Jump to content
ACN Latitudes Forums

Saw Dr.B. Today, confused


Recommended Posts

We saw Dr. B. Today for my dd 7 and twin ds 3.5. This may be long, sorry. We waited over an hour and half and he seemed very busy. I sort of feel like things were overlooked. I love him, don't get me wrong. She got strep on Augmentin so he said it was an Augmentin resistant strep strain and changed her to azith 250/day. She is 48lbs. Said it would be good to get her tonsils out, but didn't sound adamant. And I brought up IVIG.....we had talked about it in the passed, kind of thought that was what today's visit was for. Anyway, told me to call To check on precert and we would get her scheduled. Both twin boys were there too. He saw them. Changed everyone to azith and wants us back in 4-6 weeks. My dh is a little frustrated and both abx and IVIG scare him. He isn't fully onboard yet. Long term abx scares me MUCH more than IVIG. Spoke with my pharmacist today and she agrees. It also is quality of life. So what would come first IVIG or tonsillectomy? He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out. So many of us struggle with the questions....any insight is so greatly appreciated.

 

The all also have GERD and weight gain (lack of) issues. Antibiotics do not help this.

 

Her IgG p41band for Lyme was positive and he didn't warrant any additional testing....unless she was symptomatic.

..aren't they all the same symptoms??

Edited by JenniferG
Link to comment
Share on other sites

Just a comment on the use of LT ABX- I have felt the same way, very unsure about how safe this is. My pediatrician assures me that there are other illnesses that children need to use prophylaxis ABX, such as cystic fibrosis. Every appt with him, he makes me feel better about them, reminding me that this disease affects her brain. PANDAS is as serious as many other illnesses requiring daily ABX. ABX have worked for my daughter for almost 2 yrs. I am wondering if she needs a switch from Augmentin, as some backsliding is occurring with her currently.

 

We see Dr B again on MOnday. Never had an experience of having to wait more than a few minutes for him, and this will be our 5th or 6th appt. Wondering about your 3.5 year old boys. Are they having obvious symptoms? My 4 yr old is so on the fence, with some PANDA-like behaviors that are questionable as just being personality or growing up in a house and modeling behaviors that are like our definite "PANDAS" daughter, who is 6 1/2 years old. He's treated our little one before on trials of ABX, is that what your doing with your boys? Our 4yr old's only odd lab, was a high cd3, the autoimmune marker. She does not have the strep history, as our older daughter does. Love to know the situation with your younger kids. My pediatrician feels this is a big strech to say our youngest has PANDAS (and our pediatrician is a believer). He just feels-in his own analogy, that when your a hammer (Dr B) then everything looks like a nail. I wish this were more back and white, a more definitive yes/no test for PANDAS. All I know is that I wonder every day if both my girls have this illness. We seem to have a family history (my Dad, myself & my sister). I do believe there must be a higher rate within siblings.

 

PM me if your more comfortable rsponding that way.

 

Amy

Link to comment
Share on other sites

He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out.

 

 

so how does that fit with Swedo's original concept that if IVIG was going to help, it would on the first? or is that now seen as old research and not the current thought?

thanks.

Link to comment
Share on other sites

It didn't put that when I typed it-how come? Jill, I wondered why in your PM to me you did that). Certainly was not my intention! Dr. "cool shades" should read Dr. B

 

I, too, found this out by accident.

If you pull down the bar for the emoticons on the right, you will see capital B then ) is code for the cool shades smiley.

 

Hey...could be worse......I'm sure he would rather be Dr. Cool Shades than "huh", "wacko" or "blink" right???

Link to comment
Share on other sites

He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out.

 

 

so how does that fit with Swedo's original concept that if IVIG was going to help, it would on the first? or is that now seen as old research and not the current thought?

thanks.

As of last year, she was saying that if it was Pandas, then only one IVIG should be needed. However, I think her definition of success - and this is only my understanding- is something like 75-80% improvement after 3 months. She indicated that IVIG should end an episode but doesn't prevent future episodes. I got the impression she didn't feel multiple IVIGs could achieve this.

