More of our PANDAS story

[PANDAMOMMN]

I decided maybe providing more information on our PANDAS journey would perhaps help others identify what additional information our family should know. It's a long story for only having been our family's life since late Dec./Jan. We have had four different psychiatrists confirm a PANDAS diagnosis--but our pediatrician does not believe in PANDAS. Consequently, we are terrified of what is going to happen next when we have no pediatrician on our "team." Here's the story:

 

My now-8-year-old son, Evan, started acting very "un-Evan-like" just after Christmas. He started out on Dec. 26, 2006 saying he felt like he had staples in his mouth and spitting into the sink every few minutes. Then he started measuring himself every few minutes on a wall growth chart. Our normally compliant, happy-go-lucky child started being very defiant and odd. He sometimes would stare at us like we weren’t even standing there talking to him. His eyes were dialated in late afternoon. He couldn’t tolerate loud noises.

 

We started going to the pediatrician every week, trying to get it sorted out. Initially they said he had a sinus infection and speculated that it may be causing pressure on his frontal lobe, and he seemed to get better right after getting antibiotics, but his behavior became more and more bizarre as we finished the course of antibiotics. He has been prone to both sinus infections and strep infections throughout his life. No strep test was performed in January as the doctor was focusing on the sinuses.

 

Evan seemed to have no idea why he was doing odd things. He couldn't seem to figure out how to put on his coat or boots anymore. He tried to put his stocking cap over his hood, for example, or would forget to put on a shirt in the morning. He couldn't sit still in the afternoons or concentrate at school. He couldn't perform multi-step tasks. He suddenly couldn't follow any directions. He stopped eating anything but bread and milk. He started wetting the bed. He stopped being able to use scissors or write. He was washing his hands until they bled. It was terrifying and very odd.

 

January felt like we were racing against the clock trying to get it all figured out. We had him tested for everything from mercury poisoning to brain tumors to rabies. His second grade teacher was so amazing. She kept saying there had to be a medical reason and kept treating him the same, saying she had a completely different kid in class prior to Christmas but that she didn't want him to lose confidence in himself.

 

I googled like crazy and pleaded with my pediatrician in mid-January that I thought it was something called Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep (PANDAS). The list of symptoms was an exact match. I contacted a PANDAS researcher at the National Institutes of Health (Dr. Susan Swedos) who seemed to agree. Our pediatrician ignored me. We desperately tried to get appointments with mental health professionals, but were put on two-month waiting lists.

 

Then, at the end of January, Evan told several children at school, and the school guidance counselor, that he was going to take his life with scissors or a knife. He had a very convincing plan to carry this out. We were called immediately. We learned when a child presents "suicidal ideations," things are jerked out of your hands quite quickly in this day and age, even if the child is only 7. He was not going to be allowed back in school unless he had had a psychiatric evaluation. Our pediatrician's office told us there are only two places to take such a young child in the Twin Cities for this, Abbott Northwestern Hospital or Fairview Riverside.

 

Because Abbott is attached to Minneapolis Children's Hospital, the children are admitted trough the Mpls. Children's emergency room, so we chose Abbott. Unfortunately, once we got to the Mpls Children's emergency room, it became apparent they had no idea how to handle a child in psychiatric distress. And there were not beds at Abbott until 2 p.m. the next day. Evan was treated very, very badly at Children's and I can't even begin to relate the horrid events that unfolded there. He was put in restraints when he became claustrophobic in the exam room. He was given no less than 5 intramuscular injections of horrible anti-psychotic medications within 12 hours, all of this when he had not eaten for 24 hours. He was given no IVs. No blood tests were taken. It was a nightmare.

