Please give me your advice on antibiotics for PANDAS...

[CKJ]

I would love to know what is working for others, maybe you can give me advice on the following situation:

 

My dd is 6, she started with the severe onset of TS about 2.5 months ago and diagnosed with PANDAS by Dr. Murphy at the PANDAS research study at the University of FL.

 

She has been on Augmentin for about 2 months. Symptoms never really remitted the whole time on antibiotics (little better then bad again). She started on the prophalaxis dose of augmentin about two weeks ago (500 mg a day - every day). Things started getting REALLY bad about a week ago - SEVERE rage attacks (very uncharacteristic) - went from about 6-10 times a day to double that (15-20 times a day). Dr. Murphy suggested taking her off the antibiotics completely - said it never really helped the symptoms drop - and she had a theory that antibiotics could possibly trigger more TS/Tic symptoms. I stopped over the weekend (didn't give antibiotic or probiotic (Culturelle) on Saturday or Sunday). I noticed an improvement yesterday - only ONE rage attack and it was very mild. She didn't have any this morning either. Today after school will be the real test (they are bad then!).

 

This is what I'd like to know: Anyone else have problems with the antibiotics? I am really scared to have her off of them as I'm fearful she'll get sick again with no "protection". However, the problems we were having with the antibiotics were a lot worse and not worth it if being off the antibiotics will relieve them.

Is anyone else seeing exacerbations associated with antibiotics?

[ad_ccl]

Hi CKJ

 

I believe a number of years ago someone named Heather posted about her PANDAS son getting much worse on antibiotics - I think her concern was the increase in yeast triggering more problems - there could also be a dye in the antibiotic that is triggering something. How about trying a different antibiotic? It seems there has been a lot of positive results with azithromycin - which also acts as an immuno modulator (I think anyway). We have seen unbelievable stabilization since starting this in late August. We continue to be amazed at the energy our son has - and that activity is no longer resulting in an increase in tics. He played hockey saturday morning, we had dinner with friends saturday night where he played in the backyard with the other kids for hours running around, never lacking energy, and yesterday we went on a huge walk along the river and had a picnic with friends, he had so much energy and no tics all day. These are all activities we have not done in years - an action packed weekend. Usually we would limit and rest the rest of the weekend. By the end of the night as he was having bedtime snack there was a some minor subtle eye tics, no one else would notice them. He seems fine this morning.

 

Please keep us posted.

 

just wanted to add - we have not had any rage attacks to deal with, but have had emotional lability, and grumpiness over the years, I have to say since starting this antibiotic - he has completely leveled out - his behaviour is really good, no ups and downs the way we had seen. His handwriting seems to have also improved. He is making good decisions in general. What amazes us most is how healthy he looks, and so full of life and smiles. Something I only realized was missing as much as it was when it all started coming back.

 

You may want to search for heathers old posts.

[CKJ]

Hi CKJ

 

I believe a number of years ago someone named Heather posted about her PANDAS son getting much worse on antibiotics - I think her concern was the increase in yeast triggering more problems - there could also be a dye in the antibiotic that is triggering something. How about trying a different antibiotic? It seems there has been a lot of positive results with azithromycin - which also acts as an immuno modulator (I think anyway). We have seen unbelievable stabilization since starting this in late August. We continue to be amazed at the energy our son has - and that activity is no longer resulting in an increase in tics. He played hockey saturday morning, we had dinner with friends saturday night where he played in the backyard with the other kids for hours running around, never lacking energy, and yesterday we went on a huge walk along the river and had a picnic with friends, he had so much energy and no tics all day. These are all activities we have not done in years - an action packed weekend. Usually we would limit and rest the rest of the weekend. By the end of the night as he was having bedtime snack there was a some minor subtle eye tics, no one else would notice them. He seems fine this morning.

 

Please keep us posted.

 

That was another thing....I started her on Culturelle (Probiotic) a week ago - she hadn't been on any probiotics prior to this and a few days later is when we saw the exacerbation (things went from bad to worse). It occured at the same time we went from the full dose of augmentin to the prophalaxis dose. I stopped both the antibiotic AND probiotic and got good results after two days - from bad to worse to alright. My understanding of the probiotic is to replace the good stomach bacteria that gets killed by the antibiotic. Doesn't that also help control yeast or can yeast also be associated with probiotics???? This is all so confusing

[ad_ccl]

if you hadn't used probiotics before you might have been seeing the effects of yeast die-off - an increase in symptoms. When I first started down this journey I thought probiotics were too "alternative" I did not understand any of this stuff. I tried them and within a day saw an increase in tics so we stopped - I now know it was the die off. We continued on the full antibiotics and he was not getting better, things were often getting worse - a few months later when we got serious about looking outside the box - we went off dairy and saw a huge improvement, we also started on probiotics but just a small dose a day then increased it. We later did the OAT test and found yeast was a problem, we increased probiotics and we saw an improvement. The probiotics do help keep the yeast under control. Have you done the spit test? You spit in a glass of water first thing in the morning before eating or drinking, if the spit has stringers it is a good indication that yeast is a problem. There are some posts on this too if you do a search - I think chemar had a website that explained this more.

Hang in there - keep looking for answers and documenting, sometimes patterns eventually present themselves to us (or to others on this site who are kind enough to point out the obvious when we have missed it!)

[Ronnas]

I am sorry for what you are going through. It was exactly 5 years ago that my son had the onset of tics, along with a dramatic change in behavior, and regression in school. I was a RN and for about a year and a half I was not online but worked with our neurologist and pediatrician who were both good doctors that I had actually worked with and trusted. Over that first year my son regressed quite dramatically and his tics were severe so we were referred to a metabolic geneticist to investigate neurodegenerative and metabolic disorders. My son was admitted to the hospital for nerve, muscle and skin biopsies.

