Is it dangerous not to treat it?

[ajcire]

My son is about to turn 7. A year ago was when I first started to suspect pandas (because I hadn't heard of it until then)

 

Quick history:

 

Age 2 - an eye blink type tic that the dr. said was just a common childhood tic, no worries... said it would likely come and go and it did.

 

Age 4 - the eye blink still sometimes, a throat clearing that the dr. once again was not concerned about.. said to ignore it, handwashing... not obsessive where it took over but noticeable to me that he was washing his hands a lot more than necessary, hoarding of garbage... this lasted about a month and I confess that mostly we chuckled at it.. I kept finding things I threw out (like clothing tags and wrappers bunched up in his room. He would get panicked if I tried to throw them out again.

 

He also stood out very early on as very bright, extremely early reader, very mathematical... he was always inquiring about time, very aware of routines... patterns... as a special ed teacher I paid close attention to some of this but was reassured by several professionals that he was just a bright child with some quirks. I definitely call him quirky. It is definitely not aspergers.

 

Just about a year ago he started freaking out at bedtime... he was terrified and he needed someone to sit with him until he fell asleep.. if we didn't he would turn into a child I had never seen before... crazy outbursts. I mean bedtime was pure chaos and it came right out of the blue... but 1 day after it started my daughter was diagnosed with strep throat.... at the moment I thought nothing of it. He also had a short short fuse over nonsense stuff and then would be fine in the blink of an eye as if nothing had happened. He also had been using the bathroom a lot. When I asked his teacher (it was the beginning of the school year when this was at it's worst) if she noticed anything noteworthy about his behavior she said nothing at all.. just that he used the bathroom often.. He didn't appear tired but was not sleeping more than 4-5 hours a night because he would wake up constantly needing someone there.

 

I started researching at that point... googled something about sudden fear of sleeping alone and up popped pandas. I had such a light bulb moment while I was reading..

 

Went in armed with my new knowledge to my pediatrician who informed me that I was crazy... I then asked another ped in the practice who told me I was not crazy but it was out of his realm. He found me the name of a dr. that he had referred another patient to for the same thing... another pediatrician who he felt could help. I finally got in to see him in November but the major issues had subsided at this point. Bloodwork did not make him think it was pandas and he suggested trying 5htp for my son. A while after seeing him though my son started with the sleep again and just seemed so angry..... turned out that my daughter had strep again. My son tested positive too but with no symptoms. The dr. put him on 3 months of zithromax and said that he did believe it was pandas and that the bloodwork really didn't mean as much as what I was telling him. This brought us into the month of March. Also by time the bloodwork was done his symptoms had already calmed down.. not sure what would have happened if we had the bloodwork right away when we were in the mist of the crisis.

 

So basically he hasn't been on anything since March.. during this whole time strep was rampant at his school. Every now and then he will simply tell me at bedtime that he is feeling scared and ask me to check on him but no major sleep set back but his attitude, anger toward his sister (just a meanness that I saw the most during his episode) is still back.. a quick temper with things... its all manageable but it's all things I saw go away while he was on the antibiotics. My mother had commented at how much more mellow he was during the treatment period. I hate having him on the antibiotics especially when people think I am crazy and tell me all kids can be mean to their sibling (I totally know this but it's different) and that it's just his personality... I dont even know if the dr. would recommend anything at this point but do you think it's dangerous to just leave him alone if it actually is pandas related?

 

I guess my question is, if it's not definitely impacting his life is it dangerous to not treat it? I wish it was more clear cut if this is what it was for him because then my husband wouldn't think I was just crazy and I wouldn't feel like I am just crazy.

It seems so mild and has not affected school. Socially he has some trouble but no idea if that is related to this or just who he is.

[ShaesMom]

Erica,

 

PANDAS is caused by an autoimmune reaction to strep. This autoimmune reaction causes swelling in the basil ganglia portion of the brain. Do you think it is dangerous to NOT treat brain inflammation???

