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I don't really know what else to do. I wrote about 10 days ago about my daughter. She was having OCD behaviors, tested positive for strep, got antibiotics, and was doing better two days after starting meds. I asked for advice and got great ideas here. But, after talking to my husband we decided to try and stay with local Drs(he is incredibly uncomfortable working with someone we have never met).

 

I have met or talked with about 4 Drs in the area and they all said they either don't believe in it or don't believe that this is what is going on with my daughter. They can't see the tie. There is one that said she believed in it(an immunologist) but that she will not treat for it and that I need to go to a neurologist and gave me a name. I just want someone to keep her on antibiotics. I also tried to make an appointment with the local Dr. that was recommended to me from someone on here and he has a two month wait.

 

So now she has been off of antibiotics and she shoved a table across the room in a tantrum tonight and went back to telling me how horrible she is and about all of the awful(to her) thoughts she is having. She has also started to spell half of the words she says and told me she doesn't understand why she is doing this. What do I do next? Should I call the Neurologist. Wait a month for the local Dr that has helped one of the kids here or push my husbands to change his mind and go out of state for help? She has been great for the last week and a half. The hand washing went from 30-40 times a day to 3 times a day and not one tantrum. I don't see the handwashing increasing at all right now so maybe I am just being too hypersensitive to a normal 9 year old tantrum. Do 9 year olds have tantrums? Her twin does not and I don't remember her older brother having them.

 

We ended up having a very nice night and played games and goofed off tonight and all seemed normal after the blowup so maybe I am overreacting and I need to wait this out?

 

Sorry for the rambling post. You have all been very helpful.

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I don't think you really have a choice. Is your husband comfortable working with doctors who will not treat or don't know what they are doing? Maybe you could set a deadline...call an expert and make an appointment, then say if she is not better by (insert a date that both you and your husband can agree on)then we'll go see an expert. You can always cancel the appointment if you find you don't need it.

 

As far as working with a doctor you don't know- the "experts" who are recommended on this board have a reputation for being very thorough and compassionate. They spend time finding out all the details and getting to know what is happening with your child- not just a 15min office visit. Its a lot of money if you can't get it covered by insurance- but, its your child.

 

And I would say a 9 year old's tantrum is more like stamping their foot and pouting- maybe screaming something mean out of frustration- but shoving the table across the room and complaining about the thoughts going through her head that she can't stop is not normal- IMHO.

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Hi - it may help to know more about what OCD is. A symptom of OCD can be handwashing, if a child has contamination fears. However, the specific symptoms of OCD can vary widely in a child with PANDAS or can stay consistant. Obsessive thoughts are also a symptom of OCD in a child - it's called "bad thought OCD" and can be very very severe. Feeling a compulsion to spell words that you say is another common symptom. There are many books about childhood OCD, if you or your husband would like to read any. So here are the facts of your situation:

 

Your child got sudden onset OCD that remitted with antibiotics, and returned when the antibiotics were removed. That is not controversial - that is miraculous!

 

While not a rare disease, the research on this illness has unfortunatly been controversial. As a result, local doctors may not have the experience to treat your child.

 

I think peg's advice is very wise. Make the appt, set a deadline. These doctors are often booked up for a long period of time. Perhaps your husband would be more comfortable in a University research environment? Maybe that can be your compromise? In which case, try Tanya Murphy at University of South Florida. In the meantime, try to get the local neurologist booked. Call ahead & ask if they treat PANDAS or not.

 

To be quite frank, this is an awful illness, and it can get worse. It can also remit after about 3 months if the child does not have any additional exposures. But the child, if untreated, is often left with a new baseline level of OCD, that may increase with additional exacerbations. Personally, I would advise you that this illness is nothing to mess about with, and to strongly encourage your husband to allow your child to be treated. You have tried the local options - it's time to get help.

 

Maybe ask your husband to read the blog from the director of the National Institute of Health? He even talks about the groundswell of parental advocacy (yep, that includes us crazy internet parents :)) that is resulting in additional research and focus on this potentially life changing illess, that may turn mental health treatment on its head. Here is the link: http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml

 

Were I in your position, 3 years ago, of knowing how to treat my child at the initial onset, I would do almost anything to get that help. Look forward to hearing how your daughter is doing.

