Mayzoo

January 24, 2012

My daughter was on topamax and has been on baclofen in the past. Both were pre-pandas I believe. Did you have any questions about those two meds?

January 18, 2012

That's what I was thinking Vickie. I must've imagined it, but I thought there was at least one article that mentioned that protocol for PANDAS. I am not sure that I will need that much back up (and I still have about 2 months of zith anyway ). Of course now that we're looking at the possibility of another IVIg, we're seeing other symptoms (including trichotillomania and big irrational anger thing tonight). Ugh. On the other hand, if we do the IVIg, we'll get the abx with it. ::sigh:: I sure wish there was an easy protocol to follow. That which does not kill us (or drive us insane) makes us stronger, right?

Here is the full article link: My link

I have not found any others yet, but the one I listed speaks specifically of PANDAS and states this:

"In this study both penicillin and azithromycin prophylaxis

were found to be effective in preventing GAS infections and

decreasing neuropsychiatric symptom exacerbations among children

in the PANDAS subgroup when compliance was assured.

These results suggest that antibiotic prophylaxis may play a role

in the management of children in the PANDAS subgroup, as well

as provide support for the assertion that GAS plays an etiologic

role in some children with tics and/or obsessive-compulsive

disorder."

January 17, 2012

I am looking, and I have the "Saving Sammy" book I am browsing the references for you. So far, I have found only one article that appears to be in support of long term abx.

"Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders." My link

I will keep looking.

January 17, 2012

Here are the other two threads I started about kiddo for history:

First thread: My link

Update: My link

Her rapid strep test was positive on the first pedi visit (I was a bit surprised by this). We had some small gains on days 4-5 of the amoxicillin, but then lost them all on days 6-7. When I tried to get the doc to change the antibiotic over the phone, they wanted her to finish the ten days and then if she had symptoms to see her again. She never had symptoms to start with, so I went ahead and made the appt for the 11th day. On the 11th day, she was still positive for strep. They wrote her for 10 days of high dose Augmentin ES 600. The NPC (nurse practitioner) was initially very reluctant to go with an extended therapy of antibiotics for PANDAS (mainly because she felt it may have been out of her authority). I talked to her for a decent amount of time, and she agreed to talk to the doc in charge of the practice. With the information I gave her, she talked to the doc in charge and the two of them agreed to do a 3-4 week test on high does antibiotics, and they also wanted her to start an SSRI for the anxiety.

We just started the augmentin this morning, so I have no information on progress yet. I will update as I can.

I am beside myself with excitement for the possibilities . At least now I can confirm or rule out this avenue for my sweetie.

January 15, 2012

I am still looking, but so far this is what I have found:

Obsessive-compulsive disorder

Definition

The essential feature is recurrent obsessional thoughts or compulsive acts. Obsessional thoughts are ideas, images, or impulses that enter the patient's mind again and again in a stereotyped form. They are almost invariably distressing and the patient often tries, unsuccessfully, to resist them. They are, however, recognized as his or her own thoughts, even though they are involuntary and often repugnant. Compulsive acts or rituals are stereotyped behaviours that are repeated again and again. They are not inherently enjoyable, nor do they result in the completion of inherently useful tasks. Their function is to prevent some objectively unlikely event, often involving harm to or caused by the patient, which he or she fears might otherwise occur. Usually, this behaviour is recognized by the patient as pointless or ineffectual and repeated attempts are made to resist. Anxiety is almost invariably present. If compulsive acts are resisted the anxiety gets worse.

Incl.:

anankastic neurosis

obsessive-compulsive neurosis

Excl.:

obsessive-compulsive personality (disorder) (F60.5)

F42.0 Predominantly obsessional thoughts or ruminations

Definition

These may take the form of ideas, mental images, or impulses to act, which are nearly always distressing to the subject. Sometimes the ideas are an indecisive, endless consideration of alternatives, associated with an inability to make trivial but necessary decisions in day-to-day living. The relationship between obsessional ruminations and depression is particularly close and a diagnosis of obsessive-compulsive disorder should be preferred only if ruminations arise or persist in the absence of a depressive episode.

