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scossio
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My son will have his 1st appt with Dr. B on Feb 8th. He has had pans symptoms for 3 1/2 years. Back in November, just as I thought I was going to have a nervous breakdown my pediatrician referred us to Dr. B but started him on augmentin while we waited for out appt. About 2 weeks after starting abx in Nov I started to see a change in my son. Up until about 10 days ago when he got a simple cold he was doing fantastic! His coughing tic was gone for the first time in 3 yrs, his anxiety was dramatically reduced, and we have not had a rage attack in over a month.

Now it seems like we are back to square one and I just want to cry!!! How could all of the old behaviors have come back like that? Just from a simple cold that he actually got over quicker than usual? It is like night and day! I am so desperate to get my son back again, how do I do that??? I feel like someone played a very cruel joke on us. My son and my family have suffered so much for well over 3 years with no help and no answers, and for the last month it was like having that little boy back that I once knew that was stolen from me, and now he is gone again.

I don't think I will survive until our appt with Dr. B., especially b/c his teachers are NOT understanding or supportive at all!

Has this ever happened to anyone where your child was doing great for a while and then went down hill? Does anyone have any advice?

Stephanie

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This has been a nasty cold/flu/Strep season. My 5 year old son is under the care of Dr. B. He started an abx protocol in July that was nothing short of miraculous. Although he began the journey of PANDAS with very high Strep titers, they had been in the norm range for months before seeing Dr. B., and continued to look good. He was practically 100% for a long time since getting the bump from the Augmentin and Azith from Dr. B in July. Anyway, he took a dip in Nov., for no apparent reason. This lasted a few weeks and then he leveled to normal and continues to look really great. During that dip, we drew blood and his titers were elevated significantly. Basically, although he did not become Strep infected, he must have been exposed to a teacher or kiddo on an consistent basis who WAS Strep infected and he reacted. It is quite possible that this scenario may have ocurred with your kiddo as well. They do not have to be infected for their anitbodies to react, if they are very sensitive. My son reacts to other kids who have recently had the live Flu Mist. Hang ion there. Dr. B knows what he is doing. He has been excellent and aggressive with both labwork and treatment in our case. -Kath :)

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My son will have his 1st appt with Dr. B on Feb 8th. He has had pans symptoms for 3 1/2 years. Back in November, just as I thought I was going to have a nervous breakdown my pediatrician referred us to Dr. B but started him on augmentin while we waited for out appt. About 2 weeks after starting abx in Nov I started to see a change in my son. Up until about 10 days ago when he got a simple cold he was doing fantastic! His coughing tic was gone for the first time in 3 yrs, his anxiety was dramatically reduced, and we have not had a rage attack in over a month.

Now it seems like we are back to square one and I just want to cry!!! How could all of the old behaviors have come back like that? Just from a simple cold that he actually got over quicker than usual? It is like night and day! I am so desperate to get my son back again, how do I do that??? I feel like someone played a very cruel joke on us. My son and my family have suffered so much for well over 3 years with no help and no answers, and for the last month it was like having that little boy back that I once knew that was stolen from me, and now he is gone again.

I don't think I will survive until our appt with Dr. B., especially b/c his teachers are NOT understanding or supportive at all!

Has this ever happened to anyone where your child was doing great for a while and then went down hill? Does anyone have any advice?

Stephanie

 

Stephanie --

 

I know it's hard, but try to hang in there. And yes, we went through a similar pattern with our DS in terms of healing on Augmentin. Now, while it's not to say that you may find out that you need to add some additional immuno-therapies and/or even switch antibiotics in the end, it wouldn't be unusual for the "saw-toothed" recovery pattern to strike about now. I know it's demoralizing and it can make you question your sanity and belief in the path you've traveled thus far. But chances are it will get better again. It seems he's encountered a cold virus that is taxing his system and the antibiotics have no impact upon.

 

I would suggest you try the following: add ibuprofen into the mix and see if that helps your DS through this hard time; try another addition such as valerian root to help take the edge off of some of the anxiety. You might also try upping your DS's zinc; not only is it good for fighting the common cold, but there's some evidence it can help some behavioral issues, as well, such as ADD/ADHD-like attention concerns.

 

As for his school and teachers, do your DS have a 504 or IEP in place? If so, this is when you call upon those accommodations and let the teachers know that now is when he needs them. If not, you might consider asking for a meeting to begin the process so that, in times like these, the teachers will be supportive because they are legally obligated to be so, and not because they're doing your DS any "favors." Failing that, you might try calling him in sick and home-schooling for a week or so to see if you can get the behavioral issues in hand, providing that won't lead to school refusal when it's time to go back.

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My son will have his 1st appt with Dr. B on Feb 8th. He has had pans symptoms for 3 1/2 years. Back in November, just as I thought I was going to have a nervous breakdown my pediatrician referred us to Dr. B but started him on augmentin while we waited for out appt. About 2 weeks after starting abx in Nov I started to see a change in my son. Up until about 10 days ago when he got a simple cold he was doing fantastic! His coughing tic was gone for the first time in 3 yrs, his anxiety was dramatically reduced, and we have not had a rage attack in over a month.

Now it seems like we are back to square one and I just want to cry!!! How could all of the old behaviors have come back like that? Just from a simple cold that he actually got over quicker than usual? It is like night and day! I am so desperate to get my son back again, how do I do that??? I feel like someone played a very cruel joke on us. My son and my family have suffered so much for well over 3 years with no help and no answers, and for the last month it was like having that little boy back that I once knew that was stolen from me, and now he is gone again.

I don't think I will survive until our appt with Dr. B., especially b/c his teachers are NOT understanding or supportive at all!

