Is it PANDAS?

[AmbersMommy]

Hi. I have never posted here before. I have been hesitant because I am not really sure if my daughter has PANDAS or not. She is 6 years old. Briefly this is what has happened. On May 3rd my daughter tested positive for strep using a rapid strep test. She was put on Amoxicillin. By May 5th she started having trouble going to sleep. She has hardly ever had trouble before. Bedtime routines were just that...routine. On May 10th I woke up with my child on top of me screaming that there were bugs and monkeys and of all things Humpty Dumpty in her room. She was terrified. She started visually focusing on things that weren't there and she started making hand motions...kind of like swatting motions. We ended up in the ED. She was seen by a psychiatrist who said it was a reaction to the strep virus and that it would just go away in 7-10 days. I brought my daughter home and she continued to hallucinate. We ended up in the ED again a week later because she was still hallucinating. She tested positive again for strep using a rapid strep test. They put her on Keflex for 10 days. They told me it could be PANDAS. She also has instances when she thrusts her chin forward 3-4 times in row. She also sticks her tonque out between her teeth 3-4 times in a row. Sometimes she only blinks one eye a couple of times...kind of more like a twitch. She has laughing fits 2-3 times a day or more that last up to an hour. I managed to get an appointment with Dr. Bouboulis this week. I really don't even know what to ask him or say to him.

 

I don't know what to think of my daughter's symptoms. One thing that hit home with me when I was reading posts was when people said they no longer have the same child. As far as I am concerend my daughter is gone. I have a new person living in my house who hallucinates almost constantly. I am house-bound with my 2 year old and no family here. Her psychiatrist wants to prescribe Risperdol to control the hallucinations. I don't know if I should do it or not. I hate to see my daughter like this so I am leaning toward giving it to her. If it is PANDAS will giving her the medication to stop the hallucinations make a difference in trying to control the PANDAS...negative impact? I have been giving her Ativan to get her to sleep at night and really it hasn't helped that. It has, however, calmed her down so that she is not running all over the house at 4:00AM.

 

If anyone can give me some insight on whether they think this is PANDAS or not I would love to hear it. I'm sorry if this is rambling or incoherant. Unfortunately I don't get much sleep anymore either.

 

Thank you!

[dabel]

Hi. I have never posted here before. I have been hesitant because I am not really sure if my daughter has PANDAS or not. She is 6 years old. Briefly this is what has happened. On May 3rd my daughter tested positive for strep using a rapid strep test. She was put on Amoxicillin. By May 5th she started having trouble going to sleep. She has hardly ever had trouble before. Bedtime routines were just that...routine. On May 10th I woke up with my child on top of me screaming that there were bugs and monkeys and of all things Humpty Dumpty in her room. She was terrified. She started visually focusing on things that weren't there and she started making hand motions...kind of like swatting motions. We ended up in the ED. She was seen by a psychiatrist who said it was a reaction to the strep virus and that it would just go away in 7-10 days. I brought my daughter home and she continued to hallucinate. We ended up in the ED again a week later because she was still hallucinating. She tested positive again for strep using a rapid strep test. They put her on Keflex for 10 days. They told me it could be PANDAS. She also has instances when she thrusts her chin forward 3-4 times in row. She also sticks her tonque out between her teeth 3-4 times in a row. Sometimes she only blinks one eye a couple of times...kind of more like a twitch. She has laughing fits 2-3 times a day or more that last up to an hour. I managed to get an appointment with Dr. Bouboulis this week. I really don't even know what to ask him or say to him.

 

I don't know what to think of my daughter's symptoms. One thing that hit home with me when I was reading posts was when people said they no longer have the same child. As far as I am concerend my daughter is gone. I have a new person living in my house who hallucinates almost constantly. I am house-bound with my 2 year old and no family here. Her psychiatrist wants to prescribe Risperdol to control the hallucinations. I don't know if I should do it or not. I hate to see my daughter like this so I am leaning toward giving it to her. If it is PANDAS will giving her the medication to stop the hallucinations make a difference in trying to control the PANDAS...negative impact? I have been giving her Ativan to get her to sleep at night and really it hasn't helped that. It has, however, calmed her down so that she is not running all over the house at 4:00AM.

 

If anyone can give me some insight on whether they think this is PANDAS or not I would love to hear it. I'm sorry if this is rambling or incoherant. Unfortunately I don't get much sleep anymore either.

 

Thank you!