 

Once he got to Abbott, things got a bit better (bearing in mind he was in a psychiatric ward with mostly 12-17-year olds-- they just don't get many 7-year-olds there. The first two days there were mostly spent trying to get him back to earth after the horrors of Mpls Children's as the medications worked out of his system. We were not allowed to stay with him overnight, which was very, very hard. He was diagnosed with PANDAS almost immediately as the psychiatrists at Abbott said there is absolutely no other condition that comes on with that combination of symptoms, that quickly. (We have no family history of OCD or mental illness on either side, and Evan had NONE of these behaviors prior to Dec. 26). Initially we were told that the PANDAS diagnosis was a good thing because that meant the damage was probably temporary. I am since questioning how "good" PANDAS is....

 

The Abbott psychiatrist thought that Evan wasn't really suicidal, but that his plans were the result of him feeling so terrible about all things he was doing that he couldn't control or understand. The Abbott psychiatrist started Evan on 30 mg. of Zoloft and handed us off to the University of Minnesota. Our family had no experience with psychiatric medications. We know now that Evan experienced the activation side effect of the Zoloft. At the time, we thought it was the PANDAS that caused him to leap over the furniture, knocking pictures off the wall. We felt as if we had a completely different child in our lives than the one we had prior to December.

 

Even though this has become a lengthy description, it is a greatly simplified, and sterilized version of what have been living. The psychiatrist at Abbott found a psychiatrist and psychologist at the University of Minnesota (housed, ironically, at Fairview Riverside--the hospital we didn't choose to go to initially....) who supposedly were knowledgeable PANDAS researchers. Evan has been going to the U of M to see a psychologist since February. He was enrolled in a new PANDAS study at the U of M. He will not be receiving treatment as part of the study, but his experiences will be followed and documented.

 

His normal life is gone. He hasn't been in school for more than 1 hour at a time since January, missing 42 days of school total. He would run out of the school almost every day. He couldn't handle being in his classroom because it was too confining, but could sometimes tolerate the library. We kept taking him because he really wanted to be there. He was unable to learn anything.

 

He started fainting unexplainably in March and stopping breathing while he was unconcious. This was completely new, as he had never done this before in his life. These symptoms (along with 2-3-hour rages) coincided with our taking him off the Zoloft (at the recommendation of the U of M psychiatry resident). We asked whether the rages and fainting could be Zoloft-related, but no one seemed to hear us. We took Evan to Fairview University Hospital. They put him in the Pediatric Intensive Care Unit. He was claustrophobic. They tied him down to the bed for 4 solid days (this is not even legal we have since found out), ostensibly to keep his IVs in. They performed a sedated EEG, but the results were inconclusive because of over-sedation. They also performed a lumbar puncture. They never did find a reason for the fainting, but started him on an anti-seizure medication just in case seizures were the cause (Depakote at 250 mg twice/day).

 

He was so traumatized by that experience in the hospital that he would not go in buildings, with the exception of his elementary school for the entire months of March, April, May and most of June. He would jump out of moving vehicles if we tried to take him places. Life pretty much stopped for us outside of this house. Experts brought in by our school district suspect he has post-traumatic stress as a result of the hospitalization experiences.

 

Because my husband is am amazing person with unlimited patience, he started taking Evan on drives every single night (Evan called these their "cruises.") in spite of the risk of Evan jumping out of the car. Our therapists told us, "If you can't get him in the building, we can't do anything for you," and left it at that. (We have since found this is also unethical, they should have provided us with some type of plan to help us get him functioning again). We felt so alone and lost. My husband alone came up with the idea of taking Evan for drives every night and then he gradually started working to try to get Evan to go into the local Cub Foods. It is a big, open store and he coaxed Evan to go in to get a slice of Pizza or candy. Eventually they worked into going into a video store.

 

Now he goes in a few buildings, but not many. And so we plod onward. Apparently he has one of the worst PANDAS cases that has been seen in Minnesota because it just won't resolve. His psychiatrist suggested we start him on Citalopram in April. We titrated the dose up very gradually after the Zoloft activation. The psychiatrist said PANDAS kids seem to tend to react differently to SSRIs than other children. Because Evan's OCD symptoms are so out-of-control (has been wearing the same clothing since March, can only use certain "routes" when walking ANYWHERE, can't eat food anyone else has touched, etc.), we increased his Citalopram 2 weeks ago to 10 mg. in the a.m. and 15 mg. in the p.m.

