6yo son has become verbal with motor tics

[rock151]

New here and glad I found this site! My wife and I have been concerned for our son over the past two years due to the fact that we have noticed numerous motor tics - throwing head back and rolling eyes up, constant washing hands, jumping in place and squating down to touch the ground to name a few. He was diagnosed with transient tic disorder at 5 and we were given th option of medication or just live with it. We want to try all natural options first, before even considering medication. Anyway, we notice that my son does have tics when he is fine, but there is a major flare up when he gets sick and starts to subsude as he begins to feel better. Over the past few weeks, my son has developed a lingering cold and he has had the worst tics and OCD behavior to date. He has become verbal and saying "I love you, no I hate you, no I love you". Every time we ask him a question about anything, he says, "Yes, no, yes, I mean no, yes..." He has also been yelling "yip" and "wow" for no reason and appears to be TS. He is very aware of this and becomes upset and says, "my brain is mixing up my words" and "my brain keeps making me touch the ground". He has been pleading with us to take him to the doctor for help. Needless to say, this is heartbreaking. We are scheduled to meet with an allergist next week and a psychologist that uses cognitive behavioral therepy. I guess I am just looking for some advise and anyone here who has had a chid with similar tics / OCD behavior. We are new to dealing with this and are looking for any help/ advice.

[faith]

hello rock, welcome,

could I ask what age your son is now? he started tics at 5? just wondering about a few things. did he have his kindergarten shots around the time you saw first tics? when you say he flairs up when sick, do you mean during the illness or afterwards? any illness, such as a cold? does he get sick often? if you feel he is having a lingering cold and his symptoms are much worse, could he be checked at this time for strep throat? sometimes this flairs symptoms in kids with tics or ocd, so I would suggest having him tested at the pediatricians office just to be sure.

 

I think the cognitive behavior is a good idea at this age, especially if you are seeing some ocd type behavior. what is it btw?

 

have you tried any supplements? have you tried magnesium? that is a good first step, it helps in calming tics somewhat and many here like a product called "Natural Calm". you could also let him soak in epsom salts in his bath, which csn have a calming effect as well. also really limiting candy and juices with artificial colors/flavors helps, as these things can aggravate tics. There is also a line of vitamins especially formulated for those with tics/tourettes called Bontech TS Control that some have had success with, altho I don't have experience with it. you could google it.

 

theres alot of info here re allergy treatments and you could read over alot of the posts, as you say you are exploring allergies as well. sometimes removing the things your child is allergic to or sensitive to can help take some burden off the immune system. You never know what could contribute to or trigger tics, it can be something as innocent as milk/dairy, so trying an elimination diet by removing one category of food at a time might she some light if that is an issue. you'll have to do alot of detective work here. read as much as you can and post your questions, many of our kids have these kinds of tics and other issues, so we'll be glad to help you along.

 

Faith

[rock151]

Hi Faith thanks for the response - my son is 6 years old. The tics and OCD behavior really beome constant during the course of his illness. They also began a week or so after he got a flu shot and a booster in August. I wouldn't describe him as being sick often, but the tics definitley become more noticible and severe during the illness.

 

His OCD type behavior is washing hands, touching the ground, putting things up to his mouth or even going to the ground and touching the ground with his lips / nose. We have not tried supplements yet, but are leaning in that direction.

 

-Rocco

[sf_mom]

Rocco: Sounds like your son could have PANDAS. Please read pandasnetwork.org in detail 3 times over to understand the disease. Also introduce yourself to the Pandas section of this forum. The only way to truly discover if your child has Pandas is to test the CaM Kinase protein in your child's blood available through Madeleine Cunningham out of University Oklahoma and his clinical picture.

 

We have seen a complete and full recovery for our son since getting sick at the end of June due to IVIG treatment and antibiotics.

 

Here is the simple science:

 

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."

 

 

Entire article link: http://www.christianpost.com/blogs/health/...c-09/index.html

[Chemar]

Hi Rocco

 

where I absolutely agree it is essential for you to look into the possibility of PANDAS, we do also have a representation of parents whose children do not fit the criteria for PANDAS, but have seen these symptoms come on after vaccination, as well as others for whom illness other than strep has been a trigger. (eg Lyme disease, Epstein Barr/mononucleosis, etc.) along with other triggers as well

 

Has your son ever had strep infection?

