Very disheartened and headed to CHOP today

[tantrums]

My DS7 had a bad reaction to shellfish during vacation and incidentally wound up on prednisone 30mg twice a day. I thought "okay so we're trying a prednisone burst" which we were going to do since I am now considering IVIG. He's on his third ABX and none seem to be effective. They help a little - I see hardly any tics and minimal rages at least, but he is still just a miserable unhappy child who has tantrums that last up to an hour over the littlest thing. He still has obsessive thoughts and seperation anxiety is actually increasing. We are on day 5 of the prednisone and I think he's worse!!! He's like what we referred to as "steroid boy" when he used to take it for chronic croup when he was little, which is what I was afraid of. So if he isn't responding well to prednisone, doesn't that mean the IVIG wouldn't be effective?

 

We happen to have our appointment with Dr. Finkle today at CHOP. I'm so disheartened I don't even know why we are going at this point. What am I hoping for? I'm starting to think we're at the best point we're going to be and this is going to be our lives from now on

 

He woke up SOAKED this morning, I mean his HAIR was wet from wetting the bed despite getting up twice in the night to pee. He was crying and miserable bc he had done it, yet refuses to shower as of yet. He says he is starving but refuses to eat unless I give him gluten (WTF??). He agreed to an egg, but it wasn't ROUND enough so he pitched a fit over it. He's now drawing his 7th or 8th birthday card for a friend whose birthday is in OCTOBER! And now I made him cry bc I asked if he was drawing his friends in jail and it was them in the trampoline.

 

I can't deal with this!!!!!!!!!!!!

[philamom]

My DS7 had a bad reaction to shellfish during vacation and incidentally wound up on prednisone 30mg twice a day. I thought "okay so we're trying a prednisone burst" which we were going to do since I am now considering IVIG. He's on his third ABX and none seem to be effective. They help a little - I see hardly any tics and minimal rages at least, but he is still just a miserable unhappy child who has tantrums that last up to an hour over the littlest thing. He still has obsessive thoughts and seperation anxiety is actually increasing. We are on day 5 of the prednisone and I think he's worse!!! He's like what we referred to as "steroid boy" when he used to take it for chronic croup when he was little, which is what I was afraid of. So if he isn't responding well to prednisone, doesn't that mean the IVIG wouldn't be effective?

 

We happen to have our appointment with Dr. Finkle today at CHOP. I'm so disheartened I don't even know why we are going at this point. What am I hoping for? I'm starting to think we're at the best point we're going to be and this is going to be our lives from now on

 

He woke up SOAKED this morning, I mean his HAIR was wet from wetting the bed despite getting up twice in the night to pee. He was crying and miserable bc he had done it, yet refuses to shower as of yet. He says he is starving but refuses to eat unless I give him gluten (WTF??). He agreed to an egg, but it wasn't ROUND enough so he pitched a fit over it. He's now drawing his 7th or 8th birthday card for a friend whose birthday is in OCTOBER! And now I made him cry bc I asked if he was drawing his friends in jail and it was them in the trampoline.

 

I can't deal with this!!!!!!!!!!!!

 

We did the 5 day steroid burst prior to IVIG last year and it made my daughter manic. We then proceeded with IVIG with Dr. K and saw a 50% improvement. When back in school she has hit with some illnesses and lost some of the improvement. We recently did 2 more IVIG's with Dr. B and saw great results. Yes, I think you can have success with IVIG even though you had bad results with steroids! One other thing to consider, steroids can aggravate Lyme. You might want to test for Lyme thru Igenex. We are now dealing with Lyme and are currently seeing a herx reaction from the zith she is taking for it. Hang in there!

[mkur]

Making birthday cards early, my son does the same thing. He starts his birthday list and Christmas list in May and even makes his younger brother's list too. That way they can team up on me and make sure they don't miss out on the latest and greatest. He makes powerpoint presentations, and collect pics from the internet to make sure I don't make any mistakes. He will even watch the newspaper ads so that I will get a good deal and then can buy even more. He knows I will only spend x number of dollars for each of them. He loves the buy 2 and get one free ads. My husband and I just shake our heads. It keeps him busy so this gives me a break.

 

Hope things get better. I cannot offer you any more advice than you have already read about here on the forum. Take a deep breath. How's the weather, it is HOT here in Texas.

Edited August 2, 2010 by mkur

[PhillyPA]

The five day steroid burst actually confuses me. My son was put on a month of steroids. The first week was a nightmare. Then, he just started getting better and better. By the fourth week I was in heaven and I asked to continue the steroids. (Doctor said no). He currently is doing great after ivig. No where near healed totally but we are getting there. I must add that if you are depressed CHOP is just going to make you more depressed. They were horrible for my son. If you don't get what you are looking for from CHOP, I would recommend making an appointment with Dr. Latimer in Bethesda, MD. My son changed over night with PANDAS. It was sudden onset. I had a son who was a happy, healthy five year old to a son who got a rash, headache and stopped talking. Overnight. CHOP said I should start him on schizophrenic medication. I think the doctors at CHOP are the ones who need the schizophrenic medication.

