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[7upMom]

Just wanted to give an update on DS 9 - it has just been so chaotic have not been able to catch up. Went to Chicago and saw Dr K, last Monday, very informing visit, would highly recommend this to anyone- and I was very nervous about going. He was very intuitive and was able to tell me almost to the "t" about my son, after years of learning I can't trust a "doc" in this, I quickly learned I could trust he knew what he was doing and what we were going through! The plan was this

1. wean off the lexapro, abilifiy ( clonidine was ok for him to remain on) also test for mycoplasma pneum.

2. Wait two weeks after off these meds then begin 5 day steroid burst

3. After steroid burst, wait 2 weeks and evaluate

4. Option if good response to steroid burst proceed with IVIG, then highdose augmentin after for 1-3 years

He advised at this age and the symptoms presented he would have a cure rate of approx 92% - very good news for us, we all coulda bear hugged and kissed him!

We had a plan! YES! a plan! and good, gives us time to refinance and pay for this also.

Upon returning home, all ###### just broke loose- He raged for 3 days straight morning to night- we held him down for 20-30 min increments prob 5-6 times each day. There was spitting, swearing, punching, threats on himself, threats on us, throwing anything, slamming his head on anything, smearing himself in spit and snot- IT was horrendous to watch, and then we have two sets of twins ( 6 and 4 ) that are in the midst of this also. We videotaped this, it looks like its out of a horror movie.

By day 4 he woke up feeling a lot better, even made it to school ( WOW) had psych appt to wean him off meds- but they wanted him to stay and 9 y/o said I will do it cause I just want to get better, so he stayed. After 3 days there, he broke out in a rash, 4th day- still a rash and upon a visit he was trying to hold in a rage so bad ( I talked with staff about how I was worried that after so many days of holding this in , I could see it and this did not bode well for bringing him home) I was told obv then he can "control" it. I explained its not a matter of "control" but containment for a period of time- because eventually it comes out- its just a matter of when.

Day 5 ( yesterday) he was discharged. We were so happy to get him home, and he was so excited and happy to go home. 5 minutes after walking in the door, he managed to scream at the dog, his little brothers for looking at him, it went downhill from there no matter what I tried to do for redirection with him. He would scream at me, run to his room, come back out and cycle all over. He tried so hard to contain it , but 5 days of anxiety built up - it was going to come raging out and that it did!

He tried to throw himself down the stairs, rammed his head into the wall, tried to break his fingers, bit his arm, leg, fingers anything he could get in his mouth including us, punched, kicked , spit, swore you name it. He urinated on himself and thats when I called the discharge helpline, she was listening to what he was screaming about on the phone- I interpreted for her_ he says he is going to F*&^ stab himself with a fork in his throat,- OH she said ok sshhh, I'm listening- Ok - now he says all you F*&^ people at the hospital are F*&^&^ A*&&^^^ Oh she says , take him to the closest ER right away that child needs medicated.

UGH! Felt there was no choice 20 min later we are wrestling with him in the vehicle and could barely get him there 20 min away- he fought with staff , they had us hold him down in the room ( geesh coulda stayed at home and done this was my thinking) an hour later, they were taking him to the hospital an hour away and inpatient again as of midnight last night by the time we got there, he was Him again, he was apologizing and said he was so embarrassed and so sorry. He begged to come home, he said he hates it there, he is scared to be there, scared of them, just scared. His dad called this morning and he can barely talk to us, says they put him in the "quiet room" and he just couldn't talk. My heart is ripping out here, his dads heart is ripping out. All we can do is just cry we feel so helpless. His dad explains it like this- most kids that are this sick have wires and tubes and you know they are sick - but with him its so hard, theres no wires or tubes, but we are losing him just the same. Each week its worse, how will it be in a month- I am afraid to know. No damage to the brain?? Right now- my answer would be yes over years of going untreated YES, that is what we have right now because our child does not swear, he is loving and sweet and smart and funny. He would help anyone do anything and we don't see him very often anymore, instead he is spacey and trapped inside, he is raging and swearing and violent - and we are helpless!

