HELP

[Cassi]

I am currently waiting to get the results back from the cunningham study to see if my dd8 has pandas. She is currently on 50 mg of zoloft and her doctor is wanting to put her on risperdal. I wanted to wait and see what the results of the cunningham study came back with before I put her on risperdal. However, my dd8 is getting uncontrollable. She put a knife to her throat this morning and threatend to kill herself, last night she threatened to kill me. Her doctor told me I can't wait for the pandas results to come back that she really needs to be admitted and that she start taking the risperdal. HELP. She is uncontrollable right now. Do I continue to wait for the results to come back and not put her on the risp. Do I put her on the risp now and then when the pandas results come back if she has it then take her off the risp? Do I admit her to a hospital?

[laure]

This breaks my heart! We have been close to that with the depression, but so, so scary and sad for you! Won't they put her on antibiotics prophylactically just to see if there is any effect? It couldn't hurt. That is what our doc did while waiting for the results of the blood work. Would they do a titre test just to determine if ASO or anti B dnase titres are high ?(although the latter takes a few days).

In my prayers...

[MomWithOCDSon]

I am currently waiting to get the results back from the cunningham study to see if my dd8 has pandas. She is currently on 50 mg of zoloft and her doctor is wanting to put her on risperdal. I wanted to wait and see what the results of the cunningham study came back with before I put her on risperdal. However, my dd8 is getting uncontrollable. She put a knife to her throat this morning and threatend to kill herself, last night she threatened to kill me. Her doctor told me I can't wait for the pandas results to come back that she really needs to be admitted and that she start taking the risperdal. HELP. She is uncontrollable right now. Do I continue to wait for the results to come back and not put her on the risp. Do I put her on the risp now and then when the pandas results come back if she has it then take her off the risp? Do I admit her to a hospital?

 

Cassi --

 

You need intervention NOW if your daughter is threatening to self-harm! I hesitate to tell you to go to the hospital because being admitted to the psych ward there will probably be very traumatic for her, especially if none of the docs is hip to PANDAS. But you obviously can't just sit by and wait!

 

If risperadol does to your DD what it did to my DS, it will probably make her more restful, potentially even sleepy. This would at least serve as a temporary intervention to her uncontrollable behavior, but it is obviously not a long-term solution.

 

You MUST know that the Cunningham test is NOT yet considered the diagnositic definitive testing for PANDAS; PANDAS continues to be a clinical diagnosis based upon strep exposure, sudden onset of symptoms/behaviors, increased antibody counts, etc., in addition to the Cunningham measures. Have you had a strep culture taken? Have you seen a pediatrician familiar with PANDAS? Can you find one who will treat IMMEDIATELY with antibiotics?

 

Also, you might consider lowering the Zoloft dose; if your DD has PANDAS, 50 mg. may be too much for her, and it may be activating her. Have you noticed any correlation between beginning the Zoloft and an increase in her behavior? If so, I would talk to your doctor about cutting that dose in half; give the doctor a copy of Dr. Tanya Murphy's paper on this topic if he/she balks at decreasing.

 

I'm no medical professional, but if I, as a parent, were in your shoes, I would probably try the risperadol (it is a quick-acting drug) temporarily to take your DD "down off the ledge" she appears to be on. I would simultaneously talk to the doc who prescribed the Zoloft about trimming or even potentially stopping that dosage. And I would get some antibiotics FAST! Don't wait for Cunningham's results to see if the antibiotics will have a positive impact; that impact can be part of the diagnositic criteria all on its own.

[laure]

This breaks my heart! We have been close to that with the depression, but so, so scary and sad for you! Won't they put her on antibiotics prophylactically just to see if there is any effect? It couldn't hurt. That is what our doc did while waiting for the results of the blood work. Would they do a titre test just to determine if ASO or anti B dnase titres are high ?(although the latter takes a few days).

In my prayers...

[laure]

Sorry about that Cassi, I see now you have done all of those tests. Personally i would obtain abx myself (augmentin or keflex) and give them to her asap. You can buy online, and get overnight delivery. it saved my dd9 during the month we had to wait to see Dr. B. Also advil really helped in the short run.

[purple66p]

I suggest that you talk to your doctor about possibly trying Abilify rather than Risperdal. While riperdal had an immediate positive effect on my son's behavior within a day of starting it, he gained a lot of weight very quickly on it and the positive effect wore off rather quickly over the course of a few months. He's been on Abilify for a long time now and it also has helped stabilize his mood but has a much better side effect profile. (However, it is very expensive and if your insurance doesn't pay for it, riperdal might be a better choice.)

 

Zoloft might very well be making things worse, as Prozac did with my son.