Edited by Meg's Mom
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To be quite frank, this is an awful illness, and it can get worse. It can also remit after about 3 months if the child does not have any additional exposures. But the child, if untreated, is often left with a new baseline level of OCD, that may increase with additional exacerbations. Personally, I would advise you that this illness is nothing to mess about with, and to strongly encourage your husband to allow your child to be treated. You have tried the local options - it's time to get help.

 

Maybe ask your husband to read the blog from the director of the National Institute of Health? He even talks about the groundswell of parental advocacy (yep, that includes us crazy internet parents :)) that is resulting in additional research and focus on this potentially life changing illess, that may turn mental health treatment on its head. Here is the link: http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml

 

Were I in your position, 3 years ago, of knowing how to treat my child at the initial onset, I would do almost anything to get that help. Look forward to hearing how your daughter is doing.

 

Once again, I will echo Meg's Mom here and encourage you to follow your mom's instinct and get your daughter help as quickly as possible, even if it flies in the face of what your DH prefers; in the end, he will thank you. Whether or not its because we physically carry them in our bodies for nine months, feeding and caring for them before anyone else is in a position to do so, it seems also indisputable that, 9 times out of 10, a mom's instincts about her child's needs are dead on. Dads are awesome, and some seem to be able to develop nearly identical instinctual powers, but that's rare.

 

We're one of the families who didn't get immediate help, both because our local practitioners (pediatrician and therapist) at the time shut us down about PANDAS, and because we hadn't found an infectious link yet, either. So, having "treated" our DS's OCD only mentally and not physically for nearly 7 years before arriving at PANDAS and antibiotics, I'm pretty sure he will never again be 100% OCD-free. Yes, we had some short and even some long, extended periods of sub-clinical OCD before trying antibiotics, but each "rebirth" of OCD ultimately manifested as more virulent than the episode before, and the last one sent our DS spiraling out of all control, and finally drove us to seek PANDAS help, despite the naysayers. If I had it to do over again . . . . . . :(

 

So, don't let this opportunity slip away just because your DH is reluctant. My DH was skeptical and reluctant, also, at first, but he's now DS's second biggest supporter, next to yours truly! :P It just takes some folks a little longer to "wake up."

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I fully agree with all of the other posters...this can get better and stay better if you are more proactive. Your Child may heal, and you may never see another exacerbation...but if you do your child's "baseline" may change.

 

I also wanted to let you know that your child may qualify for the new IVIG study.

 

http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_11-M-0058.html@pandas

 

Perhaps bring this to your ped's attention, they may be willing to learn more about it if there is ongoing research.

 

I'm sorry you are going through this.

Edited by Kayanne
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Hi-- and I am so sorry you have had to find the forum.

I agree with Megsmom, if OCD is going away with antibiotics...that is GOOD/Miraculous news! (Regular OCD does not go away with antibiotics...)

-- the fact that your child was better on antibiotics is indicating something.

 

The earlier you can treat, and treat correctly the more likely that this (hopefully) will be your last episode.

 

Read the various families' posts on the forum, go into the last couple of years and you will see that MANY of us have had reoccurences with exposure to illness and/or strep. This is a horrible destructive illness which can render children entirely incapacitated.

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Sorry you're having to go through this, and I can understand having interal disagreements with your spouse as to course of action (I'm living that one right now!)

 

Some additional suggestions (some of these you may already know/doing but just in case):

 

- start tracking your daughters symptoms - tantrums, OCD, anything that she does that is unual. Keep a journal, take notes. I use a spreadsheet that I created based on a numerical scoring system another parent suggested (Buster). Being able to see the improvement/deterioration with the various treatments has helped us work with the doctors immensely. It will also give you a detailed history and timeline to work through if you do go to other specialists. (I'm more than willing to share my spreadsheet if you PM me your email address)

 

- see if your pediatrician will give her a 30 day rx for abx. Explain the significant difference in her behavior and you'd like to see if it was correlated to the abx. Even if he'll only agree to give you another 10 days - start aggressively tracking/noting her symptoms, and if they come back again after that course, you'll have some correlating data to present to your doctor.

 

- make sure you get her retested for strep. Depending on what abx she was on initially, it may not have erradicated the strep entirely. This has been known to happen on many occasions. If your pediatrician won't do this - go to a walk-in clinic.