 

Is there any family history of tics or OCD?

 

Did the tics and OCD start before the illness/vaccines or just get worse after them?

 

I do hope you manage to find answers so as to get the most effective treatment

[rock151]

Thanks for the replies, I have found so much valuable information on here so far...

 

I have been to my pediatrician and she was open to the idea that Rocco could be sufferring from PANDAS and ordered a a full work up including the ASO Titer test and a bunch of other things. We then had an appointment with a doctor who does family medicine but is also into holistic aprocaches and is going to be able to to the blood test in his office, but also add the ELIAS testing and hair testing for metals. He started giviing him a digestive enzyme to take with breakfast and dinner. I feel good that we are on our way adn working towards helping our son.

 

Anyway, Chemar to answer your questions - We never had Rocco tested for strep until now. My mother in law has never been diagnosed with OCD, but she def. has OCD tendancies with germs and hand washing. Rocco's tics are apparent before illness, but really falre up when he is sick.

 

Thanks again!

[sf_mom]

Rocco,

 

Just so you know ASO Titers and Anti-DNAse-B are not diagnostic tools for PANDAS. OFTEN Titers are not elevated in PANDAS children. In our son his ASO titers was 244 - Positive and his Anti-DNAse-B was Negative.

 

The only way to concretely know if your child has PANDAS is to contact Madeleine Cunninham out of University of Oaklahoma (you can find her information under PANDAS in this forum) and request to be included in her study. She is a strep expert and worked on the original Swedo Study. CaM Kinase is a protein in the blood that is activated by cross-reactive antibodies resulting from the strep bacteria. After that test is completed you'll need to consider your childs clinical picture in conjunction with the CaM Kinase results.

 

Unfortunately, many Dr.'s are not well informed of PANDAs and often misdiagnose based on ASO TITERS AND ANTI-DNAse-B TITERS. The S. pyogenes strain (Group A) can effectively wipe out a childs immune system very slowly making them responsive to many things. Undiagnosed PANDAS children suffer greatly.

 

http://www.latitudes.org/forums/index.php?...art=#entry44727

 

 

 

Thanks for the replies, I have found so much valuable information on here so far...

 

I have been to my pediatrician and she was open to the idea that Rocco could be sufferring from PANDAS and ordered a a full work up including the ASO Titer test and a bunch of other things. We then had an appointment with a doctor who does family medicine but is also into holistic aprocaches and is going to be able to to the blood test in his office, but also add the ELIAS testing and hair testing for metals. He started giviing him a digestive enzyme to take with breakfast and dinner. I feel good that we are on our way adn working towards helping our son.

 

Anyway, Chemar to answer your questions - We never had Rocco tested for strep until now. My mother in law has never been diagnosed with OCD, but she def. has OCD tendancies with germs and hand washing. Rocco's tics are apparent before illness, but really falre up when he is sick.

 

Thanks again!

[EAMom]

Definitely get throat cultures on your son as well as family members (to check for carriers). Do the 72 hour culture if the rapid is neg. Throat cultures aren't 100% (since strep can hide out in other places, such as the sinuses), but they are the best place to start.

 

SFmom is right...ASO/anti-dnase b can be neg (or low) in some PANDAS kids. For us, the cultures were positive (in PANDAS dd, also in younger sister who is an assymptomatic carrier), while titers were always low. Some PANDAS kids (and non-pandas kids who have strep) just don't make the titers. They are useful in some cases where cultures are neg and you are looking for past evidence of a strep infection. But, if they are low, don't let a doc use that as a reason to rule out PANDAS.

 

read Buster's Jan 11 and Aug 24 posts on titers: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Yes..and definitely get your son's blood tested by Dr. Cunningham's lab ASAP (the lab is closed for the holidays, but re-opens in Jan).

 

Feel free to post on the PANDAS forum if you have more questions. There are lots of parents that would love to help you!

[rock151]

Thanks for the heads up on those tests and I will keep that in mind once we get the results and reach out to Dr. Cunningham.