Back from Florida appointment with Dr. M.

[Dedee]

We got back on Tuesday from our 12 hour drive to see Dr. M. She agreed that we weren't getting enough benefit from the Azith cream. We are scheduled to go down for the intensive CBT therapy in July. She wants us to go ahead and start with a CBT program locally to try to get ahead of this before July since my daughter is so severe. She believes the answer lies in getting her to take oral medications. However, after listening to me cry and go on and on about how I couldn't live this way anymore and how I am ready for aggressive treatment, she said she could make a good case for IVIG. I told her my insurance would pay for PEX. She sort of blew that off, and said she would be able to get IVIG approved. Of course, our pediatric neurologist will have to get everything lined up. So as soon as we returned, I faxed Dr. M's letter to his office and then called the office the next day. Wouldn't you know it, he is out of town till Monday! I think I might scream. When he gets back I'm sure he will want to talk to her on the phone and then we will have to make an appointment to come to the office.....OMG, will this thing ever be treated? I am loosing my mind here. I thought I would jump out of a moving car before we ever got to Florida with three kids and one being in an active flare. Is it me or does everything to do with medical care move in slow motion???

[dcmom]

Dedee-

 

Ugh- I am so sorry. It is rare to find a doc who really understands what a crisis this is for the child . The waiting for proper treatment is very cruel.

 

I am not sure why she blew off pex. I would think in your daughter's condition, it would be the best option. PEX works quickly. You would most likely see some results right away, where with IVIG it takes time, and some kids seem to have a rough few weeks before improvement. This is what has always made me nervous about ivig.

 

I would not give up on PEX. Maybe try this approach- find out who (doctor) is in charge of the pheresis depts at all of your area hospitals. Contact them, tell them your story, that your child has a diagnosis of pandas from a doctor from out of town, and that you need for her to get pex. See if they can refer you to a doc that may give you the orders. I tried this route recently, but then went another direction. I did speak with a doc, transfusion specialist, at a local hospital. She told me she would do it- but she needed orders from a pediatric doc. She also told me many hospitals that might not have pheresis depts, have a contract with the red cross to come in and perform pheresis.

 

We have also gotten immediate relief from crisis with IV steroids. Both of my girls did methylprednisolone, 7mg/kg, IV BID, 3 days. You could have this done inpatient, or even at home.

 

Good luck- I, like so many here, have been in your position, and it is beyond comprehension. What is SO hard, is we know what this is, we know what will make it better, yet it is SO hard to get it done. Why must every parent reinvent the wheel?

 

Keep us posted, and hang on to the fact that she WILL get better,

[kimballot]

We got back on Tuesday from our 12 hour drive to see Dr. M. She agreed that we weren't getting enough benefit from the Azith cream. We are scheduled to go down for the intensive CBT therapy in July. She wants us to go ahead and start with a CBT program locally to try to get ahead of this before July since my daughter is so severe. She believes the answer lies in getting her to take oral medications. However, after listening to me cry and go on and on about how I couldn't live this way anymore and how I am ready for aggressive treatment, she said she could make a good case for IVIG. I told her my insurance would pay for PEX. She sort of blew that off, and said she would be able to get IVIG approved. Of course, our pediatric neurologist will have to get everything lined up. So as soon as we returned, I faxed Dr. M's letter to his office and then called the office the next day. Wouldn't you know it, he is out of town till Monday! I think I might scream. When he gets back I'm sure he will want to talk to her on the phone and then we will have to make an appointment to come to the office.....OMG, will this thing ever be treated? I am loosing my mind here. I thought I would jump out of a moving car before we ever got to Florida with three kids and one being in an active flare. Is it me or does everything to do with medical care move in slow motion???

 

Could you tell us more about what is involved in the intensive CBT therapy in Florida? I am wondering if anyone else reading this has done this program. If anyone has experience with this program, please send me a PM. Thanks

[LNN]

Since I think I recall your DD has an active, chronic myco infection, I would hesitate to do IV steroids. But do you think Dr M might be willing to speak with Dr L in MD and see if there were a way the two could work together to arrange Pex at Georgetown? I suspect Dr M may feel it's too aggressive for her taste, it's possible Dr L may be able to address her concerns. As an alternative (just brainstorming) - is there a local infusion center what would accept Dr M's orders and allow you to bypass the need to work thru the local neuro?

[mommakath]

We have done intensive therapy with Dr. Storch there at USF and when he was at UF on both our kids. Hard thing about therapy is they have to be well enough to do exposures. For our ds12, it was a miracle. It allowed her to cope with the OCD symptoms and is a life lond skill that she will use over and over again in her life...even in non-OCD situations. It gave her confidence that she can cope. Our son, they never could duplicate the anxiety so we did not benifit as much. LOVE Dr. Storch and his groupies!! ERP/CBT with this fab team will not be a waste. I trust Dr. M felt she is not too anxious to benefit.

 

We did IVIG 2 weeks ago and it has been a miracle! One week of my old son back. THis week I see old ways creeping back in but this is normal as it has a cummulative effect the more you do it. My experience with IVIG was wonderful and my son can't wait to get it again! Whe I started the PANDAS / Lyme journey, I said I would never so IVIG. Now, I am so thankful I have.

 

PM me if you wish. Where do u live? May know a PANDAS doc closer for you that us not top name yet!! She works with Dr. M but believes in IVIG as her father has it monthly for other immune disorder.

 

Best wishes!! Katherine

[MIAS_MOM]

The medical process is way to slow moving, hang in there. I'm happy to know you made it back safley. Can you pm me the name of the ped neuro you are using at Childrens? This post gives me some interesting ideas about where we stand.