F42.1 Predominantly compulsive acts [obsessional rituals]

Definition

The majority of compulsive acts are concerned with cleaning (particularly handwashing), repeated checking to ensure that a potentially dangerous situation has not been allowed to develop, or orderliness and tidiness. Underlying the overt behaviour is a fear, usually of danger either to or caused by the patient, and the ritual is an ineffectual or symbolic attempt to avert that danger.

F42.2 Mixed obsessional thoughts and acts

F42.8 Other obsessive-compulsive disorders

F42.9 Obsessive-compulsive disorder, unspecified

January 12, 2012

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks.

So if you started 12/30 with pred- you are just getting to that point.

How long do you have it for?

Can you go back to the first abx?

THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system?

I believe this is the current train of thought for steroids so far as I know:

Link

"STEROIDS

Doctors have found that a 5 day course of prednisone will make PANDAS symptoms stop altogether. It is a temporary fix. But it proves that an inflammatory reaction in the child is occurring. It may make doctors more inclined to continue with antibiotics until they get more information from our network of doctors on the nature of PANDAS.

Some very extreme and rare cases of PANDAS, where there is clearly encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tics, Anxiety issues – have benefitted from one or two months of steroids when administered by a professional Pediatric Neurologist. In our group of 70 children only approx. 5 children have been in this category.

No doses will be given here for the steroids as it is well understood by medical professionals what is the acceptable limit and steroids must be used with caution. The use of steroids is well understood in the medical community for encephalitic matters."

January 12, 2012

One common side effect of prednisone, even in "NT" people, is negative mood shifts to aggression. Another frequent side effect is increase in hunger. These side effects are usually short lived, in most "NT" people, after the regimen is over. I am unclear about how prednisone affects our kids or how long it takes for these side effects to abate, sorry I just do not have enough experience with PANDA kids yet.

what is NT?

Sorry, NT means Neuro Typical in other words "normal" neurologically. People without other underlying medical conditions.

January 12, 2012

One common side effect of prednisone, even in "NT" people, is negative mood shifts to aggression. Another frequent side effect is increase in hunger. These side effects are usually short lived, in most "NT" people, after the regimen is over. I am unclear about how prednisone affects our kids or how long it takes for these side effects to abate, sorry I just do not have enough experience with PANDA kids yet.

January 12, 2012

Make sure you are separating the doses of charcoal and antibiotic by at least two hours or the charcoal may absorb some of the antibiotic.

Not sure about how long for the tics, sorry.

January 10, 2012

Is the $304.00 for just her or all of you? Maybe since PANDAS is considered auto-immune that makes it level 4?

We go through our state for our kiddo since due to her other conditions she is considered un-insurable. We use what is called a "Risk Pool" type of insurance. All the un-insurable people of my state become a group. We pay $450.00 a month just for kiddo and have a $1000.00 deductible.

Check with your state to see if they have anything like this (google I guess?).

January 10, 2012

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement.

Yes. DS was required to have two LPs in NIH study.

Okay, thanks for the answer. That would rule her out of the trial then since she has Arnold Chiari Malformation and should only have LPs when critically necessary since they can affect the distention.

January 9, 2012

This is my first time posting, but just wanted to say how great I think Dr. K is. My D6 had 3 strep infections last Spring, and by June she was crazy. Counting, obsessiing, crying, raginig, eye dilation, hyperactive. We got progressively worse throughout the summer, then the ped suggested PANDAS. Elevated DNAse, started ABX and within 5 days she was back. UNREAL. 100% improvement on ABX, but decided to go forward with T&A. 2 weeks before T&A she got off the bus funny, then we had a rage before bed and a ritual. Morning was rough, so I took her in to the ped...+ for strep while on antibiotics and the sore throat came after the behavior change! Got T&A on Nov 21st but we have never been able to get back to Sept and Oct when we first tried the abx. I decided to do IVIG and flew to Dr. K in Chicago this past week. We did qualify for the NIH study, but I was concerned about the spinal tap and the placebo factor...I just felt like I needed the IVIG immediately. Well, we were back home yesterday. IVIG, aside from cost, is no big deal. She did vomit a few times the day after, but that resolved and she has been fine since.