 

My understanding is that Dr B disagrees and is using multiple IVIGs in the hopes of preventing future episodes, or closer to what we would call a "cure". But others may have better insight.

Link to comment
Share on other sites

I will second what LLM has said about Swedo's opinion, I heard that directly from Swedo to me this past Fall (when I was thinking about IVIG).

 

Doesn't make it fact- but is info that certainly should be out there.

Edited by dcmom
Link to comment
Share on other sites

He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out.

 

 

so how does that fit with Swedo's original concept that if IVIG was going to help, it would on the first? or is that now seen as old research and not the current thought?

thanks.

As of last year, she was saying that if it was Pandas, then only one IVIG should be needed. However, I think her definition of success - and this is only my understanding- is something like 75-80% improvement after 3 months. She indicated that IVIG should end an episode but doesn't prevent future episodes. I got the impression she didn't feel multiple IVIGs could achieve this.

 

My understanding is that Dr B disagrees and is using multiple IVIGs in the hopes of preventing future episodes, or closer to what we would call a "cure". But others may have better insight.

 

Yes..that was exactly my understanding. To Swedo (and probably Dr. K.) the 1 IVIG is enough was based on improvement of a certain amount (70%) over a period of time. By OCD treatment standards (compared to meds, cbt) 70% better that would be considered a very successful treatment.

 

I think Dr. B. (and many parents) has different standards (looking at 100% lifelong?) vs. just 70% improvement within the next 3 mo.

Link to comment
Share on other sites

My dermatologist said that she had met many patients who have been on strong antibiotic for acne for years. She doesn't recommend it but lots of dermatologist do it.

 

As for the multiple ivigs, I guess no one is really sure if it was just the first one continuing to heal or multiple ivigs blasting the immune system. We noticed improvement after all of my sons ivigs. However, number 5 was the most dramatic and quickest improvement.

Link to comment
Share on other sites

My dermatologist said that she had met many patients who have been on strong antibiotic for acne for years. She doesn't recommend it but lots of dermatologist do it.

 

As for the multiple ivigs, I guess no one is really sure if it was just the first one continuing to heal or multiple ivigs blasting the immune system. We noticed improvement after all of my sons ivigs. However, number 5 was the most dramatic and quickest improvement.

PhillyPA- are you getting them done locally? How many ivigs has your son had?

Link to comment
Share on other sites

He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out.

 

 

so how does that fit with Swedo's original concept that if IVIG was going to help, it would on the first? or is that now seen as old research and not the current thought?

thanks.

As of last year, she was saying that if it was Pandas, then only one IVIG should be needed. However, I think her definition of success - and this is only my understanding- is something like 75-80% improvement after 3 months. She indicated that IVIG should end an episode but doesn't prevent future episodes. I got the impression she didn't feel multiple IVIGs could achieve this.

 

My understanding is that Dr B disagrees and is using multiple IVIGs in the hopes of preventing future episodes, or closer to what we would call a "cure". But others may have better insight.

 

Yes..that was exactly my understanding. To Swedo (and probably Dr. K.) the 1 IVIG is enough was based on improvement of a certain amount (70%) over a period of time. By OCD treatment standards (compared to meds, cbt) 70% better that would be considered a very successful treatment.

 

I think Dr. B. (and many parents) has different standards (looking at 100% lifelong?) vs. just 70% improvement within the next 3 mo.

 

 

so - i'm missing something in connecting the dots. . . it's not necessarily contradictory viewpoints -- but different in the definition of success? so swedo could have considered one ivig 'successful' with a child being 70% better and then close the book on it....whereas in the same case, dr b would consider that child had further to go and would do more ivig? is there still a contradiction in that she would not think further ivig would make any difference and he believes it will? and is there contradiction in how the immune system reacts in the future?

 

is there some standard in when a child is not doing poorly enough to warrant ivig? has that basically been the parent's call? (i know that sounds ridiculous but do you know what i mean?)

 

i've never been able to grasp something about ivig -- it makes perfect sense to me if you were to go on a regular basis -- it the one, two or even three times that i can't grasp. maybe it's the supplementing antibodies that makes sense and i can't get the shutting down the bone marrow -- ?? and then where does the BBB fit in?

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...