 

 

Lisa Marie,

 

I am sorry to say this, but based on what you wrote it does sound like PANDAS. If it is, you have caught it early and that is a good thing. I am glad that you got her in with a PANDAS doctor so soon! I have three children with this. They all present different but my oldest hallucinated along with many other horrific symptoms. How scary that is!!! It took us seven years to get him diagnosed and properly treated. He is doing much better now. Thank God!! As far as the heavy duty psych meds go, we did not have a lot of luck with them. It seems that initially they would help but loose their umph after a short period of time. Then there is the issue of side affects with them. The problem I have with them is they address the symptoms but do not get at the root of the problem. My son is off of all psych meds now but continues to take antibiotics. You are lucky that the pyschiatrist you saw is familiar with and believes in PANDAS. Many off us go all over with our sick children before the word is even mentioned. Have you seen any improvement since she has been on the antibiotics?

[peglem]

I think Dr.B will be able to help you sort this all out and I would not give any psych meds, at least not the kind that can cause withdrawals, until you've got it sorted out. If there is something that can help her be less miserable in the short term (we use valium and I feel blessed to have doctors who will prescribe for my daughter) w/o an adjustment period, you might want to consider that as temporary relief until you can get her the help she really needs. Risperdal is not that kind of drug.

 

Sorry to hear what's happened to your daughter (and you, too). But, so happy that you've found this support forum- lots of wonderful people here who will guide you and help you deal!

 

If you haven't already, I suggest you check out these posts, from the "helpful threads" pinned at the top of the forum:

 

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

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

God bless, and please keep us posted on your child's treatment and progress.

[kimballot]

Lisa Marie -

 

I am feeling for you. It sounds like you had a bit of good luck with someone recognizing PANDAS early and a it also sounds like you are a resourceful person - getting an appointment with Dr. B so quickly. Good for you! You will soon be in good hands. Please let us know how it goes.

[tpotter]

Don't worry about knowing what to ask Dr. B. We haven't been to him, but based on all the forum information about him, I suspect he's like the other PANDAS doctors. He knows what to ask you.

 

Personally, I would not give him the psych meds, yet...wait until after you see dr. B. (maybe ask him that one.)

 

Also, if you haven't done it yet, check out the website: www.pandasnetwork.org

 

I'm really glad you caught it so early. Good luck.

[AmySLP]

We saw Dr. B last week for the first time. He spent about an hour and a half interviewing us, asking questions (some of which were difficult to answer b/c our ordeal has gone on for more than year). He has a really calm demeanor and I believe you'll feel you are in really good hands when you meet with him. My daughter has the same sort of swatting behavior-I've been describing it as swatting bugs. Last year she had the same tongue behaviors you describe (Dr LAtimer said they were choreiform movements) and eye tics-she has none of these now. We have been lucky to see 2 of the leading PANDAS specialists and you are definitely on the right track with Dr. B.

 

Good Luck,

Amy

[thereishope]

Welcome. Your child would not be the first one to have hallucinations. My son had them twice. Freaking out that bugs were all over him. Smacking himself, screaming. That is such a frightening thing to witness.

 

You can try to give your daughter Ibuprofen. That may help with PANDAS symptoms.

 

I'm thinking the amoxicillin did not kill the strep. You need to to take her back for another strep test and get her on a different antibiotic like Augmentin or Zithromax. All family members need to get tested too, even if they have no symptoms.

 

You can also give her Omega 3's and a probiotic.

[EAMom]

Your dd definitely sounds like classic PANDAS!!

 

Ditto Vickie's remarks about getting other household members tested (start with throat cultures, do the 72 hour if the rapid is neg). Don't forget to culture the 2-year-old even if they tell you 2 year olds don't get strep.

 

When you start the next round of abs (like Vickie said, Augmentin or Azith. would be good to try--I personally like Azith.) don't forget to change toothbrushes a couple days into the antibiotics. Also, get new toothpastes and don't let kids share toothpastes (give each kid their own).

 

Hopefully your appointment with Dr. B. is soon. Hang in there. The Advil rec. is a good one...it may help with some symptoms.

 

You also might want to video some of your dd's behaviors/movements to show docs (just in case they change or go away).

 

Be sure to read the links that Peglem posted as well.

