobrevin by tetanus

toxin. Nystatin has also been reported to induce liposome fusion which

may in part compensate for a lack of synaptobrevin. The role of yeast

infections in autistic children has been described by Dr. Sidney Baker and

others. Nystatin is often used to treat these infections. Many parents

comment on the finding that their children do better on nystatin even in

the absence of a yeast infection. It is possible that in addition to its

action as an antifungal, the nystatin may be acting to aid in the release

of neurotransmittors that have been compromised by tetanus toxoid.

 

Just as there are over methylators and undermethylators with respect

to the methylation pathway, there may be children with different levels of

acetylcholine or acetylcholine receptors that in part are determined by

their reaction to the DPT vaccines. There may also be a genetic component

to this complex piece of the puzzle. We have observed that there is an

association between autism and the presence of family members with asthma.

The condition of asthma itself is associated with elevations in

acetylcholine as well as viral infection (the viruses most commonly

associated the asthma attacks are RNA viruses).

 

As can be seen from the narrative above, the microcosm of acetylcholine

regulation itself is beginning to emerge as its own complex puzzle within

the larger puzzle of autism.

 

We have had preliminary success in utilizing supplements to enhance

muscarinic receptor activity; use of acetyl-L-carnitine, MSM, ashwagandha

and ginkgo may be helpful for this purpose. The use of nystatin may also

be helpful. In addition, the amino acid alanine has been reported to

reverse the inhibitory effects of phenylalanine on acetylcholinesterase

activity. It is not known if the use of alanine would help to reverse

effects of toxoid inactivation of acetylcholinesterase activity, if that

is indeed occurring.

 

This area is still evolving and is not fully resolved at this time.

However it is important to consider imbalances and irregularities in this

system in any treatment plan."

[nicm930]

I didn't know that there was a PANDAS panel test. Is it testing their titers? What exactly are they testing for? I am interested to find out. From what all the docs I have seen they said there is no blood test for PANDAS it is a clinical diagnosis. I am so confused about this whole thing. Thnaks.

[P_Mom]

It is a clinical diagnosis....

 

All the titers and panels can do is possibly aid in the diagnosis.

 

Negative titers and/or panels do not definitely rule out or diagnose PANDAS.

[EAMom]

I'm not sure exactly what's on a PANDAS panel...but I believe it includes the D 8/17 marker which is supposed to be positive in 80% ( ?) of pandas kids. When we tried to get this D 8/17 test run at our docs they said it couldn't be done and we couldn't send the blood to a lab out of state if it wasn't licensed in CA...

 

I don't know if there are any studies that show how good the tests are in the PANDAS panel for predicting whether someone has PANDAS? Too bad there's no mention of it on the (very out of date) Nimh website.