If anyone is contemplating IVIG I highly recommend Dr. K. You would be in great hands. Now, I just wait. 12 weeks they say till I know. Here's hoping!!!

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement.

I hope you get back the ground lost with this treatment. Good luck.

January 8, 2012

We were rather conservative with kiddos vaccines and she still has Chiari, syringiomylia, arachnoid cycst, autism and now PANDAS. I allowed the ones I received in the 70's and the chicken pox vaccine. She did not receive any of the hepatitis vacs, or Prevnar and only received one MMR. She did receive the HIB, DTAP, one MMR, and polio.

I am not promoting or renouncing the vaccines. Just letting the folks who are thinking what if we had been more conservative.....know what our personal relatively conservative approach resulted in.

January 8, 2012

yes please consider the nih trial. We are part of it and feel very fortunate to be, please call.

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

even if you think your child will not quallify, call. let them decide,

good luck

I am loading up the site now, thanks for the link !!

January 8, 2012

I need to get her on a train and then a taxi to Dr. B's office. Considering I can't get her in the car for more than 5 minutes, I'm nervous!

I just learned of this medicine today. It sounds like my fix, for now. Any info. would be helpful! thx

For that, you may also want to consider trying a scopalamine patch which is also over the counter. It is frequently used for travel sickness in cars or motion sickness for those on boats. It goes behind the ear and is works best if it is applied 4 hours prior to traveling.

Link

I am checking to see if a 70 lb child can/should use these.

Sorry, it appears they do not recommend using these in children under the age of 12.

January 8, 2012

I need to get her on a train and then a taxi to Dr. B's office. Considering I can't get her in the car for more than 5 minutes, I'm nervous!

I just learned of this medicine today. It sounds like my fix, for now. Any info. would be helpful! thx

For that, you may also want to consider trying a scopalamine patch which is also over the counter. It is frequently used for travel sickness in cars or motion sickness for those on boats. It goes behind the ear and is works best if it is applied 4 hours prior to traveling.

Link

I am checking to see if a 70 lb child can/should use these.

January 8, 2012

Prescription Zofran, Phenergan, Compazine and over the counter Meclizine (Antivert) are commonly used for nausea. Meclizine is frequently something you have to ask the pharmacist/staff for (kept behind the counter in some pharmacies), but it is over the counter. There are probably others as well, but those are the most common.

January 8, 2012

Has Dr. B, or any doctor, ever prescribed a prescription med for severe nausea? Or to counter the nausea experienced after IVIG. Zofran was mentioned to me as one type of medication. You can pm if you like. My daughter is 10 and weighs 70lbs.

My daughter has severe nausea and is unable to go anywhere. I need something to help get her to CT.

Thank you.

I am new to the PANDAS arena, but I know zofran is commonly given to help with nausea as related to chemotherapy, dialysis, post anesthesia nausea and I have seen it given in pregnancy as well, but not commonly. It has been around for maybe 15 years. Are you wondering about dosing, side effects or just is it used commonly?

January 8, 2012

Well, I am really glad that all the info you found on the internet helped you so quickly. This is honestly just within the past 2 years, because prior to that, there was virtually nothing, and many of our kids are where they are today, because we had to wait so long to even get a diagnosis. And, count yourself even luckier (sounds like you already are), that you had such an agreeable pediatrician on the first try!

If the abx doesn't work (and I certainly hope it does,) you might want to consider calling the NIMH, and see if she will qualify for the IVIG trial. They are being very picky, and only want newly diagnosed children. Since she so recently got sick, she might qualify.

I've got my fingers crossed for you, though, that she just keeps getting more and more better.

