PANDAS pediatricians Chicago

[Chemar]

This appears to be a pediatric practice in the Chicago area with at least knowledge of PANDAS. Our members with more knowledge on PANDAS than me would be able to offer better critique of the info on their site

 

http://www.webpediatrics.com/pandas.html

 

 

here is their homepage with info on the practice

http://www.webpediatrics.com/practice.html

[P_Mom]

Cheri,

I have been working with Dr. Kovacevic from the onset of PANDAS via e-mails and telephone. He has been extremely kind and helpful to us...I do believe that the members are aware of him. The descriptions of the clinical cases are right on. When I found the site months back, I just gasped in disbelief when I read those clinical cases and because of the fact that I had finally found a perfect description of my son. I have been in touch with the NIMH and also Dr. Murphy....I personally believe he is the best Doctor to see as far as PANDAS goes, he has definitely been the most helpful to us, and I have been in contact with PANDAS Moms who have taken their children to see him......and he helped them beyond words.

 

Kelly

[Chemar]

thanks for the feedback Kelly

 

i am not always able to keep up with the many threads here so likely missed previous reference to this Doc.

Soooo glad to hear it is a good practice, cos we sure need more of them dont we. Looks like they are very up on nutrition and stuff too

[bmom]

I am trying to find a doctor who will prescribe antibiotics as I feel that they truly have helped my son and that he is PANDAS. We are seeing a Dr. Mathews this week. I am hoping she will, yet I would like to have some Dr. in mind. Do you think Dr. K would?

[emma1]

Kelly, forgive me if this is elsewhere on this site, but has this doctor recommended particular antibiotics as better for PANDAS, or has he recommended any particular nutritional supplements as helpful.

 

We have had total remission with antibiotics, but since an illness over Spring Break have been struggling with ocd issues (which are less troublesome since starting zith, but haven't totally remitted.)

 

Thanks!!

[P_Mom]

Emma,

In general...it is my understanding that he starts with and tries to stick with Keflex.

 

 

Supplements that he recommends are as follows:

 

Ester C 500 mg

Vit. E 100 mg

Folic Acid 400 mg

Fish oil 1000 mg

B6 20 mg

 

Hope this helps.

 

Kelly

[michele]

Does anyone else find it odd that Dr. K, is the only Dr. out there really suggesting IVIG as the best way to treat the PANDAS symptoms? Have others had their Dr's suggesting this? I almost felt like his website webpediatrics.com was an advertisement for IVIG. I wonder if his business makes a substantial profit on IVIG because it is not covered by insurance. I would be very skeptical of this treatment. I think it would be more of a last resort when all other options had failed. A source having a PANDAS child told me pulse corticosteroids were there best treatment option for her. How many here have tried IVIG and found it to work best for PANDAS? How many clinical trials found it the best treatment? Why doesn't NIMH or Dr. Murphy suggest the IVIG if it is better?

 

Michele

 

Michele

Emma,

In general...it is my understanding that he starts with and tries to stick with Keflex.

 

 

Supplements that he recommends are as follows:

 

Ester C 500 mg

Vit. E 100 mg

Folic Acid 400 mg

Fish oil 1000 mg

B6 20 mg

 

Hope this helps.

 

Kelly

[Mike]

Does anyone else find it odd that Dr. K, is the only Dr. out there really suggesting IVIG as the best way to treat the PANDAS symptoms? Have others had their Dr's suggesting this? I almost felt like his website webpediatrics.com was an advertisement for IVIG. I wonder if his business makes a substantial profit on IVIG because it is not covered by insurance. I would be very skeptical of this treatment. I think it would be more of a last resort when all other options had failed. A source having a PANDAS child told me pulse corticosteroids were there best treatment option for her. How many here have tried IVIG and found it to work best for PANDAS? How many clinical trials found it the best treatment? Why doesn't NIMH or Dr. Murphy suggest the IVIG if it is better?

 

Michele

 

Michele

Emma,

In general...it is my understanding that he starts with and tries to stick with Keflex.

 

 

Supplements that he recommends are as follows:

 

Ester C 500 mg

Vit. E 100 mg

Folic Acid 400 mg

Fish oil 1000 mg

B6 20 mg

 

Hope this helps.

 

Kelly

 

I know Dr. K had a bogus story about Dr. Swedo on his site and I let him know it. I think he took it doen since then. He said she did a certain study about a supplement she denied doing.

 

Anyway what do you mean by pulse corticosteroids? Prednizone every once in a while?

[michele]

I put out an email to the mom who told me she used the pulse corticosteroids. Here is an article I found. Not much details were given on the steroid therapy. I do know she sought out a child rheumatologist for treatment. Treated it aggressively since it was autoimmune. Initially her symptoms may have gotten worse before they improved. Dr. Karen Onel was her Dr. She is now in Chicago at Cromer.

