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At the end of my rope...


evie

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Hi All,

 

It's been a long while since I've posted. I'll update you quickly. My 9 year old son has had PANDAS for just about three years now. For the first year and a half we tried all different medical approaches - loads of antibiotics, Zithromax, Augmentin, Keflex...to name a few. We did see improvement at times but we got to the point in which antibiotics were not working to alleviate any of his symptoms anymore and my son was VERY sypmtomatic - ticcing (mainly eye blinking), VERY irritable moods, out of control behavior...etc.

 

Out of desperation I tested him for a gluten and casien intolerance (Entero Labs) and the results were as I expected - he tested positive to both. I was very overwhelmed, but we have managed to pull through and we have kept him on a GFCF diet for about 18 months now. He is also taking a variety of vitamins (by Shaklee) - I am being guided by a woman who works side by side with a DAN doctor.

 

Well, I'd love to say that we have had only smooth sailing since, but truthfully - we've had MANY ups and downs - more downs than ups. He is constantly being exposed to strep - it is very rampant in the neighborhood that I live - my kids and all of the neighbors kids are constantly coming down with it. He generally tests negative with a throat swab, but his titers are always high.

 

Every once in a while, when he slips back - we go ahead and give him a dose of antibiotic to relieve his symptoms. Our trick is finding the right one for him. We have cycled through many different classes and not always do they work for him - even if it did work the previous time. The DAN doctor does not like the idea of keeping him on prophylactic antibiotics - due to yeast and other factors that she feels are not good for him.

 

Recently, he has been miserable the past 6-7 weeks. His ticcing is really bothering him, he can't concentrate in school (he usually does very well in school when he is not 'PANDAS-like'.) Not to mention, he is making life extremely difficult for all of us at home. He is impossible to deal with! He is complaining about the diet and taking his vitamins is a MAJOR battle every day.

 

Overall, I got to the point in which I decided to put him on antibiotics. I went through 4 different medications: Amoxil, Clyndamycin, Keflex, and now he is still on Augmentin. We actually saw an initial improvement after 48 hours of the Augmentin, but it came and went - and as of this morning (day #7 on Augmentin) we are back to square one.

 

Right now I am calling out to all of you for advice. How can I get my son back? I don't know what else to do. This morning I spoke with a pediatrician (not my own)that I sometimes consult with regarding PANDAS and she recommended Zithromax. I will probably try that next, but I know we haven't had great results with it in the past. I am really desperate. If anyone has any ideas for me I would greatly appreciate it. I feel like the whole diet and vitamins have been for nothing....

 

Please help!

 

Evie

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Evie,

Does your son still have his tonsils and adenoids? In my daughter's case, each antibiotic stopped working until we had her tonsils and adenoids removed. Hers were also very large and caused slight apnea as well as very frequent strep throat. Our ENT said her tonsils were so cryptic (full of holes) that the antibiotics were not getting rid of the strep. Just thought I would mention that in case that is a possibility.

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Thanks, colleenrn for your reply. Actually, that is a good point. He still has his adenoids and tonsils. We kind of felt that the strep was lurking somewhere - although we didn't think it was in his tonsils - he is generally negative on a throat swab. We can't seem to eradicate it whatever we do.

 

I do have an appointment for him at a top ENT in NYC early April. My younger son who did have his tonsils and adenoids removed (not a PANDAS kid - but chronic strep and snoring) has a follow up and I decided to take him along to see what he has to say. The ENT did suggested removing his tonsils. He said many PANDAS kids are helped in that way.

 

If anyone here has had positive PANDAS results after removing their child's tonsils/adenoids- please let me know. It might help me to make an informed decision when I go for my appointment with him in a few weeks.

 

Thanks!

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((((HUGS))))

I wish I had answers for you! We are going through similar concerns at our house, too! This sure is a bumpy road we are all on. Try giving it over to God and pray for guidance. I know how difficult it is and how overwhelming it seems. Today has been a particulary rough one for us...

 

You will be in my prayers!

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Hi evie -

SO sorry to hear what your son - and family - are going through !

I am the mother of a 7 year old boy, diagnosed with PANDAS a year ago (being sick for 2 and a half year), so I know of the troubles you´re all having :-(.

