Pandas parents

[bmom]

Could Pandas parents give me any info that they can about their childs situation. Did antibiotics clear all symptoms? Do you also follow a clean diet? Have you done IVIG? What supplements are they taking? What tests have you done? -IGG, Etc. , Did your childs symptoms vanish or a gradual improvement? And do your children still have tic triggers-photosensitivity (this is a big one for me) or foods or anything else that your child avoids? Has any had a steroid burst? Thank you!!!

[mmw]

Could Pandas parents give me any info that they can about their childs situation. Did antibiotics clear all symptoms? Do you also follow a clean diet? Have you done IVIG? What supplements are they taking? What tests have you done? -IGG, Etc. , Did your childs symptoms vanish or a gradual improvement? And do your children still have tic triggers-photosensitivity (this is a big one for me) or foods or anything else that your child avoids? Has any had a steroid burst? Thank you!!!

 

 

Hi,

 

My son is doing well, especially after being off gluten for the past six months. It turns out he was severely reactive and we did not know until we took it away. He started having PANDAS episodes before age 3. They also occurred with sinus infections. He is on azith every 5 days. He has been on antibiotics for a good year. He still has minor symptoms, including occasional episodes that used to precede strep. It is a weird phenomenon where he wakes up during the night and sees lights and things in the dark. Even on antibiotics, he has one of these once every couple of months.

 

We are seeing a chiropractic neurologist who, knowing nothing of PANDAS, told me those nighttime episodes are seizure-type activity in the basal ganglia. Makes sense. I hate it that it is still happeneing, though.When symptoms have flared up, tv and car rides are definite triggers. I have him wear sunglasses in the car. We have done IGG and avoided highly reactive foods for about two years until his gut was healed by avoiding gluten.

 

We avoid any chemicals, preservatives, etc. I switched to all-natural cleaning products...stopped vaccinating...things I thought were nonsense before. Sorry my answers are all over the place...he takes a lot of supps, chiropractor wants me to wean off and feels most are no longer needed. My son is doing well and is finally reacting "normally" to illness. He used to never ever have a runny nose or fever, which is not normal.

 

How old and how severely affected is your child?

 

We have a supportive pediatrician and have also used an environmental physician for the testing. My son never went to a neurologist and we never had the pandas panal done. But my records of the pattern [nighttime episode, next day separation anxiety and tics, peeing accidents] then a diagnosis of strep and symptoms remitting were enough.

 

HTH

 

MMW

[Pudgeo]

My son had a fever in JAN 07 and has never been the same..after being misdiagnosed with seizures by Kaiser for a year, we were trully a mystery to all the Dr's..meanwhile my son kept getting worse...anxiety/panic...things he never had before, he was a walking zombie(still is) finally I went to a ND naturo-path who did a ton of tests on my son...PANDAS panel for antibodies came back off the charts abnormal..finally I have an answer....but that was 6 months ago and we are still not better!!

 

Kaiser has done 2 IVIG for me..they are supposed to do at least 2 more...we are on a ton of supplements..nothing is helping! We are going to try IV chelation starting this week for every week to see if that helps! (metals will seriously mess up the immune system)

 

I'm just at my end with this...seriously...SOme Dr believe in anti-biotics..my Kaiser Dr doesn't want to try that while we are doing IVIG..too many things at once he thinks. I've researched where azithromycin is an immune modulator and I may try that thru my DAN! if all else fails....SHe supports trying it..I am trying an anti-viral first to see if that helps?

Meanwhile my son keeps regressing academically and walks around like a zombie and now has full blown OCD. I am also very close to trying anti-psychotic type med for OCD soon....anything for some relief!I will say his vocal & hand tics have lessened..

I posted about possibly getting a 3-D brain scan...Sarah

[nurseg]

My son had a fever in JAN 07 and has never been the same..after being misdiagnosed with seizures by Kaiser for a year, we were trully a mystery to all the Dr's..meanwhile my son kept getting worse...anxiety/panic...things he never had before, he was a walking zombie(still is) finally I went to a ND naturo-path who did a ton of tests on my son...PANDAS panel for antibodies came back off the charts abnormal..finally I have an answer....but that was 6 months ago and we are still not better!!

 

Kaiser has done 2 IVIG for me..they are supposed to do at least 2 more...we are on a ton of supplements..nothing is helping! We are going to try IV chelation starting this week for every week to see if that helps! (metals will seriously mess up the immune system)

 

I'm just at my end with this...seriously...SOme Dr believe in anti-biotics..my Kaiser Dr doesn't want to try that while we are doing IVIG..too many things at once he thinks. I've researched where azithromycin is an immune modulator and I may try that thru my DAN! if all else fails....SHe supports trying it..I am trying an anti-viral first to see if that helps?

