DS Sinking into the couch & we wait

[T_Anna]

DS (14.5) was diagnosed November 28, 2012. He probably had PANDAS for at least a year if not many years. He was always anxious and rigid in his likes/dislikes. In late October we started working with a CBT specialist a few times a week. At the time DS was praying so much that he would miss classes, showering for 1-2 hours and generally take forever to get anywhere. Working with the CBT therapist helped limit the praying and shortened the shower, but then going to the bathroom got so long that a few times he got stuck in OCD and stayed in the bathroom 8, 10 and even 19 hours. We met with Dr. Trifiletti and DS tested positive for Mycoplasma, CoxSackie and Strep. He has been on Augmentin, Valtrex, Biaxin, Predisone, Clindomycin, Doxycyclin.Rifampin. When he goes off the meds he tends to spiral further down, but the meds have not really improved anything. According to his blood work, the Strep kept rising through all the antibiotics.

 

Now he doesn't do ANY OCD stuff. He just lays on the couch, sleeps & sometimes cries. He hasn't been to school in 3 weeks and we have stopped the CBT.

 

Last week Dr. T said that we should try IVIG. We agreed to pay out of pocket and were supposed to get it done this week. DS caught Strep from his siblings on Friday and is being treated for it, although he still complains that his throat hurts. It's ironic since Thursday was the first time he showered and left the house in 2 weeks : (.

 

My question, is it normal to feel like you're being hug out to dry while you wait for the drs. to call you back?

 

Is there hope that DS will come out of this? He was so much better before we started CBT or treating the PANDAS, is it just a coincidence that my house of cards started to tumble all at once?

 

Any thoughts, advice, kick in the ___ is appreciated.

T.Anna

DS 14.5

[lfran]

Sent you a PM

 

DS (14.5) was diagnosed November 28, 2012. He probably had PANDAS for at least a year if not many years. He was always anxious and rigid in his likes/dislikes. In late October we started working with a CBT specialist a few times a week. At the time DS was praying so much that he would miss classes, showering for 1-2 hours and generally take forever to get anywhere. Working with the CBT therapist helped limit the praying and shortened the shower, but then going to the bathroom got so long that a few times he got stuck in OCD and stayed in the bathroom 8, 10 and even 19 hours. We met with Dr. Trifiletti and DS tested positive for Mycoplasma, CoxSackie and Strep. He has been on Augmentin, Valtrex, Biaxin, Predisone, Clindomycin, Doxycyclin.Rifampin. When he goes off the meds he tends to spiral further down, but the meds have not really improved anything. According to his blood work, the Strep kept rising through all the antibiotics.

 

Now he doesn't do ANY OCD stuff. He just lays on the couch, sleeps & sometimes cries. He hasn't been to school in 3 weeks and we have stopped the CBT.

 

Last week Dr. T said that we should try IVIG. We agreed to pay out of pocket and were supposed to get it done this week. DS caught Strep from his siblings on Friday and is being treated for it, although he still complains that his throat hurts. It's ironic since Thursday was the first time he showered and left the house in 2 weeks : (.

 

My question, is it normal to feel like you're being hug out to dry while you wait for the drs. to call you back?

 

Is there hope that DS will come out of this? He was so much better before we started CBT or treating the PANDAS, is it just a coincidence that my house of cards started to tumble all at once?

 

Any thoughts, advice, kick in the ___ is appreciated.

T.Anna

DS 14.5

[Dedee]

So you say he is positive for Mycoplasma? Looks like you have a long list of antibiotics and Myco should be covered. However, different kids react differently. He could be having a herx and that is why he is worse. My daughter also has Myco and we fought it for nearly two years before we gave in and found an LLMD. No one knows Myco like the LLMD's. We have been on two different combo antibiotics and she is doing so much better. We work diligently on preventing yeast and on excreting toxins. One of the best supplements I have tried is acetyl glutathione. We started this a few weeks ago and it has made a big difference for my daughter. I know that Dr. T is an excellent physician. I am in awe of his dedication to the PANS community. However, the LLMD is the best for treating Myco and you may want to look into the possibility of lyme in your son. IVIG can be very helpful, but in the presence of active infection it doesn't always give the best results. Best of luck.

 

Dedee

[mdmom]

I agree with Deedee...it would probably benefit your son to find an LLMD. LLMDs are very good at dealing with all sorts of infections.

