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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Missmom

In need of reassurance

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I have been on such an emotional rollercoaster for the past two weeks. I have blamed myself for not catching it sooner, etc.... And I think I have lost about 10 lbs. I know this site is filled with moms just like me who are looking for answers but my biggest fear now is if most of these children do get better and go on to live normal productive lives. I wish there were more answers. Do they suffer long term brain damage or have the pandas develop into other things such as Tourette's. There should be a forum on here with follow up stories and testimonials from moms who have beat this terrible illness. I know I am having a pity party here and I am such a worrier, but this is very overwhelming.

 

my dh told me to quit reading so much on the Internet but I feel that I need to be educated... For those of us not seeing a true pandas specialist we absolutely have to know what is going on and what to ask for. Sorry to vent but I feel like crying all day long.

 

My ds12 has always been such a normal, bright, happy, popular, kid. I am afraid now if the other kids see these tics he is experiencing that they will start to make fun of him and totally ruin his self esteem. Middle school years are tough enough without having all of this to have to deal with.

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Miss Mom, I just had to respond because your story sounds just like me. I have lost weight,worried and definately read too much on the internet about pandas, but i also feel like i need to know everything i can to help my son. My 10 year old son is also in his 3 rd episode of pandas and has alot of the same symptoms as your son(blinking,head knob,fidgety ect). Our 1 st 2 episodes were quickly relieved with antibiotics. His 3 rd episode has been much more difficult. I believe my sons problem is also related to strep as his blood tests for strep antibodies are always high when he has a flair.We have had good results with Biaxin,penicillin vk,zithromax, and augmentin,but they need to be in high doses. Our biggest help in the last week has been having his tonsils and adenoids removed. Does your son still have his tonsils and adenoids? Within 2 days of his surgery his tics are 98 % gone. I dont know if this will continue but for now I can breathe a little easier. I always thinks of this as a battle and if 1 thing doesnt work we always have other things to try.(steroids,ivig ect) Good luck with your son.He is so lucky to have a mom who is smart and ready for a fight.

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Miss Mom, I just had to respond because your story sounds just like me. I have lost weight,worried and definately read too much on the internet about pandas, but i also feel like i need to know everything i can to help my son. My 10 year old son is also in his 3 rd episode of pandas and has alot of the same symptoms as your son(blinking,head knob,fidgety ect). Our 1 st 2 episodes were quickly relieved with antibiotics. His 3 rd episode has been much more difficult. I believe my sons problem is also related to strep as his blood tests for strep antibodies are always high when he has a flair.We have had good results with Biaxin,penicillin vk,zithromax, and augmentin,but they need to be in high doses. Our biggest help in the last week has been having his tonsils and adenoids removed. Does your son still have his tonsils and adenoids? Within 2 days of his surgery his tics are 98 % gone. I dont know if this will continue but for now I can breathe a little easier. I always thinks of this as a battle and if 1 thing doesnt work we always have other things to try.(steroids,ivig ect) Good luck with your son.He is so lucky to have a mom who is smart and ready for a fight.

 

 

Thank you for your message. What I find very frustrating is that pediatricians are hesitant to prescribe the strong doses then it can turn into weeks of failed antibiotics. I wish we could just buy them over the counter our selfs just like you can in Mexico and other places. I think that is the reason this episode is going on for so long. What I have found is that urgent care places give higher doses but I really don't want to go that route now especially since the rapid tests have been coming back negative for strep. The pediatrician did ask me if I thought getting tonsils out would help but then I was like "what do you think". He should be telling me what to do..... I am not the expert here.... How Long did your ds third episode last? How bad was the surgery for him? I am open to that if my ds doesn't get better soon. We live in Mississippi so it is at least a two day drive for us to see an expert. Although I would jump in the car in a heartbeat if necessary. Do you have a pandas doctor or just someone who is learning as well.

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My ds 3 rd episode started in september so about 7 months. The surgery was not bad at all, i thought i would have to watch him be in pain after surgery but he did great. He was only given tylenol extra strength after surgery and was shooting baskets outside 2 days later. Make sure if you have it done that they take the adenoids also. The ent doctor suspects that this was the source of my sons infection. He was also given iv antibiotics during surgery and augmentin after surgery. My doctor is not one of the pandas experts but he is on the list as a treating pandas doctor.

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I am up late tonight because I am cooking and cleaning my home and preparing for Easter dinner tomorrow. My two teenage kids just headed off to bed after coloring easter eggs for all of our guests tomorrow, and helping with some of the food preparations. It sounds like something out of a fiction novel, and when I look back on the evening it almost feels that way. It is so "normal".

