Some symptoms back even on Azith

[colleenrn]

EaMom,

Right now her symptoms are a 3 on a 1-10 scale (10 being the worst), but in the past 7 years she has had many times when she has had horrible symptoms. Right now she has very minor facial tics, no ocd that I can tell, but she still has bad nightime/bedtime anxiety and has not slept alone for 14 months. That seems to not be improving.

Colleen

[EAMom]

HI colleen,

what dose and which type of antibiotics is she on? Is she on anything else?

[colleenrn]

EAMom,

She is not currently on any antibiotics. Last antibiotic was Keflex in July for an ear infection, and prior to that she was on Zithromax in March when my boys had pertussis. We have really slacked off on her supplements lately, but i aim to get her back on all of them. She gets them, but not regularly lately as she has been doing better. She was taking Inositol, 5 HTP, multivitamin, extra Vit C, B-complex, calcium/magnesium/zinc, and fish oil. I also had excellent results a few years ago when she had a flare up with Monolaurin. I would recommend trying monolaurin to anyone who has not trried it yet. It is an anti-bacterial and an anti-viral.

Colleen

[Dedee]

I only wanted to add what we have seen and heard. My son who is on daily amoxicillin, does have very mild symptoms when his little brother or sister have a strep infection. It usually resolves over about one to two weeks. These are very mild forms of previous tics or anxieties. Dr. Murphy had told us that this was a strong possibility with any exposure to strep as it will activate antibodies even if he is not infected himself. I always have him cultured as well to make sure and he is negative so I try not to worry.

 

In regards to the length of this disease, all I have been told was by Dr. Murphy. She said that often times hormone surges (as in puberty) may cause exacerbation of symptoms, but that MOST PANDAS kids begin to improve around the age of 17 or 18 with complete resolution in the early twenties. I am sure this is very individualized, as is this illness. All I can do is cross my fingers and pray. Good luck to us all.

 

Dedee

[lurker]

Colleen,

 

"When my boys had pertussis" really caught my eye. Did your boys have the DTaP? boosters? Mostly curious because that was the vaccine that set off my son's tic disorder, and it would just be ridiculously ironic if the vaccine doesn't even confer adequate immunity!

 

Thanks,

 

Tami

[colleenrn]

Tami,

No. Thery had not had any pertussis vaccines.

Colleen

[Debbie1]

Dear EA Mom and Buster,

 

So sorry to hear your daughter is having a hard time right now. She is in our thoughts. Best wishes for a speedy and complete recovery...

 

Debbie

[Buster]

Hi Everyone,

 

I apologize for going quiet for the last month. I wanted to followup and let people know a couple things about what's been happening with our dd. Short summary is that in October, we started to notice symptoms returning and discovered the following week that dd's sister cultured positive for strep (at least we have a good canary for strep now).

 

Her sister's strep seemed to have an effect even though dd was on propholaxis azithromycin. According to scientists/doctors we contacted, strep can recolonize even while on antibiotic. Antibiotic will slow invasion, but the antibiotics rely on the host's immune response.

 

After clearing sister, dd got significantly better but then started to have exacerbations two weeks later. We thought sister wasn't cleared, but she was culture negative. So either strep was still going around school or we were having a reminant effect in dd. Symptoms have mostly disappeared again (although verbal tic/groan remains). Last time this took 1 month to disappear after other symptoms.

 

1) October 10th: noticed dd's symptoms returning, measurement ritual, fine motor tremor, some eating restriction

2) October 17th: started sucking on things, won't wash hands, stomach hurts, not eating

3) October 20th: sister cultures positive for strep (GABHS), start treatment for strep

4) October 22st: dd is grumpy won't wear glasses, anxious

5) October 29th: dd back to normal

6) November 5th: dd still normal

7) November 12th: dd still normal, slight motion tremor

9) November 15th: slight verbal tic -- sort of like a groan, fine motor function issues

10) November 17th: sister is culture negative for strep (but lots of strep at school)

11) November 26th: aggitated, a measurement ritual is back, shakiness in fine motor function, added advil to night meds

12) December 3rd: seems back to normal, slight fine motor function issue and verbal groan/tic. All other symptoms gone.

 

Regards,

 

Buster

 

 

 

Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). ...

