Help, New to site

[momtocole1]

Hello, I am new to this group and so glad that I found it. I have a son that is 11 years old. He was diagnosed with PANDAS about 3 years ago. He was doing really well up until about 4 weeks ago when he got another strep infection. He had no symptoms of strep, but had a huge impetigo like sore on the corner of his mouth. Overnight his OCD went through the roof and his tics started to get really bad. The pediatrician put him on 10 days of Keflex, he got better very quickly. Tics/OCD was not gone, but much better. Within 5 days things went very down hill again. We started Keflex and by day 7 gave up because the symptoms were worsening so much again.

We found a new doctor that is a DAN dr. and he perscribed Zithromax for 2 weeks and then we will go through testing.

We have done metals testing about a year and half ago through a holistic type doctor and results were negative for metals.

We have never done blood work, he is absolutely petrified of it so I have never forced him. Now I think he has to do the blood work. He was doing so well for so long that I felt like the PANDAS was gone, and then BOOM.

 

I almost don't know where to start. I have been reading all the different forums on this site. Pandas, OCD and Tics/Tourettes. My son does not have any of the "gut" issues that many kids on the spectrum have but he does have a somewhat sensitve stomach. I am trying to get him to learn to swallow pills. He takes a calcium/mangnesium supplement at night to calm him down which helps.

 

It seems that the Zith is not working at all, he just seems to be getting worse. He has a new tic tonight where he is clucking his tongue very loudly. What was really strange is that he seemed to start to really improve on the first 2 days on the zith, then this past Saturday I gave him a 1/2 of a capsule of Natural Factors double strength acidophilus and Bifidus. I think I really overdid it. He got 5 billion active cells. Things went way down hill from there. Could this one dose really cause a problem. A friend told me that I should have started at 1/2 a billion. It is hard to believe that a supplement could cause such a problem.

 

He has become very explosive, crying all the time. New tics each day, he is perseverating so much and is going into the backyard to sword fight alone, it is like is slipping into his own world. I am so worried and I don't even know where to start. We have tried different meds over the years and quite a few natural supplements, 5htp, inisotol. None of them seemed to ever help but I don't think I stuck with it long enough.

 

He sees an OCD therapist hat is doing ERT which was helping, slowly until the strep hit.

 

I don't know where to turn and it feels like he just keeps getting worse.

Sorry for such a long initial post.

I will post on the OCD and Tic forums also.

Thank you, Judy...

[colleenrn]

Judy-

I am so sorry to hear what you and yor son are going through. I only have a minute this morning for a quick response, but will add more later. What dose of Zithromax is your son on? It sounded like he had a great initial response. Most physicians put children on Zithromax 250mg per day. I have my children on that dose. I recently found out that in cases of strep, the best treatment dose is 500mg for even a child of 11. My sister's pediatrician says that research shows that in cases of strep, 250mg is not enough (250 is OK for OTHER illnesses). I KNOW some will think this is too much- I am wondering the same, but this pediatrician stays very curent on research and insists this is the case. I am trying to find out what research she has read and I will post it as soon as I get it.

Bottom line is- could you get your physician to increase him to 500mg of Zithromax, at least for a 10 day course. I would hold off on the probiotics just for a little while and see if that makes any difference.

 

There is a PANDAS doctor named Dr.Kovacevic who you can email or have a phone consult with. His web site:

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

 

Other things to consider trying : Inositol powder (a B vitamin) helps with OCD, 5HTP helps with anxiety- both can be purchased at a health food store.

 

Does he still have impetigo? If so get a prescription for mupericon (Bactroban). It is a topical ointment that kills strep. Even though he is on an oral antibiotic, the mupericon can still help with the strep on the skin.

 

Hang in there!

Colleen

[EAMom]

I would agree with Colleen about the dosing...how much does your son weigh?

 

Also, think about adding in Advil (Ibuprofin, motrin). It can help with mood/sleep etc. We think it decreases brain inflammation. Several people on this forum have found it helpful.

