Our PANDAS story

[PANDAMOMMN]

I first posted to this site in Sept. 2007, in our first year with the PANDAS in our life. My son is 10 and though life is much more functional and liveable, he struggles daily. I'm excited to see so much more activity under the PANDAS heading here! My initial post was buried somewhere else in the site. 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 that has been our family's life since late Dec./Jan. 2007. We have had four different psychiatrists confirm a PANDAS diagnosis--but have struggled mightily finding a pediatrician who fully believes in PANDAS. I feel this failure on the pediatrician end resulted in much more damage and trauma in our lives.

 

Here is our PANDAS story.

My now-10-year-old son, Evan, started acting very "un-Evan-like" just after Christmas 2006 (at ate 7 1/2 and in second grade at that time). 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 she 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. Because I could see an improvement on the antibiotics (Zithromax) and could definitely see when the Zithromax dosage was waning that he got worse, I pleaded for continuation of the antibiotics. The pediatrician refused.

 

A perfectly normal and fully functional child before, 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 2007 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 2007 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 refused to see him at that point and told us at that time 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 at 3:00 p.m., 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. A resident took my husband aside and said, "I don't know what your religious beliefs are, but have you considered exorcism?"

 

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, 2007). 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 started going to the U of M to see a psychologist in February 2007. 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. From February to June 2007 my son could not be in school for more than 1 hour at a time. 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 2007 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 the psychiatrist and pediatrician whether the rages and fainting could be Zoloft-related, but no one seemed to hear us. We took Evan to Fairview University Hospital when he was repeatedly passing out and turning blue in March. 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 2007. 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 suspected he suffered post-traumatic stress as a result of the hospitalization experiences at Fairview University.

 

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 grocery store. 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.

 

Over the years, we worked back into going into buildings gradually. And so we plod onward. Apparently he has one of the worst PANDAS cases that has been seen in Minnesota because it just wouldn't resolve. His psychiatrist suggested we start him on Citalopram in April 2007. 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 (wore the same clothing from March to Sept. 2007, could only use certain "routes" when walking ANYWHERE, couldn't eat food anyone else had touched, etc.), we increased his Citalopram 2 in Sept. 2007 to 10 mg. in the a.m. and 15 mg. in the p.m. The OCD almost completely went away with the increased Citalopram dosage and the passage of time.

 

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 to hear some happy endings with PANDAS children. The child has no friends anymore. He has an amazing, upbeat attitude, but every day is still a bit of a struggle.

 

Any thoughts, folks?

[Guest Angela Shaw]

What a horrible time your family has gone through. I am so sorry to hear it. Has be been on a high dose of Augmentin XR or Zithromax? Is he on prophalaxtic antibiotics? Maybe I missed that? That is the first line of defense against PANDAS.

Angela

[dcmom]

pandamom- I am so sorry for your son and family. Yours is certainly a story that shames the medical community. Do you have a good pandas doc now? There are only a handful. Would you consider taking a trip to see Dr Latimer in Bethesda, MD or Dr K in Chicago? Your son probably needs plasmapheresis and/or IVIG along with full strenght antibiotics long term. Please fill us in on your son's current details and treatment.

[thereishope]

I am so sorry you have been living this for so long. But know you have so much support here. I, too, would like to know what he is currently taking? There are still options out there that may help your son so don't lose hope! I agree that a good amount of success has been with chidlren taking Zithromax or Augmentin.

 

What are his current symptoms?

 

For now, try giving him some Ibuprofen and see if that helps at all. I can't say it alway works, but for some it eases some of the problems.

 

My son also had OCD. Some involved agorphobia, and issues with going out into public or into buildings. Let me tell you, now he is fine. He leaves the house no problem, runs around outside with no "protection" like a coat or hat arms extended like an airplane-not a care in the world, he looks up when he walks and no longer looks down at the ground. Just don't ever give up hope.

[PatAnne]

Dear God in heaven! Try to see Dr. L. asap, you WILL get your son back!

BIG hug...