 

And, we are terrified if he gets another strep infection he could be further set back. We cannot get him in any medical facilities at this point due to his anxiety. We did finally manage to get him to go back to the psychologist office in July, but all he has been doing there is playing in a sand table to get his confidence back in being there (at $300/appointment). I don't know what is going to happen regarding school. We have had meetings and meetings and meetings with them, but I don't know if he will be able to participate in school this fall or not.

 

There are many other details I could relate, but this gives a general idea of what we have been through.

 

How long should we expect this to go on?

 

We need a pediatrician who can help us build our child's trust in the medical profession back up, in addition to one who at least BELIEVES in PANDAS. We were wondering about trying to get Evan to Chicago to see Dr. Miroslav Kovacacek ((found him at www.webpediatrics.com)) (I know this is an incorrect spelling). Has anyone seen him?

 

We need to hear some happy endings with PANDAS children. Will this ever get better? How??

 

Thanks for any insight.

[Pamela Kay]

I am sorry I can not offer you advice regarding PANDAS but I did want to offer you some support. If your sons doctor does not believe in PANDAS maybe it is time to find a new one. Did you see the sticky listed at the top of forum "Finding medical Help"? It is hard finding a good doctor who understands, I am still in search of one for my son too.

 

I honestly hope and pray you find the answers for your son. I am sure you will get more responses soon.

 

Pam

[pandtoo]

First, there is hope, and children do get better. It's not easy and it's not a quick process, but it does happen.

 

You didn't give specifics about antibiotics and types of psychotherapy you've tried, so I'll tell you what's worked for us:

 

1. Cognitive behavior therapy for the OCD/anxiety. Traditional talk or play therapies aren't a lot of help in overcoming OCD, and behavior therapy will teach Evan what's happening to him and what to do when he has these intrusive worries and compulsions. You'll need to sit in on the early sessions so you'll be able to reinforce the therapist's techniques. He'll learn that OCD trying to boss him around, but he can be in control instead. [Tamar Chansky's books on OCD and anxiety tell how this works. They're available at Amazon.com.] Try to find a therapist who specializes in OCD specifically, not just in child psychotherapy.

 

Doing a search for a CBT therapist who treats OCD in children in your area, I found: http://www.lakesidecenter.org. Have you tried her?

 

2. Getting the strep eradicated. We found a pediatrician (on the psychotherapist's recommendation) who was willing to prescribe amoxicillin long-term (after a positive ASO titer). It took a month to see significant improvement. It sounds like your pediatrician isn't very supportive, so get recommendations and look for a proactive type of doctor.

 

Good luck, and please let us know how you're doing.

[Chemar]

Hi

 

just a quick word on the antibiotic ....the anecdotal evidence here, and in other reports, is suggesting that AZITHROMYCIN (zithromax) may be the best antibiotic for prophylactic use in PANDAS.

In addition to killing strep, it also appears to have an immuno-modulating effect, which is of great benefit

 

Ronna and Alison have documented their children's experience with azith here

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I am so sorry for what you and your family are going through. Many of us here have gone through similar things - at varying degrees. No matter the degree it is shocking to see our children change before our eyes.

Chemar is right that azith seems to be working best for PANDAS kids. I am trying to understand why your ped. would not agree with a PANDAS diagnosis if everyone else is saying he has PANDAS - including Susan Swedo herslelf!!! How was the PANDAS diagnosed? Has he had the ASO titers tested? What are his numbers like now? Sorry if you have already answered this. I get everyone mixed up at times.

