Feeling helpless

[aaarrrgh]

Hey all, We are fairly new to PANDAS Syndrome. My 15yo daughter was diagnosed in December, right before christmas. we honestly thought she was having a breakdown with the very bizarre thoughts she was having. We took her to the ER, they recommended her going to a mental health facility for three day observation. (that was a horrible experince in itself) She was put on Zoloft, Risperdal, and Penicillin. On the last day she was diagnosed with Pandas, and was released. They made appointments for Sleep deprivation EEG, and MRI. gave us a pediatricians name who was familiar with pandas (but has never seen or treated it)and we were sent on our way. Well, we still haven't heard about the EEG or MRI, she has been taken off the Penicillin after a month. We have seen a psychologist, who is very nice but has never heard of pandas. She has been taught coping skills, but the OCD's seem so overwhelming sometimes, that they don't help.

 

My daughters seperation anxiety is getting worse, she cries in the morning when she has to go to school and I have had to literally pull her off me a sometimes, night time she cries because she doesn't want to go to bed and be alone. Must be around me at all times and if shes not she worries something will happen to me. Being social at school is non existent, she has no desire to talk to her friends and doesn't want anyone in her "bubble" Joint pain, can't sleep, ear aches that have been going on for months, mood swings. depression,

 

Took her back to the pediatrician, who always just checks her breathing, ears and wants to up her zoloft. She now thinks that its more than Pandas. ????? We finally found a psychologist in Atlanta but he doesn't take insurance, the pediatrician wanted his number and called him. now my daughter is on Clonidine to help her sleep.

 

I'm so frustrated at this point. If it wasn't for this website I would totally be in the dark about what this dreaded syndrome is even about. We can't afford to take her to the Dr in atlanta. I'm tired of trying to educate everyone with the little that I know. Its taking its toll on the whole family. Does anyone out there have any advice or anything? Any vitamin supplements that might help? I have read through alot of the information that is posted and honestly can't really understand some of it but I geuss thats because I haven't been through as much as some of you and my daughters symptoms aren't as severe as some of your situations.

If nothing else thanks for listening and letting me be heard!

[Megs_Mom]

Given your daughter's age, I would suggest contacting Dr. K - you can find his contact information at http://webpediatrics.com/pandas.html, and can send him an email. Unfortunately, he is based in Chicago, and I know that travel can be expensive. But this disease, if untreated, can be extremely expensive over time, not to mention devestating to the child & entire family. I'd suggest giving him a call. So sorry you are struggling to find answers.

[thereishope]

Welcome.

 

Is your doctor second guessing PANDAS because penicillin didn't help her problems? If so, ask him to try a different antibiotic. A good majority have found that penicillin didn't help and had to graduate to Augmentin or Zithromax. If he fights you about it, then tell him that you are in the position of putting her on a life of SSRI's and psych hospitalizations. Doesn't he think if there's a chance that could be avoided, it should be taken? Tell him he owes it to your daughter to try another antibiotic.

 

Here's an article about how penicillin and amoxicillin sometimes fails in erradicating a strep infection.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

How did she react to the Zoloft? Did it seems to make things worse or better?

[nomoz]

God bless you. This is so tough to go through, and, when doctors are not on board or are unwilling to do research, things only seem to get worse..

My niece (17 years old PANDAS -EXTREME OCD) was on all those meds - increasing meds only made her symptoms worse. You need a strong antibiotic, Zithromax, Biaxin, or the like. A five day "burst" of steroids is something to try also, as this helps alleviate swelling around brain, and there have been many reported cases where this treatment has been proven to help.

My daughter, 7, also has extreme sep. anxiety - it took us 1 1/2 hours to get her to school this morning, and not without tears and screaming, from all of us.

This is a horrible horrible illness.

I hope you find answers.

Good luck to you.

Noelle

[Alex]

I think the most important thing is to get a PANDAS expert onboard in your daughter's treatment. You don't want to waste valuable time by getting nowhere with doctors who know little about PANDAS and have treated few or any. Dr. K has already been mentioned. He is fantastic, and has treated over 500 PANDAS patients. Also, Dr. Trifiletti. Check out his website, www.neurokidsr.us. His forum is on the website, PANDAS Central, where he has a lot of info on PANDAS, and you can post questions, or contact him directly. Also, both are more than willing to consult with your local doctor. Not to sound cheesy but you can go from hopeless to hope filled with the exchange of a couple of e-mails.