[colleenrn]

I am so sorry for what you are going through. Have you done a throat culture yet? If it were my child, I would somehow obtain antibiotics for her today. Maybe a culture would be positive and they would put her on antibiotics today.

Maybe you could present it this way to your physician. Tell them that you really want to try antibiotics today b/c you strongly feel it is PANDAS. Present it to them that a course of antibiotics (get one course now and deal with gettting more later) is far safer for a child than risperdal. I am a nurse and have given risperdal to adults and older teens, but I would be scared to give it to my child. With your daughter having the possibility of harming herself, I know you need help today, but if i were in your situation, I would be opposed to any psychiatric admission. I would feel more comfortable giving benadryl and valium short term than risperdal.

I don't know if this was of any help, but I am thinking of you.

Colleen

[Phasmid]

Personally i would obtain abx myself (augmentin or keflex) and give them to her asap. You can buy online, and get overnight delivery.

 

Statements like this gravely concern me. How can you recommend buying drugs online for which you have no prescription or medical supervision to use??? Please take care when posting things like this!

[colleenrn]

I had another thought about meds, just short term. I had mentioned valium and benadryl, but another option is xanax. Children take it preoperatively for anxiety. My dentist even offers it to her pediatric patients before having a cavity filled or tooth extracted.

 

One more thought is for you, your husband, or any family member to obtain antibiotics and give it to her (hope I don't get in trouble for posting that), but if it is strep or any bacteria causing these symptoms, that is what she needs even if your physician is not of that belief. Do any of you have any symptoms that a physician would treat with antibiotics? (sore throat, ear ache, even acne). Ask around who knows of a physician who is liberal with antibiotics. They are out there for sure.

 

Colleen

[momcap]

Cassi,

 

Do whatever you have to do to keep your child safe! As we are discovering, there is no quick fix for PANDAS. So my advice is to accept whatever help you need to get through this immediate crisis. We had our ds(7) on risperidone for several months. I hated every minute of it. But we did what we had to do to. We are also waiting on cunningham results and just beginning to understand what is going on inside our little boy's body and mind. He is a completely different kid when he takes penicillin (I mean total personality transplant from ADHD, ODD, mood disorder, GAD, etc to happy and relaxed). I agree that if you can keep your dd safe while trying antibiotics that will go a long ways to diagnosing or ruling out PANDAS.

 

Have you listened to Dr. T's radio interview? He says that at the root level of PANDAS/PITAND there is an infection (identified or unidentified) that responds to antibiotics. The next level is the immune system and autoimmune response. Steroids, IVIG, and PEX all address this level. And at the third level there is a resulting neurochemical imbalance. In a time of crisis this third level may require psychopharmacological agents. I hope I got that right, but here's the link so you can listen to it yourself:

 

http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=44551

 

My heart goes out to you. My ds was suicidal at the age of 5.

[thereishope]

I am so sorry you're going through this! Is she on an antibiotic? You don't always need results from the Cunningham test to get help. It may help you in convincing a doctor, but it is not always necessary. If she is not on an antibiotic, tell your doctor that if he wants to hospitalize her or give her stronger meds, he can at least give her an antibiotic like augmentin or Zithromax. This is the time to get stern, sound authoritive with the doctor, and take a stance. If you need to, you can take her to Urgent Care if you don't want to deal with her doctor right now. For things like possible sinus infections, they give out antibiotics just if you say your cold hasn't gone away in two weeks yet they deprive children of antibiotics that may pull them out of having sudicidal thoughts.

 

If you haven't given Ibuprofen yet, try that too. My son at at age 5, tried to jump out of windows and threatened myself and himself. I followed him all around to ensure safety when was in a meltdown or anxiety attack and would not allow him in a room with a closed door during those moments. In that exacerbation, antibiotics and steroids helped.

 

If she is putting knives to her throat, you cannot do "wait and see" on this. There are some who have ended up hospitalizing their PANDAS children when it got dangerously bad. You are not a bad parent if you think that is the only way to make sure she is safe. But if it comes to that, I think you need to get in contact with a specialist who can look at her case as a whole and maybe get you the appropriate care within the hospital setting.

[Cassi]

Thank you everyone for your thoughts and suggestions!!! Several people suggested trying an antibiotic; however, I don't know how to make that happen. Her pshyciatrist doesn't think she has pandas so she won't prescribe it. Her pediatrician doesn't know anything about pandas so she won't prescibe it. The pandas doctor that is closest is in San Antonio and they won't see her until the cunningham study comes back and she sees a neurologist. She just had her titers tested last Friday and they came back fine, so she doesn't currently have strep to give her antibiotics for. Momcap, when you put your ds on risperal, did it help him even though he had pandas at the time? I guess my thought is, right now I don't have a prescription for antibiotics and I don't have a way to get one. I do; however, have a prescription for risperdal - .25 mg. Should I at least try this first along with motrin to see if this helps? Also, if I go this route, should I wait to admit her after I give the risperdal a try for a few days?

