Nothing is Working

[ameecram]

Looking back my 4 year old son has had little vocal and motor tics for around 2 years, we didn't document anything because we didn't even realize at the time what they were. After going through some rough times in the spring, we have been using a DAN doctor. We have no family history of Tourettes that we know of. My son as well as myself has a lot of environmental and food allergies. His food results came back with 23 allergies/sensitivies, so we our diet is extremely limited. He is wonderful about it all, and accepts fully that he has allergies and never tries to eat something he shouldn't. The PANDAS came back negative, neurotransmitters came back with a lot of elevations. We have him on Kavinace, which we see no improvement. He is also on Kids Calm, Flax seed oil, Vitamin D, probiotic, digestive enzymes, and allergy meds. He tics mostly with excitement/anticipation of things, and with TV. He does get epsom salt baths on most nights. Our doctor felt this is something we can clear up, but nothing is really improving. His tics wax and wane, but they last for a while when they are there. We are gluten free, soy free, dairy free, corn free, egg free, plus many other foods which he is sensitive to. I feel it is a combination of food allergies since they are so many, but also like it's something with his neurotransmitters because of when he tics. I don't know much about Candida, or if we should check for that. Any tests or suggestions would be so helpful. Thank you so much. I'm feeling hopeless at the moment, but I know we will keep fighting this.

[san70]

I hear you! I feel the same way. My ds is 8 1/2 and has had tics since he was about 2 or 3 now that I look back. We have no history of tourette's. It seems as though nothing works. He, too, has an increase with anxiety and excitement. I am not really sure what else is a trigger. Summer was great, very few triggers. Our diet is clean. Now, since school has been in session, we are ticcing majorly. His big one is neck jerks and he is complaining that it hurts. The magnesium seems to do absolutely nothing for him. As I look into other supplements, I worry because of what will happen if he takes too much. I know supplements are natural but I am worried just as I worry with medications. I feel so helpless and I get very upset for him. It is hard to be hopeful. Sorry to be such a downer...having a bad day, I guess.

 

San

[sf_mom]

Ameecram: How did the test for PANDAS come back negative?? There is no test...... If the ASO and ANTI-DNAse-B did not come back as elevated you should know THAT THIS IS COMMON IN PANDAS children. The only reliable way to concretely know you child is PANDAS or NOT is to have the CaM Kinase protein measured via Madeleine Cunningham University Of Oklahoma and involved in original Swedo Study for PANDAS.

 

PLEASE, PLEASE, PLEASE check into PANDAS further as we are having great success with many children that have early diagnoses. Please also check PANDASNetwork.org for history of TITERS and introduce yourself in the Pandas Section of this forum.

 

THAT GOES FOR YOU TOO san70. Faith who frequently posted here, her son is 10 and misdiagnosed for 7 years. They just got their CaM Kinase Score back of 179 which puts her son in the upper end of PANDAS.

 

PLEASE READ COMMENTS FROM BOTH SWEDO AND CUNNINGHAM ABOUT POSSIBLE TRIGGERS AND PANDAS.

 

How Does Strep Lead to Psychiatric Symptoms?

 

The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest.

 

PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."

 

Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.

 

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

 

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

 

-Wendy

[san70]

Wendy,

 

Ok. Thanks for the advice. Can my pediatrician do a strep test? What do I specifically ask for? Will the test then give all the levels that you mentioned? I visited the PANDAS board and read some info about the results and I was thoroughly confused. All of this stuff is really confusing and overwhelming. When I get results, I will definitely need help interpreting. Can he still have all of these elevated levels without ever having had strep?

 

Thanks,

San

[sf_mom]

There is truly no test a pediatrician can provide you that will concretely tell you PANDAS or NOT. You can check ASO and Anti-DNAse-B to see if they are elevated and perhaps secure antibiotics. BUT, in most PANDAs children the ASO and Anti-DNAse-B are not elevated. In my son's case, ASO was positive and Anti-DNAse-B negative. Sometimes it is ONLY the first strep infection that creates the cross-reactive antibodies that will continually attack the immune system/brain/joints/heart when the child has a cold, virus, bacterial infection, allergies.

 

The only true way to know is by requesting a test kit from Madeleine Cunningham and testing the level of CaM Kinase Protein activated in your child. Those results will tell concretely if your child falls within PANDAs range... then you must consider the clinical picture and how you'd like to pursue treatment for your child. I recommend reading Pandasnetwork.org 3 times until you understand the information. You've got to understand the science to be your child's best advocate.

[ameecram]

There is truly no test a pediatrician can provide you that will concretely tell you PANDAS or NOT. You can check ASO and Anti-DNAse-B to see if they are elevated and perhaps secure antibiotics. BUT, in most PANDAs children the ASO and Anti-DNAse-B are not elevated. In my son's case, ASO was positive and Anti-DNAse-B negative. Sometimes it is ONLY the first strep infection that creates the cross-reactive antibodies that will continually attack the immune system/brain/joints/heart when the child has a cold, virus, bacterial infection, allergies.

 

The only true way to know is by requesting a test kit from Madeleine Cunningham and testing the level of CaM Kinase Protein activated in your child. Those results will tell concretely if your child falls within PANDAs range... then you must consider the clinical picture how you'd like to pursue treatment for your child. I recommend reading Pandasnetwork.org 3 times until you understand the information. You've got to understand the science to be your child's best advocate.

 

SF Mom,

 

I have sent an email to Dr. Cunningham, and hopefully will here something soon. Thank you so much for your information, and taking the time to reply!!