 

Following the surgeries my son developed a post op infection at the nerve biopsy site and was started on Keflex and we were discharged home from the hospital. Within 1-2 days on the Keflex my son was DRAMATICALLY improved, I just could not believe the change in him, it was stunning to say the least and I can still feel my relief at seeing his body still, and his behavior stabilized. I was extremely perplexed and typed into the computer for the first time "tics and antibiotics" and up popped information on PANDAS. I was absolutely floored.

 

Once my son's 10 days on the Keflex was done within a few days all of his symptoms returned. I returned to our neurologist with information about PANDAS and he agreed to another course of Keflex and again we quickly saw improvement. However, if we discontinued the Keflex he would quickly deteriorate again. Our neurologist suggested trying pen VK (penicillin) prophylactically and my son showed no response to this antibiotic therefore, we switched back to Keflex. Over time this antibiotic was less effective and we switched to clindamycin with good effects.

 

However, during that time I also found braintalk, and lattitudes and although antibiotics were helpful they were not the complete answer. We did a food elimination diet and found that he did better without milk, corn, eggs and chocolate. Milk by far was the biggest trigger. I nearly went crazy during that year looking for answers. I made so many changes all at once that I didn't know what was helping, what was making no difference and what was actually not good for him. In the end I found a naturopathic doctor, a pediatrician I felt comfortable with and I stopped everything and started from scratch...SLOWLY and realized this was going to be a marathon, not a race.

 

I discovered that my son reacted badly to fish oil, but did better with a combination of omega 6 and 3 supplements. As far as probiotics go, my son reacted adversely to several before we found the right combination. My point in telling you this is that what necessarily helps one child may not help another child. I remember one mom posting that if her son was "raging" a glass of milk would instantly calm him down whereas in our situation milk just made my son go nuts.

 

Even in the last few years so much has changed and doctors for the most part are more informed about PANDAS and there is at least now some good journal articles to show your doctor from the NIMH. You are in good hands with Dr. Murphy. Was trying the antibiotic azithromycin an option? I am not sure if it would help but it may be worth a try and you would know one way or the other if your daughter has PANDAS, given that if she does not respond to either the augmentin or the azithromycin positively then PANDAS can be ruled out. In my experience with PANDAS, part of it, is the dramatic improvement with antibiotics. I suspect Dr. Murphy is talking about antibiotics causing a problem with yeast and this being a trigger for tics and rages...it can be a vicious cycle. My suggestion would be to ask for a prescription for NYSTATIN to see if this helps reduce at the very least some of the rages if in fact yeast has become a problem. Have a look at your daughter's tongue, is it kind of "furry, and white"? Nystatin is a very, very mild safe medication. I worked for years in NICU and it is given safely to newborns.

 

There are several yeast treatments that you can do using natural alternatives, we tried several and to be honest my son reacted badly to most of them, I know about the "die-off" effect but my son could just not tolerate it. I myself, tried threelac and seriously it threw me into a tailspin and really if that was "die-off" I'd rather have yeast! My son did fine with the nystatin.

 

Are you using liquid antibiotics or tablets? If you are using liqiud I would also wonder if the food coloring used in it could be a trigger for your daughter.

 

In summary, I would suggest...

 

1) Looking into azithromycin and asking your doctor about this.

 

2) Start thinking outside of antibiotics and PANDAS...read Shiela Rogers book, "Tic and Tourettes"

 

3) Consider nystatin to treat yeast, although this also has food dye and it is "sugary" so not good if these are a trigger for your daughter.

 

4) Look at doing a food elimation diet, I found doing a single food elimination diet the easiest. Basically, eliminate one thing for a week or so and then reintroduce and see what you notice...kind of a basic description...the book, "Is this your child" by Doris Rapp is very good at explaining more about food elimination diets. Remember, think of triggers as pebbles in your daughters shoes, if you remove 5 out of 10 pebbles she will feel better but it is best to remove as many as possible or all of the pebbles. I would suggest removing milk (casein) first, this included ALL dairy products.

 

5) Start looking in your area for a good naturopathic doctor if you are interested in vitamins, hopefully a doctor with experience with children with tics, rages etc. If you do look at vitamins it can be overwhelming and I would caution you to go SLOWLY, keep a diary, and only add one thing at a time. Do not add another until you determine whether something is helping, doing nothing or causing an adverse reaction.

 

6) More recently at night I have been having my son soak in the tub with 2 cups of epsom salts added (I bought a great big bottle of it at Costco for $6 dollars)...and my son really likes his nightly "soak" and is asking for it so I am thinking the Magnesium from the epsom salts must be heping him and I do think he is more settled in his sleep at night.

 

7) I almost forgot, certainly for many of us, we found that in the beginning eliminating "screens" was helpful. TV and even to this day, video games are a trigger for my son and he does tend to have an increase in rage type behavior if he has been playing on our PS2. At one time, I wondered how I could ever, "turn off" the TV and let me tell you our house did seem alot calmer without it, and the TV was not missed.

 

8) Ok, this is the absolute most important thing I can tell you...take care of yourself...this is OVERWHELMING, ask for help, lean on people close to you and although "researching" online and educating yourself is very important, take lots of breaks, limit your time on the computer, and know that with time this does get easier.

[Pandamom]

As simple as this sounds, I follow the advice of my doctors first. Of Course, we have great doctors. There is so much going on for these Pandas kids and the symptoms are so varied and so intertwined. I have also found that on a couple of occasions my "gut" feeling about things has been correct. Our psychologist always tells me to listen to my mommy intuition.