[EAMom]

Hi Judy,

 

I was re-reading your post...if things are that bad the other option (vs. Ibuprofen) would be to do a steroid burst. (Others on this forum have done it and may be able to offer more advice.) It may temporarily cause a decrease in symptoms, can confirm the PANDAS diagnosis, and may give you some info. as to whether IVIG would be appropriate. And have you considered IVIG? Your son is at the upper age limit for IVIG to be effective so you don't want to wait too much longer if you think you may want to do it. Several on this forum have used Dr. Kovasevic's (sp?) protocol (he is in chicago) or even flown to chicago to have him do the IVIG. Dr. K will answer e-mails at no charge and does phone consults for a fee. Here is his website: http://www.webpediatrics.com/pandas.html

[P_Mom]

Hi!

 

Sorry to hear about how things took a tumble. I look at my boys and how well they are doing and think the same thing...with PANDAS, things can turn around any day.

 

Can I ask...was your son on any preventative antibiotic when he got strep again? What has been your treatments since he was diagnosed 3 years ago?

 

If you have done the antibiotics and are sure the strep is eradicated (you might want to get a culture done to be sure), then I would implicate a steroid burst ASAP to reduce inflammation and symptoms quickly.....also, to check for effectiveness of IVIG. Your son is 11...IVIG can still be effective, but, time is of the essence at this point.

 

Kelly

[momtocole1]

Dear Colleen,

 

Thank you so much for your reply. My son weighs 111 pounds. He is overweight for his age. I would be so grateful to get the info on the recent research about the higher dose of Zithromax so that I can fax it to my doctor as soon as possible. Ryan is just having so many tics. If the higher dose might help I would like to do it.

 

What I still don't understand is this: Ryan woke up with a very sore throat yesterday. His toncils looked swolen and his throat was irritated. I asked the dr. if we could try another antibiotic and he said to stay on the zithromax for the full two weeks and then we would see how Ryan is doing. He is currently on day 6 of the 14 day regimin. The dr. said that I should not bring Ryan in for another strep test because he is on antibiotic so it will be negative. This is the part I don't understand. I know that typically a throat culture will show a negative result if a child is on an antibiotic, but what if it not the correct antibiotic. If the Zith is not killing the strep bacteria then wouldn't it show positive?

 

The dr. said it might be a viral thing that Ryan is dealing with now on top of overcoming the strep. He said the sore throat could be to Ebstein Barr virus. He is not overly tired though.

 

Motrin does seem to help, I am thinking that it is overal reducing inflammation.

 

I did use Bactroban for the impetigo and that helped. What seemed to finally help the most was the oral keflex he was on a few weeks back when he first got the strep. It was hard for the external antibiotic to work because Ryan kept picking at the impetigo sore and licking it and breaking it open by opening his mouth really wide. It became a tic. (God help me! )

 

Thank you for the advice, I will definately call that dr. you mentioned. Could you please tell me about your child with PANDAS or can I read your story on this site?

 

Please let me know if you doc. is able to provide more detail on the research re: 500 mg. zithromax.

 

Take care and it is so nice to know that I'm not alone!

 

Judy...

 

Judy-

I am so sorry to hear what you and yor son are going through. I only have a minute this morning for a quick response, but will add more later. What dose of Zithromax is your son on? It sounded like he had a great initial response. Most physicians put children on Zithromax 250mg per day. I have my children on that dose. I recently found out that in cases of strep, the best treatment dose is 500mg for even a child of 11. My sister's pediatrician says that research shows that in cases of strep, 250mg is not enough (250 is OK for OTHER illnesses). I KNOW some will think this is too much- I am wondering the same, but this pediatrician stays very curent on research and insists this is the case. I am trying to find out what research she has read and I will post it as soon as I get it.

Bottom line is- could you get your physician to increase him to 500mg of Zithromax, at least for a 10 day course. I would hold off on the probiotics just for a little while and see if that makes any difference.