 

PatAnne

[KeithandElizabeth]

I am so sorry for the pain your whole family has suffered.

 

I would recommend consulting with Dr. Kovacevic (webpediatrics.com) over the phone since he often does phone consults.

 

We had one phone consultation with him and it gave me so much hope!!!!

 

It would be nice to find someone locally to treat your son, but you can always fly to either Dr. Kovacevic or Dr. Latimer for treatment.

 

I would try calling local immunologists to see if anyone is willing to work with PANDAS. Our initial doctor treated our son by consulting with Dr. Kovacevic on IVIG dosage levels and antibiotics amounts.

 

Keep us posted!!!

 

Elizabeth

[PANDAMOMMN]

What a horrible time your family has gone through. I am so sorry to hear it. Has be been on a high dose of Augmentin XR or Zithromax? Is he on prophalaxtic antibiotics? Maybe I missed that? That is the first line of defense against PANDAS.

Angela

Thank you for your quick reply! We had not been on prophylactic antibiotics over the past nearly three years until just this fall. Our pediatrician (not the original woman who ignored the symptoms, but a better one in the same practice) has been very opposed to antibiotic use. He finally relented and allowed us a prescription for amoxicillian that we have used for about three weeks. Doesn't seem to be doing too much.

 

When my son had mycoplasma pneumonia in Sept. and was on Zithromax he was a COMPLETELY different child--so much better. We realized we had seen the same thing after an antibiotic injection when he had strep in May. However, the pediatrician was very skeptical.

 

What type of antibiotic results have you seen?

[dcmom]

In our initial episode, dd cleared her pandas issues after 30 days on daily zithromax. Although, it has not been as clear cut since then, in my opinion (and many others here) daily zithromax has definitely helped to keep this under control. I believe it is key. My dd is 36 lbs and on 200mg of zithromax per day. Amoxicillin did nothing for us.

 

I really think you need to get to Dr Latimer or Dr K asap. They will give you the antibiotics your son needs- while we see Dr L, I believe it can be said for both that they are responsive to the changing needs of our kids- and willing to "experiment" with different doses and different antibiotics, as well as pex and/or ivig- until you get results.

 

My thoughts are with you and your family. You have been through so much....

[Suzan]

What a horrible time your family has gone through. I am so sorry to hear it. Has be been on a high dose of Augmentin XR or Zithromax? Is he on prophalaxtic antibiotics? Maybe I missed that? That is the first line of defense against PANDAS.

Angela

Thank you for your quick reply! We had not been on prophylactic antibiotics over the past nearly three years until just this fall. Our pediatrician (not the original woman who ignored the symptoms, but a better one in the same practice) has been very opposed to antibiotic use. He finally relented and allowed us a prescription for amoxicillian that we have used for about three weeks. Doesn't seem to be doing too much.

 

When my son had mycoplasma pneumonia in Sept. and was on Zithromax he was a COMPLETELY different child--so much better. We realized we had seen the same thing after an antibiotic injection when he had strep in May. However, the pediatrician was very skeptical.

 

What type of antibiotic results have you seen?

 

Hello and I am so sorry your son and your family are doing through this. I agree with the others, go see one of the primary specialists if you can and get on high dose of antibiotics (zithromax or Augmentin I would think) and hopefully you can get on an IVIG path.

Please lean on us as much as you need to!

 

My daughter (8 yrs old and 72 lbs) is finally doing well on 500 mg daily of zithromax. She needed that strength for us to see ongoing improvement.

 

Susan

[EAMom]

I agree with the others...full-strength antibiotics should be your FIRST and FOREMOST line of defense against PANDAS. Our dd was hospitalized b/c of PANDAS (anorexia nervosa, malnutrition, OCD, depression, suicidal statements) in March 08 (age 7.5 years-2nd grade). Symptoms started 2mo. previously with a 4 day FEVER (we later learned many in her class had strep at the time). Both PANDAS dd7 and her sister dd5 tested positive for strep (throat cultures) when we insisted the hospital do the cultures (well, we brought sister in to the regular ped, we checked the whole family).