 

- get the whole family tested for strep. Many kids (including my son) are very susceptible to exposure. They will not test positive for strep, but since PANDAS is an autoimmune response, their bodies will still respond if they come into contact with someone who has strep - even without catching it themselves. If you have a carrier in the house, they may not have any symptoms, but may be causing your daughters reactions. Again, if your doctor won't test the family - just go to a walk-in clinic.

 

- try using Motrin at times of flare up in symptoms. Many parents on here report that using Motrin when symptoms get bad is like a miracle cure. It reduces the inflamation in the blood-brain-barrier and slows the flood of antibodies into the brain. As a parent - this has been my "subclinical" way of confirming to myself that's what we're dealing with. We usually get our son back even from the most severe of rages within 10 minutes with it. And it totally helps with the hard times.

 

Hope this helps!

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Also - I have to reiterate some of the concerns already expressed about the "baseline" OCD. My son was so young at onset, that we thought his drastic behavioral changes were age appropriate - the "terrible twos" and did nothing about it (other than your typical parental type dicipline - which let me tell you - went over like a lead balloon!) Finally, after 6-8 months of living in ######, our day care director suggested we talk to our pediatrician. We did - and fortunately we had been asking for advice from him on his erratic behavior for some time, so he had some of the history already. What we were seeing in our son was primarily OCD/ODD. His tantrums often revolved around something related to the OCD - a compulsion that wasn't being completed, etc... With him being so young (only 2 at the time - but very verbal) he couldn't explain what was going on.

 

Our dr. offered to send us the pediatric neuro or psychaiatrist - noting that they would likely medicate our son. He explained PANDAS - told us of the controversy, it may or may not be real, but people see results with abx. Would we want to try a 30 day rx first? Um - instead of drugging up my 2 year old - that sounds like a plan. Within 10 days he was no longer violent and aggressive, and within 2 weeks - the tantrums were still there, but they were manageable (less than a couple of hours - instead of "until he passed out"). We've been treated with abx for about a year - and got to 85% or so - our issues being his repeated exposures (even catching strep 2x while on abx) and residual OCD.

 

I think the reason the OCD is so hard for us to battle in his case is because in a way, he hasn't known any other way to think. He needs to line up the trains before he leaves school because he's always done it and it always made him feel good to do it (even if it's no longer a compulsion). We're using behavior therapy to help with the residual OCD, and it's working, but without addressing the root cause, it will keep coming back.

 

 

So in a nutshell - yes, the sooner you continue treatment if you saw improvement the better.

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yes, you need a doctor, not a neurologist (yes, I know that sounds stupid), you already know it's infection related, all a neurologist can do, if anything at all, is give drugs and make it harder for you to track baseline and get appropriate treatment, as you won't know what is being caused by the neurologist's drugs.

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If I had chosen not to work w/ a dr I'd never met, my DS would still be in a major PANDAS exacerbation right now because there are no local doctors for us to work with. Our ped will not take the lead and treat but she will take the direction of Dr Trifiletti. It took one year to get help for my son, going from dr to dr, trying to figure out what was wrong with him. I had a parent on a parenting board suggest PANDAS to me and then my dh and I happened to catch the Discovery Health Channel episode about Sammy who has/had PANDAS.

 

The longer you wait, the worse it may be for your child.

 

I took the bull by the horns and called and emailed Dr T and now my son is being treated for PANDAS. My dh did a medical licensing board search on Dr T in the states where he did/does practice to feel better about it. I never had any qualms.

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Just got back home from a pretty busy day. I have a question for MichaelTampa's post. I guess I don't really understand what a neurologist does and why I wouldn't go see them. Do they prescribe like a psychiatrist would? Both my pediatrician and the immunologist that I spoke with said "IF" (they were big on thier if's) it is PANDAS that is who they would send me to. Is that just another mistep that Dr's are taking with this disease? I had called the Neurologist this morning(before I checked here) and they are going to get back to me tomorrow.

 

I did speak with Dr. T and he was great! My DH is insisting on the local route first but I do like the idea of a deadline and setting up an appointment for the future. My husband has never seen the tantrums and my daughter is still at a great baseline right now so he has a hard time taking this to the next level. He did see the other behaviors when she was doing them before the abx.

 

I will also look into the idea of the study for IVIG. I don't know if we are there yet.

