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jtp

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This is my first time using a forum but I have already seen so much information here I had to join and see if anyone else had a similar experience.

 

My son is 8 years old and has developed some tics recently. I noticed some odd behavior back in late April after he had been on amoxicillin twice. First in March for Bronchitis (after having a post nasal drip cough/cold) then in April for an Ear infection. His nasal symptoms never cleared up but the Bronchitis did. Two weeks after the antibiotics were finished he starting getting hives when he scratched himself. He kept saying something was biting him. Soon I realized it must have been a reaction to the Amoxicillin. I gave him Benadryl and the hives stopped wthin a week. His behavior seemed changed. He wasn't listening as well and seemed unhappy. He was very moody and seemed a bit depressed. He kept complaining of stomach aches. He would look pale for a day then look fine the next. I started noticing when he would say he had a stomach ache he looked pale, when the stomach ache went away he was fine. He began saying that he hated himself. This behavior was not my son at all. He was always full of self esteem, happy go lucky. I started looking on the internet for anxiety, depression disorders in children but never put it together that this all started happening after the double dose of antibiotics. My son had only been on antibiotics once before when he was 2 years old.

 

Since he's always had an off and on stuffy nose I thought his first tic, nose scrunching, had to do with that. He began nose scrunching in May/June. He was still complaining off an on of a stomach ache but I just thought it had to do with something he ate or had to go to the bathroom. He also began getting headaches off and on. His behavior and emotional state had improved. Then in August he started with eye blinking and it quickly went into eye rolling and a slight neck roll. At one point it had gotten so bad I made an appt with his pediatrician and she thought it might have been lyme disease. He was tested for lyme disease and strep and both came out negative. She suggested we see a neurologist. The tics were pretty bad and I was scared on how he was going to handle them at school. When school came around they stopped!!! I thought they were gone for good. Our appt with a Neurologist was for Sept 25 but I thought we may not need to go after all. Then my son got another stuffy nose and shortly after that the eye rolling and neck jerking returned. He started getting very moody and irritable again. He started getting nighmares as well. The tics are still present today but his nose has cleared up. His behavior and mood are improving too. I was glad we never canceled the Neuro appt. The day of the appt the Dr's office called and said they had to cancel and we are now rescheduled for Oct 16.

 

Since it has taken so long to see a Neurologist I thought I'd benefit by getting as much information as I can before I go. I have a feeling that he won't agree that the antibiotics had anything to do with this but somehow I feel that they do.

 

Has anyone experienced this type of situation before? Any information would be greatly appreciated.

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Welcome jtp,

 

Was wondering if you ever though your son reacted to dye. Was the Amox colored? My son always gets a tummy ache when he eats peanuts, and we found out he is very allergic to peanuts. I remember when he had the prick allergy test I could sware this child was off the carts in the ticcing dept. I don't know if pricking him with peanut caused him to wax for so long, but I sure thought so.

 

I'm not to sure how much the neuro will believe in about what we talk about here, but he will do an EEG so you can rule out some things.

 

No sure if some PANDAS moms have anything that would help, and Caryn may have noticed something in yoiur post that may be related to wheat/gluten.

 

Glad you found this place and good luck,

 

CP

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JTP,

Hi! and welcome.

Wow.... This sounds a lot like what we went through with our son nearly two years ago.

In short we discovered that he has gluten intolerance and wheat and corn allergies.

If you'd like to read our story it is at: http://healthy-family.org.

I checked the info on amoxicillin on glutenfreedrugs.com just out of curiosity. In our case we would have seen an INCREASE in tics with antibiotics for our son rather than a decrease as PANDAS parents notice if our son were taking antibiotics that contained gluten or corn in them. He is very reactive to his allergens and they pose a huge trigger for him. Now brand name amoxicillin is listed as gluten free, but the generic brands may not be. As far as corn allergy goes, there is only one brand of antibiotic my son can take that is safe for him. It is Amoxil.

The neurologist, in our case was a huge disappointment for us. We did the gamut of tests and they all came back negative (EEG, etc...) We asked about diet and were told there was no correlation. We were offered drugs but needed to wait six months as our son needed the T.S. dx first and hadn't been ticcing for a year yet. This is what put us on the road to alternative treatments. We never went back to the neurologist since and don't plan to---

I would highly recommend you do all the initial testing to rule out seizures, tumors, etc... Whatever they want to test for, but also see a gastro doc as well to look into the stomach issues and possible celiac or gluten/casein/lactose problems. If insurance coverage is a problem you can order tests from the companies directly and have the kits sent to your home and the results emailed or mailed to you. We did an IgG allergy test (very controversial in many camps) and this is what pinpointed the corn allergy thing. Corn allergy sufferers have similar symptoms as celiacs.