Thanks. I do consider us very fortunate as I have read cases of 12-15 years for diagnosis and any relief. I cannot even begin to fathom that. She probably would be consider low level moderate in her symptoms from what I have read. I have read some real bad stories too and though she has been suffering, it has not been as bad as I have read other stories, so we consider ourselves fortunate for that as well.

Where can I find information on the trial? Do you happen to have a link or should I google it?

Thank you very much again .

January 8, 2012

I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago , she has been telling me to get away from her for weeks.

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

:D :D :D :D

I am SOOOO happy for you. Was this a sudden onset, and you found a dr. immediately who recognized it?

Yes overnight onset right during a sore throat and low grade fever episode three and one-half months ago 09-12-2011. I found all the information on the web about PANDAS and took it to her old pedis office and they were agreeable to learning more about this and doing the blood work. I lucked out in one way since the Nurse practitioner we actually saw has an autistic son and she did not cringed when I told her I found something that seems to fit on the internet. I had been going through her Neurologist because of her other conditions, but I suspect he thinks I am nuts and I know he feels all her symptoms are "behavioural".

January 8, 2012

Here is a list of dan docs in the US. I do not know if it is current or anything like that. I still had the window up from looking for one in my state .

Link

The two states you asked about:

Wisconsin

* Channing Wiersema, M.D.

Plover Family Practice

2401 Plover Road

Plover, WI 54467

tel: 715-295-3800

fax: 715-295-3833

* Jeanie Muckian, B.S., M.S.

55 Oaks

700 Rayovac Road

Madison, WI 53711

tel: 608-278-1606

fax: 608-273-5081

* Bohn, M.D. R.Ph.

6 Grand Canyon Court

Madison, WI 53705

tel: 608-836-6323

fax: 608-831-9546

* M. Hintz, R.N.

W23437 New Deal Avenue

East Troy, WI 53120

tel: 262-745-1472

fax: 262-642-2421

* John Hicks, M.D.

5411 Hwy 50

Delavan, WI 53115

tel: 262-740-3000

fax: 262-740-3001

Illinois

* Anjum Usman, M.D.

HRI - Pfeiffer Treatment Center

1804 Centre Point Circle, Suite 102

Naperville, IL 60563

tel: 630-505-0300

fax: 630-505-1907

* Ross Hauser, M.D.

Caring Medical & Rehabilitation Serivces

715 Lake Street, Suite 600

Oak Park, IL 60301

tel: 708-848-7789

fax: 708-848-7763

* Joseph M. Mercola, D.O.

1443 West Schaumburg Road

Schaumburg, IL 60194

tel: 847-985-1777

fax: 847-985-0693

* Richard Hrdlicka, M.D.

302 Randall Road, #206

Geneva, IL 60134

tel: 630-232-1900

fax: 630-232-1937

* John Hicks, M.D.

15 Commerce Drive, Suite 109

Grayslake, IL 60030

tel: 847-548-3441

January 8, 2012

I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago , she has been telling me to get away from her for weeks.

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

:D :D :D :D

January 8, 2012

Anyone here every tried roxithromycin (Rulide)? It is not available in the USA, but maybe someone here has tried it that is not in the USA.

What was your experience with it? Have you also tried Zithromax? How did the results vary?

Thanks .

January 8, 2012

Here is another good article, but it is long (37 pages). I have not read it all, but what I have read looks interesting.

Link

"Phagocyte Functions: Immunomodulation Interference of Antibacterial Agents with or ''Immuno-Fairy Tales''?" by Marie-Thérése Labro 10.1128/CMR.13.4.615-650.2000. Clin. Microbiol. Rev. 2000, 13(4):615. DOI:

January 8, 2012

Anyone here every tried roxithromycin (Rulide)? It is not available in the USA, but maybe someone here has tried it that is not in the USA.

This is a good paper: Link

"Comparative anti-inflammatory effects of roxithromycin, azithromycin and clarithromycin" By F. Scaglione and G. Rossoni published in the Journal of Antimicrobial Chemotherapy (1998) 41, Suppl. B, 47-50

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