[mama2alex]

I'm sorry you are having such a rough time. We've done the 5 day course of prednisone twice now, and our son gets worse while he's on the steroids. But once he's finished with them, we see great improvements (80 to 90%). So watch for a couple more weeks - it may do some good yet.

[philamom]

The five day steroid burst actually confuses me. My son was put on a month of steroids. The first week was a nightmare. Then, he just started getting better and better. By the fourth week I was in heaven and I asked to continue the steroids. (Doctor said no). He currently is doing great after ivig. No where near healed totally but we are getting there. I must add that if you are depressed CHOP is just going to make you more depressed. They were horrible for my son. If you don't get what you are looking for from CHOP, I would recommend making an appointment with Dr. Latimer in Bethesda, MD. My son changed over night with PANDAS. It was sudden onset. I had a son who was a happy, healthy five year old to a son who got a rash, headache and stopped talking. Overnight. CHOP said I should start him on schizophrenic medication. I think the doctors at CHOP are the ones who need the schizophrenic medication.

 

The only doctor who doesn't dismiss PANDAS at CHOP is Dr. Elia. And, she is not aggressive enough...wait until completely non-dysfunctional or just treat episodes with 1 month of abx...no proph. But she is Very Nice and will diagnose the child. I say go straight to the best doctors (Dr. K, Dr. B, Dr. L)!

[melanie]

Im so sorry this is going on right now.I dont think 5 days on steroids is enough to see if IV is helpful so dont throw in the towel.I can totally relate to everything you are saying (except the shower thing) Danny showered 4-5 x a day.(Now just1-2).Try to avoid any conflict the best you can.It makes us worse to deal with all of the little things.

 

melanie

[zazuk2010]

Just wanted to let you know that we did the 5 day steroid burst several months before we did IVIG. twins with PANDAS. one responded very well to the steroid and the other one did not. the one that did not respond at all did great after the IVIG. He has remained well since October when we did it. The other did get better but had a co-infection with mycoplasma and we are now going to do another IVIG. My point is that the steroid was not indicative of how they each responded to the IVIG. Also, the son who responded well to the steroid did not show improvment until 12 days after we started the 5 day course. In fact, he got a little worse during that time. We have done the steroid twice now and have had the same experience both times.

 

 

Best, Kari

[tpotter]

I agree with PhillyPA and Philamom about CHOP. Don't waste your time with them. But, I will give you hope, if you want to try (although it will probably take 3 months to get the appointment:) Dr. Legido is a Ped. Neurologist at St. Chris. He knows a pretty fair amount about PANDAS, as he showed me a textbook section he wrote about PANDAS (pretty general.) He does know about, at least some of the research out there, as I mentioned the Turkish study on PEX to him (I brought that article, as well as Dr. Cunningham's articles, and several others to the appointment. I was trying to get PEX for my boys.) He took forever to get back to me, and by that time (1 1/2 months later) my other son finally had HIS appointment. I called a few days before to see if there was any chance he was going to be able to treat them or I wouldn't waste my time coming back. He finally got back to me, and we went. He is willing to do IVIG, and said he would do it according to Dr. K's protocol. I was going to get it for my son, but it was taking awhile, and we got an appointment with Dr. L, who we have used in the past, for only 3 more weeks from then. I really prefer PEX for my boys, only because I keep hearing about how long it takes for the IVIG to work, and it didn't work well with my younger son (PEX worked better.) Plus, my younger son was denied IVIG from insurance through Dr. K. That being said, IVIG does work extremely well for many kids, and Dr. Legido will do it.

 

For the record, when I called Dr. Legido's secretary to tell her to cancel whatever she was working on, I did tell her that I was very appreciative that he was willing to do it, and then I explained why I was going the other route. I also asked her to pass on that if he changes his mind about PEX, to please let me know (I haven't heard anything.)

 

But, again, don't waste another second at CHOP...it's not worth it. Either get an appointment with one of the PANDAS specialists (Dr. L, Dr. K., Dr. and/or get an appointment with Dr. Legido. Here's another thought. Get an appointment with one of the others, and simultaneously get an appointment with Dr. Legido, since it takes so long, anyway. In fact, I would highly recommend that you consider getting Dr. B. to do all his tests for immunology, because if you want to go the IVIG route, you'll probably have an easier time getting insurance to pay for it, if you have an immunological dx (I'm doing that, so I can make sure to cover all bases. Dr. B's office was surprised when I told them that I didn't want the IVIG tx, but just wanted testing, and a dx.)

 

Good luck, and take a huge, deep breath.