 

My experience and I believe the experience of others has been that each episode is more severe and debilitating. I don't believe that at this point anyone really knows what the long term effects of not treating Pandas may be. My dd has suffered from severe anxiety and anger. Other children have suffered from negative thoughts that they have been unable to control. Just imagine how it must feel for a 7 year old child to have to live with this daily not knowing how to stop it.

 

This disease not only has affected my daughter but also myself, my husband and my 9 year old son. My son misses his little sister. He misses playing with her. He misses her attention. He misses the attention that he is losing from myself and my husband because we are focusing on her. I know he has been traumatized by her angry outbursts towards him and her inability to go to school. I know he has been traumatized by the hours we have spend trying to get her to take her meds.

 

My daughter used to be the social butterfly in our family. Now she would prefer to sit on the couch and watch tv rather than go outside and play with her brother and friends. At school, she no longer was playing with the other kids but hanging out by herself. She stopped eating breakfast because she didn't want to go to school. She stopped eating lunch at school-we still don't know why. She didn't want to play sports this year. She didn't want to leave my side. Nighttime brought nightmares of danger to herself and her family.

 

Pandas affects everyone in the family and not in a positive manner. I'm sorry that your husband is not on board with you. That has to make it even more difficult for you. Please know that there are many parents here who will support you.

 

IMO-it is to big of a risk to not treat your child.

 

Sam

[colleenrn]

Erica-

First of all, you are not crazy. It sounds like it is very likely that your son has PANDAS. All of the behaviors you described, especially the night time problems, along with the frequent urination, are classic PANDAS symptoms.

 

What was the dose of Zithromax that he was on for three months, and what is his weight? What improvement did you see in him while he was on the Zithromax?

 

Do you see any behavior changes since he stopped taking Zithromax in March?

 

I look at PANDAS as extremely similiar in treatment to rheumatic fever, so in my opinion, he should be on at least a prophylactic dose of Zithromax (could be 125 mg for that age, but my 6 and 8 yo are on 250mg/day prophylactically) to prevent him from getting strep and causing a potentially worse flareup.

 

Colleen

[ajcire]

Erica-

First of all, you are not crazy. It sounds like it is very likely that your son has PANDAS. All of the behaviors you described, especially the night time problems, along with the frequent urination, are classic PANDAS symptoms.

 

What was the dose of Zithromax that he was on for three months, and what is his weight? What improvement did you see in him while he was on the Zithromax?

 

Do you see any behavior changes since he stopped taking Zithromax in March?

 

I look at PANDAS as extremely similiar in treatment to rheumatic fever, so in my opinion, he should be on at least a prophylactic dose of Zithromax (could be 125 mg for that age, but my 6 and 8 yo are on 250mg/day prophylactically) to prevent him from getting strep and causing a potentially worse flareup.

 

Colleen

[ajcire]

Thank you both for your reply.

 

I think my concern is that this is just not clear cut enough for me. I know this sounds absolutely crazy but I almost wish some of his stronger symptoms came back so that I could confirm that this is that.

 

I have only met with this pediatrician that I was referred to 1 time and spoken to him a few on the phone. I was so relieved when I met with him that he didn't call me crazy that I burst into tears in his office just because he believed me that something was not right with my son. I know I should call him back but it's very hard I feel like things are just at a standstill...no major things going on.. just my mommy gut telling me that he is not himself again.

 

I have been to this forum before and asked questions at the time he was on the zithromax and I understood from that that most people felt my dr had him on way too low a dose. He was on 250mg 2 times a week for 3 months. He is about to turn 7... not sure of his exact weight but I would say at the time he was probably 45 lbs.. I don't know what was the 5htp and what was the antibiotics because for some reason my dr had me do both starting at the same time but his sleep anxiety got much better...now he can just tell me if he is feeling scared that he needs me to check on him an extra time and that is only every now and then. His throat clearing had stopped, his general mood was better, calmer.. he wasn't irrational like he gets sometimes, he wasn't over reacting to things. He was not so unkind to his sister and me. I took a big brunt of it but he has gotten much better with me.. his younger sister still takes a lot. He is very kind and good to his little brother. He is not having extreme outbursts or anything... just something about his shortness, his tone, his mood.

