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KLW

How Often to Consult With Doctors for "Success"

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Hi, OK, I know this is an incredibly individual topic, but I would love to know if I'm seeing docs as often as I "should" be. We began seeing Dr. L last May 2015. That was in-person and is an 16 hour round-trip drive. She, of course, accommodates those out-of-state with Facetime appointments, which is awesome. So we had a couple of Facetimes after that and sometime last fall she said it was time to do High Dose IVIg. I chose to seek local support on that given that we have good insurance and my child has documented hypogammaglobulimia, therefore there was no reason to pay mostly out-of-pocket and out-of-town with thousands out-of-pocket for treatment and travel/lodging when I could have it done locally for a $35 copay (yes, I know how fortunate I am). So there were several months of waiting until I found a local doc to play nice with us, then a few months of 1g/kg, then finally the high dose was approved. I'm thankful for the delay, though, as the first lower dose IVIg was rough on him and we needed to figure some things out for support and for his body to acclimate before the high dose, which we ended up doing three over May thru July.

 

I understand that improvements may not be seen for several weeks after a HD infusion. We are at week 11 after the first one done in May right now, so it hasn't even been 12 weeks since the first. I've made an in-person appointment with Dr. L in Oct which is 12 weeks after the THIRD IVIg was administered in July. Not only does this correspond with that timing, but also the conference which I plan to attend. My thought on the timing, though, is that I didn't want to go any earlier than 12 weeks after the last HD IVIg as I didn't want to get up there just to be told, "you haven't given the HD IVIg enough time to tell us if it is going to be helpful or not. I'm not going to recommend anything until we can say enough time has passed."

 

I do have a Facetime scheduled at the end of this month to talk about anything we can do in the interim between now and the Oct appt. In particular, I want to talk about the prospect of either low dose prednisone or prednisone pulsing. He responded beautifully to the one week of pred last year. LDN and fish oil do nothing but cause issues. He actually has two diagnosed conditions where prednisone is indicated as part of the treatment, but no one will even consider putting him on it! That blows my mind. I completely understand the risks, but I also understand risk vs benefits, and this kid has gone far too long without benefits.

 

So, long story to my question - I'm willing to Facetime and see Dr. L. and our local immunologist or the integrative doc in Atlanta we use as often as I need - but there are sometimes when I feel if we went there would be no value added (there would not have been any point of talking to or seeing Dr. L during those months we were waiting for HD IVIg when I knew that her recommendation for next step was HD IVIg).

 

How often do you see your docs? Monthly? Every three months? It seems like every time I see his local immunologist (our IVIg guy), he wants to see us again in three months. Do that four times and a year has passed and nothing has changed. I need ACTION from these people! I've said it before, but he has been sick his whole life and we didn't get a correct dx until he was 12, so I'm over being patient. I need someone to take HIS INDIVIDUAL SITUATION seriously, realize how long he has been sick and that it is going to take the extra mile to treat him. If that means I have to pay out-of-pocket for monthly Facetime appointments that may or may not yield anything just so that Dr. L can REALLY know him and have him on her mind, I'll do it. Is that what it takes in your experiences?

 

 

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We see Dr. L in person when there is a PANS related change. She always takes us right away or emails us back immediately. (3 times a year). Her assistants take care of the meds as needed..

She knows both boys so well, that we sometimes ask a quick question via email and she can point us in the right direction within hours.

 

Our first line is our PANS/PANDAS pediatrician who is a mile away. He checks for infections, prescribes any meds we need on a moments notice, orders any IVIG we need, checks IgG subclass levels (3 times a year not including phone calls).

 

Over the years, it's become easier to know who to contact for what. That helps both us and the doctors stay focused and calm.

 

We've only seen an immunologist once, then ped took over. Integrative Dr. for allergies and gut (3 times)

 

Our boys are 200%+ now, but we met with Dr. L. last week just to check in.

 

We're PANS and hypogammaglobulemia.

 

What helped the most is to realize that getting better takes months/years. While we had improvements in jumps overnight at times, there was a very slow steady line upwards...

 

I guess what I'm saying is that we treat the specialists as specialists and rely on our pediatrician as the first line (who we see the most). However, we can do this because our pediatrician is very very very well versed and experienced with complicated health issues and he works well with other doctors. This allows us to only need to contact specialists for very special issues...We feel that we have been blessed with a good network of support...

 

Hope this helps?

Edited by Gpookie

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