Update, etc.

[peglem]

I'm not even sure what the heck is going on with Allie anymore. We've been getting IVIG every 3-4 weeks since March 2010 (1.5g/kg) She's been on 500mg zith every other day since sometime in 2009. Since March 2011, she's just had strange stuff going on. In March she had this thing that sorta seemed like lupus- tested w/ high TSH once during that, only to have a normal TSH w/in a few days of that. Went through weeks of +RST w/ neg cultures. Was dx'd by the rheumy at that time as having strep reactive arthritis. When she recovered from that (not really recovered until late April) Got this weird hand cramping thing at the end of June that looked more like it was muscular than joint related- recovered w/ a 5 day steroid burst and lots of magnesium. Still, if I lower her magnesium supplement, it starts coming back.

 

But throughout all of this- she has this thing where she is like a little furnace- just emitting heat like crazy, stand w/in a foot of her and its like you're next to a campfire. Its not constant 24/7, but goes through weeks of it getting pretty bad and then better (but not gone). For the last few weeks she's been in furnace mode w/ constant hunger and is either super hyper or super lethargic, sprinkled with bouts of shrieking screams and smashing her head. She wakes in the middle of the night hungry even though I make sure her tummy is full before she goes to sleep.

Her pediatrician last week asked me to try a 3 day trial of clonidine (to help her sleep and to reduce the screaming adrenaline surges during the day). I did it over the weekend- still wakes during the night, and did reduce the screamies-but lethargy was so increased that maybe she was just too tired? I've experimented this week w/ halving the doses in the daytime and that seems better.

 

So, I'm thinking thyroid problems- seems to get worse the week prior to menstruation.

The rheumy thinks we should quit IVIG- she thinks the problems with her hands and the lupus like episode may be caused by the IVIGs. (Allie has had elevated histone titers which would indicate medication induced lupus, but she is not on medication that is known to cause lupus).

 

I'm wondering a few things, if anybody knows. She seems to be hypermetabolizing...So, could her thyroid cause her to burn through immunoglobulins faster? I just don't know whether we should try a break from the IVIG or not...will we be able to get insurance to approve a restart if we need it again. I'm just at the point that I don't know what is going on- so would love to reduce variables to get a clearer picture, but at the same time, I'm worried that she'll take a huge dive. I have a lab order for thyroid testing...should do that soon- just dreading doing the blood draw when she's so unstable its very,very difficult.

 

Then there are the fluctuations in OCD. She's developed some new ones: the door on the medicine chest must be open so she can't see the mirror. I'm not sure if this is about the mirror or something else- she doesn't seem to avoid mirrors otherwise. Anybody whose kids can explain had something like this? Fixations on things (causes lots of anxiety, but can't break away from the object or trigger) is her biggest thing. The good news is, finally have the school recognizing this instead of trying to use ABA to fix her autism. They are really getting on board with helping her deal with it, which is so good because I cannot get a therapist that will help her with her OCD-I called every single one that is on our insurance and they all said they do not think they'd be able to help her.

 

I just feel like I'm becoming this tired old lady- tired of searching for answers, tired of looking for doctors, tired of trying new things (not much faith in anything helping), tired of there always being something new to deal with-just when you think you've finally gotten a handle, tired of tests...and tired of just being tired. Menupause (tired of spelling correctly, too) is upon me and I've got horrible hot flashes as well.

Not sure why I'm posting this...just need some understanding and well, frankly a pity party might not be such a bad idea right now!

[Dedee]

Oh godness....bless your heart. I am so sorry you are going through this. I know how badly it can wear you down. It sounds like your daughter has some definite underlying issue going on. It may be necessary to hold off on the IVIG for a couple of months so that you can get a better picture of what is happening. Kids react differently to IVIG. I haven't heard of the things you are describing coming from IVIG, but you never know. Especially with her getting it so frequently. I think it would be worth a try. It is good that you have her going to a Rheumy though. I wish I had some huge answers for you but all I have to offer is my sincere hope that things will improve soon for your daughter. It's ok to have a pity party.....there for a while, I had them on a regular basis. I know you feel like you are all alone, but you can always come here for support. We truly understand your struggles...please keep us updated on your daughters progress. Best of luck.

 

Dedee

[MomWithOCDSon]

Peggy --

 

Sorry that I know absolutely nothing about thyroid function or any of the things you and Allie seem to be migrating through at this point. But I wanted to offer some cyber-support. You're such a strong, tireless mom, but I know it wears on you! Please hang in there, and hopefully someone here will have some ideas for you.

[P_Mom]

Peg...

 

I have no answers for you. I know you have looked at everything and done everything....you have fought such a long, hard battle. I just wanted to say I am sorry...I am sorry you and Allie, and the rest of your family, have to go through this. It sucks! I would be tired, too.

 

p.s. Your "tired of spelling correctly" comment did give me a chuckle.

[PhillyPA]

As I am sure many of you may have noticed, I don't even bother caring about spelling anymore.

 

Peggy, I feel your pain. The only suggestion I can make is to get Ally sedated and get her a spinal tap to check for EVERYTHING!

[Mary M]

May the empathy party begin!

 

I wish I had some words of wisdom for you, Peg, as you have always provided me with so much support and marvelous, concrete suggestions as to what to do next. You have been a true pioneer on this journey but the work is arduous and indeed exhausting. A break, for both your sake and Allie's, may be therapeutic and re-energizing. You've been doing this for what seems like a lifetime. In terms of Allie's medical care, education and family life you have not only redirected streams of information you have literally moved mountains of knowledge. In terms of the greater community, all of us on this forum...you have provided so much. I wish I could come and sit by your side, sip a cup of tea and just spend a moment in time with you...I wish saying that through the internet could make our support to you feel real. You are an amazing woman, mother and friend.

Mary

from Michigan

[dut]

Hi - was wondering if you'd conmsidered hashimotos which can cause hypo thyroid with bouts of hyper and can present with something called Prasad's Syndrome that causes mania and screaming jags.. don't know much about it but remembered reading about it when you mentioned Allie screaming a lot...

 

 

really hope things settle down for you.. good luck

[peglem]

Awwww! You guys always make me feel like I have support and people who understand!

 

Tired of spelling correctly kind of made me smile when I wrote it- I'm usually a bit anal about that, but realized I was just to tired to figure out how to spell it right!

 

I haven't scheduled Allie's next IVIG yet, but I'm meeting with the immuno in a week or so, so we'll talk about it then. Part of my confusion here is that when I tell the immuno the concerns that the rheumy has, he disagrees that the IVIG can cause that. Like the rheumy thinks the antihistone antibodies are coming from the IVIG- the immuno says they remove auto antibodies. But I tend to think the rheumy is influenced by her department head (who we saw when he was the only show in town and was one who thought I was crazy and putting my child through unnecessary treatments to feed my own need ). She was so weird the last time we went there- talking about giving Allie prednisone "willy-nilly" (the pediatrician had prescribed to see if the hand problem was autoimmune) and saying if the mri doesn't show arthritis then its all behavioral and maybe I should just go back to the PANDAS specialist. (Dr. L, who really just said they should treat her immune deficiency). She did not listen when I told her I thought the hand thing looked muscular this time- I didn't think it was arthritis (which is why I went to the pediatrician, instead of her). I think maybe that has been straightened out...

 

Dut, The ped. is considering Hashimotos and I'll go get that dang blood test this afternoon. Wanted to see if the clonidine would help first. Never heard of Prasad's- I'll look that up.