Has this ever happened to anyone where your child was doing great for a while and then went down hill? Does anyone have any advice?

Stephanie

 

Stephanie --

 

I know it's hard, but try to hang in there. And yes, we went through a similar pattern with our DS in terms of healing on Augmentin. Now, while it's not to say that you may find out that you need to add some additional immuno-therapies and/or even switch antibiotics in the end, it wouldn't be unusual for the "saw-toothed" recovery pattern to strike about now. I know it's demoralizing and it can make you question your sanity and belief in the path you've traveled thus far. But chances are it will get better again. It seems he's encountered a cold virus that is taxing his system and the antibiotics have no impact upon.

 

I would suggest you try the following: add ibuprofen into the mix and see if that helps your DS through this hard time; try another addition such as valerian root to help take the edge off of some of the anxiety. You might also try upping your DS's zinc; not only is it good for fighting the common cold, but there's some evidence it can help some behavioral issues, as well, such as ADD/ADHD-like attention concerns.

 

As for his school and teachers, do your DS have a 504 or IEP in place? If so, this is when you call upon those accommodations and let the teachers know that now is when he needs them. If not, you might consider asking for a meeting to begin the process so that, in times like these, the teachers will be supportive because they are legally obligated to be so, and not because they're doing your DS any "favors." Failing that, you might try calling him in sick and home-schooling for a week or so to see if you can get the behavioral issues in hand, providing that won't lead to school refusal when it's time to go back.

Actually, I am a special education teacher in a local school dist. I work with children with ASD, so I can not home school him. He has a 504 plan and my pediatrician even called to explain PANDAS to the admin and staff, but his teacher could care less. She just sees my son as a behavior problem and contributes to his low self-esteem. His strep titers were normal when we started abx. He was high for myco p. He had chronic croup and sinus infections for years, I believe that is what caused his symptoms. He also developed Hashimoto's when all of the symptoms started.

I have him on inositol, along with other meds. I will try to add zinc and the valerian root. I did put him back on ibuprofen. I guess I just never made a connection with him reacting to others b/c he never really had a good period for very long, it just seems he has been symptomatic for all these years.

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Actually, I am a special education teacher in a local school dist. I work with children with ASD, so I can not home school him. He has a 504 plan and my pediatrician even called to explain PANDAS to the admin and staff, but his teacher could care less. She just sees my son as a behavior problem and contributes to his low self-esteem. His strep titers were normal when we started abx. He was high for myco p. He had chronic croup and sinus infections for years, I believe that is what caused his symptoms. He also developed Hashimoto's when all of the symptoms started.

I have him on inositol, along with other meds. I will try to add zinc and the valerian root. I did put him back on ibuprofen. I guess I just never made a connection with him reacting to others b/c he never really had a good period for very long, it just seems he has been symptomatic for all these years.

 

Our psych has told us that even "regular anxiety" (non-PANDAS) can increase with exposure to illness. I think that's a trend we missed in our DS, too, in the early years prior to his PANDAS diagnosis. Now it makes a lot of sense, doesn't it?

 

Unfortunately, we didn't have results with inositol, though I know some have. I don't know if we weren't giving it long enough or in high enough doses, or if DS just wasn't going to respond to it regardless. But valerian and ibuprofen both worked very well for us, and we've recently found the attention help via zinc.

 

We have one teacher who, unfortunately, also tends to treat our DS as though he has a behavior problem instead of a legitimate illness; for us, though, that's only one teacher out of nine during DS's day, so we just balance that as best we can. I know it's always a tough call . . . "catching more flies with honey" versus being the "squeaky wheel" . . . and I'm sure that's even more the case when you're working in the same district. Any chance you could get your DS moved into a different teacher's room, though? Is there a better, less negative option? So sorry! That is a really stinky situation! :angry:

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Stephanie--I am so sorry. The good news: Your son had a good "treatment effect", and you have further options.

 

Yes, many of us have gone through this, and the set-backs are horrid when they happen--for everyone, but let this only fuel your determination to get him "back" again.

 

I would hold on to the VERY good-news that your son DID improve with antibiotics! Now go after it full-force would be my strong recommendation and asap.

(I'd start by calling and begging for an earlier appt. w/ Dr B.)

 

My daughters have both had long periods of no-symptoms, and then with exposure to others (particularly when around others who were strep positive!) they both had horrible flairs.

 

We handled it with trying changes of antibiotics, steroid bursts, and finally had to go to the immuno-modulating therapies...

 

My d who had symptoms that sound similar to your son's had IVIG which was an absolute life-changer and has held her so far (she continues on full abx as well.)

 

Don't despair, you HAVE seen that he responds to the PANS treatment paradigm, you just may need to keep going. My best as you pursue the next step.

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Stephanie- what state are you in? I too teach Sp. Ed. - students with ASD! We are in Texas. Yes, part of this frustrating illness is the backsliding. It always is so scary to see and messes with my PTSD. Our. son would react to anyone near by with strep. They are said to be like "canaries in a coal mine". Our son had a friend over and within a few hours he looked lost, glassy dilated eyes, and OCD ramped up.... Later the friends sister said that he left our house and went to a walk in clinic.... He had strep. We needed to persue IVIG because the doctor says that is suppose to boost his imunity so he doesn't react to others with strep.

Edited by 3boysmom
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The hardest part of a "back slide" is the fact that my son gets so out right nasty. He has no ability to control his emotions when he is like this, and I honestly feel abused when this happens. I know that sounds selfish...this should be about him, not me...but I have been living with this for 3 1/2 years and to have 6 wonderful weeks and then get the rug just ripped out, is just so unbearable!

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