Symptoms coming back

[jdude]

Bit of background...DS, 11, started symptoms May 2010 (hand rinsing, followed by lots of tics starting in July, separation anxiety, age regression), finally diagnosed w/PANDAS in Sept. His symptoms have waxed and waned, with periods of absolutely no symptoms (after one steroid burst, then after he was on another round of steriods for an asthma attack). His symptoms come and go, and seem to change. He had a noticable change in handwriting after a strep exposure, that is better. Math skills went down (he was in the "accerated" range on state tests last year, recent test was "proficient", with one area being below proficient. Based on a recommendation from someone on this board, we have started Kumon for math refresher.

 

Latest OCD symptom is having to have the door between the laundry room and family room shut. If he sees it open, he will stop what he is doing and shut it. It drives my DH crazy as sometimes he is walking in and going back out and doesn't want the door shut. DS also seems to have a preoccupation with sexual topics (ever since he had "family life" class), although he does manage to keep this within the house and not in public. He does drive his older brother nuts with his talk though.

 

Other than those two things, he is pretty typical. He plays with friends and does typical things. If you met him you may not even notice anything different about him. My husband thinks every time a symptom comes up, no matter how mild, I need to "get it fixed". My son is not incapcitated and compared to some of the children i have read about on this board, I feel pretty fortunate his symptoms aren't worse. My husband is the one driving me nuts. Last night in a fit of frustration over the door issue he made an offhand remark about "doing something about this or have him committed". My son overheard this. I was FURIOUS!!! My DH knows he was way out of line and has apologized (after I had to calm my upset son down who was crying and saying he didn't want to go to a mental institution.

 

I'm struggling about whether to go the IVIG route to knock lingering antibodies out of his symptoms. It seems like such an invasive procedure for someone with what I consider to be mild symptoms at this time. But if i knew it would get him back to 100%, it may be worth it for my whole families sake. Any thoughts or advice?

[dcmom]

have you tried therapy?

 

My dh has has lapses in judgement/patience like that- si I know your frustration. Seeing a therapist for your son, may also give your DH the tools to help your son, and his frustration level.

[Mary M]

So sorry...this disease does affect the whole family and shifts family dynamics as the symptoms wax and wane. In my opinion, the door shutting or slamming is an iconic symptom now. When I hear another person speak of their child needing to shut the doors..POW, I think PANDAS. And I know during that stage of things in my house, the door shutting/slamming put everyone's nerves on edge and even after it ended I would jump for the slightest BANG-sound around me. Between my dh and I, we are each affected very differently by the myriad symptoms our dd demonstrates. Not only do PANDAS kids' symptoms morph but so do the reactions of those in the home to each of the different symptoms. No one ever knows what to expect next from anyone. This random lifestyle creates real challenges in the dynamics of family life on so many levels. I can only speak for myself when I say that I have had to work very hard to THINK first, before I speak to my dd. Easier said than done when a parent is on edge.

 

If you met my dd, you'd never know anything was wrong either...two IVIgs have helped bring her back from the brink so our decision for IVIg was simple...we had lost her. But continued abx are our other significant medical intervention. Is your ds on abx currently?

Mary

from Michigan

[lmkmip67]

I had no idea about the door shutting! OMGosh. My son does that too and it is driving me batty. He just started it maybe a month ago. I am trying to stop him from doing it and it involves a major meltdown when he can't shut all the doors. I didn't mean to hijack, but this is also have two IVIGs. Anyway, my husband didn't understand at first either. I would suggest some family counseling that involves everyone. It might help your husband understand that this isn't about him and it is about how your son is feeling. Yes it affects everyone, but the counseling could help you all deal. If it is having in impact on your family, no matter how mild your DS is, it is worth it. GL!

[jdude]

He does take a prophylactic dose of Pen vK 1/day (250 MG), prior to that he was on Zithro. He increases dose if known strep exposure. My DH also questioned the PANDAS diagnosis last night since "he isn't getting better". That isn't exactly true. He is much better than last year, and he has had periods of no symptoms. He seems to think he should be "cured" and doesn't get that this is a chronic thing. He isn't reading forums, talking with other PANDAS parents, etc, because as the main breadwinner, he doesn't have as much time to devote to this as me. I am forcing him to go to his next doctors appointment with me so she can explain some of this to him.

[airial95]

I think that therapy might be useful. It has helped us immensely as we've gotten all of our son's other PANDAS symptoms under control - the OCD has just been a bit more stubborn. And yes - like your son, at this point you wouldn't even realize that anything is wrong with our son (unless he has strep) - his OCD is much more mild and he's completely functional. We have questioned IVIG for our son as well, but have been reluctant because he remits well with abx, with the exception of the OCD which lingers.

