Son just diagnosed with TS...suspect PANDAS

[Guest Susanna]

My son was just diagnosed with a tic disorder a few days ago. The neurologist indicated it is probably TS. He mentioned PANDAS in passing when I told him my son had Strep a little over a month ago. I did some research on PANDAS and I believe my six year old son meets all of the criteria. My son has had minor facial tics for a few years, but I never thought much about it. My son also has asthma which appears to be triggered by seasonal allergies...I thought the facial tics and eye blinking were related to the allergies....I believe the eye blinking is allergy related since Patanol does seem to alleviate that problem, but am now convinced the facial stuff is a tic. A little over a week ago, out of the blue, my son started having whole body spasms at T-ball practice. After a trip to the ER that evening (not helpful at all other than to reassure me it wasn't anything life threatening), and an appointment with the pediatrician the following morning (who recommended I tell the neuro about the strep), we followed up with an EEG and a pediatric neurologist during the week. The neurologist has ordered a series of blood tests, some of which I assume are to confirm that my son did in fact have strep. Since last week my son has also developed a sniffling tic. I found this forum in my search for more information on PANDAS and treatment options. Am I correct that PANDAS is initilially treated with antibiotics? If so, why wouldn't we treat now insetad of waiting for test results to confirm? (I plan on making a call to the neurologist first thing in the morning to ask just that question, but would be interested in any feedback you can give based on experience) Once the PANDAS is treated, what next? Do we just go back to the minor facial tics until the next bout of strep? The doctor had indicated the use of meds to control his tics if it becomes a problem for him in school (i.e. teasing, etc) I'd prefer not to medicate my son if there are alternatives to help diminish the tics. In looking through some of the postings on this website I see lots of information regarding diets, supplements, electronics, etc. Where do I start in evaluating all of these alternatives? Is there anything I can do immediately? I feel so overwhelmed by all of this. I am trying to stay positive and want to be proactive in finding the best treatment to give my son the best possible outcome. Thanks for any information you can provide to help me weed through this.

[Heather]

Hi Susanna,

 

Welcome to the ACN forum. My situation sounds similar to yours. My son started with eye tics that we didn't pay much attention to. Then he started the sniffing tic which we thought was an allergy and gave him Reactine as advised by the medical doctor. The facial grimaces and minor OCD came a couple of months later and blood tests showed that he had strep and his diagnosis would likely be PANDAS. By this time I had researched much on the Internet about PANDAS and was really unsure about giving him the antibiotic. I read that some children respond positively to the antibiotic and others don't have any reduction of tics with an antibiotic. I had also read about intestinal yeast and how antibiotics can worsen the condition.

 

Anyway, the medical doctor told me if I didn't use the antibiotic that my son could have permanent brain damage from the strep. My husband was adamant that we use the antibiotic as prescribed by the medical doctor and I felt we had to try it so we started it and by Day 8 he was ticcing so bad I had to take him for drives at night to get him to sleep as his whole body was heaving with snorting. I am not saying that this will happen in your case, as each case appears unique and for some children the antibiotic does help the tics.

 

Once I quit the antibiotic I started my son on coral calcium water and made an appointment with a naturopath. Since then he has taken Threelac (for intestinal yeast), digestive enzymes to help him digest his nutrients, DHA Junior (fatty acids for the nervous system) and a multi-vitamin and avoidance of milk products, corn, potato and tomato (which he showed a sensitivity to in testing) His tics were reduced by 85%. He is now doing a detox (with NDF) for heavy metals as his hair analysis showed high aluminum and moderately high lead and mercury.

 

My naturopath feels that his immune system is so malfunctional because of the metals and yeast, that the viruses he encounters cause the tics to manifest. Since the initial diagnosis he has contracted the chicken pox and most recently fifth disease. During the time these viruses entered his body his tics increased and then gradually have decreased so she definitely feels that the PANDAS is viral-related and that we need to put his body back in balance in order to boost his immmune system. She believes once this is done, he will not react to a virus with the tics.

 

Also, while his body is out of balance, he probably has developed different food allergies (sensitivities) that will also trigger tics. The most common food triggers are milk products, soy, corn, peanuts, chocolate and wheat. There are other children, such as Claire and EFGH's sons who react to TV/computer screens. It would be beneficial for you to read through some of the previous threads to view some of the helpful supplements.

 

It is best to see a natural or environmental doctor to determine your sons' specific needs since as I mentioned, each case appears unique and different children react differently to the various supplements.

 

If you would like any other detailed information, just keep asking as there are many on here that are most happy to share their experience to help others. With this research being so limited most of the reports are anecdotal so every bit that we can share with each other is beneficial. I have found some wonderful tips to help my son.

 

He is now almost tic free thanks to the alternative approach.

