I don't know how much longer I can take this..

[dut]

I ditto the tv comment from dcmom.. we used the tv mercilessly during 1 of our dd's episodes. Not what you feel good about doing but my dd6 said to me that it helped her stop thinking.. she had lots of intrusive thoughts and was very motor hyper.

 

Tv helped keep it all much calmer. We had days where it felt that was all she did but better that than constant intrusive thoughts or manic racing around. We have a number of things that are PANDAS barometers for us and tv seems to be one of them.. if she wants to up her watching I keep a look out for symptoms as I know she uses it and her DS handheld as a means of keeping herself occupied when the intrusive thoughts rear their head.

[momto2pandas]

Ditto. Thank God for the tv. When they flare it is a godsend. For one thing, their main indoor play activity is legos, and when those fine motor skills go, legos become extremely frustrating and the creations made with great difficulty get dropped a lot...and you know what happens when lego creations get dropped from 3 feet high onto a hard floor. No emotional buffer to handle that repeatedly all day (them or me). Two, they get along well when watching tv, so I don't need to worry about who is taunting whom. Three, it seems to be extremely relaxing for them to engage in a normal, pleasurable activity that doesn't put them up against motor or emotional challenges that they're not up for. And four, it's a great break for me. Since they don't watch much tv on a routine basis, we save up a lot of stuff on TiVo that's fun for them when we need it.

 

I ditto the tv comment from dcmom.. we used the tv mercilessly during 1 of our dd's episodes. Not what you feel good about doing but my dd6 said to me that it helped her stop thinking.. she had lots of intrusive thoughts and was very motor hyper.

 

Tv helped keep it all much calmer. We had days where it felt that was all she did but better that than constant intrusive thoughts or manic racing around. We have a number of things that are PANDAS barometers for us and tv seems to be one of them.. if she wants to up her watching I keep a look out for symptoms as I know she uses it and her DS handheld as a means of keeping herself occupied when the intrusive thoughts rear their head.

[dcmom]

Dut- Interesting about the DS. I am pretty anti video game/ tv (except during an episode for the reasons mentioned above). My older, now probable pandas dd, wants a DS and doesn't have one. She suffers mainly anxiety, and some intrusive thoughts- what if I am sick kind of thoughts. We are working her back into ballet, which she left because of anxiety/ocd, using avoidance as her compulsion I guess you would say. We reward her for every step toward attending class. I was thinking of using the DS as a reward (but decided it was too big $$) for when she got back full time. Now I am wondering- she could use the DS the entire way to class- it might be a good distraction for any pre class anxiety. Hhhmmm.

[wornoutmom]

He had to go to the orthodontist this morning so we got to add that mouth pain to the mix. Oh joy for him. He was crying when I brought him back to school that he wouldn't be able to eat anything now for lunch. Left him there with a compassionate counselor. Just heard from him again - mood better but he doesn't want to stay after school with his tutor, saying there was nothing to work on (not true). Talked to the psychiatrist who wanted to try him on Limictal. Has anyone had experience with that drug? Its a mood stabilizer/anti-seizure med, with one very rare but life-threatening side effect called Steven Johnsons syndrome. I would never forgive myself if he got that, and with my son's life luck, he'd be the one...It is also quite slow acting and won't get him out of crisis right away. He said no to putting him back on Celexa. Instead we are doubling the Risperdal and I'm supposed to call him Tues. to let him know if we've got more stability. He also said he would be on call all weekend if there was a crisis - to which I giggled because right now EVERY day is a crisis. I am now gearing up for another evening of anger, mean words, and meltdown. Trying to think positive thoughts, but I HATE THIS!! My son is a walking, human petridish and I can't do any scientific experiment because right now I just need to find the right mix to get him through a day. I pray that the Risperdal and Omnicef will be enough to get him through to Dr. L and that she can sort this all out.

 

Thanks for all the support from everyone. Its not like you can just go talk to the neighbor ladies about this, and it help an enormous amount to know I am not alone, and there are people out there that get it..

[MomWithOCDSon]

I ditto the tv comment from dcmom.. we used the tv mercilessly during 1 of our dd's episodes. Not what you feel good about doing but my dd6 said to me that it helped her stop thinking.. she had lots of intrusive thoughts and was very motor hyper.

 

Tv helped keep it all much calmer. We had days where it felt that was all she did but better that than constant intrusive thoughts or manic racing around. We have a number of things that are PANDAS barometers for us and tv seems to be one of them.. if she wants to up her watching I keep a look out for symptoms as I know she uses it and her DS handheld as a means of keeping herself occupied when the intrusive thoughts rear their head.