Hope this helps.

Caryn

p.s. if your son has a IgE corn or wheat allergy you may find out easily by simply putting corn starch or wheat flour in his palm and wait for a reaction. If he is allergic he will immediately develop irritated itchy palms. We use benadryl too, btw. We buy the dye free capsules (contain very little corn in the form of sorbitol-- one a day at the most has never caused our son a reaction). Now it is possible that he could have an intolerance that would not cause a skin condition, but your post makes me think that in your case the palm test might be helpful.

-- also, try stopping dairy for about a week to see if it gives him any immediate relief. Most folks here dealing with allergies say milk is a major trigger.

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Hello

 

I was just wondering if instead of the amoxi causing the problems, might it have been what you were treating with the amoxi. Strep could have caused the original symptoms and then also the neurological ones after. There can be a time lag for the neurological symptoms to show up. Maybe the amoxi didn't clear the infections and the strep is still hanging around or maybe antibodies are still high? Maybe you son is getting re-infected.

 

Our dd (PANDAS) has stomachache associated with strep and also now gets itchy heat rash, although she did also get a toxic reaction (not allergic cos we've since had her tested) to amoxi. Strep could also account for the headaches. Certainly, in my experience, the emotional changes could all be explained by PANDAS.

 

Could your son be PANDAS? Just a thought.. dunno what others think...

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dut,

Since JTP mentioned the negative strep test and lyme test while symptomatic I would think the next step might be to look at allergies or see a gastro. The candida suggestion is very valid and should be considered. You know the stomach is considered the body's 'second brain' and is often the place where diseases initiate due to problems with digestion. What leads me to think allergies are an issue is the chronic sinus problems and hives, coupled with headaches and irritability. These are all classic signs for gluten intolerant/celiac folks and corn allergy sufferers. Also, I am not sure that a PANDAS diagnosis negates allergies either, perhaps it could be an underlying trigger that causes reoccurring bacterial infections in folks..... In our case, just like with JTP's, we had strep testing done and it was negative. We did treat for candida, which can be caused by a leaky gut that could be triggered by low hydrochloric acid and/or improper diet. The waxing and waning is also a tip off if it correlates with changes in the menu (for example it happens within 15 minutes to an hour of eating and seems really bad after, say, pizza).

I think it is important to rule out PANDAS, but I also think it is valid to consider other possible causes as well.

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hi jtp and welcome

 

in addition to the other suggestions above, I would also consider that perhaps an allergy to penicillin iswhat triggered the worsening of things

 

the first exposure would have sensitized and then the second exposure causing an immune reaction

 

it happened to me as a child and I was very ill for some time from an allergic reaction to penicillin where I reacted only after the second exposure.

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caryn

 

yeh i was just passing it round as an idea. jtp didn't mention which strep test it was and as both cultures and especially rapid strep tests can show false negatives thought it was worth raising.. not wanting to jump on a PANDAS band wagon but the symptoms (including stomach pain and hives) so closely resembled those exhibited by my PANDAS daughter, I didn't want it to slip by.

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Thank you all for sharing your thoughts and ideas with me. They have been very informative. I'm not sure if I can wait until the Neuro appt or not but I'm going to explore as many options as possible. There seems to be many possible causes for the tics. My son's Pediatrician was well aware of Pandas and that's why she tested him for strep. It was a blood test. I had no idea at the time what she could have been talking about but I know now. At the time of the visit it seemed that Lyme disease should have been the diagnosis. He had a tick bite a long time ago, but no bulls eye rash or flu like symptoms.

 

He may have allergies but wouldn't he have reacted to the allergan many years ago? He is a very picky eater. He is also sugar sensitive so we have always tried to limit the sweets and candies. Absolutely no soda in this house!! His drink of choice is milk and he does drink quite a bit of it. He was at a ball game and his Dad bought him a root beer and his tics were out of control. Sugar definitely affects his tics. Also video games. He hasn't played any since this all began. He's gotten used to not playing but asks to play once in a while.

 

The yeast also sounds like a good possibility as well. Is that spit test really reliable? I was thinking on trying that in the morning.

 

I'm not ruling out an allergy to amoxicillin either since that's when all this began.

 

I will try a few simple things before we go the Neuro appt. I just want to rule out any other issues first. I have a feeling we will be trying to locate a Natural Medicine Provider. They seem to be open to alternative approaches. I'v spent many years seeing a Neurologist for Migraine headaches since I was 5 years old and I still get them today. I don't really have too much faith in them. That's why I'm here.

 

Again thank you all for posts. I will be checking back often and updating if I find out any news!!

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