[michele]

Hi. We are dealing with the same thing here. My son takes 300 mg of cefdinir daily. My son was exposed to strep about nine weeks ago last week of Oct. Ever since he has been having an exacerbation. His moods have been awful, he is mean and emotional , overreacts, and the tics are back along with choreiform movements in his hands and feet, obsessed with things he likes, handwriting is worse also. Even the 5 mg of abilify and adding zoloft 12 mg didn't help at all. With four kids and two adults and a dog in the house keeping him away from strep seems next to impossible, especially with school setting. What are we to do about that?

 

I did talk to Dr. K about doing the steroid burst but I need to find a Dr. in OH who will do it for my son. So I don't knw if the $200 consult is worth it if I can't find a Dr. to treat. Actually my son's ped neurologist for the tics has asked me to find a psychiatrist to handle the meds since they aren't working. He said we could switch to Risperdal which is like abilify. I am thinking he should be coming out of this episode soon. In fact the last two days I have seen him less moody. With tourettes the tics would wax but according to the neuro the moods should not get worse. Our neuro doesn't believe in PANDAS but it is interesting his traditional meds aren't working for my son. I would think that may persuade him that something else is going on. For me the biggest obstacle is not having a Dr. who gets PANDAS here to treat him. How am I supposed to find someone locally? Maybe I will search for a DO. Last week I let it out on the psych department manager at our local children's hospital because they were supposed to get us an appointment for the past month and nobody ever follows up. What are you to do when they are not accepting new patients and they won't return calls? Shouldn't they make referrals if they are closed to new patients at a hospital? I have tried psychs that aren't neuro or ped and they don't get the brain/immune issue. They get stuck on correcting the behaviors and the fact that we are giving in to his behaviors. He even thought the tics were for attention. Give me a break! Again the biggest obstacle is finding a Dr. to treat this! What does it help if the Dr's who believe in PANDAS are out of state?

 

 

 

Michele

 

 

Hi Everyone,

 

I apologize for going quiet for the last month. I wanted to followup and let people know a couple things about what's been happening with our dd. Short summary is that in October, we started to notice symptoms returning and discovered the following week that dd's sister cultured positive for strep (at least we have a good canary for strep now).

 

Her sister's strep seemed to have an effect even though dd was on propholaxis azithromycin. According to scientists/doctors we contacted, strep can recolonize even while on antibiotic. Antibiotic will slow invasion, but the antibiotics rely on the host's immune response.

 

After clearing sister, dd got significantly better but then started to have exacerbations two weeks later. We thought sister wasn't cleared, but she was culture negative. So either strep was still going around school or we were having a reminant effect in dd. Symptoms have mostly disappeared again (although verbal tic/groan remains). Last time this took 1 month to disappear after other symptoms.

 

1) October 10th: noticed dd's symptoms returning, measurement ritual, fine motor tremor, some eating restriction

2) October 17th: started sucking on things, won't wash hands, stomach hurts, not eating

3) October 20th: sister cultures positive for strep (GABHS), start treatment for strep

4) October 22st: dd is grumpy won't wear glasses, anxious

5) October 29th: dd back to normal

6) November 5th: dd still normal

7) November 12th: dd still normal, slight motion tremor

9) November 15th: slight verbal tic -- sort of like a groan, fine motor function issues

10) November 17th: sister is culture negative for strep (but lots of strep at school)

11) November 26th: aggitated, a measurement ritual is back, shakiness in fine motor function, added advil to night meds

12) December 3rd: seems back to normal, slight fine motor function issue and verbal groan/tic. All other symptoms gone.

 

Regards,

 

Buster

 

 

 

Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). ...

[pmoreno]

My dd still has symptoms on Clarithromycin...there doesn't seem to be a rhyme or reason, but she'll get really edgy and then her throat tic starts again and she screams at us...I'm at the point where I'm not sure the anti is doing anything at all. She has been doing quite well on Singulair now that she gets 20mg a day. I also give Boswellia and diflucan.

 

We're considering the subcutaneous IVIG that we can do in our doctor's office, but I'm hesitant. We just had a blood test Sat. to check strep titers, thyroid, and IGA allergy and I guess to check to see if she has IVG issues or something so it will be easier with insurance.

 

After the prednisone was so successful our doctor is pretty convinced it is autoimmune.