What stands out to me is all of the "treatment" your son has had getting has been to treat the symptoms that come from PANDAS - but not the root cause - the strep. All of these anti-psychotic meds will attempt to treat the symptom - but many here have indicated their kids have had an even worse reaction to these meds. We have never used anything but antibiotics - although early on chlonodine was offered as a way to treat the illness - I fought against it as again it seemed that would only treat the symptom.

Antibiotics are needed to get rid of the strep - some seem to have success with just treating with a round of antibiotics - that did not work for us - every time we stopped using the antibiotics his symptoms came back. We are currently on azithromycin every 5 days with very good results. As Chemar says - it is preventing further infections as well as and more importantly (in my opinion) also working as a immuno modulator.

Early on in my sons illness we did some testing for foods/allergies and found he was sensitive to many foods he ate daily (shocking) while for a normal kid this was ok - for him, with his immune system so out of whack - we needed to reduce any stress on his system so removed those foods - also started vitamins. We also found other triggers such as CRT screen tv and flourescent lights.

You say he is in a study where he gets no treatment but just gets followed. That would be something I would really have trouble with. I would need to look for treatment - I really think waiting to deal with the root cause could be damaging long term. I have also thought if left untreated - that the brain continues to be attacked and then there is potential for permanent damage - luckily I do feel our kids are young and that they will bounce back - with the correct treatment. My son is a totally different kid now than when he first got sick. He is so happy, healthy, focused etc. No more emotional lability - he does tic at times when sick - or exposed to allergens - but those tics are so minimal often I am the only one to notice - even my husband doesn't. So - there is hope - my son could not go out in public when he first go sick - his tics were extreme - with an overnight onset. Keep searching for someone who will let you try a round of azithromycin (at least that is what I would do). I spent every free moment researching this illness - and begged the doctors for antibiotics.

Best of Luck - at such a difficult time. Have faith that things will get better - hard to imagine now - but our kids will bounce back - and one day this will be a part of your past. And somehow - it will have made you all so much stronger. I have a totally different outlook on life as a result of this experience. I find I am a happier person too - much more content and so thankful for little things. When we first started the journey I was so angry and upset - why my child, why us - what good could come out of this - I could not see any way that there would be a silver lining. I certainly wish my son did not have to go through this for me to learn the lessons I have learned - but I am thankful for the inner peace I have found.

[michele]

Chemar, Ronna, other PANDAS parents,

Could someone put a link to the exact article that has been published stating Azith is better then penicillin in treating strep or with PANDAS patients. I have not found it yet. The article I read by NIMH said it was found to be equal to penicillin in a study. I need an article to take to the immunologist stating it is found to work better. He is convinced research is saying penicillin is the best treatment for PANDAS. Thanks if anyone can send the link. Andrew has been on Pen V daily for three months. He has been having a waxing cycle/PANDAS episode since Aug. 21st. His tics are worse, behaviors ADHD are worse and compulsions are increased. I don't know if this is in response to the supplements, meds, being exposed to two viruses that went through the house, stress from school anxiety. I am ready to see improvements. At first the pen v seemed to calm his ocd.

now it is so pronounced again. I wonder if his old self will ever come back. Over time I think the damage gets worse from each episode. I wonder if it can be reversed. He may end up having tourettes and ADHD and OCD permanently. With age and each illness it seems to get more pronounced. No Dr. seem to know or have an exact treatment to follow. When others have had their kids get sick with the antibiotics how long did the tics, OCD, ADHD return for? I need to call the immunologist again. He prescribed the antibiotic in June and has never followed up yet. I tried to get in at the Shands clinic a month ago and still can't get an appointment scheduled. Her assistant said he will call me back. Ihave called NIMH Dr. Sweedo and they never called me back about the antibiotic. We are currently doing the gf diet. I feel like I am torturing my kid with denial of foods. I have not seen any improvements either. I tried the natural lithium and Actos, and AFP and Acytl glucosimine. Do behaviors sometimes get worse before they get better? His compulsions with Webkinz and finger pressing are so upsetting to see. Plus the screaming and shouting and saying inappropriate things are so frustrating to handle discipline wise. How do other tourettes parents handle the bad words like butt, or I hate you or I am gong to kill you. It is like a different person takes over the body.