[sf_mom]

I often read through the Tourette's posting hoping to help some child 'LIKE' somebody did for me!!!! We were originally referred to a Tourette's Specialist and my son could have spent years being misdiagnosed and our family could have suffered greatly. Thankfully, that did not happen and we are seeing a great recovery for our son. He is 98% better five weeks post IVIG treatment.

 

You are heading in the right direct!!! If your child is PANDAS and does see full recovery, you owe the same to some other child and family... promise me you'll reach out. There are million misdiagnosed!

 

By the way, the reason your son has so many allergies is that his immune system is being constantly attacked by the cross reactive antibodies. As he gets better the allergies will hopefully resolve themselves.

 

-Wendy

 

 

There is truly no test a pediatrician can provide you that will concretely tell you PANDAS or NOT. You can check ASO and Anti-DNAse-B to see if they are elevated and perhaps secure antibiotics. BUT, in most PANDAs children the ASO and Anti-DNAse-B are not elevated. In my son's case, ASO was positive and Anti-DNAse-B negative. Sometimes it is ONLY the first strep infection that creates the cross-reactive antibodies that will continually attack the immune system/brain/joints/heart when the child has a cold, virus, bacterial infection, allergies.

 

The only true way to know is by requesting a test kit from Madeleine Cunningham and testing the level of CaM Kinase Protein activated in your child. Those results will tell concretely if your child falls within PANDAs range... then you must consider the clinical picture how you'd like to pursue treatment for your child. I recommend reading Pandasnetwork.org 3 times until you understand the information. You've got to understand the science to be your child's best advocate.

 

SF Mom,

 

I have sent an email to Dr. Cunningham, and hopefully will here something soon. Thank you so much for your information, and taking the time to reply!!

[Caryn]

Kids Calm is NOT corn free. Just a hunch, but I am thinking your son may not be completely corn free and that is why you are not seeing relief. We have a son with corn allergies and the neuro reaction when he gets corn is significant.

http://healthy-family.org

[ameecram]

Kids Calm is NOT corn free. Just a hunch, but I am thinking your son may not be completely corn free and that is why you are not seeing relief. We have a son with corn allergies and the neuro reaction when he gets corn is significant.

http://healthy-family.org

 

Wow, thank you Caryn. We started the Kids Calm before we went corn free, and never thought to check. Thank you for letting me know this, I have read through many of you posts actually, because I have seen you have many diet restrictions as well. I appreciate the information!! Happy Halloween!

[faith]

I would just like to add here that keeping our kids diet free from the extra burden of artificials or whatnot is still key. A healthy body free from the burden of "un" natural ingredients of the 21 century heals faster no matter what the diagnosis. Some things are just plain evil and only add to our kids' problems. (high fructose corn syrup, artificial dyes/flavors, etc.............evil).

 

(and a 10 pound sack of this @#$% has infiltrated my house as of last night............... ).... Happy @#$#@$ Halloween!.....

 

 

Faith

[Caryn]

Come to think of it, the allergy meds probably contain corn too.

 

My son was very reactive to corn. He had severe chronic multifocal ticcing and OCD symptoms at onset. He had gut problems, etc... Many thought it was PANDAS too and I did the testing and it was negative too.

 

If corn is the problem then you have to really do research and remove all the corn, in shampoos, lotions, medicines, supplements, and learn all the names of byproducts that contain corn. Avoid salt, vanilla, citric acid, etc.... as they all contain corn by-products. When the antibody levels lower (and this takes time, like years) then your son's tolerance will improve and you will not see the waxing and waning like at onset when his immune system is really weakened and out of whack.

 

We are on the diet almost three years and my son is completely fine. No waxing and waning, not even with a cold. He has no special needs at school. No signs of OCD, ADHD, etc.... This did not happen overnight. It took year, to be honest, to get to the point where I felt our treatment choice had really worked and was the right answer. We did many things for our son, as you know. This was and still is the single most important treatment to keep him healthy and symptom free.

 

We do not use OTC medicines for him as they are all laced with corn. The only allergy med we've used is Benadryl dye free caps and they have corn in them (sorbitol). Corn is TOUGH. It is harder than GF because of the laws in this country. Manufacturers do not have to label.

 

Once you eliminate all kinds of corn byproducts it still takes time to get the antibodies down and you have to be patient. I have always said and still believe that corn has been worse for my son's neuro issues than wheat. Just no one is studying this.

 

Just imagine a helium balloon. Think about how long it takes for that balloon to fall to the earth and deflate to the point where it is on the ground. That is how antibodies work. They do not spike and ebb with every meal. They have to slowly decline over time, months, years. So you have to expect that when they are high and reactive you are going to see behaviors with minute amounts of exposure. The longer you abstain the more the antibodies get a chance to slowly come down to the point where a minute amount doesn't cause a major spike in symptoms.

 

Best of luck.

[ameecram]

I would just like to add here that keeping our kids diet free from the extra burden of artificials or whatnot is still key. A healthy body free from the burden of "un" natural ingredients of the 21 century heals faster no matter what the diagnosis. Some things are just plain evil and only add to our kids' problems. (high fructose corn syrup, artificial dyes/flavors, etc.............evil).

 

(and a 10 pound sack of this @#$% has infiltrated my house as of last night............... ).... Happy @#$#@$ Halloween!.....

 

 

Faith

 

We always have our boys "trade in" their halloween candy for a toy..and they love doing this and so do we:)