 

Heather

[Guest Susanna]

Thanks for sharing your experience with me Heather. You mentioned coral calcium water...what exactly is that for? Instinctively I have a feeling food sensitivies and yeast may also be playing a role in my son's condition. My boys are such carb addicts...and it's all bad carbs. I don't think tv/computers/video games are an issue....if anything his tics are reduced during those activities since he is focusing on the screen. I do have a question about dairy....how does yogurt fit into all of this? Yogurt contains the "good" bacteria, does it not? If dairy is limited does yogurt also need to be limited? I guess I'm jumping the gun since I don't know for sure dairy is an issue with my son.

 

It's quite scary to think that antibiotics might possibly make his tics worse, but since some children are helped by them we feel we need to give them a try and follow up with the neurologist and pediatrician. I feel somewhat lucky in that both the neurologist and pediatricain recognize PANDAS...in reading through some of the threads I see that some traditional doctors don't know what it is... so maybe they will be supportive in my quest for alternative treatments. Irregardless of that, I intend to consult an environmental or natural doctor given that I believe there is a lot of validity to his system being out of balance. I am having trouble trying to locate one near where I live....I've been all over the web without much luck. I tried some of the links posted on other threads but was not successful in locating a doctor. Preferably I'd like one who is also an MD so that my insurance will pick up part of the cost, but if anyone can specifically recommend a non-MD in my area from whom they have received help I'll take that as well. If anyone can help me locate a doctor in the Philadelphia PA or surrounding area I'd greatly appreciate it.

 

Heather, I'm glad to hear your son is almost tic free...it gives me hope. How old is your son, how long ago was he diagnosed and how long have you been going the alternative route?

 

Susanna

[Heather]

Hi Susanna,

 

Coral Calcium water is a mineral rich water which will help balance the body to an alkaline environment as it helps in flushing out the toxins that are messing up our immunities. It is only a small part of my treatment protocol but I do feel that it is beneficial in providing necessary trace minerals that many of our foods don't have. I buy mine from Kingsway which has many sites that you can research the beneifts.

 

I don't blame you for wanting to try the antibiotics as I know that they have helped many children with PANDAS stop ticcing, at least until the next outbreak of strep. If you do use the antibiotic, however, it is important to follow with a probiotic to replace the good bacteria in the intestines.

 

As far as yogurt goes, yes, it is very beneficial to replace the good bacteria, however, it is a milk product and my son can't handle it at all. In fact, just 2 weeks ago after a bowl of yogurt which I finally gave in to, he definitely reacted with tics that we hadn't seen in months.

 

Even though your pediatrition and neurologist recognize PANDAS don't count on them supporting the natural treatment. I had a bad experience with a Psychiatrist who works with PANDAS patients but told me I was basically wasting my money on natural supplements. I don't mean to be pessimistic since I hope, for your sake, that the medical doctors do support your desire for natural therapy.

 

My son is 7 right now and started his tics almost a year ago. In the fall they became so severe he was home from school with me for 2 months. He was diagnosed with PANDAS at that point and my first visit with the naturopath was mid-November. By January he was back at school and has progressed in a positive way ever since. We have had a couple of set backs but my naturopath feels they were due to the viruses that he had at the time (Chicken pox and 5th Disease). I just found out one of his friends was just diagnosed with a severe case of strep so I am praying that it doesn't come to our house. We still have a long way to go in heavy metal detox I believe. Time will tell.

 

There should be someone who will answer with how to find a doctor in your area. I am from Canada and not sure of how to direct you. There is a list of

DAN doctors on an autism site but I am not sure how to find it. It is on a thread posted here previously. I haven't gone that route yet since I have found a wonderful naturopath and she is confident in a complete recovery.

 

Keep in touch.

 

Heather

[Claire]

Susanna,

 

My son craved carbs too. That can be indicative of a yeast issue (which he had) but then so many kids crave carbs it is tough to say.

 

My son is mildly allergic to mild, but the doctor says that he can still have yogurt. I guess it would vary and you would need to ask a doctor.

 

If you are concerned, I can see doing one round of antibiotics to make sure that the strep is cleared--I did this myself, since my son's neurological symptoms (fears) always responded so well to antibiotics. Just be sure that you have him take probiotics 2 hours after each round of antibiotics to prevent yeast issues. You should know within 3-4 days if he improves.

 

Claire

[Guest Susanna]

Thanks for the info regarding the probiotic....I will definitely look into that.

 

I still haven't been successful in getting in touch with the neuro (out sick), or my son's pediatrician (gone for the day) so we still haven't started on antibiotics. My husband, however, was able to track down a homeopathic doctor from a client of his...this doctor is also a pediatrician so I am very eager and anxious to speak to her. As luck would have it she was gone for the day as well but I plan on touching base with her tomorrow.

[Heather]

Susanna,

 

You have probably hit it lucky by finding a homeopathic doctor who is also an M.D. I wish I could find one in our area. Anyway, good luck and keep us posted.

 

Heather