 

http://www.uchicagokidshospital.org/physic...an.html?id=6204

 

 

http://linkinghub.elsevier.com/retrieve/pi...887899405005436

 

In this randomized, double-blind, parallel study of a group of 22 children and teenagers, prednisone efficacy in acute Sydenham’s chorea was assessed. Use of prednisone (2 mg/kg/day during 4 weeks, followed by a gradual discontinuation) in the 22 patients and in a placebo group (n = 15) was evaluated by a chorea intensity score based on presence, distribution, and interference of choreic movement on daily activities. Each patient was evaluated by the same pediatric neurologist weekly during the first month, followed by evaluation on weeks 8 and 12, with further evaluations as necessary if choreic movements persisted. Although initial chorea intensity was similar in both groups, a significant difference was observed after 1 week of medication (P < 0.001) with a larger reduction in the prednisone group, that continued until the end of the study. Percentage decrease in chorea intensity scale score also was persistently and significantly (P < 0.001) greater in the prednisone group. Chorea complete remission time with prednisone (mean 54.3 days) was significantly shorter (P < 0.001) when compared with the placebo group (mean 119.9 days). Seven patients presented recurrences, with no difference between groups (13.6% and 26.7% in the prednisone and placebo groups, respectively). Severe adverse events to prednisone were not observed.

 

 

 

Does anyone else find it odd that Dr. K, is the only Dr. out there really suggesting IVIG as the best way to treat the PANDAS symptoms? Have others had their Dr's suggesting this? I almost felt like his website webpediatrics.com was an advertisement for IVIG. I wonder if his business makes a substantial profit on IVIG because it is not covered by insurance. I would be very skeptical of this treatment. I think it would be more of a last resort when all other options had failed. A source having a PANDAS child told me pulse corticosteroids were there best treatment option for her. How many here have tried IVIG and found it to work best for PANDAS? How many clinical trials found it the best treatment? Why doesn't NIMH or Dr. Murphy suggest the IVIG if it is better?

 

Michele

 

Michele

Emma,

In general...it is my understanding that he starts with and tries to stick with Keflex.

 

 

Supplements that he recommends are as follows:

 

Ester C 500 mg

Vit. E 100 mg

Folic Acid 400 mg

Fish oil 1000 mg

B6 20 mg

 

Hope this helps.

 

Kelly

 

I know Dr. K had a bogus story about Dr. Swedo on his site and I let him know it. I think he took it doen since then. He said she did a certain study about a supplement she denied doing.

 

Anyway what do you mean by pulse corticosteroids? Prednizone every once in a while?

[Chemar]

ooooh I am in fear factor mode on steroids so just want to throw this in for consideration

 

steroids INCREASE tics for those with Tourette Syndrome

I am not sure whether this pertains to PANDAS related tics as well

 

we rejected steroid treatment for my son when he was dx with Crohn's for that reason

 

My husband was recently injured when someone hit the drivers side of the car and has spinal/sciatic nerve very intense pain

The ortho insisted on giving him the steroid burst (ie pulse) with Medrol and it made my hubby's tics wax bigtime, hypered him something horrible!, totally messed up his cognitive functioning, and he is still suffering dreadful neuro/digestive side effects a week after it

The doc negated our concerns and said the short burst wouldnt have the negative effect and my hubby followed his advice (he was desperate for pain relief) even tho I begged him not to take it

 

as I really dont know protocols for PANDAS, this may be a really good treatment there but I would urge anyone with a TS dx to be VERY cautious of steroid treatment

 

this old article exlains a bit why steroids are bad for TS http://au.geocities.com/jones_kacm/chem.htm

[michele]

Does anyone else find it odd that Dr. K, is the only Dr. out there really suggesting IVIG as the best way to treat the PANDAS symptoms? Have others had their Dr's suggesting this? I almost felt like his website webpediatrics.com was an advertisement for IVIG. I wonder if his business makes a substantial profit on IVIG because it is not covered by insurance. I would be very skeptical of this treatment. I think it would be more of a last resort when all other options had failed. A source having a PANDAS child told me pulse corticosteroids were there best treatment option for her. How many here have tried IVIG and found it to work best for PANDAS? How many clinical trials found it the best treatment? Why doesn't NIMH or Dr. Murphy suggest the IVIG if it is better?

 

Michele

 

Michele

Emma,

In general...it is my understanding that he starts with and tries to stick with Keflex.

 

 

Supplements that he recommends are as follows:

 

Ester C 500 mg

Vit. E 100 mg

Folic Acid 400 mg

Fish oil 1000 mg

B6 20 mg

 

Hope this helps.

 

Kelly

 

I know Dr. K had a bogus story about Dr. Swedo on his site and I let him know it. I think he took it doen since then. He said she did a certain study about a supplement she denied doing.

 

Anyway what do you mean by pulse corticosteroids? Prednizone every once in a while?

 

This is a reply to your question. From the mom who tried this with her daughter. She had a severe case and this gave them the best results.

 

 

"(name removed)was given 30mg/per kilogram of body weight of methylprednisolone for three days and then it was stopped. Slowly over a three month period after that (blank) got well enough to to come off medications. It was not an overnight fix, but gradual. That much steroid sort of stuns the immune system into compliance. I guess that's the easiest way to explain it."

Michele