 

My daughter is doing great this afternoon. Fighting with her brother and generally doing normal stuff. :-) Phew. I will take it for now. I have been on edge all day waiting for her to come home and was afraid it would be worse.

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Hi I agree with the other posts about not waiting to seek out care from a pandas specialist. However, it can't hurt to see a neurologist to perform simple tests such as an eeg and mri to be certain to rule out anything else. If not for anything else for your own piece of mind that there isn't any other underlying issue to cause these behaviours. Other doctors who aren't pandas believers will send u to other specialists who will waste your valuable time and money and at times looking at you add if u had two heads. I wasted a year going to a psychiatrist and putting my young child on ssri, treating just for ocd/ anxiety. Then I was sent to neurologist, all normal tests... But that's good to know and the best one yet was to see an infectious disease doc. I was sent to this doc by pediatrician even after we saw a pandas specialist because last yr my son had strep, mono and mycoplasma. The doctor was horrible even after showing all the bloodwork, going over a ll the ###### we were dealing with, documenting the endless positive throat cultures. He told me my son looks find on exam and theres nothing he can do for me. I shouldn't have paid him he was infuriating.

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I agree with making an appt with an expert and then canceling if your dtr no longer needs it. As long as you cancel the week before there should not be any cancellation fee. Better to call for the appt today and find you don't need it 2 months from now....then be in a crisis and call to schedule an appt and find you have to wait 2 more months.

 

In terms of seeing a neurologist....remember Dr L is a neurologist. I wouldn't dismiss the local dr because they are a neurologist. I would call ahead. Ask if they treat pandas, and if so, how do they treat pandas. Sometimes you can get them to help you fight the insurance to pay for appts with one of the experts. Granted....it takes a very honest and compassionate dr .....because they have to be willing to say 'I don't know how to treat this and don't know of any local dr's that do' but there are some out there.

 

I pray you can find what is right for your dtr.

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What I meant regarding the neurologist was, it seems clear your daughter's situation is infection related, and most neurologists just aren't going to be able to help fix that. Sounds like Dr. L. is a notable exception, nothing against him/her, that's great. Perhaps there are others, and if you can find one / luck into one, great.

 

I think once one realizes the problem is infection related, for those who want to really fix the problem (all of us I suppose), you just need to find someone that can address the cause.

 

Neurologists can measure some functions, perhaps some scans, and tell you what's not right. If you want piece of mind in terms of what symptoms there are, in case any are very serious and needing immediate attention to prevent harm before the cause is addressed, that is where they could do some good. Seizures are one example, when you have neurological involvement, seizures are dangerous. Perhaps a neurologist could help determine if there is any likelihood of that, and prescribe something to reduce the chances. It's a personal judgment call regarding if it's worth the time and money to investigate that. So I'll back off what I said a little bit, symptom management isn't the be-all end-all, it's no cure, but it can be important sometimes.

 

But the drugs a neurologist will give, I think, will be similar to the psychiatrist's drugs, in terms of, something isn't functioning right, maybe if we toss this in the mix, the new functioning will be better overall. The combination of these drugs along with a neurological system already bothered by an infection related issue which is causing a unpredictable situation, will result in an even more unpredictable situation, and does have risks in itself. So that decision should not be taken lightly, and should be executed carefully.

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I am so sorry. I thought I had already replied again but I went and looked back and I don't see what I wrote. I talked to my husband again and I told him about the study that just opened up. He said that we will go wherever and go to whomever we need to get our daughter taken care of if she continues to backslide. We have had 3 great days with her so I am going to see what she does over the weekend and I am going to try and do a mommy daughter day out to really get to sit and talk with her and see if she is struggling with some of the thoughts again. I am also going to call one of the Drs. on the East and see what the wait time is for appointments. My husband still insists on a face to face meeting with the Dr and we have enough airline miles to do it.

 

So....now I am breathing a sigh of relief knowing that we are on the same page and I can get my daughter help without fighting not only the medical community but also my husband. It is a huge weight off of my shoulders. Thank you again for your support. We are also going to a child Psychologist to give her some ideas on how to deal with some of these thoughts and actions when they do come about. Based on what I am reading it sounds like many of your children have had repeated bouts of this and I thought if she could recognize the feelings and address them with me as soon as possible that then we could get her the medication/treatment she needs if this comes up again. Does that sound reasonable?

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