Falling down on purpose

[mom md]

We are still seeing some weird behavior and are planning to do IVIG this month. The school called today and said my son (age 8 ) fell in a mud puddle and would be coming home VERY dirty. They just wanted to warn me. He was completely covered when I got him with mud and said he fell in a puddle ten times. The teacher then e-mailed me and said this week he has been "falling" out of his chair and to the ground when they a have been walking to other areas. He gets a big laugh from friends and continues to do it despite being told he can't. They have been wonderful dealing with the situation and knew it was out of his control. When I asked him he said there was an imaginary rope attached to his back and it pulled him certain directions and bounced him other directions. He saw a bunge jump segment on the TV a few weeks ago and I wonder if that planted a seed. He started crying and said he could not control it. When I asked him what else his brain was doing he said it has been telling him to do things 123 times. Very sad. I know we will do IVIG this month but we need it ASAP. He is in no way as bad as he was pre-plams exchange but now appears to have more OCD and anxiety than I remember from before. He is sleeping well though so some parts are better. He is still on steroids and has 8 more days of a thirty day taper. We spoke to Latimer yesterday and we are planning to move forward with IVIG. We will start with one and go from there. She warned us it may take a few and even repeating plasma exchange was not completely off the table.

On a side note a mother form our school called with the info that her daughter, age 6, has PANDAS. I feel cases are coming out of the woodwork.

[dcmom]

Mommd- I have really nothing to add, except that I am so sorry for you and your son. The ocd stuff is so hard. I have seen my daughter counting here and there, and am a little nervous. She has been off of the steroid for a week. It's a really good thing that he is sleeping, though- when they don't sleep and then are so tired, it just makes everything so much worse..

 

Is Dr Latimer suggesting IVIG? What does she think of the relapse?

 

We are seeing her tomorrow...

 

Keep us posted!

[mom md]

She was still very positive that this could be treated but felt that we still do not know what recipe will finally cure these kids. She also said each child is different. Some need antibotics alone and some need PEX and IVIG. She said she would also still leave repeat PEX on the table in the future if needed. She seemed eager and willing to follow this through till we were cured but said it may not be as simple as we thought. We all agree though he is a 4-5 on a scale and pre-PEX he was a 8-9 on a scale. Maybe we are just sweeping up the leftovers? I think the movements thoough are somewhat easier to digest though than the OCD.

[kim]

mommd,

 

back in the old days some of us discussed this falling down thing. I don't remember OCD connected to it, but who knows. It was just viewed as silly behavior here. I remember my son would act sort of drunken, roll his eyes and just fall on the floor, or walk into a door and act like he knocked himself out. It seemed unusual, but was one of those things that was hard to sort out from "normal" 9 (?) year old goofiness. It sounds like your sons is more extreme than what I saw, but thought I would just let you know that it has been discussed in the past. Don't let him watch any of the old 3 stooges episodes! As you mentioned the bungy jumping episode, I blamed that stupid show.

[T_Mom]

MomMD I am so sorry -- He is fortunate to have you and Dr L on his side. Take care--

[thereishope]

I find this interesting. I remember at some point thinking my son liked doing prat falls (that's what they're called right?) for attention or because he didn't know how to handle or react to a situation and the prat fall was his way of coping so the focus would change.

 

He didn't do this when he was at his worst, but did happen during some point of PANDAS.

[Worried_Dad]

Wow - this is eerie.

 

My son was originally diagnosed with ARF / SC, and we spent a lot of time on the WeMOVE Sydenham's Chorea forum. Back then, our son would regularly collapse to the floor (after walking drunkenly or sliding out of a chair) and say he could not move / control his muscles. It was episodic - often just came out of the blue.

 

We thought this was an utterly bizarre, unique symptom until a bunch of other folks on the SC forum described the exact same thing. They called it the "rag-doll effect."

 

Man, the PANDAS-SC spectrum is freaky!!!

[mom md]

Very eerie. Carter was origionally in the SC range and given that diagnosis. He was in the SC range on Cunningham's study too. Very strange. Just when you think you are starting to get a handle on what to expect.

[FallingApart]

Mommd, I can't answer the falling compulsion one, but I wanted to chime in with our story too. We also did PEX at Georgetown at the beg of Nov. I don't know how, but DH and I feel that we are the one family that actually saw detrimental results from the procedure. When we returned home, the only benefit DD saw was her ability to draw had improved. We waited 12 days and when it was clear that she continued to decline, we moved forward with IVIG.