 

PANDAS Mom I pray for Evan and your whole family. It sounds like he had a really bad reaction for a first episode. It sounds like all his treatment created more anxiety for Evan . I wish you could have had better medical help. Look for a Dr. that will support you and your son. Even if the ped doesn't know they should be able to make referals for qualified neurologists and immunologists in your area. It is tough because the knowledge out there is limited and the Dr. with experience with it are very busy. I am trying a DAN Dr. now because they deal alot with autism and related disorders. At least he seemed more in tune. After all the tests we've had run lately I hope they can find something for my son too. It is very stressfull and not a textbook cure. Hopefully if they get help before too much damage is done to their brains they can return to their normal prestrep self. Please stay in touch and keep us posted on your progress. You are in our prayers as is Evan. God bless.

 

Michele

[michele]

Has anyone tried riluzole and monocycline for PANDAS treatment? I read this lately. Check out this link.

Michele

http://health.groups.yahoo.com/group/PANDA...ort/message/909

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I am not aware of any article that says azith is better than amox. I do think amox is still the preferred choice by doctors and immunologists. The only reason we got the ok for the azith is that the amox. was no longer working. If people are getting good results from amox it makes sense to continue with that treatment, and then have the azith in your back pocket incase amox stops working. The fear for us is if the azith stops working I am not sure we will have any other options.

I think you just have to advocate for your son - go with info from web sites such as this - about how others are doing well on azith. Beg for a trial of azith if you think it might work - if it is working it tends to work pretty immediately - a big difference is usually seen within the week - we noticed an improvement within 24-48 hours. Ask the doctor to explain if there are any risks of trying the azith for a 5 day course - if he cannot come up with any then beg to give it a try based on info you are reading.

Is your son on probiotics as well - I am sure you have mentioned if he is - it is really important with daily antibiotic use.

[michele]

Yes he takes primadophilus four tablets a day. Plus he is on AFP digestive enzymes. I guess because he is still exposed to infections his titers are still being elevated even if he doesn't get the strep. However he still gets the behaviors that go along with the PANDAS. It is very confusing, frustrating and depressing. I don't want to give him all theses meds if they are not helping or worse yet making the situation worse. Do others notice with age and repeat infections the PANDAS symptoms being more pronounced and not going completlely away. I fear the damage has already been done to that section of his brain and he will always have mental health issues. Yes the article I read said penn is still the drug of choice by NIMH. Another said step aside pen and amox for cephalosporins for treating strep. Two Dr. confirmed in their opinions certain strands of strep are less resistant to treatment with azith then pen. I am trying to say research says pen works better for strep then azith. I know others here have found it works better but my Dr. want medical backing to use it. If you can help with this I'd appreciate it.

Michele

 

 

 

I am not aware of any article that says azith is better than amox. I do think amox is still the preferred choice by doctors and immunologists. The only reason we got the ok for the azith is that the amox. was no longer working. If people are getting good results from amox it makes sense to continue with that treatment, and then have the azith in your back pocket incase amox stops working. The fear for us is if the azith stops working I am not sure we will have any other options.

I think you just have to advocate for your son - go with info from web sites such as this - about how others are doing well on azith. Beg for a trial of azith if you think it might work - if it is working it tends to work pretty immediately - a big difference is usually seen within the week - we noticed an improvement within 24-48 hours. Ask the doctor to explain if there are any risks of trying the azith for a 5 day course - if he cannot come up with any then beg to give it a try based on info you are reading.

Is your son on probiotics as well - I am sure you have mentioned if he is - it is really important with daily antibiotic use.

