New with Questions....how long till you saw improvement

[Guest Angela Shaw]

Hi Everyone,

I'm new to this forum and I have a couple questions. First, some background:

 

My daughter is 13 yo. I believe she has PANDAS. Her symptoms are VERY similar to Sammy's in Saving Sammy by Beth Maloney, though less severe. SHe has had OCD for 3 years and this fall began with a couple of tics and a huge worsening of her ocd symptoms.

 

By chance about ten days ago I realized that Advil helped her symptoms a LOT. I dare say they are reduced by a good 80% with one Advil per day. She does hours of compulsions without the Advil and is extremely angry, sad, and without hope. With the Advil she is relatively happy and the compulsions that she does do only last a short time and she is able to move forward.

 

She still has trouble walking and asking reassurance questions but she is able to fall asleep at night in front of the TV, where without it she is often up half the night raging and crying and getting in and out of bed. On the best nights she only repeated and raged for half an hour, even in front of the tv. With one advil per day, she falls asleep peacefully with no repeating getting on and off the couch/bed.

 

My family doctor is working with us so far (trusting my judgement but never dealth with this before)and has started her on Augmentin. It has been 5 days. So far, I have not seen any improvement beyond the relief that Advil has brought her. On Friday, which was day 3 on Augmentin, she got the H1N1 vaccine. Friday night, even with Advil, she had a terrible night with 3 hours of compulsions and raging. (mostly beating herself up) Saturday was a tough day too but she has slowly improved. Today was a very good day.

 

Do you think the vaccination could have affected her ocd/tics?

How long before you saw improvement in your children when they started antibiotics? How long did they suffere with symptoms before you started?

She is still on Celexa (40mg) She began it six weeks ago. It helped some. With the antibiotics, should she still stay on the Celexa or go off it? Once the inflamation in her brain goes down will the Celexa affect her negatively, instead of positively?

 

We are in Maine. I have made an apt. with Dr. Geller in the Boston area but can't get in till at least Dec. (our phone interviews are Dec. 11)

 

Thanks so much.

Angela

[dcmom]

Hi Angela- Sorry you are dealing with this... My daughter didn't improve until after 30 days on full strength zithromax- so you do need to give it time. Give us an idea of your daughter's dose and weight so others can be more specific.

 

Most of us are wary of vaccines- but, that is a very personal decision...

[Guest Angela Shaw]

Hi Angela- Sorry you are dealing with this... My daughter didn't improve until after 30 days on full strength zithromax- so you do need to give it time. Give us an idea of your daughter's dose and weight so others can be more specific.

 

Most of us are wary of vaccines- but, that is a very personal decision...

 

sorry I forgot to include that. She is 90 lbs and is on 500mg of Augmentin xr twice a day.

Angela Shaw

[Buster]

Hi Angela, welcome to the forum.

 

By chance about ten days ago I realized that Advil helped her symptoms a LOT.

 

Yes, we noticed this with our daughter too. She also fell asleep almost right after the advil in our case.

 

How long before you saw improvement in your children when they started antibiotics?

In our case we tried a couple of antibiotics and then realized we needed to clear strep from the house as apparently her sister was cross-colonizing her. On 250mg/day azithromycin we saw dramatic improvement at 10 days of azithromycin and kept her on prophylaxis.

 

She is still on Celexa (40mg) She began it six weeks ago. It helped some. With the antibiotics, should she still stay on the Celexa or go off it? Once the inflamation in her brain goes down will the Celexa affect her negatively, instead of positively?

Hard to say, but withdrawl from any SSRI is tough and should be done gradually. In our case, our daughter was on Lexapro and had akathesia. I think the theory in PANDAS is that they have difficulty with seratonin and dopamine regualtion and not too much or too little. However, as far as I know, the SSRI side isn't well studied.

 

Our dd9 is still on a low dose of Prozac, but we too worry about whether she needs it now. We've been holding off on changing any variables. Prozac at least is self weaning. Be careful with Celexa because it does have significant withdrawl symptoms if a dose is missed.

 

 

regards,

 

Buster

[EAMom]

Hi Angela- Sorry you are dealing with this... My daughter didn't improve until after 30 days on full strength zithromax- so you do need to give it time. Give us an idea of your daughter's dose and weight so others can be more specific.

 

Most of us are wary of vaccines- but, that is a very personal decision...

 

sorry I forgot to include that. She is 90 lbs and is on 500mg of Augmentin xr twice a day.

