Backsliding at week 10 post IVIG, Need advise please

[sptcmom]

Hi

I haven't been posting much since last two weeks DS had two strep exposures at camp and was ramping up with OCD, hyperactivity and new tics.Exposures on July 19th (possibly week before), I found out July 21st and upped meds. Dr K suggested doubling up meds which I did.We saw hyperness go down, no add on of anymore symptoms. Over the weekend we decided to go the anti magnetic fields route. We pulled out our wireless router, all plugged in stuff, cell phones, replaced cordless with regular phone. The Wii wireless sensor and the TV remotes are still there- don't have an alternative yet.

Added Oliveleaf extract and oil of oregano two days ago.

DS has two loose teeth since Saturday. Been using a natural antiseptic mouthwash from Wholefoods Market and coating the two loose teeth with clove oil 2x/day.

Then two days ago the tics have been really bad along with some new ones also sensory stuff- smells/sniffs his hands hard, sniffs his tennis raquet etc. Says "Im a big sniffer now mom".... I am TERRIFIED he's going to sniff up germs and God knows what else.

Called Dr K. he says to further up the meds even more another 10 days and then if not better to do a steroid burst.

We've never had a steroid burst before.Just Augmentin, Biaxin and IVIG. I am very confused

1) how does upping ABX help with tics?

2) Doesn't steroid burst first improve symptoms and then they come back very bad?

3) Is it safe to do steroid burst while still taking full strength ABX?

4) when the heck do I decide if the IVIG failed and we need a new one?

Dr K instructed me in his email to just up meds yet again, observe and let him know after a week. I doubt he'll entertain followup emails and I am going nuts trying to figure this out.

I'm so sorry if I'm being repetetive. I haven't slept in days. This last weekend my mom the gynecologist and almost 80 years old revealed a ton of my past medical history for the first time and its VERY significant for PANDAS from age 5 to age 14 and I've been trying to deal with that blast fromt the past but thats a future post.

Please help.......

Jodie

[momaine]

Hi

I haven't been posting much since last two weeks DS had two strep exposures at camp and was ramping up with OCD, hyperactivity and new tics.Exposures on July 19th (possibly week before), I found out July 21st and upped meds. Dr K suggested doubling up meds which I did.We saw hyperness go down, no add on of anymore symptoms. Over the weekend we decided to go the anti magnetic fields route. We pulled out our wireless router, all plugged in stuff, cell phones, replaced cordless with regular phone. The Wii wireless sensor and the TV remotes are still there- don't have an alternative yet.

Added Oliveleaf extract and oil of oregano two days ago.

DS has two loose teeth since Saturday. Been using a natural antiseptic mouthwash from Wholefoods Market and coating the two loose teeth with clove oil 2x/day.

Then two days ago the tics have been really bad along with some new ones also sensory stuff- smells/sniffs his hands hard, sniffs his tennis raquet etc. Says "Im a big sniffer now mom".... I am TERRIFIED he's going to sniff up germs and God knows what else.

Called Dr K. he says to further up the meds even more another 10 days and then if not better to do a steroid burst.

We've never had a steroid burst before.Just Augmentin, Biaxin and IVIG. I am very confused

1) how does upping ABX help with tics?

2) Doesn't steroid burst first improve symptoms and then they come back very bad?

3) Is it safe to do steroid burst while still taking full strength ABX?

4) when the heck do I decide if the IVIG failed and we need a new one?

Dr K instructed me in his email to just up meds yet again, observe and let him know after a week. I doubt he'll entertain followup emails and I am going nuts trying to figure this out.

I'm so sorry if I'm being repetetive. I haven't slept in days. This last weekend my mom the gynecologist and almost 80 years old revealed a ton of my past medical history for the first time and its VERY significant for PANDAS from age 5 to age 14 and I've been trying to deal with that blast fromt the past but thats a future post.

Please help.......

Jodie

antibiotics would help if he has a current infection.

steroids help for a time, then stop helping. but things don't worsen beyond where they were, in my experience. It is safe to take antibiotics and steroids, yes. Personally, at ten weeks, if the antibiotics and steroids do not bring him around soon, I would consider it. Hope that helps. Sorry you are going through this.

Angela

[melanie]

I pmed you.Call me!!

When are you seeing Dr J

Melanie

[KeithandElizabeth]

Jodie:

 

I am so sorry you are going through this right now. I have been there so many times before!!

 

My biggest piece of advice, if IVIG did not sustain your son, would be to make an appointment with Dr. Jones in Connecticut and do the IGENEX lyme test as well as the c3d circulating immune complexes tests. I would make the appointment ASAP because these lyme doctors are booking out several months in advance. You can always cancel the appointment if you need to.

 

Again, I know of so many families who do not post and who have recently discovered that their child has lyme disease and/or one of its co-infections. Being on the right combination of antibiotics is key to lyme treatment. If you ever get on some of the lyme forums, you would notice that many of these kids sound exactly like PANDAS children in terms of their symptoms. They have TICs, OCD, hair pulling, etc.....

 

And the lyme treatment has usually helped most of these children. As Dr. Jones says, these kids get better and are far easier to treat than many adults who have lyme disease.

 

Elizabeth

[sf_mom]

Jodie: The additional homeopathic remedies could have also added to a potential herxing response. There has been a lot of variables added most recently and you really need to hang tight.

 

As you know, I concur with everything Elizabeth said but would add the Stricker CD57 to the list of tests (you can google for exact test name). AND whatever you do.... DO NOT ADD STEROIDS to the mix until you rule out LYME completely.

 

-Wendy

Edited August 3, 2010 by SF Mom

[lynn]

I have used Olive leaf extract in the past to great effect, however, I have heard from several sources that it cannot be used

with antibiotics because it makes them ineffective.

[sptcmom]

Thanks so very very very very much everybody for your invaluable thoughts and info. Ds has leg pains today and a belly ache, woke up early and is coughing. I just put him back to sleep. Will call Dr Jones again today and beg.

Doing Igenex today or friday.

Edited August 4, 2010 by sptcmom