Edited June 17, 2010 by EAMom

[saidie10]

Hi. I have never posted here before. I have been hesitant because I am not really sure if my daughter has PANDAS or not. She is 6 years old. Briefly this is what has happened. On May 3rd my daughter tested positive for strep using a rapid strep test. She was put on Amoxicillin. By May 5th she started having trouble going to sleep. She has hardly ever had trouble before. Bedtime routines were just that...routine. On May 10th I woke up with my child on top of me screaming that there were bugs and monkeys and of all things Humpty Dumpty in her room. She was terrified. She started visually focusing on things that weren't there and she started making hand motions...kind of like swatting motions. We ended up in the ED. She was seen by a psychiatrist who said it was a reaction to the strep virus and that it would just go away in 7-10 days. I brought my daughter home and she continued to hallucinate. We ended up in the ED again a week later because she was still hallucinating. She tested positive again for strep using a rapid strep test. They put her on Keflex for 10 days. They told me it could be PANDAS. She also has instances when she thrusts her chin forward 3-4 times in row. She also sticks her tonque out between her teeth 3-4 times in a row. Sometimes she only blinks one eye a couple of times...kind of more like a twitch. She has laughing fits 2-3 times a day or more that last up to an hour. I managed to get an appointment with Dr. Bouboulis this week. I really don't even know what to ask him or say to him.

 

I don't know what to think of my daughter's symptoms. One thing that hit home with me when I was reading posts was when people said they no longer have the same child. As far as I am concerend my daughter is gone. I have a new person living in my house who hallucinates almost constantly. I am house-bound with my 2 year old and no family here. Her psychiatrist wants to prescribe Risperdol to control the hallucinations. I don't know if I should do it or not. I hate to see my daughter like this so I am leaning toward giving it to her. If it is PANDAS will giving her the medication to stop the hallucinations make a difference in trying to control the PANDAS...negative impact? I have been giving her Ativan to get her to sleep at night and really it hasn't helped that. It has, however, calmed her down so that she is not running all over the house at 4:00AM.

 

If anyone can give me some insight on whether they think this is PANDAS or not I would love to hear it. I'm sorry if this is rambling or incoherant. Unfortunately I don't get much sleep anymore either.

 

Thank you!

 

Gosh this is so sad and scary. It is good you caught it early and are in very good hands as I understand with Dr. B. Keep us posted!

[AmbersMommy]

Hi. I have never posted here before. I have been hesitant because I am not really sure if my daughter has PANDAS or not. She is 6 years old. Briefly this is what has happened. On May 3rd my daughter tested positive for strep using a rapid strep test. She was put on Amoxicillin. By May 5th she started having trouble going to sleep. She has hardly ever had trouble before. Bedtime routines were just that...routine. On May 10th I woke up with my child on top of me screaming that there were bugs and monkeys and of all things Humpty Dumpty in her room. She was terrified. She started visually focusing on things that weren't there and she started making hand motions...kind of like swatting motions. We ended up in the ED. She was seen by a psychiatrist who said it was a reaction to the strep virus and that it would just go away in 7-10 days. I brought my daughter home and she continued to hallucinate. We ended up in the ED again a week later because she was still hallucinating. She tested positive again for strep using a rapid strep test. They put her on Keflex for 10 days. They told me it could be PANDAS. She also has instances when she thrusts her chin forward 3-4 times in row. She also sticks her tonque out between her teeth 3-4 times in a row. Sometimes she only blinks one eye a couple of times...kind of more like a twitch. She has laughing fits 2-3 times a day or more that last up to an hour. I managed to get an appointment with Dr. Bouboulis this week. I really don't even know what to ask him or say to him.

 

I don't know what to think of my daughter's symptoms. One thing that hit home with me when I was reading posts was when people said they no longer have the same child. As far as I am concerend my daughter is gone. I have a new person living in my house who hallucinates almost constantly. I am house-bound with my 2 year old and no family here. Her psychiatrist wants to prescribe Risperdol to control the hallucinations. I don't know if I should do it or not. I hate to see my daughter like this so I am leaning toward giving it to her. If it is PANDAS will giving her the medication to stop the hallucinations make a difference in trying to control the PANDAS...negative impact? I have been giving her Ativan to get her to sleep at night and really it hasn't helped that. It has, however, calmed her down so that she is not running all over the house at 4:00AM.

 

If anyone can give me some insight on whether they think this is PANDAS or not I would love to hear it. I'm sorry if this is rambling or incoherant. Unfortunately I don't get much sleep anymore either.

 

Thank you!

 

Gosh this is so sad and scary. It is good you caught it early and are in very good hands as I understand with Dr. B. Keep us posted!

 

Hi all,

 

Still getting used to how to post on this forum. Saw Dr. B. today. He said he is 90% sure what my daughter has is PANDAS. She also has a sinus infection that we knew nothing about because she never complains of anything!! We have to do some blood tests tomorrow and order a kit from a Dr. Cunningham. Dr. B prescribed a 30 day course of Zithromax. Dr. B. is also having me get Amber tested for Lyme. How long will it take to see some results from the antibiotic if there are going to be any? It would be wonderful if we could confirm PANDAS...or Lyme.