 

Wow, I am a slow learner! During exacerbation, my son, too, seems to turn to TV more often. I never thought much of it because he always seemed to have a "reason" for it . . . he was bored with his computer games, finished his book, etc. But he did watch dramatically more, of his own chosing, before the abx really started to have an impact. Now he's back to being engaged with his books, his video games, just engaging in conversation, the computer . . . because he can focus better?

 

Thanks for the lead, Dut. Now I need to be aware of the "TV barometer" myself!

[thereishope]

I noticed that at times when my son was on the verge of a meltdown if I turned on SpongeBob it put him in a type of trance. I remember frantically flipping through the channel looking for that show. And I didn't even like SpongeBob. My kids didn't even start watching it until I found out it calmed him down.

[MomWithOCDSon]

I noticed that at times when my son was on the verge of a meltdown if I turned on SpongeBob it put him in a type of trance. I remember frantically flipping through the channel looking for that show. And I didn't even like SpongeBob. My kids didn't even start watching it until I found out it calmed him down.

 

Used to think SpongeBob was the stupidest concept ever and couldn't imagine why my friends let their kids watch it. Then one day my son tuned in, and the slightly subversive humor managed to crack the whole family up at one point or another in any given episode. Just goes to show what lengths we parents will go to in order to give our kids a little peace, and to find some ourselves!

[peglem]

wornoutmom,

My daughter is on Lamictal. Risperdal did not work for her (her being on it seemed to be a nice placebo for teachers though) and I didn't want to keep increasing the dosage. (But, if it does work for your son, they do make a sublingual, dissolving form that takes effect w/in about 10 minutes if you want to use it on an "as needed" basis). Anyway, about the lamictal- we started it under the care of a neurologist for suspected seizures. But, it helped with mood a little bit. The psychiatrist took over the prescription and it still is the only "psych med" that's been beneficial for my daughter. (she makes the incredible Hulk look like a sweet old granny when she's in exacerbation!) But, it only helps a little-though we'll take every little bit we can get! @ the Stevens-Johnston- its only fatal if you let it go on for a long time, and is the reason they start very low and go very slow on dosing lamictal. If you make it to regular dosing w/o the rash appearing, its likely you'll never see it. If the rash presents on the way up, its very easy to "catch" it in plenty of time and it is completely reversable when you discontinue. Our bigger concern (since the SJ never appeared) is that it can make it hard to sleep if taken too near bedtime, and sleep is definitely something we do not want getting worse (again)! So, we divided the dose - she currently takes 150mg in the morning and 100mg in the early evening. We do also use diazepam as needed...usually pretty effective, especially if we're going into a situation that we know is going to cause a problem (anyplace w/ an elevator, blood draws, dentist).

[dut]

I've even wondered recently if the research that says adhd kids watch too much telly has got things the right way round..... Our dd6watched no tv until she was 3 plus but our ds2 seems to watch more than he should... I know that I use it as a means for some down time for him (and probably more so for me) as he can be, at times (post illness, we feel) VERY lively, wilful etc...

 

Does too much tv make kids hyper or do exhausted parents turn to too much tv???

 

dcmom.. can you borrow a DS off a friend see if it works and maybe if it does buy one and keep it as a treat for needy times?

[brooke]

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

Dear Wornoutmom,

I know where you are! I was there too with very similar issues. I do not know where you are geographically, but I wish I could take your son to try to give you a break!

We did not try any of the psych meds, except the SSRIs which were disasterous. Only thing that helped us was Clonodine which you can get in patch form. I think the psychiatrist would be willing to give you that and I do not think it would be something that Dr. L would object to. I too have not heard Omnicef as an antibiotic of choice.

If you can hold out on the Hospital, I would. Been there and done that. The only benefit was that it said to our son, you cannot do this! But the effects did not last long and all they did was put him on Celexa and Clononine , the former made him worse! We also had no idea at that time that he had PANDAS so you are in a better position armed with that knowledge!

Hang in there! If you want to talk, PM me!

Best,

Brooke

[reneegavin]

I can really relate, I know how bad you feel. When we took our son compltely off even his TINY dose of zoloft, he really suffered when we hit an exaserbation. My bet is your son no longer has that part of his net and is really struggling. This is why getting kids off of these meds is so difficult.

My son is going though a bad time right now too (post viral) and I honestly feel beaten to a pulp too. Recent labs point to C4 deficiency (which we knew about) and 1 of 14 step p. titers, but I don't think we have a prayer for IVIG. Add this to the eye rolling doc's we continually deal with and I'm wishing I had amnesia...

Take care!

PatAnne

 

PatAnne, what was the TINY dose your son was on?

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...