Meanwhile my son keeps regressing academically and walks around like a zombie and now has full blown OCD. I am also very close to trying anti-psychotic type med for OCD soon....anything for some relief!I will say his vocal & hand tics have lessened..

I posted about possibly getting a 3-D brain scan...Sarah

 

 

 

My son is 7 y/o and had his first strep infection officially diagnosed 3-13. On 3-15 he started with a dramatic neck jerking motion I'd never seen him do before. His titers 5 days later were normal, but he had been on Amoxil that 5 days? We've since seen his pediatrician several times. a ped. neuro twice , and are due to see the DAN doctor for the second time tomorrow. He's been on Amoxil, Keflex, Suprax(these all short-term for the infection itself), as well as Pen VK for 6 wks,then followed by Zithromax for 4 wks. While he is some better from the initial tic, the neck jerk is still there, along with other issues I feel may be related.

I am at a loss too. The neuro finally said PANDAS at our 2nd visit. The DAN felt it was this from the beginning, but a recent E-mail he told me if the Zith hadn't helped much it "probably" wasn't PANDAS. I'm going to ask him LOTS of questions tomorrow, and hopefully get titers redrawn along with a steroid burst trial. All I can do is continue to pray for my sweet boy. I feel helpless.

 

Glenda

[dut]

Hello.

 

Our now 5 year old dd had on/off sore throat and cough from Sept but dr kept saying it was just viral. 1st minor episode she stopped wearing normal socks 'cos of seams and had some low level mood disturbance. The mood stuff went away after a couple of weeks and at the time we thought nothing of it. 2nd episode also went under the radar, she had vomitted and 2 weeks later started asking questions about food contamination but only a few a day. Looking back she had vomitted just before the 1st episode too, suddenly and violently with short duration and no other symptoms. We now wonder whether that's her response to strep toxins??

 

Her 3rd episode was when alarm bells rang. Within 3 days she went from normal kid to very pronounced OCD. She had extreme fears of contamination and was handwashing. We recognised it as OCD and after lots of googling and finding PANDAS we had her at the drs a week later. Our dr had seen PANDAS once before. Her culture came back positive and she had a 14 day course of amoxi. 1 week into the course she was much worse and was being inattentive, hyper and crying at the slightest thing. She was now only willing to wear 2 tops and two very old and soft pairs of pants and seemless socks. She was extremely oppositional and downright mean. It was if another child had come to live with us. She became clumsy and had started some facial grimaces and grunt type tics. Her OCD and general anxiety were really bad. Her eyes had gone from those of a 4 year old to an adult.

 

A week later though symptoms were down by 75% and continued to sawtooth for another week after the end of antibiotics. Over the next 2 weeks we went down to maybe 3% of original symptoms. We then went on azith 250mg once/week 'cos our dr said strep was still bad in our area. 2 weeks in we saw a rise in symptoms this time with a very sore bottom.. we now think it was perianal strep. Azith was upped to 500mg once /week. Sore bottom resolved in 24 hours (before we swabbed it of course!) and so did symptoms. We are now symptom free and have been for 4 weeks.

 

The only symptom that remained was sensitivity to clothing but that has slowly lessend and she is now back into most of her clothes.

 

We stopped antibiotics 2 weeks ago and so far no return of symptoms so we will probably keep off until strep season returns.

 

We give her cod liver oil, multivit, cal/mag, probiotics and monolaurin. She was tested for gluten sensitivity, inflammation CRP and ESR, ASO and DNase (sp) and thyroid. All came back normal even the strep titers. We are considering further testing but feel like letting her enjoy this medical free time, she very quickly became a medical case not a child even to me, in fact, perhaps most to me and I don't want that for her or the rest of us.

 

We've been lucky in that symptoms are gone but obviously don't feel as though we've seen the back of it. My heart pounds if someone coughs next to her,I feel like taking them down SWAT style :-)

[Pudgeo]

I am finding that some folks have alot of luck with azith and some don't...Dr K the PANDAS Dr in Chicago said he uses augmentin for PANDAs...but my DAN! said she would much rather use azithitromycin than augmentin??

I'm just getting very worried because my son will loose his placement at school if I send him back like this. He was never a behavior issue, was always happy & cooperative before. Now he's a mess...Sarah

[dut]

I've read that 6% of children that get strep throat get perianal strep which can be very difficult to get rid of. Symptoms may not show as the strep takes up residence within the anal passage. Even "normal" perianal strep can take much longer courses of antibiotics and sometimes more than one course to be eradicated.

 

I wonder whether in some of these children we are seeing an ingrained infection that isn't being got rid of with normal levels of antibiotics. They don't have strep throat but maybe have it lurking asymptomatically somewhere else.

