NBC News Special

[momtotaylor]

Hi,

 

I am new to the board and learned about it through the NBC 10 News special.

 

I just wanted to write and thank the parents of the little girl that went on to NBC 10 about PANDAS. THANK YOU. Before seeing the special, we felt alone. The best feeling is knowing that we aren't alone. When watching this NBC 10 news special, I cried. We knew exactly how you felt. We too have experienced PANDAS through our now five year old daughter. Our daughter woke up a different girl overnight on November 22, 2008. She went to bed "normal" and woke up obsessed with bad words, societal "wrongs" and counting. Her clothes bothered her. She smacked her lips constantly. If you are a parent of one of these children, you remember the DATE when behavior changed so radically. We ended up in the local ER, the CHOP ER, CHOP specialist and most recently a wonderful psychologist that understands and has helped us tremendously. As much as we have researched and as much as we thought we knew, through the news special we learned of a new doctor. Thank you.

 

Our daughter was in Pre-school at the time. We had to pull her out. Now we anticipate kindergarten. She does not want to go. She has progressively gotten better, but we feel that she has some resultant issues including hyperactivity, trouble sleeping and anxiety. If there are rules, she fixates on what happens if she breaks the rules. She is such a rule abiding child, but she worries about the consequences of being bad. That is what seems to make her the most nervous about school. Does anyone have any advice or has anyone been through this?

[dcmom]

Hi Momtotaylor,

 

We too are going through this with our 5 yr old daughter. She had major behavior and personality changes overnight. After four weeks, we found out about pandas (thanks to the internet) and she had a postitive strep culture. She has responded positively to antibiotics. She has been on a cephelosporin, amoxicillin, and now zithromax. All have seemed to work the same so far (although we are only on zithromax day 6).

 

She has missed a lot of school (kindergarten) due to overwhelming anxiety and OCD issues. She is back to school now, and happy to be there. The mornings are the hardest. Clothing remains a huge issue for her- she is only happy in pjs. Getting dressed (and using the bathroom) brings up such anxiety, and this has not gone away with the abx. I wonder if this is just a permanent change, is this something we need to work through with therapy, or is there still brain inflammation? How have you dealt with the clothing issue? I go back and forth with coaxing her to get dressed, or just letting her go happily to school in her pjs. She is only 5, she shouldn't have to go through this anxiety.

[momtotaylor]

Hi dcmom!

 

It is so hard. It is agonizing to go through this day in and day out. It is so hard to see them go through it as well. If you don't mind me asking, when did this happen to your daughter? It has been about three months for us. The clothing was HUGE for us. She has always been a picky kid, but even more so now. She only likes what she likes. Socks were really hard for her. For a while, even through most of the winter, we did not make her wear them. We figured that it was not worth the fight. She will now wear them...inside out! It seems like the seams are what bother her most. Clothing is a different story. She is not as sensitive at the moment. Through the really tough times, it was dresses that made her happy since they aren't as confining. (I buy her at least a size bigger for comfort.) The dresses have to be virtually seamless. (Cotton dresses are best for her.) I also take her out with me and let her pick out what she wants. She feels the inside and tries them on. Also, underwear was also a battle. We have her in size 10!! I guess she likes them very baggy for comfort. The clothing has not been huge for us given that we do not currently send her to school. We currently let her wear what she wants.

 

It has been a struggle for us and we continue to learn more about this daily. Her pediatrician does not believe in the condition. We have switched pediatricians. At about the point that we switched pediatricians, she turned for the better given that it had been about eight weeks from the onset. However, she was put on 10 day amox. anyway. We do not currently have her on any antibiotics. I am now wondering if we should.

 

We have bathroom issues as well. She checks all of our bathrooms to deem which one is cleanest. She has had issues with BMs. She once held it for nine days. She worried about the smell, about how dirty it was, about if she would get it on the toilet seat. Nothing that I would say would make it better for her. It seems as though her obsessions come and go. She gets stuck on one and then that will fade and she will get stuck on another.

 

We too wonder if these changes are permanent. We question if this is normal five year old stuff or it is actually a result of the PANDAS. We have seen a wonderful OCD/Anxiety specialist. Her name is Dr. Tamar Chansky. She is in the Philadelphia area. She has been very helpful to us.

[EAMom]

welcome momtotaylor,

 

is your dd on abs and which one? have to tried adding advil (motrin/ibuprofen)? Many find it helps with PANDAS symptoms. I think the anti-inflammatory effects help PANDAS kid's brain inflammation.

 

re clothes....Have you tried buying your dd really comfy leggings/t-shirts/sweat-like pants that she can sleep in and then go to school withouth changing? (ie have her sleep in her clothes vs. going to school in her jammies!)

