Siblings

[dcmom]

Hi everyone. I just wanted to start a post to remind everyone to take a close look at the siblings of your pandas kids. My dd Julia (as most of you know) was a classic, overnight onset of debilitating ocd/pandas, with a documented strep infection. Her sister had strep at the same time. Julia's issues turned our family's world upside down. Her sister Caroline, at the same time developed lots of issues, but some went under the radar, and others were attributed to stress and approaching the pre teen age. In hindsight it is pretty clear that she had this pandas variant. Her cam kinase was normal, but her other anti neurals from Dr Cunningham were high. We have started some treatment for her: zithromax and steroids, and she did a complete turn around. She had a cold last week, and we seemed to have lost a lot of ground we gained. I regret missing this for so long- but know I have been doing my best, so don't feel guilty, just sad. I don't want any parents on this board to miss pandas in any siblings. Below is a description of pandas adolescent variant from Dr K's website. Caroline is only 9, but this fits her perfectly:

 

 

We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

[FallingApart]

DC mom, I'm so sorry to hear this! This breaks my heart and fills me with dread. Do you have any sort of plan at this point or have you only been able to identify it so far? I'm glad you are in close proximity to Dr. Latimer.

 

FA

[Not_the_Same]

Hello,

Thanks for the start of this topic.

This seems to be the next chapter of what my family is now encountering, and we are new members of this forum.

 

My youngest son(4) has been healing nicely since Thanksgiving with treatment (DR. K), But now my oldest Son ( a very young 13) Has the above mentioned Anxiety issues.

There is the possibility i never noticed the onset of this disorder starting at a much younger age, or maybe it started when my youngest became ill Nov 15 2009.

I just don't know.

 

He has displayed no obvious tics, but a suspect cough that seemed to linger.( now i refer to the cough as a possible tic)

We took him to his original pediatrician for the cough months ago(before we knew of pandas and DR.K), and did not give too much attention to his anxiety, because he has always been intense and it seem only slightly out of range.

 

 

Now things have escalated. He has developed anxiety that makes him tremble, as if he just drank a bunch of coffee.

 

"intrusive thoughts are present in most patients".Yes

 

"Behavioral regression(s)".Yes/ maybe (he battles his 4 yr old brother)It even crossed my mind these guys were ticing off each other.

 

"Insecurity and separation anxiety (adolescent type)."Yes

 

"Chronic fatigue commonly present". Yes

 

"chronic non-specific gastrointestinal symptoms". Yes this was last weeks symptom.

 

"Insidious development of an overwhelming anxiety ". Yes this is our most obvious symptom at present

 

His GI symptoms have faded (last week) and now we are in a elevated anxiety stage.

 

 

He agreed with & insisted on his turn with Dr. K which we scheduled, and have completed.

 

We are now waiting on the blood tests results, while on 5 days of Prednisolone .

Then Dr K will direct us on what to do.

 

day 1 of steroid he says "doesn't feel as shaky". but in my observation, he seemed a bit squirrely .

day 2 (today) he appeared fresher this morning.but still shaking as he drank his Prednisolone.( he can not stand the taste)

 

 

He has missed school the last three days which i suggested, and feel is perfectly fine.

 

I am interested in reading opinions .

Should he miss school?

My wife feels it is important to tell the school everything, is this something we should do? He did faint in school while watching a medical film (in science class) some time in October.Now he is excused from watching these films .This happens to be the last class of the day, so now he has anxiety the whole day in school anticipating science class.He marks the day of fainting as the start of all this.

 

Does anyone have a guess on how this may play out.

 

Thanks to all.

-John

[dcmom]

Thanks John, and sorry, as I know all to well what you are going through.

 

I think it is helpful to fill the school in. For right now, you could say something like he is having some medical issues, which are causing him some anxiety, we will be taking the next number of days to explore this with the appropriate doctors. When YOU have a grasp as to what is going on, you will better be able to explain it to the school, and ask them to participate in particular ways. It is very hard for learning to go on when they are not physically or mentally healthy.

 

Did your sons have a documented strep infection? Did your younger son do IVIG, or only antibiotics?

 

My daughter responded well to steroids- but it took longer than her sister to see the improvement. Her symptoms do not present as severe, and I think improvements are a little more subtle also. Both of my girls take prednisone tablets- I am able to crush them up and put them in something tasty (spoonful of ice cream, bite of brownie, hollowed out strawberry), I hear the liquid is awful.

 

PLEASE keep me up to date on what dr K says- pm me if you would prefer. I am anxious to hear what his method of treatment is for these type of kids.

[KeithandElizabeth]

John,

 

Please do let us know how Dr. K wants to treat your older son since we have an 11 year old daughter who we are also concerned about......

 

I am sorry that you are having to go through this.... I know it is so painful!!!!

 

Elizabeth

[Not_the_Same]

Thanks John, and sorry, as I know all to well what you are going through.

 

I think it is helpful to fill the school in. For right now, you could say something like he is having some medical issues, which are causing him some anxiety, we will be taking the next number of days to explore this with the appropriate doctors. When YOU have a grasp as to what is going on, you will better be able to explain it to the school, and ask them to participate in particular ways. It is very hard for learning to go on when they are not physically or mentally healthy.