 

 

How long has she been on the Clarithromycin? And how long has she been on diflucan. Diflucan can be a pretty nasty med. I remember when I was on it several years ago after having my normal flora wiped out by 2 courses of abx, I thought I was dying, the diflucan made me feel completely out of my body, irritable, depressed - don't know how to describe it exactly. I've heard that clarithromycin & zithro are supposed to be pretty good at getting at resistant strains of strep versus augmentin, for instance. My daughter is on augmentin now and her ASO titer last week is elevated (not huge, but about the same as it was 3-4 months ago when she started having symptoms again. So I'm switching her to zithro this weekend. We'll see what happens, but I'm a little discouraged to hear so many people post here that even with being on it, they are seeing symptoms when there is exposure. I just don't get that - I mean what's the point of being on an abx if you still react to the antigens? Pat

[pmoreno]

our son is on azith every 5 days - when we see breakthrough symptoms with exposure to strep (or other illness) we give a round of antibiotics - a 5 day course will usually settle things down.

 

Does that mean that you just give it when he needs it? In other words he is not on it continually? How long have you been doing this? I've just heard that one needs to stay on it prophylactically for some time to avoid actually getting an infection - it supposedly is better to prevent it from even starting, than taking the abx after the fact and trying to do damage control. What are your thoughts? Pat

[EAMom]

Hi Pat....

Being on antibioitics definitely kept things from getting out of control. It's discouraging that we did see some symptoms on 250mg Azith. /day but I don't even want to think about how bad things would have gotten if she had not been on abs (and then we had tried to treat her after the fact). Really, this episode was *nothing* compared with what we went through last feb-may...full-blown anorexia nervosa, psychotic, suicidal, bizarre ocd behaviors, out of control anxiety...

[michele]

I am with you Pat. Are the long term antibiotics working or doing more damage?

We are still getting bad episodes while on the Omnicef 300 mg a day. It seems even with exposure to strep in a room it can bring on the symptoms. My son has been on Abilify and Zoloft and nothing helped the emotional issues and anger that he had during this recent PANDAS flair up. The neuro said with Tourettes the emotional behaviors would not change with waxing. Abilify is supposed to help with the mood swings. We get the tics, emotional, rages, irritability, fixated on thoughts and handwriting and school deteriorates. My son has been having the latest episode since 1st of Oct.

 

I finally think I found a psychatrist group for children who deals with PANDAS. I will see her next week. Why the hospital she is connected to never referred me to her I don't know. The neuro and infectious disease Dr's at the hospital never new how to treat so why ddn't they suggest we see the psychiatrist division? The only reason I got in was I called and screamed because they never returned phone calls to schedule appointments in a month and I asked fr the CEO. I hope this will help. Dr. K gave me his protocal but I don't know how to get a Dr. here to administer it. Does Dr. K really thnk other Dr's will follow his advice to treat? I feel like the doors constantly close and we are back to square one.

 

Michele

 

My dd still has symptoms on Clarithromycin...there doesn't seem to be a rhyme or reason, but she'll get really edgy and then her throat tic starts again and she screams at us...I'm at the point where I'm not sure the anti is doing anything at all. She has been doing quite well on Singulair now that she gets 20mg a day. I also give Boswellia and diflucan.

 

We're considering the subcutaneous IVIG that we can do in our doctor's office, but I'm hesitant. We just had a blood test Sat. to check strep titers, thyroid, and IGA allergy and I guess to check to see if she has IVG issues or something so it will be easier with insurance.

 

After the prednisone was so successful our doctor is pretty convinced it is autoimmune.

 

 

How long has she been on the Clarithromycin? And how long has she been on diflucan. Diflucan can be a pretty nasty med. I remember when I was on it several years ago after having my normal flora wiped out by 2 courses of abx, I thought I was dying, the diflucan made me feel completely out of my body, irritable, depressed - don't know how to describe it exactly. I've heard that clarithromycin & zithro are supposed to be pretty good at getting at resistant strains of strep versus augmentin, for instance. My daughter is on augmentin now and her ASO titer last week is elevated (not huge, but about the same as it was 3-4 months ago when she started having symptoms again. So I'm switching her to zithro this weekend. We'll see what happens, but I'm a little discouraged to hear so many people post here that even with being on it, they are seeing symptoms when there is exposure. I just don't get that - I mean what's the point of being on an abx if you still react to the antigens? Pat

[Indigo]

My doctor told me that Azith makes some kiddos angry and "nasty"...we've had this experience on it and I'm switching back to clarithromycin tonight. However, dd's strep titers weren't touched on the Clarith...it's been a very rough month here.

[Indigo]

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?