[momtotaylor]

Hi EAMom,

 

No, my daughter is not currently on abs. This is all so new to me. We had such a hard time finding support. I just wish I found this message board sooner. Our daughter's first and only bought with PANDAS was November 22, 2008. Finding the help and support that we needed was so difficult. Doctor after doctor after neurologist steered us away from the now obvious diagnosis. We knew nothing about it. There wasn't a doctor that wanted to prescribe the abs that we thought we needed for her. It wasn't until after the initial four to six weeks where she continuously improved with the major obsessions and outbursts that we found a doctor that agreed to the antibiotics. To date and for now, she is much better. (She still struggles, for sure.) I hadn't heard anything about the advil until today. THANKS for the insight. It makes complete sense.

 

Also, the wearing the clothes to bed is brilliant.

[dcmom]

EAMom:

I like the idea of the clothes to bed, but for my dd it seems the clothing is an OCD thing and not a sensory thing. (If that makes sense) None of her preferences, dislikes, regarding clothes make sense- it is more of a mental block than a comfort thing. All of her clothes are already hanna anderson or gymboree leggings with tops- these are not comfortable. There really is no difference from her pjs in feel- again just a mental block.

 

She also really stress about wiping after urinating- I guess she feels she can't get dry. She has taken to avoiding using the bathroom untill it is an emergency.

 

We have just not had enough improvement on the antibiotics. It is so frustrating. Strep is still going around in school (a friend was just diagnosed today). I would love to pull her out for the rest of the year, but she absolutely loves school.

 

Do any of your children have trouble with eating. She will say she is hungry- but cannot find anything that she would like to eat. She now dislikes many/most of her old favorite foods.

 

Indecisiveness is now a problem, as well. I guess it is just an overall raise in her anxiety level.

 

Momtotaylor- behavoirs started mid Jan 09, positive strep after 4 weeks, she has been on antibiotics since. How far are you from Morristown, NJ? There is a doctor there that has been helpful...

[T_Mom]

Welcome MomtoTaylor,

I am so sorry you have had this happen to your daughter. To those of us having dealt with these sudden onset severe episodes it is life changing, needless to say--I am sorry.

 

Did you see a change in your daughter's OCD with the antibiotics?

Do you think the positive upswing you are seeing is due to the antibiotics she was on?

 

Chansky is well respected in the OCD field certainly--wonderful you could get this help.

 

I can say that over the past year and a half we have seen the OCD behaviors dramatically lessen when our daughter is treated with antibiotics (within 48 hours typically) and when our daughter has been on a steroid burst (a few weeks afterwards.) Our d also had feelings of guilt and "woe is me" re: imagined wrongs at times--cleaned public bathrooms obsessively a few times, etc.

It sounds like you are on top of this for your daughter--that is a blessing.

 

T. Mom

 

 

Hi,

 

I am new to the board and learned about it through the NBC 10 News special.

 

I just wanted to write and thank the parents of the little girl that went on to NBC 10 about PANDAS. THANK YOU. Before seeing the special, we felt alone. The best feeling is knowing that we aren't alone. When watching this NBC 10 news special, I cried. We knew exactly how you felt. We too have experienced PANDAS through our now five year old daughter. Our daughter woke up a different girl overnight on November 22, 2008. She went to bed "normal" and woke up obsessed with bad words, societal "wrongs" and counting. Her clothes bothered her. She smacked her lips constantly. If you are a parent of one of these children, you remember the DATE when behavior changed so radically. We ended up in the local ER, the CHOP ER, CHOP specialist and most recently a wonderful psychologist that understands and has helped us tremendously. As much as we have researched and as much as we thought we knew, through the news special we learned of a new doctor. Thank you.

 

Our daughter was in Pre-school at the time. We had to pull her out. Now we anticipate kindergarten. She does not want to go. She has progressively gotten better, but we feel that she has some resultant issues including hyperactivity, trouble sleeping and anxiety. If there are rules, she fixates on what happens if she breaks the rules. She is such a rule abiding child, but she worries about the consequences of being bad. That is what seems to make her the most nervous about school. Does anyone have any advice or has anyone been through this?

[Dedee]

I just want to say welcome and I am sorry that you have to be here. There are many of us here who have been where you are at different times. My son did an overnight as well with severe OCD when he was 5 (he is now 13). Just as you describe, very concerned about rules and constantly confessing and apologizing. His psychiatrist later explained that this is common childhood OCD behavior (I think that is supposed to make you feel better somehow). Anyway, we really didn't have a good PANDAS diagnosis at the time and constant antibiotics were not the thing back then. We ended up using a very low dose of Zoloft that did work for him to get him through the acute phase and keep him in school. There is a distinct caution when using SSRI medications with PANDAS children. It may make them worse if used in too high doses. It should not be taken lightly. This is a very individualized illness and different children respond all together different to what seems to be the same therapy. Very odd. All I can say was that it worked for us for a while until we got a handle on what we were dealing with and found a better option. Now he is off all of that and only takes daily antibiotics with a few other supplements. That took literally years to get to. Some here have chosen to use medications for a short time while others have had a bad experience with them. You really have to use your own judgement. My best advice is to find a really good doctor who is knowledgable in PANDAS and can help you sort this out and come up with a treatment plan. The doctor part seems to be the hardest for most of us. Many physicians are very uneducated when it comes to PANDAS. It is extremely frustrating, Sounds like you are on the right path now. Don't stop now and don't let anyone discourage you. If you need support we are here.

