New to Group - Please help

[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 have also posted on the OCD and the PANDAS forums too.

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

[dee45]

Colleen,

should Azithromycin be started low then increased??

 

Deanna