Another phone consult w/Dr.B

[beeskneesmommy]

Our son continues to recover with Dr. B's abx protocol. We spoke yesterday. I have phone conferences with him every 4 weeks and he seems to feel that we are on our way, very pleased with my son's progress. We are so blessed after such a long and frightening roller coaster of a journey. I learned of Dr. B thru this forum. Our son has been restored to us for several months now. Every day is a gift. The winter will be a telling test for us, as this is when the big gun bugs come rolling in. I send all good thoughts and healing wishes to you - please send the same to us. Thank you, Kath

[kimballot]

So happy to hear you are moving forward. Here's hoping for health in the winter months — for your family and all of our families!

 

Best Wishes!

[JAG10]

Take this for what it's worth, my opinion/observation, but I have found this time of year to be worst. Actually mid August through mid October is when my dd's get exposed to strep and then a few viruses in succession, at least for the past two years. They are older than your little guy. The little ones do seem to be sick all winter long. We have three little cousins that are in the 3-5 y o range and I call them the germ factory.

 

If you are of the philosophy that your goal is remission rather than cure (maybe goal isn't the right word, but that it is what it is) some periodic treatment clean-up is what I think my girls need mid to late Oct. For my kids, not big allergy girls, these months are the hardest of the whole year.

 

I'm glad your phone consults are valuable. We see the same doc and I conference with him after my older dd's treatment next week. My dh and I take turn taking off work to take her to CT, so I haven't spoken to him directly since June.

 

Best wishes and fingers crossed on continued health.

[dcmom]

Jag- I think our hardest time of the year is Dec thru March, although last year my girls got strep in mid April.

 

We are of the philosophy of "remission" and "management". Is that what Dr B seems to think also? What treatment do you use for the "periodic clean-up"- I am in total agreement with this. We have lots of times (well 2-3, times 2 kids) seen them have an increase in issues, although still generally good, stay at this level for a month plus, and then have a drastic increase overnight. So many times during these minor increases, I am too nervous to "rock the boat" so we just deal with it. This year we are trying to be more proactive- so I may jump on those mild increases if they go for longer than a week.

 

I am assuming you do IVIG? Do you see a "worse before better" with these clean-up ivigs- that is always what stops us.

 

Thinking of seeing Dr B- we're in NJ, so it would be easy- just hate dragging the kids to docs when they are well.

[beeskneesmommy]

Actually, in our case, Dr. B is of the opinion of full recovery. We are purposely not isolating him from other kids and illnesses. The idea is to fully suppress the genes that cause the autoimmune response over time with the long term abx that, in our case, hit the spot.

[JAG10]

dcmom,

 

I think Bees is right, Dr. B believes in or is at least aiming for full recovery; but basically I think he wants kids happy, healthy and symptom-free. Our dds are the same ages; 8 and 11 (soon to be 12.) My older girl went misdiagnosed and therefore improperly treated from preschool age to ten years old. We have been treating her for 19 months now with real, genuine progress. Initially in treatment, we saw some worse before better, but not anymore. Actually, because Dr. B uses the 6 days of prednisone at the time of IVIG, we see her 100% immediately following ivig. I think (my opinion) it is the combination of IVIG mopping up the mess and the steroids temporarily turning off the immune faucet. She has never done the steroid taper that lasts weeks and I think she was too sick for that to work when she first began treatment. This time (next week), we are pursuing IV steroids with IVIG and then I will speak to Dr. B about tapering the steroids from there.

 

So while we can get her "in remission", we have not yet been able to get her to a point where she is not reacting to immune challenges and she still slides back to 90% and stays there after a couple weeks (which is why I think 100% is tied to steroids.) That said her reactions are not nearly what they used to be. But I can see, particularly this time of year, the succession of challenges (albeit different sources-strep, viral, teeth), the succession is BAD bcs the reaction to the last challenge in the series was more than the first. I think succession is bad (my opinion again.) If we can get her to a point where she is 95-100% symptom free, but needs a 'clean-up' treatment after back-to-back immune challenges, I could live with that. Hopefully, that sets the stage for her immune system to "outgrow" that over-reaction and her brain to replace undesirable cognitive or muscle memories that were learned when sick.

 

Jill

[NMom]

Bees - Do you mind me asking what Dr. B's abx protocol is for your child? I'm considering heading to see him next as I think we need to do some more testing to understand what else might be lurking under the surface.

[beeskneesmommy]

Thank you Kimballot - some times a mom needs some kind words and support - just what I asked for! NMom, I will PM you. So glad that you are going to see Dr. B and I hope that you see the same type of recovery that we have! -Kath

[hugs2day]

Does Dr. B agree that teeth cause PANDAS symptoms? I just paid a fortune to see a DAN doc that was recommeded as a top doc treating PANDAS in children with autism and he told me, PANDAS is not related to teeth. I beg to differ though because AlL of the bad episodes my son had occurred concurrently with loss of baby teeth. too conicidental. It is a trigger for him. I am on the west coast and cannot afford to travel to see Dr.B wish I could. Please share if you can. Thank you.

[philamom]

Does Dr. B agree that teeth cause PANDAS symptoms? I just paid a fortune to see a DAN doc that was recommeded as a top doc treating PANDAS in children with autism and he told me, PANDAS is not related to teeth. I beg to differ though because AlL of the bad episodes my son had occurred concurrently with loss of baby teeth. too conicidental. It is a trigger for him. I am on the west coast and cannot afford to travel to see Dr.B wish I could. Please share if you can. Thank you.

This is an issue for us. My daughter reacts to losing teeth and cleanings. When my dd was on a preventive dose of abx, he increased it for a few days before and after a dental procedure.

[philamom]

Wishing you continued success Beesknees! Yay!!

[JAG10]

I never discussed teeth with Dr B, but Alex's DS has had major flares related to teeth/infection. When my dd was seeing Dr K wrote us a note for the dentist that she needed to be on abx two before and two days after all cleanings. So, perhaps it just hasn't been the experience of your DAN! doc yet.

Edited October 21, 2011 by JAG10

[beeskneesmommy]

This has never been a topic of discussion between Dr. B. and me. I have no idea what his thoughts are regarding tooth issues.

[JJMom39]

Bees, I am so happy for your son's continued progress. Sending good thoughts for continued health and healing!!

[nicklemama]

My DS has problems w/ teeth cleaning and losses. Dr K recommends treatment dose abx two days before and three days after any dental procedure (I just looked at his note). DS had his teeth cleaned a few weeks ago and we did not see any flares afterward. This is post IVIG. He was on treatment dose in the spring, before abx, and he had flares w/ both teeth cleaning and an extraction of a baby tooth. No explanation for the better experience this time, other than he's post IVIG.