Angela Shaw

 

Hi Angela,

 

BTW, Buster is my dh (so we are talking about the same kid when we refer to our dd).

 

These are my thoughts:

1) the fact that your dd is responsive to Advil is very suggestive of PANDAS IMO. Lots of parents (including us) have noticed Advil offers symptomatic relief

2) I don't know if 40 mg of Celexa is considered a high dose? If you do decide to go off Celexa, be aware that withdrawal can be very difficult. So, your dd may have a whole new (confusing) set of symptoms from the withdrawal side effects. IMO...For now I would stay where you are with this drug to avoid confusion. If you "google" you'll find a lot on Celexa withdrawal or SSRI withdrawal. We had to stop Lexapro (another SSRI) and so can personally attest to the difficulty of withdrawal of some of these drugs :

[

i]Celexa withdrawal symptoms can occur at any dosage. Celexa withdrawl symptoms can begin within eight hours of a missed dose and can last from one to eight weeks. The particularly nasty Celexa withdrawal symptoms can easily last beyond eight weeks.

Over 50 different symptoms have been reported with antidepressant withdrawal, with dizziness nausea, fatigue, headache, gait instability and insomnia the most common. The lucky ones will experience only minor Celexa withdrawal symptoms. They might even blame their Celexa withdrawal symptoms on the flu. For others, the Celexa withdrawal symptoms are debilitating.[/i]

3) IMO the Augmentin dose is too low. Saving Sammy didn't weigh much more than your dd and he needed to be on 1000mg Augmentin XR 2x daily (twice what your dd is on).

 

4) did your dd have a throat culture b-4 antibiotics were started? Strep can also hide out in the sinuses (don't know if you can culture there) and girls can get vaginal/vulvar strep (not a hard place to culture). I would also strongly strongly encourage you to throat culture family members. When our pandas dd was first diagnosed, we did a throat culture and perianal culture on her which were both positive. We also did throat cultures on the rest of the family. Younger sister was positive on the rapid (an assymptomatic carrier we assume). PANDAS dd didn't really start to turn around until we were also able to erradicate strep from her sister.

 

5) If you raise the Augmentin dose and still don't see an improvement after a few weeks, I would switch your dd to Azithromycin 500mg/day. This was the antibiotic that worked best in our dd (we tried augmentin, but not the Saving Sammy dose, with slight improvement, got worse again on Amoxcillin and Ceftiofur).

 

6) I think the vaccine could have definitely caused a worsening of PANDAS symptoms. Anything that stimulates the immune systems (allergies, viral, non-strep bacteria) can cause exacerbations. I would think vaccines would fall under this category. Unfortunately, this sort of blurs what gains you may be getting on the antibiotics.

[Guest Angela Shaw]

EAMom and Buster,

Wow! Thank you! so much information. It's really a bit overwhelming and I'll have to sort through it a bit at at time. I can't thank you enough. 40mg of Celexa is a mid-range dose. 20-60gm is typically used for OCD. She's been on it for six weeks.

 

As far as the dose of Augmentin: We're working right now with our family doctor who has never dealt with a child with PANDAS. I go in later this week to talk with her again about how things are going. At that time I will bring in this information and suggest that if she wants to, she can call and consult with Dr. Geller and I'll pay for it. I also gave her a copy of Saving Sammy the last time I was there so she may be able to learn from that book. I'll bring what you have written also.

 

Dd did have a throat culture that was negative BUT I'm not sure the nurse got a good swab. That said, I also think her strep is likely in her vulva area as she has been complaining of some itching in that area for some time now. It is now better since she began the antibiotic. I thought she was just being obsessive about the itching. Too late to check now, I would think since she has started antibiotics.

[Guest Angela Shaw]

Eamom and Buster,

 

I meant to ask. How long did your daughter suffer from PANDAS before diagnosis and treatment?

angela

[thereishope]

Welcome, Angela

 

I would say 5 days may still be too soon to see improvement. The H1N1 vaccine may prolong seeing improvement. Don't beat yourself up over it When I brought my son to the dr the first time (before knowing he had PANDAS), the rapid came back neg and I okayed FluMist. I didn't know....

 

Don't do the second round of H1N1 vaccine in a month. Skip it.

 

How long have the behaviorial changes been present?

 

A good website to pass onto to your doctor is www.pandasnetwork.org. There a lot of info for him ( and you) to read up on. And studies to back things up (thanks, Buster).