 

Dr. B. is having our whole household tested for strep. Not looking forward to getting my 2-year old with super-human strength tested. We are going to have a battle royale with her.

 

Amber is on probiotics and Fish oil daily!

 

I've got to go now and sleep with my daughter. She still is having trouble getting to sleep. Have a good night/day depending on when you read this.

 

Thank you so much for all of your replies to my post!!!

[TessaKrista]

Hi Lisa Marie,

 

I did a quick search on amoxicillan side effects and hallucination and found the following sites that talk about hallucinations as a possible rare side effect of the antibiotic:

 

http://doublecheckmd.com/DrugDetail.do?dna...2023&view=e

 

http://www.livestrong.com/article/38215-si...ts-amoxicillin/

 

http://patientsville.com/symptoms/hallucination.htm (scroll down to amoxicillan)

 

http://www.drugs.com/sfx/amoxicillin-clari...de-effects.html

 

http://findarticles.com/p/articles/mi_m068...33/ai_11198460/

 

http://thesplinteredmind.blogspot.com/2008...-christmas.html (a man's personal story)

 

You'll likely find more articles to support this position that hallucination is a rare and possible side effect of taking amoxicillan. I didn't know that, but now I do. Very scary to think that our children can be susceptible to some things, perhaps because of genetics or the environment, and then we give them something to heal them, and that particular medicine can bring out or cause a rare side effect in them. I suspect that the medicine and the strep combined did something to your daughter. I am not a doctor. I am just speculating based on the information that you have provided. Hope this information helps you to further advocate for your daughter. Your doctor should report the side effect to the proper reporting authority, is it the FDA in the US? I am from Canada. Strep is bad news, and combined with a medicine that has hallucination listed as a rare side effect, is really bad news.

 

Wishing you all the best. Keep us posted please.

 

Keep in touch with the psychiatrist and the immunologist. Makes more sense to get more opinions from doctors who specialize in different areas.

[AmbersMommy]

Hi Lisa Marie,

 

I did a quick search on amoxicillan side effects and hallucination and found the following sites that talk about hallucinations as a possible rare side effect of the antibiotic:

 

http://doublecheckmd.com/DrugDetail.do?dna...2023&view=e

 

http://www.livestrong.com/article/38215-si...ts-amoxicillin/

 

http://patientsville.com/symptoms/hallucination.htm (scroll down to amoxicillan)

 

http://www.drugs.com/sfx/amoxicillin-clari...de-effects.html

 

http://findarticles.com/p/articles/mi_m068...33/ai_11198460/

 

http://thesplinteredmind.blogspot.com/2008...-christmas.html (a man's personal story)

 

You'll likely find more articles to support this position that hallucination is a rare and possible side effect of taking amoxicillan. I didn't know that, but now I do. Very scary to think that our children can be susceptible to some things, perhaps because of genetics or the environment, and then we give them something to heal them, and that particular medicine can bring out or cause a rare side effect in them. I suspect that the medicine and the strep combined did something to your daughter. I am not a doctor. I am just speculating based on the information that you have provided. Hope this information helps you to further advocate for your daughter. Your doctor should report the side effect to the proper reporting authority, is it the FDA in the US? I am from Canada. Strep is bad news, and combined with a medicine that has hallucination listed as a rare side effect, is really bad news.

 

Wishing you all the best. Keep us posted please.

 

Keep in touch with the psychiatrist and the immunologist. Makes more sense to get more opinions from doctors who specialize in different areas.

Thanks for the info. I will check out the sites in the morning. I am exhausted right now. The ED docs discounted amoxicillin as a cause for the hallucinations as they would have been out of her system by the time that they saw her the first time. I am skeptical. I think that perhaps it did cause some type of cascading effect. I'll read up more on it tomorrow. Thank-you.

[EAMom]

I haven't read the links but PANDAS itself can definitely cause hallucinations.

[PhillyPA]

You are so lucky you found out it is PANDAS early. This exact same thing happened to my son when he was 5 years old.Every single symptom you mentioned, my son had. It progressed into mutism and a story to long to post here. It took almost three years before a pandas diagnosis. Three years of utter ######. He had IVIG 5 weeks ago and we are currently in purgatory...

 

Your child will be fine. Don't worry. You are in really good hands.

 

I highly recommend the motrin. I found this out by accident. I realized that whenever I gave him motrin he would have a really good day.