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Confused...advice sorely needed


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I apologise in advance for the length of this post....

 

I would really appreciate any input at all.

 

My DS10 has been in a severe flare up of his pandas since late December. He had been on prophylactic azithromycin and doing well since early September (about 80%). Just before Christmas my other two kids contracted pertussis. Being as DS was on the azith he was covered against the whooping cough. However he started to become symptomatic (severe anxiety and ocd among other things) a couple of weeks after they became ill. The summer holidays (I'm in Australia) have been a nighmare... DS was worse during January than we have ever seen him. We were close to hospitalizing him. GP changed from Azith to augmentin fearing that he had become resistant to the azith. We also had three weeks worth of prednisolone. Nothing worked. The prednisolone has ALWAYS brough him back to us but not this time. Test showed that antidnase had risen again 450 to 570, asot stayed normal at high 100's . But negative strep swab. IGG was low. All else normal. We became desperate and after flying to Sydney to consult a pediatric neurologist we agreed that Lovan (SSRI) was our only option as he was suffering too much. I have resisted this for the past 2 1/2 years and have always found a combo of abx/pred gets us out of trouble. (never more than 80-90% but not enough to want to go for what I personally feel is a bandaid measure of an SSRI) The Lovan is doing its job and the OCD and anxiety have eased. (I'd say we are traveling at around 60%) but there are still many issues going on and I feel as though the SSRI is masking the problem. Which seems to make the drs happy....

 

DS has had a blocked nose on and off for weeks with lots of bloody mucous. I keep asking the drs why they think this is but because the bloods are all normal (ie show no active infection) they keep glossing over it. So...back in 2011 a nose swab showed moderate staph growth and he was in a flare at the time (it was ignored as lots of people have staph in their nose) . He also recently got a strange rash on his thighs like petechiae ( the one you look for in meningitis etc...scary!!) so at the visit re this rash - as the paed ordered bloods to try to figure out what was causing the rash - I suggested to the him that we swab for staph again. Results: Bloods are all normal and show no reason for the rash except....The swab has come back as heavy growth of erythromicin and penicillin resistant staph. (both of the antibiotics that he has been taking) So paed has given us 10 days of cephalexin. (250mg 3 x daily)

 

We are also in the process of trying to get ivig with some support (although he is skeptical) from the paed and the neurologist in Sydney.

 

My dilemma is now that as he is on the Lovan and showing improvement how will we know how well the cephalexin works?? Or even the ivig if we get it for that matter. Im too scared to take him off the SSRI but really want him off it!

 

I would appreciate any and all thoughts/opinions on any of the issues I have written about here...sorry I know there are a few different topics.... The use of the SSRI, ivig or not ivig, staph as a cause of symptoms?

 

Thanks in advance :)

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One option is to try the cephalexin for a while (maybe 14 days) and have his nose re-swabbed. If the swab shows improvement, then you could consider weaning off the lovan to see what he is like without that.

Edited by Mayzoo
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Ivig is what brought my dd back. We have tried several SSRI throughout this journey that did not help and or made tjings worse. She has gone months without any at all. Her total sadness and depression was palpable so she has founf some relief on lexapro. These kids suffer so badly. If the antidepressant is possibly helping then i say dont stop it now. Just my opinion. Dd was on prozac when she got ivivg. Although it did nothing to help her dr K did not want us changing too many variables. You can sort it out at some point but if it is helping at all...

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I feel your pain and understand your frustration. We also had a similar situation. DD's dr convinced us to keep pushing Zoloft and then (when it stopped working) abilify to the max. Each time they would help a little (or not at all) but then it would go down hill until the point where our dr told us, "we can't do anything else after this." That is when we decided to go ahead and try IVIG. I'm so glad we did. At 12 yrs old, she was on 200mg of Zoloft and quite a bit of Abilify. She had severe OCD and depression. We were really scared. She'd suffered with these off and on for five and a half years. To make a long story short, the IVIGs (notice plural form) are working. She is only on 37 mg of Zoloft and no other psych meds now. She still has mild OCD but it is MILD and livable. She no longer is withdrawn. She enjoys being around others. She doesn't want to die. I have my daughter back. Ivig is the reset button. Abx treat the infections. Make sure that the staph infection is under control. Check for candida (blood test for yeast) and any other type of infection (mycoplasma, Lyme, co-infections, sinus infections, etc) you can think of. Then, if your child isn't better, reset with IVIG. You will know when to reduce the psych meds. Don't worry about them now. When your child is doing better, slowly decrease the psych stuff. Try otherwise to be calm and systematic. It is a long road, but worth it. Good luck.

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Thankyou all so much for your replies. I have taken all suggestions on board. Thanks for helping me to put things into perspective...sometimes that is just so hard... I am constantly questioning my objectivity and that is exhasuting! Ptcgirl thanks so much for your advice....it's so nice to hear someone say they get it...This whole thing has been heartbreaking for us and it's so much more difficult when no one has any idea what you are going through...try as you might to explain it.

I will try again to have the doctor check for other infections, however this in itself is an uphill battle....it was hard enough just to get his nose reswabbed..the dr thinks I am clutching at straws (or mad - or both) My problem is that the dr doesn't have time to do all of the reading that I have done so he knows nothing about this stuff...however when I tell him about it he frowns upon my collecting (what is often anecdotal) evidence off the "dreaded Internet". I print out studies for him to read and I know he doesn't read them. I am grateful that he is investigating the ivig and because of this I can't push too hard on the other stuff. He has said that we might be able to get one or two rounds of ivig but because the results will not be easily measurable that we shouldn't expect that if we do get it that it will be ongoing. When you say ivig's how many are you talking? Do you do them regularly?

 

Thanks again to everyone for your input...it's very much appreciated. :)

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<< To make a long story short, the IVIGs (notice plural form)>>

 

PTCgirl, how far apart were the IVIGs and how did you know you needed more than one?

 

DS14 had his 3 weeks ago and I worry that he may have had PANDAS/PANS almost 10+ years and maybe one IVIG won't be enough.

 

Thanks,

T.Anna

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