 

 

My daughter responded well to steroids- but it took longer than her sister to see the improvement. Her symptoms do not present as severe, and I think improvements are a little more subtle also. Both of my girls take prednisone tablets- I am able to crush them up and put them in something tasty (spoonful of ice cream, bite of brownie, hollowed out strawberry), I hear the liquid is awful.

 

PLEASE keep me up to date on what dr K says- pm me if you would prefer. I am anxious to hear what his method of treatment is for these type of kids.

 

Thanks for the wording on the school update. My wife will use it.

 

to answer your questions

Did your sons have a documented strep infection?

My youngest(4) test results show group A not detected

the anti/streptolysin was 921

 

Did your younger son do IVIG, or only antibiotics?

only antibiotics- youngest responded immediately to Augmentin and is on nothing else at the present.He seems to be healing .

 

I will update you and any who ask.

 

Thanks again and wish your family well.

-John

[Not_the_Same]

John,

 

Please do let us know how Dr. K wants to treat your older son since we have an 11 year old daughter who we are also concerned about......

 

I am sorry that you are having to go through this.... I know it is so painful!!!!

 

Elizabeth

I will let you know, what our plan is after we get a few more answers.

 

I wish your family the best

-John

[memom]

I also have an appointment on the phone with Dr. K. Tuesday. I would love to hear what info you get as well.

 

Ellie

[memom]

This is a timely topic for me. You may remember I mentioned several months ago that I was wondering if my 20 year old son may have a Pandas varient that started when he was 16 (late sophmore year high school). He has struggled with mental fogginess, difficulty learning, anxiety, rage, fatigue, dilated pupils and depression since that time. The fatigue, rage, dilated pupils and anxiety over the past 4 years ebb and flow, the rest is constant. No improvement with multiple tries on meds and counselling. He is unable to be in college when he was previously a high honors student. We have tried college twice and both times he couldn't organize his thoughts well enough to get through the half way point of the semester (last time we tried was in September with an intro class that he should have been able to do with his eyes shut). Symptoms correlate with sister definate Pandas timing. Well, recently had labwork done for titers and Cunningham. Significantly elevated (3-4 times high normal for both ASO and Antid-nase), and Cam K at 156. Antineuronal antibodies 2 at high normal the others midrange. We have a phone consult with Dr. K. Tuesday given he seems to be the one who recognizes the adolescent onset and may have more experience in treating. This is our last shot with this young man. We have exausted all other avenues and have come up no better than when it all started at 16. His personality is completely different than prior to all this. He is sullen, noncommunicative, and frustrated with his life. I started him on Zith 500daily about 3 weeks ago, not much sign of improvement yet. I am hopeful we can get him back. This disease stinks.

 

Ellie

[dcmom]

I think any doubt I had about Caroline being pandas was erased last night. Hopefully, same for dh, as he bounces between agreeing with me and accusing me of being crazy. Sigh. Caroline had a 3 hour long panic attack (second one in last month or so) last night that she needed to stay on the toilet, or she would throw up. We had to literally pin her down to keep her off the potty. This took place from 9pm to midnight. Thank goodness, Dr L called in a steroid prescription for her yestarday, so we started this morning. Hoping for some relief. If it was up to me, I would have her in for plasma pheresis next week- but unfortunately it is not, would have many hoops to jump through, starting with dh and ending with insurance co. Sigh, again.

[dut]

Hello

 

Is Caroline on treatment dose of abx too at the same time as steroid? (forgive my sleep deprived rubbish memory). Just in case you have something hiding out and the steroid use lets is multiply....

[KeithandElizabeth]

dcmom:

 

I am going thru similar things with my 11 year old daughter. I plan to consult with Dr. K. I did hear from another parent that the stomach issues/adolescent variant form of PANDAS was easier to treat. I will let you know how my consult goes.......

 

Elizabeth

[dcmom]

Dut- she has been on longterm treatment dose zith. This all started post strep last February. She was mild, we thought it was GI related. Things ramped up a bit after H1N1. Then we did a steroid burst and started zith, and she did great, almost back to herself. Then two weeks ago she got a cold, and it has been downhill since then. Continuing on zith, adding steroids to the mix again.

 

Elizabeth: Do you know what the possible treatments are? Why/ how is it easier? Anything you find out would be so helpful!

[Worried_Dad]

Hi, DC Mom:

 

At one point during one of my son's IVIG procedures, Dr. K was chatting to me about this and mentioned the same thing. As I recall, he said that he was finding the "adolescent variant" could be cleared with just steroids and abx, without a need to resort to the "big guns" like IVIG or PEX.

 

Dut, is that what you've heard?

 

 

Dut- she has been on longterm treatment dose zith. This all started post strep last February. She was mild, we thought it was GI related. Things ramped up a bit after H1N1. Then we did a steroid burst and started zith, and she did great, almost back to herself. Then two weeks ago she got a cold, and it has been downhill since then. Continuing on zith, adding steroids to the mix again.

 

Elizabeth: Do you know what the possible treatments are? Why/ how is it easier? Anything you find out would be so helpful!

[memom]

DCMOM,

 

I am so sorry your daughter is having a bad spell. It means it is bad for you all. The fret, worry and fear it fills us parents with when we realize we have not one, but two or more children with this is huge. Let us know how the steroids are helping.

 

I am waiting anxiously till Tuesday to address this with Dr. K. for my older son.

 

I am tempted to give him some of his sisters steroids but she needs them now as well.

 

Ellie