[KaraM]

Cassi,

 

I wish I could be there to help you through this. I see you have gotten a lot of advice, some of it conflicting. I'm not sure how much I can add. I don't have the experience with the pscyh med or the steroids - so I don't feel I can offer much up there. I know you did the strep testing and the results were negative, so imagine it would be difficult to get the doctor to prescribe the abx. However, part of the argument we used that finally convinced our doc to prescribe the first round of antibiotics (before any strep or Cunningham test results) was that another child in her class had strep and we wanted to rule PANDAS out by seeing if abx had an effect before we put her on an SSRI. Maybe that argument will work. Another thought is the Olive Leaf Extract route (see Stefanie's posts about jumping ship)- although I don't know how quickly that will work and it sounds like she needs relief fast.

 

Maybe some of the others could chime in about how quickly a steroid burst would help her? Haven't some of you had your kids get poison ivy just so you could get the steroid burst?? (I don't know if this is true and am not recommending this necessarily - If it is true, I am wondering how it worked out for people)

 

My heart aches for you, Cassie. I know I'm one of the people that got you pointed in this direction and hate that I don't have more or better advice. In the end, remember, you know your child best. Follow your heart. I will keep you and your daughter in my thoughts and prayers.

 

Kara

[momcap]

Momcap, when you put your ds on risperal, did it help him even though he had pandas at the time? I guess my thought is, right now I don't have a prescription for antibiotics and I don't have a way to get one. I do; however, have a prescription for risperdal - .25 mg. Should I at least try this first along with motrin to see if this helps? Also, if I go this route, should I wait to admit her after I give the risperdal a try for a few days?

 

Cassi,

I hesitate to offer any advice, as every situation is so very different. But I can share from our experience. I am not 100% certain that my ds has PANDAS. Back in January when he was BERZERK, we did an ASO which came back normal (27) despite being treated for a strep throat infection. When he was ramping up this summer I asked for another ASO which came back at 512. We also had a positive throat culture in September. It would certainly appear that he has PANDAS with high ASO, history of strep (including scarlet fever), dramatic response to penicillin, etc. I am still waiting on Cunninghams before I make up my mind, and may never be sure. He is currently being assessed for bipolar disorder, and a part of me wishes it to be PANDAS so it won't be bipolar (how screwed up is that to wish PANDAS on my ds??).

 

We started him on .25mg of risperidone in February after his major rage episode in January. We worked up to .75mg after 2 weeks. Our pedi told us that is a very low dose and most kids his age/size take 2-3 mg. After 4 days on .25mg he started sleeping through the night. It did help initially with his insomnia and aggression. After about a month his insomnia returned. By mid-summer he was in exacerbation and being aggressive and not sleeping. Who knows if the risperidone was helping, maybe he would have been worse without it? IDK. Then he started having chest pains, which I read is a common side effect, so with our pedi's permission we weaned him off it. He is still having chest pains, so I have no idea what is causing what.

 

I can't answer your question about what to do or try. Only you can decide that. If you can keep dd safe then trying anything and everything has to be better than a hospitilization (in my mind anyway). But if there is any doubt as to her safety, then I would not hesitate in making the decision to admit. That's just my opinion. If my son ever has a violent rage like he had in January I will be headed to the hospital with him.

[purple66p]

My son was initially diagnosed with BP & OCD, but I am now thoroughly convinced that we've been dealing with Pandas all along. I think the rages my son experiences are triggered by frustration at not being able to carry out a compulsion. I'm not a big fan of antipsycotics, but I think they've been a lifesaver *literally* for my son during his worst exacerbation. What I don't like is how difficult it is to get off of them. When we tried to take him off of Abilify before he had a psychotic episode. Of course, I believe the psychiatrist tried to do it too quickly. Funny, I got a copy of his chart from her and that time period was missing...We are now very, very slowly reducing his Abilify, but I don't know if he'll go off completely until I'm convinced the Pandas is in remission for at least a year.

 

So...I don't really like that we've gotten on this dependence of antipsycotics, but I dislike the trauma of putting kids in the hospital more. I think to most psychiatrists Pandas looks like bipolar disorder, or at least how they've redefined bipolar in children, and they treat it with WAY too many meds, many of them to overcome side effects of others. Be wary of a bipolar diagnosis is all I'm saying.