 

I had asked the dr. if it was bad if I didn't treat it when I was in debate over the long term antibiotics. He had said that if it was minor, not affecting his daily living.. that it was ok.. but I can see that might not be accurate. He told me though that he felt that the treatment of the 3 months for my son was better than not treating him. He felt that if we could just give his immune system a chance to catch up being that he was constantly being exposed to strep that maybe it would just work itself out after the antibiotics.

 

My dh is a great guy but yes, this has been a huge problem at our house... he doesn't see what I am seeing.

[dut]

I was wondering that if you are finding it difficult to decide whether you are seeing PANDAS at the moment or just normal behaviour changes ( I know the feeling we have been there with definite episodes and some more marginal "episodes") maybe you could do the cunningham blood test.. it may clarify things for you and your drs. We are toying with doing them now even though we're not in an exacerbation at the moment.. I just keep wondering if we're truly at baseline...

[amy s]

Erica,

 

PANDAS is caused by an autoimmune reaction to strep. This autoimmune reaction causes swelling in the basil ganglia portion of the brain. Do you think it is dangerous to NOT treat brain inflammation???

 

My experience and I believe the experience of others has been that each episode is more severe and debilitating. I don't believe that at this point anyone really knows what the long term effects of not treating Pandas may be. My dd has suffered from severe anxiety and anger. Other children have suffered from negative thoughts that they have been unable to control. Just imagine how it must feel for a 7 year old child to have to live with this daily not knowing how to stop it.

 

This disease not only has affected my daughter but also myself, my husband and my 9 year old son. My son misses his little sister. He misses playing with her. He misses her attention. He misses the attention that he is losing from myself and my husband because we are focusing on her. I know he has been traumatized by her angry outbursts towards him and her inability to go to school. I know he has been traumatized by the hours we have spend trying to get her to take her meds.

 

My daughter used to be the social butterfly in our family. Now she would prefer to sit on the couch and watch tv rather than go outside and play with her brother and friends. At school, she no longer was playing with the other kids but hanging out by herself. She stopped eating breakfast because she didn't want to go to school. She stopped eating lunch at school-we still don't know why. She didn't want to play sports this year. She didn't want to leave my side. Nighttime brought nightmares of danger to herself and her family.

 

Pandas affects everyone in the family and not in a positive manner. I'm sorry that your husband is not on board with you. That has to make it even more difficult for you. Please know that there are many parents here who will support you.

 

IMO-it is to big of a risk to not treat your child.

 

Sam

 

Sam,

This is an excellent post. Thank you for your insight!

Regards,

amy s

[dcmom]

Erica- You are not crazy. A mother knows her child, and if something is not right, you need to push the doctors (and your husband) until they are on board. My husband was a little slower than I to understand the seriousness of pandas. I started printing out studies and posts for him to read- that was helpful. He sometimes will still suggest that I attribute any of her problems to pandas. But, I know the child I had before, and the child I have now. She also has an older sister, so I am somewhat schooled on the phases of growing up. Some things are different: sleeping issues, anxiety, short temper, etc. My dd is on zithromax 400mg per week (she is 40lbs), that is a prophylactic dose (and I am not sure it is enough at that). It took her 20 days of 250mg/day to see real improvement, initially. Don't panic, if it is pandas, the most difficult step is connecting the dots, which you have done. Stay strong, and be glad your child is happy, and at a low symptom level.

 

Shaes Mom- thank you for your post. I am so sorry for what your family is going through. It does (somehow) comfort me to hear we are not alone. Pandas has been so difficult for all in our home as well. It has been devestating for me, caused friction at times with my dh and I, and been very traumatic for pandas dd's older sister. I even considering counseling for her. She is 9, and although I have explained it to her- I also don't want to scare her. She is angry with me, and her sister, and at the same time worried sick about her sister. I just hope we can all get a handle on all of this soon.