Good luck, Alex

[sf_mom]

Dr. K talks a lot about the adult variant of Pandas on his website. It seems like the chronic ear infections might have started all of this for your daughter. Dr. K has had great success treating the adult variant with antibiotics alone. I would definitely consult with him immediate. He is happy to also talk with your local Dr.s. He would most likely recommend 875 m.g. Augmentin twice daily for a month. The following is taken from his website.

 

-Wendy

 

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.

 

Following several years of symptoms, presence of clinical depression is common!

[colleenrn]

Hi. I am so sorry that you and your daughter are going through this. It is so hard.

 

Why did they initially put her on penicillin? If it is PANDAS, and it certainly sounds like it could be, she would need a stronger antibiotic at this point b/c she may have had strep for a while and it may be intracellular, in which case, penicillin will not work.

 

Has she had a strep culture done? If not, that is a place to begin. If they do a rapid test and it comes back negative, insist they do another swab and culture it out for 72 hours. If your physician is opposed to doing a throat culture (which they should not be given her symptoms) you could always tell them she has a bad sore throat and you want it done.

 

If the culture comes back negative, given her symptoms and possibility of PANDAS, IMO a course of antibiotics (not amoxicillin or penicillin at this point) is fully warranted. If your physcian feels it isn't, you could tell him that the side effects of a course of antibiotics are far less serious than the side effects of the psychiatric medications she has been on.

 

Is there any way you could get her put on Zithromax asap. How much does she weigh? Given her age, unless she is super tiny, she could really benefit from 500mg of Zithromax for 10 days, then you could bump her dose down.

 

What other medications is she currently taking?

 

The physical symptoms you described (joint pain and constant ear pain) are also consistent with PANDAS. You could also rule out mycoplasma pneumonia which can also cause these symptoms in children with PANDAS. Interestingly, ear pain can be a sign of mycoplasma pneumonia. Some infectious process, IMO, is definitely going on. You do not get ear pain and joint pain for months for no reason. What did your physcian say about the ear/joint pain?

 

Dr. Rosario Trifiletti is a pediatric neurologist who may be able to further advise you. Also, Dr. K that someone mentioned in an earlier post may be helpful.

 

Bottom line, IMO, is get a throat culture immediatley and go forom there.

 

Colleen

[aaarrrgh]

Thanks to you all!! I started sobbing as reading all of your posts, I don't know if it was because relief of someone actually listening and I'm not alone after all or the validation that something else needs to be done and I'm not just a crazy mother that is being unreasonable with the pediatrician. I am def going to contact Dr. K and/or Dr. T. Hopefully they will be able to at least lead me in the right direction and give me some info so I can bring the print out to the doctor.

 

My daughter was taken off the Penicillin because the doctor thought that should have taken care of "it" by now. The only thing that she has told me is this could go on for up to a year and she needs to increase the zoloft to 50mg. when I told her that I didn't think the zoloft was working and I didn't really want my daughter on it she looked at me as if I had two heads and neither one knew what was going on. She said I have several kids that are on up to 100mg. All I know is my daughter is at the I don't care point, where nothing is helping so "whatever".

 

As far as tests, while she was in the hospital she had blood drawn and that is how they came to the conclusion that she had pandas. We were given a summary of lab tests but not really sure what I'm looking at. I have seen on this site about ASO and that was 256.4 back on december 20. but I don't recognize anything else. I thought the Dr would have done more tests by now but she doesn't listen and Im all but convinced we should seek another doctor.

 

Thanks so much for your understanding, I can't tell you how much it means to me. I will keep in touch and let you know how things go. God bless you all and God bless this site for being the light at the end of the tunnel, okay I'm crying again!

[colleenrn]

If you want to post her lab results I can help you figure them out.

 

Colleen

[thereishope]

Some PANDAS kids have adverse reactions to SSRI's. I'm not saying to take her off of them right now, but rather it may provide some explanation.

 

Taken from PANDAS Fact Sheet....

 

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

[faith]

aarrgh,

may I ask how long you think your daughter has been dealing with these symtoms? has it been since childhood or was this sudden at this age? has she had any recent vaccines this past year?

 

If you live too far to travel, you may be able to make some headway with another type docotr in your area who at least knows about PANDAS like a DAN! doctor or immunologist. If they are in agreement that your daughter is PANDAS, they may be able to continue the abx for you. maybe call around to some DAN docs or even Infectious Disease docs and ask over the phone if they are familiar with PANDAS.

