Hard not to get my hopes up...

[beeskneesmommy]

We love our children. We would do anything for them. I make bargains all of the time with the powers that be. No rhyme or reason, Brooks just started hitting the skids again and the Cefdinir that was so successful (low levels or absence of PANDAS symptomology for almost 2 months) seemed to have stopped working. We were seeing OCD, vocal/facial tics, adventitious upper body movements, excessive irritability, extreme separation anxiety, regression, hyperactivity, etc. He just went down hill fast starting in May - we had not seen these symptoms quite so extreme since his acute episode last Fall. Last Sun., he was a mess and I was frantic. I started a loading dose of Azith on top of the Cefdinir that evening. By the next morning, hyperactivity was almost gone and this is always the first to go. over the next 2 days he looked better, but was a little up and down in OCD symptoms and some others. By Wed. he was completely normal, healthy and all PANDAS symptoms were gone. The run of Azith ended Thurs. Still looking great and when I give him direction, he says "OK Mommy". That's it. No arguments, screaming, etc. Just "OK Mommy", and he smiles. Sadly, I have a hard time remembering what my healthy child looks like after a tough run like we have had....but I will take it. Now, to make it stick. I send all of my thoughts and prayers to you and your children.

[MomWithOCDSon]

All 10 fingers and toes are crossed for you!

 

We can all use a little luck, a little grace, a little Divine Kindness now and again!

[Lynn777]

Thinking of you & saying a prayer for you!

[sptcmom]

We love our children. We would do anything for them. I make bargains all of the time with the powers that be. No rhyme or reason, Brooks just started hitting the skids again and the Cefdinir that was so successful (low levels or absence of PANDAS symptomology for almost 2 months) seemed to have stopped working. We were seeing OCD, vocal/facial tics, adventitious upper body movements, excessive irritability, extreme separation anxiety, regression, hyperactivity, etc. He just went down hill fast starting in May - we had not seen these symptoms quite so extreme since his acute episode last Fall. Last Sun., he was a mess and I was frantic. I started a loading dose of Azith on top of the Cefdinir that evening. By the next morning, hyperactivity was almost gone and this is always the first to go. over the next 2 days he looked better, but was a little up and down in OCD symptoms and some others. By Wed. he was completely normal, healthy and all PANDAS symptoms were gone. The run of Azith ended Thurs. Still looking great and when I give him direction, he says "OK Mommy". That's it. No arguments, screaming, etc. Just "OK Mommy", and he smiles. Sadly, I have a hard time remembering what my healthy child looks like after a tough run like we have had....but I will take it. Now, to make it stick. I send all of my thoughts and prayers to you and your children.

Azith works well for us too esp loading on Augmentin during flare ups. Happy for you. Im glad you plan to keep working on it to maintain staus quo. Unfortunately symptoms keep coming back with equal gusto with each exposure/trigger until the autoimmunity issue is resolved.We're currently exploring that option for Ds9

Jodie

[beeskneesmommy]

I know - my son's symptoms always come back as well, this last time with more gusto than ever. However, I am taking it as a good sign that he had a very long run of health prior to this episode. He also caught bug after bug throughout May at his preschool so I am hoping that the summer season will be helpful. His titers are finally down (never could do that on Augmentin) from very high this time last year right thru to this past Jan., and now a few months later at normal levels. He had an A&D last Aug., so I am hoping that it will all culminate in getting him turned around. Of course, I know that the autoimmune mechanism must be well in place to have had the recent trouble despite low titers. I do this to myself every time because when he is well, as he is right now, it is SO wonderful and SO convincing, that I find it difficult to envision him in any other way - even though last Sunday he was extremely ill. This is the 3rd time I have seen an "emergency" run of Azith. do the trick. The 1st was when he was very ill with PANDAS but also got pneumonia. The ped. gave him the Azith. for that, and I noticed a drop in PANDAS symptoms. This is the most dramatic and fast turnaround yet. I may sound a little pathetic, but I will never stop believing and I will never give up. Best to you and yours!

[cab40]

We love our children. We would do anything for them. I make bargains all of the time with the powers that be. No rhyme or reason, Brooks just started hitting the skids again and the Cefdinir that was so successful (low levels or absence of PANDAS symptomology for almost 2 months) seemed to have stopped working. We were seeing OCD, vocal/facial tics, adventitious upper body movements, excessive irritability, extreme separation anxiety, regression, hyperactivity, etc. He just went down hill fast starting in May - we had not seen these symptoms quite so extreme since his acute episode last Fall. Last Sun., he was a mess and I was frantic. I started a loading dose of Azith on top of the Cefdinir that evening. By the next morning, hyperactivity was almost gone and this is always the first to go. over the next 2 days he looked better, but was a little up and down in OCD symptoms and some others. By Wed. he was completely normal, healthy and all PANDAS symptoms were gone. The run of Azith ended Thurs. Still looking great and when I give him direction, he says "OK Mommy". That's it. No arguments, screaming, etc. Just "OK Mommy", and he smiles. Sadly, I have a hard time remembering what my healthy child looks like after a tough run like we have had....but I will take it. Now, to make it stick. I send all of my thoughts and prayers to you and your children.