[thereishope]

The severity of PANDAS varies child to child. Each episode also can vary with symptoms and severity. Just because it is not having a neg impact now doesn't mean it won't strike again worse in the future. My son is not on anything. He has had strep and PANDAS resurface 3 times. My preference would be that he is at least on antibiotics, but no doctor will prescribe it. However, I do believe I am protecting my son to the best of my ability and I don't believe I am a bad mom or not taking care of him.

 

My son also does not get symptoms of strep. I bring him in for a strep test if I experience 2-3 meltdowns. That seems to be tell tale sign. If you've experienced a meltdown, you know how that's different than a child just acting out. If you ever feel like he might need a strep test and they won't do one soley on request, just tell them he's been complaining about a sore throat and he had a fever a couple of days ago or he was exposed to strep.Also keep in mind,that even a cold, allergies, stress, etc may cause some symptoms to resurface for a bit.

[LMama]

Wow. Your situation sounds a lot like our situation with our son. He is almost 6, and we saw the blinking around age 3. At that time we didnot see frequent urination, but he did have to constantly go potty (seemed to have recurrent diahrea for at least a couple of months...so bad that I would have to stop at a store even on the way to preschool so that he could get out and we could finda bathroom so he could go.) This lasted a month or two, and it went a way.

 

(DOES ANYONE KNOW IF FREQUENT (loose) BOWEL MOVEMENTS ARE ASSOCIATED WITH PANDAS TOO???)

 

Then we had a strep episode a year ago, and within a month had a full blown attack of tics (blinking, throat clearning, sniffing, and at least 10 others). I saw the behaviors before anyone else did, and everyone thought that I was crazy until the tics got so bad that you could not miss them. He also was very clingy, fearful that something bad was going to happen to me. Nighttime was an issue for us for sure. He also had emotional outbursts, but we didn't see anyfull blown signs of OCD behavior. Our son was on antibiotics for only about 15 days, and it took him at least 6 months to get better,but he did get better. Our pediatrician did believe in PANDAS, but does not believe in long term antibiotics.

 

Most recently, my husband and I were talking about how we had not noticed any tics for a long time. Then he had a sore throat a month or so ago. Tested negativefor strep, so the pediatrician would not give us antibiotics. A couple of weeks later another sore throat. Again, negative. Started throat clearning again, and has shown some very mild signs of OCD for only a few instances, and he has been very emotional and clingy. I insisted on antibiotics. To make a long story short, he had about 20 days of antibiotics. Tomorrow is his last day of treatment. He has been ok.

 

No major tics except occassional throat clearing that others might think was just allergies. Still somewhat emotional...This morning he spent at least an hour in the bathroom freaking out (crying and stressing) that I "messed up" his hair and he could not get it to go back the way that it was. This went on even after we got to my mom's house (who watches him while I work). Then after about an hour, he was suddenly ok.

 

So ... my point in telling you all of this...I can relate to you... Our symptoms are not as severe and clear cut either...but I definitley see something. We have contacted Dr. Cunnigham and we do qualify for her study, and I am considering sending her his blood sample. There is also a DAN! doctor in our area, and I am in the process of trying to get him in with him.

 

Like you, I feel the same way... I fear not treating him and allowing it to get worse. So far, we have been blessed by only one "severe" episode last year. This year has been very mild so far. But I am fearful that if we don't get a handle on it, it could get worse.

 

I feel for you. You are not alone. I have felt so much support from the WONDERFUL parents on this site. I have learned so much from their stories. Keep searching and advocating for your son. Kudos to you for being aware enought to research this and help him. Good luck with everything.

 

LMAMA

[T_Mom]

Wow. This thread hits home. Thanks to all for posting here--

 

In our case antibiotics were KEY in determining if it may be a "PANDAS" reaction.

 

Antibiotics do not typically bring about behavioral changes! That is not the "on label" use of antibiotics.

Given that there is a behavioral change after a few days of FULL strength antibiotics--I think this is key in making the determination in our case.

 

I am becoming convinced that long-term full strength antibiotics are controlling the symptoms. It is evident after a few days, and continues.