[Guest Angela Shaw]

Don't do the second round of H1N1 vaccine in a month. Skip it.

She is over age ten and so she doesn't need a second one.

 

How long have the behaviorial changes been present?

 

Things began about 3 years ago. Sadly. The first symptom (in hindsite) was one episode of bed wetting with changes in urination frequency. That was followed by lots of reassurance questions and repeating wiping after using the bathroom until it felt right, hand washing/drying till it felt right. We started Zoloft/erp and things were not too bad for about 6 months. Worsening of symptoms. upped does for 1.5 years and things were okay. (not perfect but we were able to deal with it)

 

That brings us to this last summer when things slowly declined...and this fall when things RAPIDLY declined. At that point she could not do ANYTHING without repeating.(walk, talk, play on pc, watch tv without rewinding over and over, sit down, stand up) Her mood declined to depressiona and anger. She just wanted to die. She could not go to sleep without doing compulsions for up to 5 hours. It was horrible. Started Celexa six weeks ago. Slow improvement. Learnd more about PANNAS and realized she likely has this. Started Augmentin 5 days ago.

 

A good website to pass onto to your doctor is www.pandasnetwork.org. There a lot of info for him ( and you) to read up on. And studies to back things up (thanks, Buster).

 

I've already passed this one. Thanks.

Angela

[dcmom]

Angela- You probably know this by now, but urinary frequency, excessive wiping and bedwetting are VERY common in pandas, especially in the first episode. My dd had this as well.... At least you know you are on the right track, and will get her the help she needs...

[Guest Angela Shaw]

Angela- You probably know this by now, but urinary frequency, excessive wiping and bedwetting are VERY common in pandas, especially in the first episode. My dd had this as well.... At least you know you are on the right track, and will get her the help she needs...

 

Yes, ty. I do know that now. Didn't know it then and the reason I never initially pursed Pandas wasa becasue it said over-night. I thought ALL the symptoms appeared over night. We started with the urinary issue and the rest came on more gradually. Wish I hadn't dismissed it for that reason. Live and learn, I guess.

Angela ~ who is sick of learning these days....seems like its always preceeded by a crisis either with my kids or animals.

[EAMom]

Angela- You probably know this by now, but urinary frequency, excessive wiping and bedwetting are VERY common in pandas, especially in the first episode. My dd had this as well.... At least you know you are on the right track, and will get her the help she needs...

 

Yes, ty. I do know that now. Didn't know it then and the reason I never initially pursed Pandas wasa becasue it said over-night. I thought ALL the symptoms appeared over night. We started with the urinary issue and the rest came on more gradually. Wish I hadn't dismissed it for that reason. Live and learn, I guess.

Angela ~ who is sick of learning these days....seems like its always preceeded by a crisis either with my kids or animals.

 

Yeah...I wish Swedo and everyone would implying that PANDAS is always linked with an "overnight" change. Some cases are like that, but others are more chronic in nature. Even the folks do notice some "overnight" changes often realize that in retrospect, there were earlier low-grade symptoms that went undiagnosed..

[brooke]

Hi Everyone,

I'm new to this forum and I have a couple questions. First, some background:

 

My daughter is 13 yo. I believe she has PANDAS. Her symptoms are VERY similar to Sammy's in Saving Sammy by Beth Maloney, though less severe. SHe has had OCD for 3 years and this fall began with a couple of tics and a huge worsening of her ocd symptoms.

 

By chance about ten days ago I realized that Advil helped her symptoms a LOT. I dare say they are reduced by a good 80% with one Advil per day. She does hours of compulsions without the Advil and is extremely angry, sad, and without hope. With the Advil she is relatively happy and the compulsions that she does do only last a short time and she is able to move forward.

 

She still has trouble walking and asking reassurance questions but she is able to fall asleep at night in front of the TV, where without it she is often up half the night raging and crying and getting in and out of bed. On the best nights she only repeated and raged for half an hour, even in front of the tv. With one advil per day, she falls asleep peacefully with no repeating getting on and off the couch/bed.

 

My family doctor is working with us so far (trusting my judgement but never dealth with this before)and has started her on Augmentin. It has been 5 days. So far, I have not seen any improvement beyond the relief that Advil has brought her. On Friday, which was day 3 on Augmentin, she got the H1N1 vaccine. Friday night, even with Advil, she had a terrible night with 3 hours of compulsions and raging. (mostly beating herself up) Saturday was a tough day too but she has slowly improved. Today was a very good day.