 

During this time we met with an immuno doc. He agreed with what we were doing and also said that he felt that DD's issues might have been at the cellular level which is why PEX didn' help her. He feels we will need to do monthly IVIG for the forseeable future. When I asked him to define that he said 1-3-5 years. He did say he felt that the disease would likely die out on its own.

 

WHen you say you have more OCD and anxiety than before, I know exactly what you mean. We had that too after returning from PEX. Has the steroid burst helped you? We did not see any benefit from our steroid burst. We did the IVIG 3 weeks ago today and it took a full 2 weeks to start to see any improvement. DH and I were just about to call the IVIG a failure as well when suddenly something changed. DD is still not fabulous, but has definitely improved. And now we go back for our next infusion in one week.

 

I know that the time of waiting for the IVIG is excruciating. I wish there was something I could do to help. I am hopeful you will be able to get in very quickly to do it!

[KeithandElizabeth]

Our immunologist said very similar things. We have done 4 monthly IVIG's and we see a little set back each time, but each set back is less dramatic than the previous time. The immunologist described the healing process as and up and down chart (looks like an EKG chart) and he said the downs should be less and less low and eventually we wouldn't see the downs.

 

Elizabeth

[mom md]

Thanks everyone for their thoughts. I contacted Latimer and she said she had seen the falling down things before. I guess that makes me feel better? I think we will be able to set up the IVIG for the next week or two. I know it may be something we need monthly. The immunologist even mentioned doing it subcutaneously at home each week. There is not a lot of PANDAS data on it (in fact there is none) but she said you tend to get a better steady state level which is good. It is a weekly infusion that takes 1 1/2 hours and is done at home. I think they want to do the first several in an infusion center but that may be on the horizon too. I think the only issue in kids is you need some belly fat or thigh fat to inject the pump in and my son does not have much.

We see the immunologist next week which is good. i will keep everyone posted.

[mom md]

We were actually almost 100% immediately after PEX but we had IV steroids in the hospital We had a perfect 4 months before he relapsed. He responded very well to steroids and was better in 4 days. Afterstopping the steroids he relapsed again. We are on the last week of a 30 day taper but we have not had the benefit if any that we saw before. I have nothing to back anything of this on but I wonder if we are somewhat improved from the PEX but just not back to baseline. I know most people have anxiety and OCD as the big issue and then often the tics and movement issues come later. I wonder if we are better but just now seeing more OCD/anxiety. In some ways the movementsa are easier to digest. This psychiatric stuff is very upsetting to watch. I think the problem is cellular in the sense that his T cells make strep antibodies when under any form of strep. It is like a broken record. I thing the IVIG will help reset this. We have no idea if insurance will pay and the thought of paying for it monthly for several years is unimaginable but we will do what we have to. He does notfit in a nice, neat category and I don't know if they will pay but they did pay for the PEX. Do you know how yours was covered? Also, you may want to ask his opinion on the IVIG subcutaneous injections. Also, where do you live and who do you see if my immunologist wants to talk to someone?

Thanks,

Claire

Mommd, I can't answer the falling compulsion one, but I wanted to chime in with our story too. We also did PEX at Georgetown at the beg of Nov. I don't know how, but DH and I feel that we are the one family that actually saw detrimental results from the procedure. When we returned home, the only benefit DD saw was her ability to draw had improved. We waited 12 days and when it was clear that she continued to decline, we moved forward with IVIG.

 

During this time we met with an immuno doc. He agreed with what we were doing and also said that he felt that DD's issues might have been at the cellular level which is why PEX didn' help her. He feels we will need to do monthly IVIG for the forseeable future. When I asked him to define that he said 1-3-5 years. He did say he felt that the disease would likely die out on its own.

 

WHen you say you have more OCD and anxiety than before, I know exactly what you mean. We had that too after returning from PEX. Has the steroid burst helped you? We did not see any benefit from our steroid burst. We did the IVIG 3 weeks ago today and it took a full 2 weeks to start to see any improvement. DH and I were just about to call the IVIG a failure as well when suddenly something changed. DD is still not fabulous, but has definitely improved. And now we go back for our next infusion in one week.