[cab40]

Hello SPTCMMOM and Beeskees, Can you remind me or tell me how old your DS is and what dose and length of tx of Zith did you use?

Edited March 23, 2012 by cab40

[jenbug]

I am so glad to hear your son is doing better on the azith! It must work well, because my son is only on day 4 of 10 and his symptoms are much better today...probably about 50% and that is without ibuprofen.

[beeskneesmommy]

OK, Cab, here is what we have done:

 

My son had a major acute episode that hit him practically overnight last Sept., 4 days after he turned 4 years old. He had been going down hill d/t tons of Strep infections and had been dx with PANDAS at age 2.5, but this was huge. He went from a functioning "normal" kiddo to a kid who stared right thru us, had extreme facial and vocal tics, strongly increased OCD, advetitious movement of the upper body and fingers. I also suspect that he was hallucinating to a minor degree. It is important to note that my son has no other diagnosis and is not in any way measured on the autism spectrum.

 

Upon the onset of these severe symptoms, I got him on a therapeutic dose of Augmentin, one that we would normally give for active Strep (I think it was 600 BID). He improved very slowly, 2 steps forward, 1 step back, over the next several months. During this time, he got pneumonia and took Azith, 5 days, with loading dose on the 1st day. I noticed that his PANDAS symptoms improved, but did not go away (he was still very affected and I would not have expected them to disappear). By Nov., tics, adventitious movements had almost disappeared and OCD improved. Throughout, he had intermittent hyperactivity. He hit a plateau from Nov - Jan., not really improving further, but holding steady and much improved from the onset of severe symptoms in Sept.

 

In mid-Jan., we switched to Omincef (Cefdinir), 125, 2 tsp. BID. His improvement went thru the roof practiclly overnight. Hyperactivity practically disappeared as well as OCD symptoms. Within 5 days after starting the Omnicef, he was completely normal. I remember being at a BounceU with a play group and he and I each got a bottle of water and he sat down next to me and we just chatted for 10 minutes, side by side. I remember being so thankful and so amazed that he was able to do this - be in the moment, healthy and relaxed. This state lasted from mid-Jan. - the end of March, with several glitches but only when he picked up a bug from preschool. The difference was that he would bounce back to normal much faster and the symptom were much less severe.

 

In the beginning of May, He started catching all sorts of bugs at school. He was sick multiple times and I think his immune system kind of went on overload. By the beginning of June, I could see that he was having a lot of trouble. We saw his doc on June 10th, and she gave us a script for Azith., 5 days, typical of what he would get for an infection. When he continued to get worse, with symptoms that were alarming, reminiscent of his acute episode last Sept., but still less severe, I gave him the Azith on top of the Omnicef. I could see him start to clear up 12 hours later and within 3 days, he was a normal, healthy kiddo. He has remained that way now for 2 weeks.

 

Re: your questions about titers, as I understand it: Titers are the measurement of the body's response to Strep. If the titers are high, there is, or has been a Strep infection present that the body has reacted to. When the titers are normal, or lower, the body is not reacting to a current infection BUT THIS DOES NOT MEAN THAT STREP IS NOT PRESENT. My son't titers were very high starting from last June '10 - Jan., '11. This means that Strep came right thru the Augmentin barrier that we created. Thus, the switch to Omnicef. His titers went from very high in Jan., to close to normal in June. However, decreased titers does not mean that PANDAS is gone, as evidenced by my son's flare up in June, as his titers were measureing low at that time. The autoimmune response has been in place now for a long time and his antibodies behave incorrectly despite the lack of Strep reaction in his body. This is called PITAND. His autoimmune response occurrs now for other illnesses, not just Strep.

 

Every kid is different. My son has had PANDAS (diagnosed) since age 2.5, but I am sure that he had it perhaps as young as 18 months or even younger. What has worked for us is not a magic bullet, and may not work for others.

 

Re: your request for AZ docs: I can get you some but tell me what city you are close to. I have a friend and coleague in Phoenix who is a child psychotherapist. She is aware of PANDAS and I think that she may have some referrals she can give me. Please email me directly if you would like this info and I will email it directly to you. In the meantime, I will contact my friend.

 

Hang in there!

 

Kath:)

[cab40]

Hi found a list!

Edited March 23, 2012 by cab40

[beeskneesmommy]

This is all I have for AZ so far. I have not yet heard back from my friend. Please look on PANDAS Network for help with doc referrals as well. I will keep trying. There are referrals for Colorado, Nevada and other surrounding states. We travel 8 hours to see our doc, every 6-8 weeks.

 

Dr. Dinesh Talwar, MD

Pediatric Neurology

Center for Neurosciences

2450 E. River Road

Tucson, AZ 85718

(520) 326-2661 or

(800) 687-4504

[cab40]

where do u live Beesknees?

Edited March 23, 2012 by cab40