 

This is very different from last year when I could not hold Easter dinner in my home due to DS' rages. he could only leave the home for about an hour due to anxiety. He did not speak or smile the entire day due to depression.

 

I just looked up my post from last year - on April 14. DS14 was in a horrible exacerbation with some tics, but this time it was mostly oppositional behavior and depression. His case was one of the more severe cases and I often wondered if it was permanent damage.

 

It has been a very long year, but we made it thorough and he is enjoying life.

 

Unfortunately, this all came at a great price to my family. In my own desperation and fear he would not recover, I spent every waking minute trying to find something to help him. Now that he is functional I need to focus on my family and have been working very hard to restore routine, respect, and a sense of calm to the the home. It is not easy but we are moving forward. My recommendation is to take periodic PANDAS breaks and reconnect with your family and friends.

 

I wish you and all of the PANS families well as we all work together to battle this monster. Just remember - you are not alone!

Edited by kimballot

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No, there is no permanent brain damage. Quicker treatment tends to lead to quicker results, but it's not set in stone. Your DH is right - take a break from the internet. It's about balance. Yes, you need to get educated. But you need to attend to the rest of life as well. A lot of relationships get damaged if you don't figure out how to step away. Now, I know it's a consuming thing. I totally get that. You think about it in the shower, in the car, first thing when you open your eyes in the morning. But the permanent damage you're worrying about? It can happen to your marriage and your other kids if you don't give them a certain degree of attention as well.

 

Success stories - I can point to plenty of them. Many are no longer on the forum - rebuilding that life they neglected while their kids were sick. Some of us are in "tweaking" mode where are kids are stable or healing but we still want perfection and continue to be on the forum for ideas or to give support. My kids have been non-functioning. They are now 95%. No one beyond my DH and I could ever see anything symptomatic right now. It's hard to say "my kid is healed!" because as soon as you do, they get a cold and you kick yourself for speaking up. But recovery is absolutely possible and probably more common than you'd think if your reality is only based on this forum.

 

As for tying yourself up in knots about whether your son will get teased for his tics...I get that. My son was a big ticcer. He's had flairs that ruined his impulse control and he temporarily lost friendships. But he's also wiser and stronger for the experience and it's not about helping them avoid a trying time as much as its about giving them tools to help them cope with trying times. Focus on what you can control - his response to hard times - rather than things you can't control - like what stupid things come out of teens mouths. Consider speaking with the class to explain what's happening. Consider getting a 504 Plan that lets your son go to a quiet place - maybe the school psych's office - if tics get bad. Make an action plan for things you can influence. Consider taking 5-HTP or tryptophan for yourself. This is a long journey. You're no good to anyone if you burn yourself out in the beginning.

 

Pandas is horrible. I have lived thru more things than I want to remember. But it's not cancer. Your child isn't a paraplegic. Not minimizing what you're going through. He will get better.

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It's been a long hard road for us, but my daughter has made pretty much a complete recovery.

 

We went through h*ll and back though for about 18 months straight. Initial diagnosis of mesenteric adenitis, then ticking which rapidly became severe chorea. Tons of visits to various ERs, tranquilizers, abx, depakote, tegretol, valium, zithromax, clindamycin, biaxin, medrol, prednisone, PT, a few psychiatrists, cardiologists, gasroenterologists, tonsillectomies on both kids, brain MRI under general anasthesia, several bouts of severe and debilitating chorea (to the point where she was unable to walk or even read) , various blood tests, including the Cunningham test, and finally plasmapharesis. She was diagnosed with Pandas and Sydenham's.

 

She missed so much school they almost held her back, but didn't because she was in the gifted program.

 

I think the hardest part for me was when the kids in her class made her a bunch of get well cards, and when I asked about one of them that was from a kid I didn't know, she said "that's from Cameron, but we don't talk anymore." When I asked why, she said "because when I went back to school, she said 'Hey, your're back! We all thought you were gonna die."

 

She has been pretty much fine since the PEX. She's still on zithro 2x week, and still gets headaches, but otherwise seems healthy. This is the first time in almost 2 years that she has only missed a couple of days of school and is going to try out for track next week and then swim team. She has finally gotten her grades back up to where they were before it all started and is quite a social butterfly.

 

It is possible to survive this mess. I still run her to the doctor for a strep test everytime something goes wrong, but so far they've been negative. I practically go into crisis mode every time she sneezes, but I'm getting better about that.

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Miss Mom -- Yes, you sound just like me too...why else would I be up Easter morning reading the PANDAS forum:) My DS is turning 15 in just a couple of weeks. He has tics, anxiety and OCD. He never leaves the house... Just last year he was in a play and performing music in a talent show...