 

I know that the time of waiting for the IVIG is excruciating. I wish there was something I could do to help. I am hopeful you will be able to get in very quickly to do it!

[nevergiveup]

Claire,

 

I know after PEX his cam kinase was at 99 if I remember correctly, and before the PEX he had very high strep titers I believe ASO? Has his titers and Cam been retested recently. If this is caused by antibodies, does he have them again? Anyway, what about Bouboulis since your son has a very high ANA (I remember 1:640 ). I know with CVID there is an autoimmune component. He apparently has a different way of looking at these kids. My dd gets monthly IVIG now for CVID. She too has a very high ANA low C4 and finally low IGGs and IGMs. She had chronic infection for years but didn't have the low IGGs until 10 years old. Her Pandas symptoms started when she was 7 years old when her ANA was 1: 2560. Her IGGs were normal at that time. Not anymore. Anyway what about Bouboulis? What has he said. He seems to really get it, he gives monthly doses which are high for the autoimmune component. Also I wanted to mention that Swedo's SC study showed the best improv for SC was seen by the IVIG grp, where with PANDAS it seemed PEX had more benefit. If I remember the studies correctly. You cannot keep having the infusions at GT center too expensive. After an initial dose, a home nurse is much cheaper.

I would rerun the IGGs again, especially after a month of steriods they will be lower.

[bronxmom2]

My son did the falling-down thing.

 

We thought he was just being annoying.

 

Poor thing.

[FallingApart]

I agree the psychiatric stuff is torturous to watch.

 

We live in Seattle and oue immuno is Dr Torgerson at Seattle Children's. That said, he and SCH do not believe in PANDAS. However, I told him that I wasn't concerned with the title that he gave her disease, just that he helped us. He was very kind and very knowledgeable. After the appt, I felt we were on the same page and calling her diagnosis 2 diff things but still talking about the same thing. Please let me know if I can help.

 

We were actually almost 100% immediately after PEX but we had IV steroids in the hospital We had a perfect 4 months before he relapsed. He responded very well to steroids and was better in 4 days. Afterstopping the steroids he relapsed again. We are on the last week of a 30 day taper but we have not had the benefit if any that we saw before. I have nothing to back anything of this on but I wonder if we are somewhat improved from the PEX but just not back to baseline. I know most people have anxiety and OCD as the big issue and then often the tics and movement issues come later. I wonder if we are better but just now seeing more OCD/anxiety. In some ways the movementsa are easier to digest. This psychiatric stuff is very upsetting to watch. I think the problem is cellular in the sense that his T cells make strep antibodies when under any form of strep. It is like a broken record. I thing the IVIG will help reset this. We have no idea if insurance will pay and the thought of paying for it monthly for several years is unimaginable but we will do what we have to. He does notfit in a nice, neat category and I don't know if they will pay but they did pay for the PEX. Do you know how yours was covered? Also, you may want to ask his opinion on the IVIG subcutaneous injections. Also, where do you live and who do you see if my immunologist wants to talk to someone?

Thanks,

Claire

Mommd, I can't answer the falling compulsion one, but I wanted to chime in with our story too. We also did PEX at Georgetown at the beg of Nov. I don't know how, but DH and I feel that we are the one family that actually saw detrimental results from the procedure. When we returned home, the only benefit DD saw was her ability to draw had improved. We waited 12 days and when it was clear that she continued to decline, we moved forward with IVIG.

 

During this time we met with an immuno doc. He agreed with what we were doing and also said that he felt that DD's issues might have been at the cellular level which is why PEX didn' help her. He feels we will need to do monthly IVIG for the forseeable future. When I asked him to define that he said 1-3-5 years. He did say he felt that the disease would likely die out on its own.

 

WHen you say you have more OCD and anxiety than before, I know exactly what you mean. We had that too after returning from PEX. Has the steroid burst helped you? We did not see any benefit from our steroid burst. We did the IVIG 3 weeks ago today and it took a full 2 weeks to start to see any improvement. DH and I were just about to call the IVIG a failure as well when suddenly something changed. DD is still not fabulous, but has definitely improved. And now we go back for our next infusion in one week.

 

I know that the time of waiting for the IVIG is excruciating. I wish there was something I could do to help. I am hopeful you will be able to get in very quickly to do it!