 

My husband's case was a bit opposite of yours - he was feeding the OCD and giving in to it for my son because it kept the peace in the house - who cares if he has 3 straws in his drink if it keeps him happy right? Unfortunately, he didn't understand that it may start as "harmlessly" as having 3 straws in his drinks - but that escalates slowly but surely - to needing to have 3 drinks at all times (with 3 straws in each of course!)

 

I found it helpful for my husband to start taking my son to the therapist appointments. (we switched weekly) He got a better understanding of what was happening, and he started reacting differently. Like you - our roles are divided in our household - he deals with the finances, I deal with the medical and school issues. So until I forced him to come to some of the appointments with the PANDAS specialist and therapy - he wasn't really getting a full picture.

 

You may also want to consider couples therapy as well - we did this for about 6 months when my son first got sick and it really helped. Prior to that, neither of us were really able to fully address/acknowledge our fears about our son's health and future - which often came out in comments/attitudes like you describe in your hubby.

 

Just a thought.

[NMom]

I share your concern. My son is fully functional but still struggles daily with the tics and OCD thoughts. He's on abx and has been for a year and we are just coming out of our second major exacerbation...so I'm wondering now about IVIG as well. I have an appt with Dr. L tomorrow and am going to ask that question...will be happy to pass along her thoughts on the subject. All of this is so scary and stressful. All I want is for my son to ultimately be healthy and not haunted by all this OCD crap!

[Burnell]

tell hubby things can get a whole lot worse. I wish our age 12 daughter's main problem was shutting an open door. Her OCD is out of control, touching floors, doors, and walls and yelling at her brother anytime he uses a remote, forks, or opens a door. We had in IVIG in May and ir worked for a month. Now a major relapse and she is worse than ever before. We are going to see Dr Storch for OCD therapy in St Pete Florida for 3 weeks and leave Saturday. She was even in a PANDAS study at the NIH. I hope the therapy and med review helps. I just want her to get sleepy at night again, she is often up wandering the house till 4 AM and be nicer to her brother.

[MomWithOCDSon]

tell hubby things can get a whole lot worse. I wish our age 12 daughter's main problem was shutting an open door. Her OCD is out of control, touching floors, doors, and walls and yelling at her brother anytime he uses a remote, forks, or opens a door. We had in IVIG in May and ir worked for a month. Now a major relapse and she is worse than ever before. We are going to see Dr Storch for OCD therapy in St Pete Florida for 3 weeks and leave Saturday. She was even in a PANDAS study at the NIH. I hope the therapy and med review helps. I just want her to get sleepy at night again, she is often up wandering the house till 4 AM and be nicer to her brother.

 

Burnell -- I PMed you; you will be in very good hands in Florida! For your DD's lack of sleep, have you tried melatonin? It has worked like a charm for us for helping our DS feel restful and fall asleep. A potential bonus, also, is that it is apparently good at counteracting excess glutamate in the brain, which may be a contributor to OCD and some other behavioral issues in our PANDAS kids. So it may be helpful on more than one front. We give 1 mg. about 30 minutes before bedtime, and he's out like a light!

[airial95]

tell hubby things can get a whole lot worse. I wish our age 12 daughter's main problem was shutting an open door. Her OCD is out of control, touching floors, doors, and walls and yelling at her brother anytime he uses a remote, forks, or opens a door. We had in IVIG in May and ir worked for a month. Now a major relapse and she is worse than ever before. We are going to see Dr Storch for OCD therapy in St Pete Florida for 3 weeks and leave Saturday. She was even in a PANDAS study at the NIH. I hope the therapy and med review helps. I just want her to get sleepy at night again, she is often up wandering the house till 4 AM and be nicer to her brother.

 

Burnell -- I PMed you; you will be in very good hands in Florida! For your DD's lack of sleep, have you tried melatonin? It has worked like a charm for us for helping our DS feel restful and fall asleep. A potential bonus, also, is that it is apparently good at counteracting excess glutamate in the brain, which may be a contributor to OCD and some other behavioral issues in our PANDAS kids. So it may be helpful on more than one front. We give 1 mg. about 30 minutes before bedtime, and he's out like a light!

 

Remember, it might take a couple of weeks for the melatonin to start working, so stick with it. You also might need to play with the dosage. There is no solid "recommended" dosages for kids, so you might need trial and error to get the right dosage. That's what we had to do, our son is on a 3 mg dose, which is high cause he's so young, but we had to keep upping it every 3-4 weeks until we found a sweet spot. Nothing less than the 3 mg pill worked for us.