 

Do you think the vaccination could have affected her ocd/tics?

How long before you saw improvement in your children when they started antibiotics? How long did they suffere with symptoms before you started?

She is still on Celexa (40mg) She began it six weeks ago. It helped some. With the antibiotics, should she still stay on the Celexa or go off it? Once the inflamation in her brain goes down will the Celexa affect her negatively, instead of positively?

 

We are in Maine. I have made an apt. with Dr. Geller in the Boston area but can't get in till at least Dec. (our phone interviews are Dec. 11)

 

Thanks so much.

Angela

 

My son has been on Augmentin for about one month (875 twice a day). Even though he had IVIG in July, I still think that the antibiotic is working. About a week ago (three weeks after start) we have seen improvements! We had to stop celexa (20mg)! It worked for us too for a little while, but then seemed to make him crazy. My gut would also suggest a reaction to the vaccine. Every single time my son has had a vaccine, symptoms exacerbate. Advil helps us too, but can cause bloody nose for my son. Hope this helps!

[kim]

she has been complaining of some itching in that area for some time now. It is now better since she began the antibiotic. I thought she was just being obsessive about the itching.

 

 

Angela,

 

I'm so glad you brought that up. I hope that parents don't dismiss those itching symptoms as a tic or compulsion. Personally, I think those antibodies are perfectly capable of reacting with bacteria or possibly some strains of yeast, in those area's south of the belly button. I can tell you from personal experience they are capable of reacting with a yeast strain present on the scalp!

[EAMom]

Eamom and Buster,

 

I meant to ask. How long did your daughter suffer from PANDAS before diagnosis and treatment?

angela

 

Our dd had a 4 day FEVER (later learned several classmates were sick with strep at the time) in late Jan 08 (age 7.5 years-2nd grade). Over the following 2 mo. she developed emotional lability (lots of tantrums), anxiety (social, separation), she stopped playing with kids at school (she would sit alone at the playground), sensory defensiveness (refused to change her clothes for days), defiance, restrictive eating, depression, OCD (very bossy, things had to be done in a certain way), and tics. Symptoms worsened after 2 tooth extractions (with nitrous, done for orthodontic reasons). By early March 08, she had full-blown anorexia nervosa (distorted body image) with suicidal statements. (Her teacher noticed dd's behavior changes and wondered if she had been molested!) Within a 2 week period she dropped from 50 pounds down to 42 pounds. She would only eat 1 small meal per day. We were pannicked and after calling over 20 doctors (mainly psychiatrists) one finally said "check her for strep". We googled "strep" and "anorexia nervosa" and learned about PANDAS. The next day we were able to hospitalize her (malnutrition, acute food refusal). Once her cultures came back positive (note: her strep titers ASO/antidnase b were low) the hospital agreed to abs. However, it took another 2 mo (when we finally cleared sister of her carrier state) and discovered Azith. (June 08) plus advil, before we saw real significant improvement in OCD/anorexia (after about 10 days). Tics/edginess took another 6 weeks to resolve. She did well for the rest of the summer.

 

We continued on 250mg/Azith/day. Throughout 3rd grade we saw exacerbations/return of PANDAS symptoms with exposure to strep (when family members were culture positive) and with viruses (fifth's dz, H1N1). Fortunately, the symtpoms were not as extreme as what we went through in 2nd grade. We were also seeing that she had a "baseline" change where she wasn't returning back to were she was after each episode. In Aug. 09 (just b-4 starting 4th grade) we finally did IVIG (2gm/kg over 2 days) which has really helped. I would say our dd is as normal as she's ever been...although it's hard to not be paranoid, with each little thing, wondering if that is PANDAS resurfacing!

 

In retrospect, we suspect our dd has had milder PANDAS episodes over the years which went undiagnosed. For example, when she was 4.5 years (pre-school) she had an acute onset of urinary frequency. I thought she had a bladder infection (tested neg). A couple of days later she had a high fever. A week later her sister got very sick with fever/vomiting. So I think they both had strep (they went to the doc, but nobody ever did a strep test on them.) She's also had episodes of anxiety, handwashing, sensory issues.... One issue for us, is that neither of our children had EVER had a strep test until we insisted (after we learned of PANDAS) in March 08. Any fever (even with vomiting) was always presumed to be viral so nobody ever bothered to do a strep test/throat culture on them. For us, our kids don't get a red sore throat with strep...so docs didn't think to ever test them.