 

I know this is anecdotal but we have a family friend who was very ill for 3 years with seemingly inexplicable heart and lung problems. Early on in his illness he had been given a number of courses of antibiotics for throat infections. After a lot of going round the houses it was finally determined that he had a low grade but resistant infection. He was put on a cocktail of 3 antibiotics at high doses and all of his symptoms resolved.

[Pudgeo]

Yes I trully believe infections can harbor in other areas of the body..My friend's son has PANDAS too...she was doing some protocal to clear up his gut and wow huge exposion of OCD..seems she had stirred up a lingering strep infection..she always wondered why her son hadn't goten sick and had never gotten strep when his sister had it numerous times.She did a PANDAS profile on him and his anti-bodies were very high too.

ALso you do not have to have high ASO titers for it to be PANDAS! my sons were elevated slightly but never really high..Sarah

[bmom]

Thank you all for the response. Your info has been valuable and I hope you all get success with your children. It sounds like most of you have found docs that are at least open to helping even though titers are normal. That is my biggest feat. My sons titers are going down and I hope that convinces someone. He has shown clear improvement on antibiotics several times. Thanks again.

[trubiano]

Pudgeo!! Please beg for antibiotics! Your son sounds just like mine. It took a good three months on PCN before the tics and behavior seemd to just go away, but it did! I remember thinking nothing was going to help. My son still has flare ups and I tried to take him off the PCN this summer and with in a week the tic and OCD came back. As soon as I started the PCN it went away again. I do not know why the antibiotic works, but it does.

 

As for the original posts question we are on PCN, fish oil, and a probiotic. Allergy testing showed no food allergies, but I sometimes still wonder the way my son craves bread if I showed take him off it. His tics are pretty much gone. We deal with the OCD, confusion, rage, and focus issues which flare on schedule every 4-5 weeks. On a good note he was able to see the fireworks this year without having a huge melt down from the sound! I didn't even have to plug his ears!

[Dedee]

I just wanted to give my input since we had such a dramatic response to antibiotics. First off let me say how sorry I am for what you are going through. It is horrible to see your child suffer that way. My son began his PANDAS journey six years ago after a strep episode. He literally woke up one morning with extreme anxiety and OCD behavior. It got so bad that he didn't eat for two days because of fear of contamination. At that time his pediatrician recommended Zoloft to help him through the acute phase. We didn't actually have the PANDAS diagnosis at that time. He remained on an SSRI because his symptoms would vary in intensity over the years depending on strep exposures. The medicine was very helpful in getting us to a workable place with him. We have since weaned him off. At age 11 he had several strep infections in a row and woke one morning with severe tics (he never had tics before). That was when we finally got the PANDAS diagnosis. We requested to have his tonsils removed and when he had surgery, they gave him post-op antibiotics and amazingly all of his tics disappeared. When that course of antibiotics was over, the tics returned within 48 hours. I called his pediatrician, and she said we could try another round to see what happened. Well, same thing. Within 48 hours of starting them all tics were gone. When we stopped it, they returned. So that is when I started doing research on my own and found that this happens with many PANDAS children. So I talked to my pediatrician and she felt uncomfortable with the whole antibiotic daily thing, but said if we found a specialist that recommended it she would write the script. We went to a neurologist and a ID in our area who both knew very little of PANDAS and would not recommend it. So we made a 7 hour trip to Florida to see Dr. Murphy at the Shands clinic there. She has done a lot of research on PANDAS. She was wonderful and end result was that she sent a letter of recommendation to my pediatrician for daily antibiotics. So that is where we have been for almost two years now. He is so much better, and I thank God every day that I was lead to Dr. Murphy. Recently he suffered an accident and broke his arm and has had to have several surgeries. Some anxiety has returned with that trauma, but I am hoping it will ease off as things get back to normal. We were told that we could stop the antibiotics every year or so and see if the symptoms returned, but I haven't even considered it yet. I am just so thankful for the results we have achieved. He takes amoxicillin 250mg twice daily. This is really a mild antibiotic which makes me feel better that we have something stronger to move up to if necessary. I hope you are able to get things resolved soon. This is so stressful on families and a terrible thing for the child. Keep us all updated. Good luck!

