Back from my Drs. Appointment

[Dedee]

We finally made it back from our long trip to Florida to see Dr. Murphy. Things went pretty well overall. My daughter would not cooperate for any of the assessment. In fact , I think the ones who did her OT and PT evaluation think she was learning disabled because she wouldn’t give a verbal response to any of their questions. She only sat on my lap with her head in my shoulder. Of course, that is typical behavior for her, but doesn’t mean she can’t communicate only that she is afraid of strangers (putting it mildy). The exam that Dr. Murphy did was only a little better. She wouldn’t get off my lap, so she could only do what could be done there. She said she got plenty of information though. I thought it was a worthwhile visit. Dr. M. reviewed all the labs we currently had and wanted to order more. She talked about whether or not IVIG or attempting antibiotics would be better for her. She recognized the problem we have with my daughter refusing to take any medications by mouth. Dr. M. isn’t big on injectable antibiotics because it doesn’t keep the levels as steady as daily dosing. She ordered a list of other labs to be done and said when we get the results of those we may be able to make the case for IVIG. Of course she is still concerned with my dd’s refusal to take medication. Said with her issues she will have to take medications at times. She recommended intense CBT therapy. They have a good program there that she thought she could get us in this summer. It is supposed to be an intense few weeks instead of spreading it out over months. Supposedly this program has good results. Problem is we would have to be away from work and home for nearly a month. Not that a month at the beach in the summer wouldn’t be great, but we just don’t have money available to rent someplace. I think my husband and I may be able to split the time away from work, but just financing it seems out of reach. Do any of you do CBT through local providers? Has it been helpful?

 

So we came home with her recommendation letter and went straight to the doctor’s office the next day and had labs drawn. While we were there we had another IV steroid infusion. It had been three weeks since the last one and we stopped seeing improvement when she got sick shortly after the first infusion. I am just looking for some sort of relief right now. Things are just horrible, as all of you know all too well. When I mentioned the steroid treatments to Dr. M. she just said that it was fine short term but only a band-aid till you get the real fix. And of course you can’t do it too many times.

So I guess I am in wait and see mode as we wait for the lab results. They are considering an MRI and are supposed to call this week if they get that set up. Waiting is the worst…………

 

Dedee

[P_Mom]

Dedee,

 

Glad to hear you are headed toward some relief.

 

may I ask....what is the "real fix?"

[SSS]

Hang in there--

I just wanted to mention I get my dd's medications made up at a compounding pharmacy, liquid, dye free/sugar free, but they are flavored strawberry or tutti frutti-

I present it in a syringe to her, with a drink chaser. I squirt them in the back of her mouth. She takes them, but she also knows that I will sit on her and put it in her mouth if I have to :-/

She is swallowing capsules, as well.

Hope things get better soon- PV's---

[thereishope]

Keep us updated. The medicine refusal will hopefully improve over time. I know it's frustrating. It's this whole thought process that they need the meds to get better,but they won't take them until they get better. Is it only for you that she won't take them. When my son refused to take them for me, he took them no problem for my husband a couple times. Otherwise, I had to straddle him and squirt a little at a time in the cheek area. Target store squirters that you get with the prescriptions there are great for that. You can control how much you squirt in their mouth. This way, if they spit it out, at least they are not spitting out the whole dose.

[Dedee]

Yep, I have tried all the tricks on medicine as has my husband. It isn't a taste thing or a control thing. It's an OCD thing. She believes it harms her in some way and throws it up. Somehow we have to improve her thought process and clear the OCD so we can reason with that concept. There is no way to force it or to be gentle. Either way if it goes down, she throws it up. That has been the hardest thing to deal with because the first thing you want to do is start giving medicine. So, I don't know if the CBT would be any true help with this or not. Dr. M. would love to have her on daily antibiotics but she also said that depending on the lab results, IVIG may be indicated. One of those two (or in combination) we hope will be the answer. As you all know, you just try and pray for the best outcome possible. Still trying to decide on the CBT. I'm just not sure if it will be worth the expense in the long run. Thoughts?

 

T.Mom, I got your PM, but couldn't respond. I think your box is full.

[ShannonOtown]

DeDee,

Thanks for the update. I was wondering how your appointment went... hope the labs give you the next clue on which way to proceed. The best part of getting into Dr. Murphy is now you have access to her if you need her for any questions. (A little comfort in the Chaos) Keep us posted.

Shannon

[Joan Pandas Mom]

Dedee, what is the real fix Dr. M was referring to? We went to their 2 week program in 2008 and again in Feb. 2009. They are excellent. We were not on the PANDAS track then, so we unfortunately didn't meet Dr. M. Their CBT and ERP helped relive my son's severe OCD for about a month. I suspect he got reinfected when we returned home and he stopped doing his exposures.

[wornoutmom]

ERP can most definitely help with the medicine fear, and you can start doing it at home if you have the time and energy. I would think the first step would be to find out what she is most afraid of regarding the medicine. Is she afraid of vomitting? Is she afraid it's going to poison her/hurt her? Say it's the poisoning thing. One idea might be to start with her just sitting next to the medicine for a bit. Or if that's not hard, holding it in her hand. You would start with the least invasive thing and work on that repeatedly until it no longer brings on anxiety (gee mom - this is stupid, I'm not scared of sitting next to the box - this is boring). Then move to the next step. I'm imagining a liquid medicine. Can she put a drop on her hand? next step, can she lick one drop? These steps go on over days/weeks depending on level of the anxiety. You don't move on to the next step until the one you are working on seems boring - no longer causes anxiety. Another thing would be for her to witness you and other family members taking this medicine to challenge the OCD thought of poisoning - what is so special about her that this medicine would only poison her, not the rest of your family? ERP worked magic for my son when he was 7. For the big fears, it was a very slow process, but it DID have results . My son was deathly afraid of the refrigerator. We spent days just working on being in the kitchen, and taking one step closer to the fridge. It took weeks to get to the point of being able to touch the outside of it consistently, but eventually after doing this daily, he was able to move on to opening it up and eating things from inside it again. Perhaps it is something you can consider while she is awaiting other treatments.

 

 

Yep, I have tried all the tricks on medicine as has my husband. It isn't a taste thing or a control thing. It's an OCD thing. She believes it harms her in some way and throws it up. Somehow we have to improve her thought process and clear the OCD so we can reason with that concept. There is no way to force it or to be gentle. Either way if it goes down, she throws it up. That has been the hardest thing to deal with because the first thing you want to do is start giving medicine. So, I don't know if the CBT would be any true help with this or not. Dr. M. would love to have her on daily antibiotics but she also said that depending on the lab results, IVIG may be indicated. One of those two (or in combination) we hope will be the answer. As you all know, you just try and pray for the best outcome possible. Still trying to decide on the CBT. I'm just not sure if it will be worth the expense in the long run. Thoughts?

 

T.Mom, I got your PM, but couldn't respond. I think your box is full.