 

There is a PANDAS doctor named Dr.Kovacevic who you can email or have a phone consult with. His web site:

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

 

Other things to consider trying : Inositol powder (a B vitamin) helps with OCD, 5HTP helps with anxiety- both can be purchased at a health food store.

 

Does he still have impetigo? If so get a prescription for mupericon (Bactroban). It is a topical ointment that kills strep. Even though he is on an oral antibiotic, the mupericon can still help with the strep on the skin.

 

Hang in there!

Colleen

[greeneyes48072]

I just wanted to chime in and second EAMom's suggestion of the steroid burst. It should at least give him a temporary break from it all and also help confirm PANDAS for you...

[momtocole1]

Dear Colleen,

 

I replied already, but something happened with the site and I don't think it actually was sent.

 

Thank you so much for getting back to me. My son is 111 pounds at 11 years old. He is overweight. He gained a tremendous amount of weight when we put him on Prozac. Do you think you could forward me the info on the 500 mg. of Zithromax once you get it from your doc. I have tried to find it on the net. My dr. said that he would up the dose to 500, but I am afraid.

 

What I don't understand is why my dr. said that we can't do a strep culture while my son is on antibiotic, that it will come up negative. A couple of days ago his throat became all enflamed again and his tonsils looked really big. His symptoms have been pretty bad. I thought that a strep culture would be positive if he is on the wrong antibiotic or the wrong dose. Is that correct. This new dr. that I found is a board certified md and a dan doctor. He has a son with PANDAS and autism, but he does not seem very knowledgeable about PANDAS. I have been telling him what I want to do based on my research and that is an uneasy feeling.

 

Please let me know if you have any info on the 500 zith.

 

Thank you,

 

Judy

 

Judy-

I am so sorry to hear what you and yor son are going through. I only have a minute this morning for a quick response, but will add more later. What dose of Zithromax is your son on? It sounded like he had a great initial response. Most physicians put children on Zithromax 250mg per day. I have my children on that dose. I recently found out that in cases of strep, the best treatment dose is 500mg for even a child of 11. My sister's pediatrician says that research shows that in cases of strep, 250mg is not enough (250 is OK for OTHER illnesses). I KNOW some will think this is too much- I am wondering the same, but this pediatrician stays very curent on research and insists this is the case. I am trying to find out what research she has read and I will post it as soon as I get it.

Bottom line is- could you get your physician to increase him to 500mg of Zithromax, at least for a 10 day course. I would hold off on the probiotics just for a little while and see if that makes any difference.

 

There is a PANDAS doctor named Dr.Kovacevic who you can email or have a phone consult with. His web site:

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

 

Other things to consider trying : Inositol powder (a B vitamin) helps with OCD, 5HTP helps with anxiety- both can be purchased at a health food store.

 

Does he still have impetigo? If so get a prescription for mupericon (Bactroban). It is a topical ointment that kills strep. Even though he is on an oral antibiotic, the mupericon can still help with the strep on the skin.

 

Hang in there!

Colleen

[momtocole1]

Thank you so much for writing back. My son is 111 pounds. Do you have any data on the 500 mg. Zithromax that I can share with my son's dr.

I completely agree with you on the Motrin, it seems to really help.

 

Thanks,

Judy...

 

I would agree with Colleen about the dosing...how much does your son weigh?

 

Also, think about adding in Advil (Ibuprofin, motrin). It can help with mood/sleep etc. We think it decreases brain inflammation. Several people on this forum have found it helpful.

[momtocole1]

Do you have any other info on the steriod burst. My dr. wants to wait to do it until after Ryan has been on the zith for 2 weeks. We see him on Monday.

 

Thank you for replying,

 

Judy

 

I just wanted to chime in and second EAMom's suggestion of the steroid burst. It should at least give him a temporary break from it all and also help confirm PANDAS for you...

[colleenrn]

Judy,

The info about using 500mg of Zithromax in cases of strep came from my sister's pediatrician. I have not been able to find it online and my sister has not gotten it from her doctor yet. Her pediatrician said that physicians are undermedicating in the cases of strep.. She said that with strep, the 500mg of Zithromax is needed and she puts my niece (age 8 and weighs 60 lb.) on 500mg of Zithromax when she has strep. She is an extremely cautious doctor. She won't even let my sister's children stay on longterm Zithromax, but insists that 500mg is needed to treat strep.