 

good luck to you,

Faith

[aaarrrgh]

wanted to tell you, I sent an email in detail to Dr K and Dr T. with a copy of the Lab results from Dec. Dr K replied back within the hour with Yes, it looks like your daughter does have PANDAS and everything done until now has been essentially a band aid. Antibiotics work only temporarily and you have experience that. The only real option you have (and that one is becoming more and more of the question because of your daughters age!) is the IVIG treatment that should be persued ASAP.

I replied back IVIG? I'll have to look into that one. Do we have any other options? How much does her age define what we can do? He replied No, you don't.

 

I geuss I wasn't expecting that, I haven't really done any research on IVIG because I honestly thought that was for severe cases. Seems very invasive. Can anyone tell me what they have experienced with this procedure if they had it done?

[aaarrrgh]

aarrgh,

may I ask how long you think your daughter has been dealing with these symtoms? has it been since childhood or was this sudden at this age? has she had any recent vaccines this past year?

 

If you live too far to travel, you may be able to make some headway with another type docotr in your area who at least knows about PANDAS like a DAN! doctor or immunologist. If they are in agreement that your daughter is PANDAS, they may be able to continue the abx for you. maybe call around to some DAN docs or even Infectious Disease docs and ask over the phone if they are familiar with PANDAS.

 

good luck to you,

Faith

 

Faith,

It was a sudden onset in December of last year! No recent vaccines. Having trouble finding a doctor in Georgia that knows how to deal with this. Excuse my ignorance but what exactly is a DAN?

[Alex]

wanted to tell you, I sent an email in detail to Dr K and Dr T. with a copy of the Lab results from Dec. Dr K replied back within the hour with Yes, it looks like your daughter does have PANDAS and everything done until now has been essentially a band aid. Antibiotics work only temporarily and you have experience that. The only real option you have (and that one is becoming more and more of the question because of your daughters age!) is the IVIG treatment that should be persued ASAP.

I replied back IVIG? I'll have to look into that one. Do we have any other options? How much does her age define what we can do? He replied No, you don't.

 

I geuss I wasn't expecting that, I haven't really done any research on IVIG because I honestly thought that was for severe cases. Seems very invasive. Can anyone tell me what they have experienced with this procedure if they had it done?

 

This brings up a great point. I spoke to Dr. K 10 months ago shortly after my son's PANDAS exploded. He told me at the time that in the over 500 cases of PANDAS he has treated he has only had one complete cure from antibioitics alone, and that was a true initial onset caught very early. He has had hundreds of cases of complete cures through IVIG. This forum is deceptive in my opinion in that you get on here and people talk about supplements and DAN doctors and epsom salt baths and on and on and on. You may do as we did and consult with a DAN doctor and cut out wheat and worry about yeast and try other treatments and talk about small improvements and then have relapses and get back on the forum and ask questions and try more things and still not have a cure.

 

I read a post a few weeks ago, something like 'A year later... my happy son'. I couldn't wait to read the post and then read it and was discouraged. It was a mom whose child, after a year of supplements and minimal antibiotics was doing a little better. Realize that for the most part the people posting on this forum are the people whose children are suffering from PANDAS. They get on here in desparation looking for some answer from other parents whose children are also suffering. Guess where the parents are of the children who are not suffering from PANDAS are. Out living life. EAMOM is an exception. Her husband Buster, a research scientist, put the full power of his research skills into studying PANDAS when his daughter got ill. In my opinion, he is quite possibly the most knowlegeable person on PANDAS in the world. And guess what treatment he and his wife chose after a phenomenal amount of research they did that I think only a tiny percentage of the rest of us would be capable of, IVIG. And guess how his daughter is doing, fantastic.

 

After all our fooling around for the last year, we finally listened to Dr. K and had my son get IVIG following his protocol last week. The process of IVIG is no big deal. The child has an IV in for 6 or 7 hours over two days. It doesn't hurt any more than giving a blood sample and the side effects are usually relatively mild. We will keep you posted on the progress.

 

The world leader in treating PANDAS, Dr. Kavocevic, adivised IVIG. My advice would be to listen.

 

Good luck, Alex

[sf_mom]

Wow, Alex so glad you said it....... IVIG is really no big deal. Our son is doing great. Age and length of illness can have an impact and some kids need more than one IVIG treatment BUT they do get better. Dr. K has treated our son and he is extremely knowledgeable in PANDAS with a lot of documented successes.

 

-W