 

While we had some initial mood (but still lots of OCD) improvement on Augmentin, she regressed when we switched to amoxcillin (for prophylaxis). We also tried ceftiofur (a cephalosporin) which didn't help. We finally had remission of symptoms after 1) we were able to clear her sister's carrier state with Azith. (Augmentin had failed) and 2) we started PANDAS dd on 250mg/day of Azith.

 

Like you, we also had issues with SSRI's...PANDAS dd had serotonin syndrome (akathesia, aggression) on Lexapro (Spring 08) which further confused matters!

 

Our PANDAS dd (now 54 pounds) has been on 250mg of Azith. daily since June 08. She also had IVIG in Aug. 09 since were were seeing excerbations (throughout 3rd grade, with viruses and strep exposure) and a baseline change (although nothing compared to the #$%^&* of Sping 08). Our (Stanford Univ.) immunologist feels it is safe to keep her on this dose of Azith. for YEARS.

 

I would agree with the others that Advil also helps.

 

I would also (as per our experience) rec. checking family members for strep to make sure you don't have any strep carriers.

 

Another doctor who you might consider is Dr. Trifiletti (in NJ), esp. if there is a long wait to see Dr. Latimer.

[Guest Angela Shaw]

Thank you for your quick reply! We had not been on prophylactic antibiotics over the past nearly three years until just this fall. Our pediatrician (not the original woman who ignored the symptoms, but a better one in the same practice) has been very opposed to antibiotic use. He finally relented and allowed us a prescription for amoxicillian that we have used for about three weeks. Doesn't seem to be doing too much.

 

When my son had mycoplasma pneumonia in Sept. and was on Zithromax he was a COMPLETELY different child--so much better. We realized we had seen the same thing after an antibiotic injection when he had strep in May. However, the pediatrician was very skeptical.

 

What type of antibiotic results have you seen?

 

The research shows that only a few antibiotics have been helpful for PANDAS kids. Those are AugmentinXR at a high dose (upwards of 2000mg), Keflex, and Zithromax. (maybe others but those I know off the top of my head)

 

Have you read Saving Sammy? It gave me a lot of hope and a lot of ideas as far as treatment goes. Amoxicillian does not kill strep in these kids. Since you've seen an improvement while on Zithromax, I'd keep copious notes and ask for that one. With our family doctor, I asked her, "what harm can it do?" At that point Lilly was completely incapaciated by the OCD and miserable. She agreed that it was worth a shot. Research on this site and print out LOTS of information on treatment and symptoms and show the doctor his diagnosis and the treatments that people have found that works. You need an open minded doctor who will treat him properly even if it means going out of state. I have a back up plan to drive to NJ if our doctor stops being helpful to see Dr. Trifiletti. That is a 6 hour drive for us. Will be worth it if we need it. Will borrow money from my parents if I have to.

 

My dd has had PANDAS (in hindsight) for 3 years. We just figured that out this fall after a TERRIBLE exacerbation. She has been on antibiotics (2000mg Augmentin XR which is the extended release augmentin) for a little over two weeks. (and a week before that she was on 1000mg per day of regular augmentin) By chance, about a week before that, we also discovered that Advil reduced her symptoms by a LOT, like 80%. So, right now it's hard to tell where the help from the Advil ends and the Augmetin begins. I've not posted the results yet becasue I didn't want to jump the gun. But I can tell you this....the tics were the last symptoms to show up in her and it appears that they are going away. I haven't seen her tic in many days, even on the days where she had a lot of ocd difficulty at night, which is when she usually tics. (vocal tic and facial grimace tic) Crossing my fingers that it won't come back.

