Mother is the Trigger

[cara615]

So I was listening to Radio Pandas with Dr. T the other night and a women called in from Seattle with a very interesting piece of information. She said that she is talking to a lot of Moms that report that THEY are the triggers for their PANDAS kids. Meaning that THEY have an infection and once treated, their child/s symtoms lessen or resolve.

 

I find this so interesting because I am convinced that ds tics more when he is around me. I was on a business trip last month for 4 days and dh said that ds was barely ticcing at all (granted my dh is not as keen to the tics as I am) but when I returned ds's tics increased and he went into another flare.

 

I really think i am walking around with an infection.

 

once I see the new dr. I am going to pose this hypothesis to him and get myself tested. I know I am not a strep carrier because I have tested neg for strep many times. But what else do I have living inside of me?

 

interesting fact about me: I have Achalasia. It took 5 years ot happen but by the time I was 21 all of the nerves in my esophagus degernerated and my lower esophageal sphincter closed up and remained in spasm. I could not eat or drink without regurgitating because I let it go on for so long without treatment (I was a crazy kid).

 

Anyway, I had to have a baloon diliation done on my sphincter so food could go down via gravity. I lost my peristalsis permanently. 14 years later I had a Heller Myotomy to permanently fix my sphincter that became tight over the years again.

 

Now, the cause for Achalasia is unknown. There have been hypothesis' out there of autoimmune origins, genetic origins and viral origins. Nothing has been conclusive.

 

Knowing what I know now, I believe I had a virus or bacteria that caused an autoimmune response in my body to attack my esophageal nerves. the good thing is that it seemed to stop at the esophagis and did not attack or destroy anything else. But WHY???? And how is this related to my PANDAS son!!!!

[rowingmom]

You may be a trigger, but so are other infectious people your children come in contact with. The real problem is not your infection (if your body is handling it properly and you are asymptomatic), but your children's overactive response to infectious triggers in general.

 

If both you and your children have autoimmune problems it could be a combination of genetic susceptability and various environmental insults (pesticides, heavy metals (esp in vaccinations), EMFs) on all of your immune systems.

[3bmom]

My son has always reacted to other kids until we went on prophylactic abx and anti-virals. In January I went on anti-virals for shingles and I had the best week, so sweet, but I just realized my husband was gone on business. It's so hard to separate out change from each factor.

[Lydiasmum]

I believe I am the trigger and the cause of my DD's PANDAS flares. I have "delayed pressure urticaria" (cause unknown) but I got it in my early 20's following a severe chest infection that took 3 rounds of abx to clear. That same year I had my first (and my last) flu jab as (since the chest infection) I get mild asthma during colds/viruses. I have never been the same since that year - often painful swellings where pressure is applied to my skin, as well as swollen and stiff joints. Flares come and go. When I am good it's like it never happens, when I am in an attack I can be bedridden for 24 hours until symptoms disappear. I have had numerous allergy tests but nothing conclusive. Antihistimines don't work - but steroids do!!! Interestingly, I had virtually zero vitamin D though and took high dose to get my levels back up. My symptoms did improve after this, but not cured.

 

So here's my thinking. I have passed on the immune disorder susceptibility to my daughter. Along come childhood vaccinations, numerous strep/other infections and viruses and the storm of PANDAS is created. My daughter seems more hyperactive, fidgety and moody when I am in a flare myself. I have been to my GP who has ruled out arthritis, thyroid etc. etc. I have put the situation to him: could my problems and my daughter's be linked up somehow. If I could find the root cause of my symptoms, could this help both of us. Of course, he looked at me like I had two heads and said "I doubt it, needle in a haystack etc. etc"... (he is skeptical about PANDAS). I am convinced. I just need to find the right GP to be interested in all of this.

 

Luckily, my daughter's paediatrician buys the PANDAS scenario and is willingly prescribing prophylaxis abx for my daughter and she is much better than last year.

 

My gut feeling won't go away. My daughter and I are linked up somehow in this horrible thing.

Edited February 27, 2014 by lydiasmum

[airial95]

My husband and I always tested negative for strep when we would get tested (ad nauseum) over the years. When we saw Dr. B for the first time, he ordered full labs on all family members and lo and behold, my husbands titers were through the roof. He was treated, and sure enough, my son saw his chronic re-curring strep infections start to resolve.

 

Another place to look in the family is the pets - they too can carry things that trigger our children.

[3bmom]

Great advice Airial95. I found I have one non-PANDAS son with high strep titers who has Dyslexia and Irlen. He had dysgraphia but that resolved while on actutane for severe acne. Always wondered why.. something with the gut bacteria? I have another non-PANDAS son who now has chronic fatigue beginning at 18 ands he had extremely high titers for HHV-6. My PANDAS son had high titers for both which are resolving with everyone getting treated.