[Dedee]

PANDAMOMMN,

 

First let me say that this is a terrible case of PANDAS and I do believe that your son has been very terribly mistreated by the health care system. This is what happens when the phsychiatric community does not fully understand an illness. I suspect that you and your husband have also been traumatized as well. What a horrific thing to watch your child suffer through and then to suffer again at the hands of those you trust to help him. I can not imagine what you must be going through. Have you heard anything back from Dr. Swedo? Will she be able to see him as a patient? Let me say that your son is so very lucky to have both you and your husband as parents. It is obvious that you both are very dedicated to him and to getting him the best of care. That is great! As for your pediatrician, if at all possible, I would drop him like a hot potatoe. Seriously, unless for some reason, there isn't another pediatrician anywhere near, the last thing you need is that negative type feedback. This is no time for sentiment, your sons life is seriously in jeorpady, we can only choose those who are on our side, so to speak. Next, I would never, ever, unless I truly believe him to be suicidal, take him back where they tied him down. Obviously, you have figured this out. In regards to the medicine, my son also takes citolapram (aka, celexa). Yes, his psychiatrist does say that it often works best in this situation. He did take Zoloft for a while, but after his second flare up of PANDAS related OCD, we had to switch to citolapram. For a while he took as much as 40mg. Since he as started to improve, we have decreased his dose down to 20mg and I am considering going down to 10mg. I absolutely did not like the idea of medication either, but my son did not eat for two days, and as you said he was washing his hands till they bled. At the beginning, the teachers could not teach class for his constant worries. It was just something we had to do so he could get back to "normal", then we worked on the cause. When the tics came along, it was somewhat different and we decided not to go the medication route. I think in your situation, this is such a life altering event, I would try the medications if it would help. For severe OCD, it often makes a huge difference. In addition, I would also try to address the cause, which of course is the strept. Since this is such a severe case it would be best to try to do this with an expert such as Dr. Swedo. My first instinct is to suggest antibiotics, but just bear in mind that there are a few cases of PANDAS (and it is concerning since Evan is so extreme), where the child actually will get worse on antibiotics. I am not sure why this occurs, but there are a few situations when this happens. Some on this forum have experienced it and my sons doctor mentioned this rare event as well.

 

I am extremely concerned for your family and for the well being of your son. You must get proper guidance from a PANDAS specialist for his treatment. I do not feel anyone else can help you. I realize there are others out there who say they know the disease and believe they can treat it but believe me, I have been to these doctors and I have been to the true PANDAS expert, there is no comparison. I can only shudder to think where we might be had I not pushed forward. And let me say that Evan is much more ill than my son was. I can feel your pain in your writing, and I am so sorry that your family is going through this. It is hard to understand why your child must suffer this way. I will pray for Evan and your family. I know that he will come through this and you will get your little boy back. Take care of yourself and be strong for him.

 

 

Peace and Strength - Dedee

[Cum Passus]

Pandamommn,

 

I just wanted to tell you I'm so sorry you are going through this. I felt ill reading your story. You and your family will be in our prayers.

 

God Bless You,

C.P.

[tlkinser]

Hi Pandamomnm,

I am so sorry- your story sounds horrific. Our 5 year old son exploded with tics (vocal and motor) last spring and after several doctor visits and tests, he was dx with Pandas. His titres are now normal and he continues to tic constantly, so the neurologist has dx him with Tourette's instead. Our options at this point are to medicate, something we are opposed to since he's only 5 and we have hope that we can strengthen his immune system and get him well naturally. His vocal tics are nearly every second right now, so I am feeling desperate. We have not experienced the OCD, although he is now licking things and does seem to get stuck on something occasionally.

 

I wish I knew what to tell you or which direction to point you, but I am looking for some of the same answers. I know you have to be exhausted. I agree with what the others have told you about finding a new doctor. I would also try to get in with Swedo or Dr. Murphy at Shands in Gainesville, FL. God bless you and your little boy. I will keep you in my prayers.

 

tlk