 

I have to say that I thought the results would be quicker than they are once we started the antibiotics. But when dd is doing better, it is hard to remember how terrible it has been some days. She is smiling a lot more and willing to do things she could not even fathom doing a month ago. She brushes her teeth. She even brings her plate to the kitchen after she eats sometimes. A month ago she could do NOTHING. She could not walk without repeating, sit without repeating, go 20 minutes without asking a reassurance question, get dressed or use the bathroom alone. She couldn't use the computer or the remote control. She was miserable and said all day long that she wanted to just die and would I please kill her. Today is my birthday and she gave me a back massage. She couldn't be touched a month ago. She even let me kiss her today and she did not have and ocd episode after I kissed her cheek twice. Usually she has to hug me and then she can't stop.

 

Now, she dresses, with difficulty some days but still within ten minutes. She brushes her teeth more regularly. She plays on her pc

She uses the remote on the TV. She can get into the vehicles most days in a short time. She can go out doorways and up stairs more easily and is willing to do it. She goes to sleep in front of the TV (and in her bed 4 times) where before she was up half the night raging and crying.

 

We took our dog to a neighbors to play with her puppy today and when she called I said to her, "I'll be there in ten minutes." Unheard of a month ago. We were late but only by 5 minutes or so. Dd wasn't dressed when she called and she got dressed and her coat on and out the door without crying. I think the antibiotics aer working but like I said, It's hard to tell right now with the Advil usage too. I'm not stopping it as it brings her great relief and I will not torture her at this point just to see if it is helping.

 

At the advice of someone on this list I also started giving her Omega 3 capsules and vitamin D (8000mg per day of D3) Hopefully those will help too.

[EAMom]

[The research shows that only a few antibiotics have been helpful for PANDAS kids. Those are AugmentinXR at a high dose (upwards of 2000mg), Keflex, and Zithromax. (maybe others but those I know off the top of my head)

 

We were on Ceftiofur (which is a stronger version of Keflex) which didn't help. However, some PANDAS kids do fine on Keflex. It is a bit hit or miss...possibly depending on the child/strain of strep. Most do well on Azith, but not all. I agree that Augmentin may need to be at high doses to be most effective. Similarly, Azithromycin should be full-strength, not just wimpy 2x weekly prophylactic doses.

 

Some kids do fine on Amoxcillin...but in general most parents find they need to be on stronger abs.

 

Here is a good article on amoxcillin failure in strep http://www.entrepreneur.com/tradejournals/.../169459644.html

 

I suspect many of these PANDAS kids have intracellular strep hiding out in their systems (sinuses, skin, throat, whereever). Azithromycin is best at getting intracellular strep (better than augmentin). Azithromycin is also immune-modulating/anti-inflammatory which our Stanford immunologist agreed may be a big reason it has been so helpful for our dd.

[sf_mom]

I would recommend you speak to Dr. Kovacevic in Chicago. If you are unable to travel he might know someone in your area that can help.

 

I concur with every thing everyone else has said.... there is hope.

 

-Wendy

[mama2alex]

I'm so sorry your family has gone through this! But I'm glad you posted here - you will find a lot of information and support.

 

Am I reading this correctly - several doctor's diagnosed PANDAS, but none ever prescribed antibiotics? Did they check titers, swab his throat or run immunology blood work? Unless I'm misreading your post, it sounds like you found doctors who believe in PANDAS and believe your son has it, but have no idea how to properly treat it.

 

I agree with others here - you should either consult with Dr. Elizabeth Latimer or Dr. Kovacevic in Chicago. Both will do phone consults and I believe Dr. Kovacevic is within driving distance for you. In the meantime, read as many old posts as you can on this forum and you will start to get a clearer picture of what needs to be done. Also, post specific questions that come up and someone WILL answer.

 

Here is their contact info:

 

Dr. Miroslav Kovacevic

Chicago, Illinois

www.webpediatrics.com

(630) 986-1010

 

Dr. M. Elizabeth Lattimer, MD

6420 Rockledge Drive

Suite 4920

Bethesda, MD 20817

(301) 530-9200

[EAMom]

BTW, here another website that has good information on pandas:

http://www.pandasnetwork.org/

 

It was created by Diana P...a mom who posts here occasionally.

 

I strongly believe that your son will get better, but it will take full-strength antibiotics and likely IVIG and/or PEX.