My son has had the best results with Zithromax, in that he has tried Penicillin and Spectramox as well.

Have you considered IVIG ??

NIMH don´t RECOMMEND it, but have had GOOD results with that treatmentprotocol.

My son too has been treated with IVIG, and benefited from it !!

All the best wishes for your son, you and your family !

PANDAS_Denmark

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PANDAS DENMARK, Could you tell me if your son has been symptom free since the IVIG? Was it an easy procedure with no complications or was there some side effects? Did your insurance cover it and what was the cost? How long ago was your son treated? How is he doing now? Thanks.

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PANDAS DENMARK, Could you tell me if your son has been symptom free since the IVIG? Was it an easy procedure with no complications or was there some side effects? Did your insurance cover it and what was the cost? How long ago was your son treated? How is he doing now? Thanks.

 

Hi bmom -

I will try to answer your questions as good as I can.

My son was treated with IVIG april last year, that is two month after he was diagnosed.

In my sons case it was not an easy procedure, but COULD have been, was it not he was having some kind of infection at the time the treatment was started. It did take 5 days to treat him, because they had to stop the treatment every time his fever was rising, and start it again when it was falling. It was ment to be only 2 days. But he had no sideeffects of the treatment itself, and if you ask him today, whether he will ever have this kind of treatment again or deal with the PANDASstuff, his answer is clear : "IVIG for sure !"

In Denmark most of us don´t have insurances as such, but if a treatment is necessary in a/the doctors opion(s), one will be treated for free; taxpaid.

In my sons case the doctors found that it was worth trying the IVIGtreatment. As such I didn´t have to pay.

My son hasn´t been symptomfree since the IVIG :-(.

The IVIGtreatment DID have GOOD results, but the prophylactic antibiotic treatment he was given at the time wasn´t effective (enough) (Penicillin V) and only a few weeks after the treatment he was having another strepinfection and with it : New symptoms :-(.

I have been told that IVIG only has an effect on the symptoms that are present at the time of the treatment. When/if the child is having another strepinfection AFTER the IVIGtreatment another PANDASepisode will occur.

Since then I have been discussing with the doctors, if and when we should "try" the IVIG again, and only recently I succeded in convincing the doctors, that it should/will be tried again, if my son gets as many symptoms as he had when he was treated the last/first time. And I won´t hesitate !

Since then I have been discussing with the doctors too, which prophylactic treatment he should be given.

We have tried Spectramox (with SOME result, mostly in the beginning), and since august : Zithromox. Zithromox with the best result.

From august to january my son didn´t attend school. I was too afraid to send him, given the fact that streptococcus are VERY common among children in this age. In this - long - period my son had no strepinfections - and no PANDASsymptoms !

As soon as he started school again : Infections (of ALL kinds) and new symptoms ... but mostly mild.

Best wishes -

PANDAS_Denmark

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Thanks everyone for your responses of support and encouragement.

 

I've heard of IVIG but thought it was an extreme approach. I was just doing some reading on www.webpediatrics.com and I guess I have to do some more research as far as safety and side effects. Maybe this is an idea. I'll also have to check into my insurance coverage. (BCBS).

 

Has anyone else has success other than PANDAS_Denmark? If so, please let us know. I'd love to have more information.

 

Another question: Something I read on that site is bothering me regarding IVIG.

 

Success of IVIG in PANDAS appears to be age-limited. Sometimes during and particularly after the completion of puberty the IVIG treatment is likely to become ineffective. Our oldest patient that has favorably responded to the IVIG treatment was 13 1/2 year old at the time.

 

I was under the impression that the 'P' in PANDAS stood for 'pediatric'. Isn't this something that our kids will outgrow once they hit puberty? (PLEASE!?)

 

Has anyone out there had the experience of their child outgrowing this disorder (or not?).

 

Please share...

 

Thanks,

Evie

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The P does stand for Pediatric...meaning it manifests in childhood...but, that does not mean it will necessarily go away in adulthood...although there is great reason to be hopeful...it seems the majority of these kids will improve...some even completely remitting. There are just no guarantees with this, that is what makes it so hard, only time will tell.