 

I wish I could tell you otherwise, but healing from PANS/PANDAS is a long road. We started treating our son at age 13 in Nov 2010. He did not start showing much progress until about 1 year later after treating infections aggressively.

 

I have to keep reminding myself that he did not get sick overnight or from one thing, so he will not get well overnight. We have treated (despite mostly negative test results) for Lyme, Babesia, Bartonella, Mycoplasma, Strep, viruses, yeast. We have addressed detox and genetic mutations for MTHFR.

 

This is a long process. Keep digging for answers. Dr. T is great but it might behoove you to start buildig a team of docs to help your son.

 

Best of luck.

[cobbiemommy]

H*** yes, you feel like you are hung out to dry while you wait. We are in the waiting game because insurance decided to play nasty with us after originally approving our son because of immune deficiency they have denied all claims and doc will go no further without getting paid. Imagine that...

 

Hang in there.

[T_Anna]

Well, I became a pest and will talk to the Dr. this evening.

 

How do you find out about MTHFR? Is that also a blood test?

 

It's disturbing that this tailspin coincided when we started to treat the OCD and then PANDAS. I do think that it probably was impacted by the Flu vaccine last year and then again in October (before we knew anything about PANDAS).

 

I'm worried now that the IVIG will be a waste of time/money, what will I do if that fails? How will I know? Last blood test only showed higher #s for Strep, does that mean Myco is still hanging around even if numbers go down?

 

I sound like a lunatic to people when they hear that I'm allowing him to stay at home and not go to school/appointments...how can I explain that when we mention taking a shower, he starts to cry for 30-45 minutes?

 

Thanks again.

T.Anna

DS14.5

[LNN]

You have tried so many antibiotics in such a short time, I wonder if you were on any of them long enough - or if perhaps a combo would work better than one at a time.

 

No parent can ever tell you with certainty what to do. Some have amazing improvement with IVIG, some see a worsening. I just wonder if you've explored everything else and if it isn't worth asking more questions, retesting to make sure the mycoplasma is gone, before you pay out of pocket for IVIG. There's an awful lot of treatments and doctor's visits you may not be able to afford if you try IVIG prematurely, without first making sure there's no chronic issue that's just going to undo any gains you'd get from just one IVIG.

 

I have to agree with DeeDee and mdmom - we too had additional issues beyond strep and only saw lasting gains once those issues were fixed.

[T_Anna]

LLM, you guys have a very valid point, that maybe there was a abx in the mix that was helping and needed more time. I came home from work and DS was very animated. He had taken his probiotics on time and was in a great mood. It's unclear if it's as a result of the steroid burst (today was Day 5) or the Doxycycline. The Doxycycline seemed to be helping a bit last week when DS took a shower (first in 12 days at that point) and went out the next day to visit a friend and even debated staying overnight (crazy since he hadn't slept in his own bed in 2 weeks). Unfortunately, Friday he had caught strep from his siblings (grandmother too) and we were back to a regression. Spoke to Dr.T and we will continue the Doxycycline another 10 days. I also have a steroid taper that I can add if I see it wasn't the Doxycycline. In the meantime we will also work on the paperwork for IVIG and decide over weekend whether we push it off or pursue. We have hopes that the Doxycycline may help. Dr.T also suggested another blood test and I would ask to add the thyroid and other tests mentioned.

 

We had tried Biaxin and Valtrex and they didn't improve anything (we weren't in such an avoidance place either), but when he went off he would regress. What does that mean?

 

As always, THANKS!

 

Don't know what I'd do without all your wise suggestions and insight.

 

T.Anna

DS 14.6 - who wants to go to the family superbowl party, will be interesting if that happens : /

[ptcgirl]

Your son sounds a lot like my child did preIVIG last year. She was in a very deep, dark depressing place with OCD. I was seriously worried that she would kill herself and wondered how long I would get to have my child. The first and biggest improvement after IVIG for her was mood. She became HAPPY again. The tears stopped. We still had battles for the next 9 months but the mood has stayed consistently better and that really helps. She became social again and wanted to live. She had Lyme prior to IVIG and was treated for it (still showing negative now). Herxed majorly -- sounds a lot like what your kid went through. I would absolutely get a good Lyme dr. We see Dr. Jones. Also, yeast (candida) became a big player in our world. I HIGHLY recommend that any child taking as many abx as mine, yours, or just about any kid from this forum, get tested for cadida. It caused a significant flare for mine.

Good luck! I hope he feels better soon. Please let him know he isn't alone in all of this. Neither are you. : )