 

Dedee

[EAMom]

Hi Deedee, Momtotaylor, and all,

 

My dd is on Prozac (10mg daily--a lowish dose). Deedee is right, that PANDAS kids can be sensitive to SSRI's. Before we switched to prozac (long story) she was on Lexapro. She did have akathesia and eventual serotonin syndrome on lexapro. The tricky thing is, the symptoms of SSRI overdose in PANDAS kids (anger, defiance, dilated pupils) are easy to confuse with PANDAS itself! So, if you are on a SSRI, then be very careful (and keep your doses low!). Right now the prozac is working for us (she is also on Azith.), I think it helps "dampen" some of the breakthrough of symptoms (including restrictive eating/anorexia) and helps with some pre-existing social anxiety.

 

The other interesting thing I was going to mention (not that I'm encouraging everyone to rush out and put their kids on Prozac!!) is that prozac (and other anti-depressants) appear to have some anti-inflammatory properties, which theoretically might be beneficial for PANDAS kids. http://www.pubmedcentral.nih.gov/articlere...i?artid=1876225 If you google, there are also some articles about the anti-inflammatory effects of prozac benefiting those with MS.

 

So, do use SSRI's with caution, but don't feel guilty about it if you do, especially if it is helping and working for you.

[momtotaylor]

Dedee, EAMom, T.Mom and DCMom,

Thanks for all of the ideas and encouragement. As stated before, these ideas are all new to me. We have not used any medication, except for one 10 day round of antibiotics. We are not opposed to medication; we are trying to control this through behavior therapy. Therapy would not have worked in the beginning when she was constantly worried about everything. Now, she is more receptive to Dr. Chansky's ideas. Some days are great and others are not. Last night, she kept telling me, "Mom, I think I did something, but I don't want to tell you what." Sometimes we just all laugh it off when we know that she will be able to laugh it off too. Other times it is much more of a struggle. I am taking notes with all of your advice, I will do some research and then talk to her ped.

 

I would like to get to a doctor that is more educated in this area. DCMom, indecisiveness is exactly right. That is what we have everyday about everything. If given a choice between two things, she always says she isn't sure which one she should choose. If I ask her if she feels sick, she will tell me that she doesn't think so, but maybe...I am not far from Morristown, NJ. We are about an hour from there. Would you mind giving me the doctor's name? That would be great. We have an appointment on the 15th of this month with her normal ped., but I have a feeling we will be changing as soon as we find someone else.

 

Dedee, your son is 13, how is he now? I am curious as to the lasting effects of PANDAS.

 

What is most frustrating to me is that people don't understand. People tell me...if that was my kid...fill in the blank.

 

Thank you all for your support. I wish I knew about all of you sooner! You have done so much research and I can tell that the health and well being of your children is number one. You all seem so bright. Your children are lucky.

[Dedee]

Hi momtotaylor,

 