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Evie,

Hello. Sorry to hear about your son's tough episode. We have had many months of those too. Remember they wax and wane so if he is waxing it will intermit soon. How long has this episode been?

Our longest tic episode was four months. It was very stressful for us too. I have found my sons symptoms of tics and OCD are so much better since we have started daily omnicef in Jan. I just started him on daily 1 mg. of Abilify and he is starting to come out of the dark emotional hole he has been in for years. He is so much easier to get along with, doesn't cry or throw tantrums. Ask your neurologist about it. We are using it for the ADD and mood swings and tics. I tried the GF diets and the supplements but nothing was helping the attention and emotional liability. I think I may have found a way to get my son back! He has been sick for five years since his first PANDAS episode. I am right there with you. It is an exhausting challenge trying to figure out treatment for such a contraversal diagnosis. All the best to you all.

 

Michele

 

Hi All,

 

It's been a long while since I've posted. I'll update you quickly. My 9 year old son has had PANDAS for just about three years now. For the first year and a half we tried all different medical approaches - loads of antibiotics, Zithromax, Augmentin, Keflex...to name a few. We did see improvement at times but we got to the point in which antibiotics were not working to alleviate any of his symptoms anymore and my son was VERY sypmtomatic - ticcing (mainly eye blinking), VERY irritable moods, out of control behavior...etc.

 

Out of desperation I tested him for a gluten and casien intolerance (Entero Labs) and the results were as I expected - he tested positive to both. I was very overwhelmed, but we have managed to pull through and we have kept him on a GFCF diet for about 18 months now. He is also taking a variety of vitamins (by Shaklee) - I am being guided by a woman who works side by side with a DAN doctor.

 

Well, I'd love to say that we have had only smooth sailing since, but truthfully - we've had MANY ups and downs - more downs than ups. He is constantly being exposed to strep - it is very rampant in the neighborhood that I live - my kids and all of the neighbors kids are constantly coming down with it. He generally tests negative with a throat swab, but his titers are always high.

 

Every once in a while, when he slips back - we go ahead and give him a dose of antibiotic to relieve his symptoms. Our trick is finding the right one for him. We have cycled through many different classes and not always do they work for him - even if it did work the previous time. The DAN doctor does not like the idea of keeping him on prophylactic antibiotics - due to yeast and other factors that she feels are not good for him.

 

Recently, he has been miserable the past 6-7 weeks. His ticcing is really bothering him, he can't concentrate in school (he usually does very well in school when he is not 'PANDAS-like'.) Not to mention, he is making life extremely difficult for all of us at home. He is impossible to deal with! He is complaining about the diet and taking his vitamins is a MAJOR battle every day.

 

Overall, I got to the point in which I decided to put him on antibiotics. I went through 4 different medications: Amoxil, Clyndamycin, Keflex, and now he is still on Augmentin. We actually saw an initial improvement after 48 hours of the Augmentin, but it came and went - and as of this morning (day #7 on Augmentin) we are back to square one.

 

Right now I am calling out to all of you for advice. How can I get my son back? I don't know what else to do. This morning I spoke with a pediatrician (not my own)that I sometimes consult with regarding PANDAS and she recommended Zithromax. I will probably try that next, but I know we haven't had great results with it in the past. I am really desperate. If anyone has any ideas for me I would greatly appreciate it. I feel like the whole diet and vitamins have been for nothing....

 

Please help!

 

Evie

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Evie,

 

I'm so sorry how you are feeling. I know that feeling all too well. It is about 2 1/2 years for us, and some days it does feel like he goes backwards and he is 14yo. I see that he seems to be taking a long time to get through puberty. He still has now underarm oder or hair. His legs are starting to show some darker hair down by the ankles. He does not even have all his adult teeth.

 

I'm hoping this is why it is taking so long to really notice a calming in him. What I mean is my son waxes every few days. Then he will wane for about 2 or 3. Not very often will he wane for a week.

 

C.P.

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Thank you all for your emotional support. I wish you all well and hope that this long and weary road that we are all traveling will soon come to an end.

I am now actively researching the IVIG idea. It seems like this is some sort of 'cure'. I will keep you all posted. For now we are going to try Zithromax again.

 

I'm keeping my fingers crossed!

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