Colleen

[pmoreno]

Hello, I am new to this group and so glad that I found it. I have a son that is 11 years old. He was diagnosed with PANDAS about 3 years ago. He was doing really well up until about 4 weeks ago when he got another strep infection. He had no symptoms of strep, but had a huge impetigo like sore on the corner of his mouth. Overnight his OCD went through the roof and his tics started to get really bad. The pediatrician put him on 10 days of Keflex, he got better very quickly. Tics/OCD was not gone, but much better. Within 5 days things went very down hill again. We started Keflex and by day 7 gave up because the symptoms were worsening so much again.

We found a new doctor that is a DAN dr. and he perscribed Zithromax for 2 weeks and then we will go through testing.

We have done metals testing about a year and half ago through a holistic type doctor and results were negative for metals.

We have never done blood work, he is absolutely petrified of it so I have never forced him. Now I think he has to do the blood work. He was doing so well for so long that I felt like the PANDAS was gone, and then BOOM.

 

I almost don't know where to start. I have been reading all the different forums on this site. Pandas, OCD and Tics/Tourettes. My son does not have any of the "gut" issues that many kids on the spectrum have but he does have a somewhat sensitve stomach. I am trying to get him to learn to swallow pills. He takes a calcium/mangnesium supplement at night to calm him down which helps.

 

It seems that the Zith is not working at all, he just seems to be getting worse. He has a new tic tonight where he is clucking his tongue very loudly. What was really strange is that he seemed to start to really improve on the first 2 days on the zith, then this past Saturday I gave him a 1/2 of a capsule of Natural Factors double strength acidophilus and Bifidus. I think I really overdid it. He got 5 billion active cells. Things went way down hill from there. Could this one dose really cause a problem. A friend told me that I should have started at 1/2 a billion. It is hard to believe that a supplement could cause such a problem.

 

He has become very explosive, crying all the time. New tics each day, he is perseverating so much and is going into the backyard to sword fight alone, it is like is slipping into his own world. I am so worried and I don't even know where to start. We have tried different meds over the years and quite a few natural supplements, 5htp, inisotol. None of them seemed to ever help but I don't think I stuck with it long enough.

 

He sees an OCD therapist hat is doing ERT which was helping, slowly until the strep hit.

 

I don't know where to turn and it feels like he just keeps getting worse.

Sorry for such a long initial post.

I will post on the OCD and Tic forums also.

Thank you, Judy...

 

You say he had strep, but no symptoms - did he test positive for strep? and the impetigo like sore - are you sure it isn't herpes simplex 1? That's how my daughter started down the PANDAS road 1 1/2 years ago. and now she has an outbreak of 1 or 2 lesions on her lip in pretty much the same place every other month or so. If it is that - the abx won't do anything for it. Right now she has 2 lesions that started a few days ago. I usually use an over-the counter very expensive topical med (comes in a little vial for about $18) but it lasts for a while. I put it on as soon as she says her lip is itching. I put it on 2 or 3 times a day (sometimes more the first day and will do that for a couple days) then it usually goes away pretty well (if I didn't do that it would get much larger, crusty and stay for a week or more). This time I added valtrex by mouth and I don't know if it's related, but she has been really irritable since I started it. Besides that, it doesn't seem to be making the sore go away any faster than if I were just using the topical. The only reason I decided to try it is because I've heard that there are a number of people who have recovered their kids from autism with it and I was curious to see what effect it would have on her behavior. I imagine that the way it must work is that if used long term it should keep the viruses away and prevent an outbreak in the first place. It does contribute to yeast though and I believe she already has a problem with that since she's been complaining of an itchy bottom for almost a month now. Anyway, did you ask your son if the lesion on his lip is itchy? Does it look like it could be a herpes lesion? Pat