 

Dedee

[michele]

Our situation is very similar to Dedee's. We also as a last resort after four years of repeat PANDAS episodes and not finding a local Dr. to prescribe anything, went to expert Dr. Murphy at Shands in Florida. It was she who put in writing a plan for us. It included Augmentin or Omnicef daily 250 mg. as a prophylaxis. Also she gave me a heads up on the ADHD component and how it causes one of the biggest issues along with the OCD. She also told me to get him OT for the motor delays. She said he would most likely need a med like Tennex for the tics and emotional issues. She also predicted the school issues and suggested testing for learning issues. She was right on the mark for us. We now take daily Omnicef which wards off strep infections. Also Abilify for the tics, ADHD and OCD. It has helped greatly. However, he still gets setbacks when exposed to others who are ill. We recently had illenss in our home with tonsilitis and a flu bug. He still gets the emotional behaviors like a TS emotional rage. He did get the verbal tics but they are minor. It is not perfect but I think it is much better then last year at this time when his immune system was heightened after his immunizations. A that time he had worse tics and behaviors. Because there is no textbook on how to treat PANDAS this is really a rough road for our kids. I have gotten to the point I just accept the TS diagnosis and try to follow the same treatment protocal but add the antibiotics to ward off strep. I have never been able to get a prescription for Azith but guess it can be used down the road if Omnicef stops working for us. I hope this helps you and I pray the medical community begins to acknowledge PANDAS soon for our kids sake.

 

Michele

I just wanted to give my input since we had such a dramatic response to antibiotics. First off let me say how sorry I am for what you are going through. It is horrible to see your child suffer that way. My son began his PANDAS journey six years ago after a strep episode. He literally woke up one morning with extreme anxiety and OCD behavior. It got so bad that he didn't eat for two days because of fear of contamination. At that time his pediatrician recommended Zoloft to help him through the acute phase. We didn't actually have the PANDAS diagnosis at that time. He remained on an SSRI because his symptoms would vary in intensity over the years depending on strep exposures. The medicine was very helpful in getting us to a workable place with him. We have since weaned him off. At age 11 he had several strep infections in a row and woke one morning with severe tics (he never had tics before). That was when we finally got the PANDAS diagnosis. We requested to have his tonsils removed and when he had surgery, they gave him post-op antibiotics and amazingly all of his tics disappeared. When that course of antibiotics was over, the tics returned within 48 hours. I called his pediatrician, and she said we could try another round to see what happened. Well, same thing. Within 48 hours of starting them all tics were gone. When we stopped it, they returned. So that is when I started doing research on my own and found that this happens with many PANDAS children. So I talked to my pediatrician and she felt uncomfortable with the whole antibiotic daily thing, but said if we found a specialist that recommended it she would write the script. We went to a neurologist and a ID in our area who both knew very little of PANDAS and would not recommend it. So we made a 7 hour trip to Florida to see Dr. Murphy at the Shands clinic there. She has done a lot of research on PANDAS. She was wonderful and end result was that she sent a letter of recommendation to my pediatrician for daily antibiotics. So that is where we have been for almost two years now. He is so much better, and I thank God every day that I was lead to Dr. Murphy. Recently he suffered an accident and broke his arm and has had to have several surgeries. Some anxiety has returned with that trauma, but I am hoping it will ease off as things get back to normal. We were told that we could stop the antibiotics every year or so and see if the symptoms returned, but I haven't even considered it yet. I am just so thankful for the results we have achieved. He takes amoxicillin 250mg twice daily. This is really a mild antibiotic which makes me feel better that we have something stronger to move up to if necessary. I hope you are able to get things resolved soon. This is so stressful on families and a terrible thing for the child. Keep us all updated. Good luck!

 

Dedee

[P_Mom]

Michele,

I was looking over some of my notes and I had written down something that I thought you had said Dr. Murphy recommended. My notes say Pen VK as prophylaxis, and then Augmentin for two weeks for a flair. The above post mentions she recommended Augmentin or Omnicef as prophylaxis....did I get it wrong? If so, what does she recommend for a flair? And, only 250 mg of the above antibiotics daily? Just a little confused....thanks!

 

Kelly

[bmom]

I guess I just keep plugging away at seeing if this is PANDAS. My son had his tonsils and adnoids out and hours after giving him Amox. the tics, separation anxiety, and fears were almost gone. We finally found a specialist who said it was PANDAS and agreed to preventative. We were on day 8 of tonsil removal and antibiotic with tics and everything getting better and then now they are all back. Were we just in a wane phase? Did your PANDAS kids do this- he was exposed in March to strep and this all began again then. How could it all be gone and then back on antibiotic? He does do this with wax and wane, but it really seemed to be tied to timing the antibiotic. Did your kids just clear up completely with antibiotic? Was it a slow process with setbacks? Did they go away and come back like that while their titers were coming down?

[faith]

bmom,

I thought your son's titers were showing normal when you first tested? I forget, Why did he get tonsils removed? Don't forget that some of us here note a waning of tics when our kids are sick in bed with fever, vomiting, etc., so who knows, maybe the body is busy fighting off the illness and using that energy for that purpose, thus the waning of tics.

 

Do you really feel the symptoms got better all the way on antibiotics, or just about 50% or so?

 

Faith