Symptoms went-away with full-strength antibiotics (Amoxicillan.) There is still low-level "stuff" every now and then, but not crippling. She experiences evident relief on the antibiotics.

 

This is not just preventative use to "keep-away strep", but it is (in our case) a definite treatment effect.

Perhaps a month of full-strength may be enough for some.

[ShaesMom]

This is not just preventative use to "keep-away strep", but it is (in our case) a definite treatment effect.

Perhaps a month of full-strength may be enough for some.

 

I believe that my dd has had Pandas for a lot longer than any of us has known. Very possibly since the age of 2 when she had her first step infection and some eating issues shortly afterwards. Through the years I have taken her to the doctor based solely on minor behavior changes that I had noticed. After awhile I started making the connection that these changes usually indicated she had an infection somewhere (UTI's were the most common in addition to the strep). A 10 day dose of abx always seemed to clear things up for a couple of months until we started the cycle over.

 

At some point in Nov or Dec of last year she was exposed again to strep. She never tested positive or complained of a sore throat-only a tummy ache and a headache. Her reaction this go around has definitely been the most severe. I don't know if this is because it took us longer to get started on the abx or if it has just progressed through the years.

 

She has been on erthyimycin since May. It has definitely decreased the severity of her symptoms and allowed to her function. However, this time around the anxiety, anger, aches & pains, and fatigue have not completely disappeared. I would say she has only recovered about 80%. This is why we felt it was necessary to move forward with IVIG. It has been a week now and she is still having some side effects--mainly exhaustation. Overall there has been a huge improvement but I can tell the exhaustation is taking its toll on her mood.

[ShaesMom]

Dcmom-

 

My older child is also 9. Sadly, I know his friends at school started teasing him because his sister was always crying and acting up at school. Their lunch times were piggybacked with her being first. Often she was still in the lunch room with a teacher when him and his friends would come in. She, of course, wanted to then sit with her brother and talk to him. Third graders aren't as forgiving as first graders and he found this very embrassing. I had a talk with the teachers and staff that we needed to come up with a better solution because the last thing I needed was two kids flipping out and of course they thought I was overreacting.

 

My husband is wonderful person but he is not much help when it comes to making decisions or doing research. His response is always "well, what do you think we should do." So between being the full time parent dealing with her outbursts and anxiety I have also felt the majority of the burden when it comes to decision making and educating our family. At the end of the day, I am physically and emotionally drained. I have nothing left to give to anyone else. My story is not unique--I know every family on this board has a similar one. I really don't know where I'm going with all this except to say that this disease really sucks and I apologize if I'm not allowed to use that word.

[colleenrn]

Because the process of PANDAS is very similiar to the process of rheumatic fever, and the protocol for rheumatic fever is prophylactic antibiotics through childhood, maybe you can work that angle with your physician.

If your child is only taking Zith twice per week, maybe you could up it to every other day. My 6 year old who weighs 43 lb. is on Zith 250/day. IF I try to cut it to 125mg/day, his symptoms increase. He would never make it on only twice per week. Maybe your child is the same?

Colleen

[swim]

Wow - your story is like a mirror image of our story in several ways. Our son was an early reader, great at math and did/does everything in a pattern (every lego creation he has ever made is symmetrical). We started with eye blinking, added throat clearing and facial movements. Had bouts of what we thought was EXTREME separation anxiety, frequent urination and OCD behaviors (clothes did not feel good). It all started at about 4 years old and he is 10 now. We felt we were over the hump and "all better" until this past Spring when he got strep and the tics came back very strong. We are recovering from that last round of strep and I feel strongly that we will have him on preventive antibiotics through puberty and who knows how long after that. The chance of another strep infection and another step backward in recovery is not worth the risk. I have seen the antibiotics work and been lucky enough to find another mom just a few miles away that has been through PANDAS with her daughter. The more I read and the more I watch my son with this, I really feel that keeping strep away is a must. It can be hard to come to this conclusion when the symptoms are not very strong, but the steps backward in recovery just get so darn painful.