 

I agree with the Saving Sammy book reccommendation. I also read it and found it comforting. His mom was going through all of this before anyone had ever heard of it. At least a few doctors know about it now. She was strong and determined and that is what we have to be for our kids.

 

Personally, I find the more I know about PANDAS the better I feel. So if it is helping you ...read, read, read...Now that I know more I don't cry as much. My husband is reading too. Maybe you could give your husband a couple of things to read so you can talk about them together. We did just recently get into see Dr Murphy in Tampa, FL and that has helped a great deal. At least I feel like we are on the right track. Are you able to see a PANDAS doc?

 

You are in my thoughts and prayers this morning.

Edited by shannon aka mommy

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Dear mission,

There is hope and things can get lots better! My son also had tics and is now pretty much tic free after IVIg. However, I think it is so important to get to a pandas doctor. You will get the treatment he needs which other doctors do not understand. Could you drive to Dr. M in Florida as someone suggested?

I agree with LLM that many of the parents who are successful have moved on with their lives and are not on the forum as much.

You are doing a great job researching, and I know it all can sound so scary, but there really are treatments that can help dramatically if you find a pandas doctor.

Hang in there and we are here for you!

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Shannon aka Mommy----I would like to hear how your visit went with Dr. M and what her treatment plan is.

 

I have to say that I can relate to this post completely. I also am still not convinced that the changes won't be permanent. Dr. Swedo says after 3 episodes it can become irreversible. I live in constant fear of this, now after being chronic for a few years, yet not "severe enough" to treat with IVIG.

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Missmom.....

 

I am one who is not on so much anymore, but, I tell you I lived on the internet and this forum for years. I really wanted to respond to your post because I totally get what you are saying and feeling. I scoured the internet looking for success stories. Please....just let me find someone who has a child that is okay now. Man, back in 2007 when this started for us....there was basically nothing out there about PANDAS. But, there was just enough that I just knew it HAD to be what happened to my sons as they had both contracted strep in the summer of 2007 and they both presented after that strep. My younger son was "gone." A severe presentation. He was only 4 years old. My perfectly healthy, normal child was hallucinating, had debilitating OCD, was homebound, severe anxiety and vocal tics straight out of "The Exorcist." It was unreal and I too lost 15 pounds in one month. I felt hopeless. What happened to my son? He became mentally ill overnight and riddled with severe vocal tics. I envisioned a "life" of him being homebound...maybe even institutionalized. He was put on antibiotics for the strep.....he slowly started to come around. Just as he was making gains, my older son woke up with multiple motor tics and ADHD type behavior. I thought I would die. For him I envisioned a life of Tourettes. So, my two boys had just morphed....just like that. I took my older son in for more antibiotics and he went from a 10 in tics to a 1 or 2 in 24 hours. It was remarkable. My younger son slowly improved. It is now 5 years later. My boys were 4 and 7 when PANDAS hit. They are now 9 and 12 and both are thriving. Not just making it....I mean thriving. Doing great in school, have lots of friends....they are just normal, happy boys. It is hard to believe that they were ever that ill, especailly my younger son. I was really worried he would have lasting problems...but, he doesn't. I will say proper PANDAS treatment is critical. My sons were treated fairly rapidly and both have had tonsils and adenoids removed.....something I feel greatly benefited them. We see Dr. Latimer and still go for yearly check-ups. Both are still on proph. antibiotics. I personally feel keeping them strep free is a must....and Dr. L agrees and says they will be on abx for quite some time even though they are doing great. We don't want to lose all the gains we made. So, I wanted to share our success as I remember the very dark place we were and these success stories are beacons of light. Oh...to address the permanent damage. I don't believe there is any permanent brain damage... but, it was explained to me that the "pathways" can become permanently altered. I do believe what Dr. K said......"Tourettes is just untreated or undertreated PANDAS." I would assume it could be the same for OCD, anorexia, etc.

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Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.

 

Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

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Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.

 

Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin.

But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic.

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MissMom,

I just wanted to say I understand how you feel as I too have just started on this journey to help my son about 2 1/2 weeks ago. It feels already like months.

I too am going over the internet, have found this wonderful board of moms....seriously, they have been wonderful. And I if you go to look for blogs about PANDAS, you can find more information and links to more info.

I also keep trying to tell myself to look for the silver lining. For us, my son hasn't lost any language which he didn't even get until he was 5 1/2 years old. And also, I wonder if this might help us get rid of the anxiety and OCD that he has had minimally every winter since he was 2 probably. It was only when he HAD strep throat that we saw the major exacerbation and knew to start pursuing PANDAS.

Hold on.

Kim

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