To answer your question and give some encouragement, my son is now doing very well. I will be honest, it has been a long road. When he first started showing symptoms eight years ago, there was not much known or talked about PANDAS. We were told our only treatment options were SSRI's. Thankfully he did well with that except when he would get strep again and then it all went down hill and we would start over and change meds around again, change the dose, not really realizing that what he really needed was consistant antibiotics. It was very up and down for several years. He would do well for months at a time then after a strep infection we would have several bad months that would gradually improve. He has always been extremely bright (most of these children are) but of course his grades would drop during PANDAS flare ups. He was IMPOSSIBLE to try to do homework with during these times. Constant crying. Couldn't figure out math that he had no problems with only months before. Looking back now, very typical PANDAS behavior. Of course, back then, I didn't have the information I have now so I thought we were all going crazy. When he was 11, he had strep four times over a few months time. Needless to say, everything started coming back. On the fourth strep episode he woke one morning (while on antibiotics) with explosive violent tics. He had never, ever had tics before, only the OCD. It was extremely frightening for him and for us. It is a long story, but we eventually saw a pediatric neurologist, psychiatrist, infectious disease, ENT, of course our pediatrician. We ended up removing his tonsils and looking for another doctor who had some clue about PANDAS. All of the other specialist we had been to were of no help and by then I had found the diagnosis on my own and talked to my pediatrician about it. She agreed but didn't know much about it. She said she would consider continuous antibiotics (and give a prescription) if I could find a specialist to confirm that this was the best treatment choice for him. We already knew this was what he needed because he did great after his tonsillectomy when they gave him post-op antibiotics. All of his symptoms disappeared, including the horrible tics. When we stopped the antibiotics they all came back. We tried this a couple more times with the same result. We also kept detailed records of his symptoms and what meds he was on and so forth. We ended up traveling several hours to see Dr. Murphy in Florida. At the time there were very few Doctors who knew much about PANDAS and she has done a great deal of research on it. She was very helpful and agreed that this was best for my son and sent a treatment plan to our pediatrician. That was two years ago and he is still do wonderful. He is mostly a straight A student (occasional B's). Does all his own homework with no help from us (Whew). Most improtantly, he is a very sweet, even tempered child. We have had a few minor issues, but nothing compared to what we have had in the past. I think what you have going for you is that there is so much more information now (although still not nearly enough), and at least a few more doctors are being educated that you should be able to find someone to help you through this. You have many more treatment options open to you than we did when my son was 5. I don't see why anyone now should need to see their child suffer for years and years with what is available at this point. Granted, there aren't any real "cures", but much better than where we have been in the past. I am very optimistic that with the wonderful parents we have working on this now, it will move at a much faster pace than in the past. I am very proud that you are taking a stand for your daughter. It is a constant battle, but definitely worth the effort. Hang in there.

 

Dedee

[momtotaylor]

Dedee,

 

It is great to hear that your son is doing so well! It certainly gives me hope. We are still in the process of figuring out exactly what is best for our daughter. I was looking at her CT scans last night and she said, "Oh, I see what is wrong with me, someone took a big bight out of my brain!" It was hysterical, but breaks my heart that she knows that something is wrong and she can't control it.

 

I am sorry that you had such a long road, but it sounds as though he is doing great now! Your son is very lucky that you were and still are so dedicated to figuring out his problems. I wonder how often this goes undiagnosed? For us, we knew that this was not just a classic OCD case. All the doctors were trying to tell us that it was. I think as her parents, we just knew.

 

Thanks for your support.

[momtotaylor]

Dedee,

 

It is great to hear that your son is doing so well! It certainly gives me hope. We are still in the process of figuring out exactly what is best for our daughter. I was looking at her CT scans last night and she said, "Oh, I see what is wrong with me, someone took a big bight out of my brain!" It was hysterical, but breaks my heart that she knows that something is wrong and she can't control it.

 

I am sorry that you had such a long road, but it sounds as though he is doing great now! Your son is very lucky that you were and still are so dedicated to figuring out his problems. I wonder how often this goes undiagnosed? For us, we knew that this was not just a classic OCD case. All the doctors were trying to tell us that it was. I think as her parents, we just knew.

 

Thanks for your support.

[dcmom]

Deedee,

 

It is great to hear your son is doing well. We definately need more success stories on the forum.

 

My next stop is the ENT. Do you feel it was helpful at all having the tonsils out?

[EAMom]

Yes, I also wonder how often PANDAS is mis-diagnosed. I have heard of PANDAS kids on this forum being diagnosed with everything from ocd to tourettes to bi-polar to aspergers when it turned out to be PANDAS (responsive to PANDAS treatments, abs, and/or steroid burst/IVIG). My dd certainly acted bi-polar last year when her PANDAS was at its worst. That, in addition to not eating (PANDAS anorexia nervosa) was really awful. She's much much better now (on 250mg/azith daily, prozac, probiotic, restarted daily advil per the recommendation of our immunologist)...but symptoms are not 100% controlled, nothing full-blown like last year. She definitely reacts when her sister is culture positive for strep (sister is assymptomatic, but cultures positive, strep carrier), and when PANDAS dd has gotten fifth's.

 

We didn't find out about PANDAS until 1 year ago when our dd (then 7.5 years) landed in the hospital with acute food refusal/malnutrition/anorexia nervosa (she dropped 15 % of her body weight in 2 weeks). In hindsight, we realize she had probably had milder PANDAS episodes since she was 4.5 years (initially urinary frequency, then some handwashing/anxiety...)

 

We're planning to do IVIG...when we tried to back off on the Azith to 125mg/daily (she's only 55# so that should still keep the strep away) we also noticed a ramp in symptoms (tics, restrictive eating, handwriting decline...). We (and and the immunologist) think the Azith. is having an immune modulating/anti-inflammatory effect on the PANDAS (in addition to acting as a strep prophylaxis).

 

Dedee...do you think your son may be outgrowing his PANDAS? I wish there was real research to show how these kids do (depending on treatment) long term.