Psych doc has yet to return our phone call to see how our son is, reg dr says not much she can do, have an email into Dr K for help. We feel so stuck

[thereishope]

I am so sorry. Did you explain to the people at the hospital how important it is for him to get his antibiotics? I'm not saying this is going to solve anything, but have you discussed with them giving him Ibuprofen to see if that takes any of the edge off of the bursts of rage?

 

Do the people at the hospital understand PANDAS?

 

He will get better. Believe that. See this as the turning point. You are reaching your lowest and soon, very soon, it will be better.

 

I'll keep you in my prayers. Please keep us updated.

 

Vickie

[colleenrn]

I am so sorry you and your family are going through this. It is so very hard.

 

I read back over some of your old posts and did not see where he is on antibiotics. Is he on any right now? If not, I think it is completely warranted, given the severity of his behavior right now, to put him on either a high dose of Augmentin or on Zithromax. If he currently has strep, this may be why he is worsening. Can you also get themn to give him Ibuprofen? If he is 9 he could take 600mg evry 4-6 hours.

 

Colleen

[simplygina]

I'm so sorry you are going through this. My heart breaks just reading this. PANDAS sucks!!!

 

The only thing I have to add is to make sure you wean him off the Lexapro very very slowly. It is once of the harder ones to wean off because its half life is short and the body goes into withdrawal very quickly. It's taken since October to get my son down to 25 mg of Zoloft (from 150 mg). This is twice as long as the usual weaning schedule. With each reduction there is a bout of emotional issues. With this last little bit every time we try the withdrawal is severe and we just can't do it. I'm just waiting until he's doing better because right now is the worst I've seen him so far.

 

Wishing you and your son quick turn around!

[fuelforall]

WELL!!!!

 

And here I thought my ds9 was one of the worst. Your description is like what we saw before he went into the hospital. Only your son was worse.

Except we didn't have any of the, "take me home" because my son does not apologize because he is incapable of admitting he is wrong about anything. He behaved exactly the same way, threatening, violent, in the hospital. Or very silly. (They didn't give abx there either)

 

You're on the right path now. Get the abx in him, as others have said. Ibuprofen can't hurt. Make sure you get all immunological tests done as well, not just for mycoplasma.

 

Good luck, I know, it's heck out there.

 

Michael

[7upMom]

He takes penicillin 250 twice a day, has been on that for 1 1/2 yr off for about 6 months and has been back on it for about 4 months now. His aso's are always fine, in Oct/Nov his dnase titers were 1360+ and then Dec 720 , then Jan 1360+ and then last week 680. They told me they will put the ibuprofen down "as needed" for him.

 

His psych who is the director there, is onboard with Dr K so we are very lucky there. He is currently now completely off the lexapro and abilify but as far as the rages- I don't think its from him coming off those meds because he was raging like this before he went in to get off them.

 

I think prob a good half of them seem to be understanding it- last week they told me its hard because they are so used to preaching "being respon for your own behavior and actions etc, but in his case they understand there is something else controlling that and don't want to be too hard on him"

Then you get a nurse like last night when he came back in she looked at him very condescending and snarly about him "throwing a fit" and coming right back in. Well, by this time he already had enough of his own guilt, he didn't need hers, he started crying all over again when she did that. I was not a happy mom at that point. I'm have tempted to clear out a room in my house, pad the walls up and just call that our chill out room away from the little ones and he doesn't have to go back in there, but yet its one room that could have 50 holes in it if it had to be. Geez, Dr K was right, we are adapting critters !!!

 

Thank you so much for the prayers, we are really in need of as many as possible.

your right though- we will get through this and it will get better, I just wish that was sooner than later

[7upMom]

WELL!!!!

 

And here I thought my ds9 was one of the worst. Your description is like what we saw before he went into the hospital. Only your son was worse.

Except we didn't have any of the, "take me home" because my son does not apologize because he is incapable of admitting he is wrong about anything. He behaved exactly the same way, threatening, violent, in the hospital. Or very silly. (They didn't give abx there either)

 

You're on the right path now. Get the abx in him, as others have said. Ibuprofen can't hurt. Make sure you get all immunological tests done as well, not just for mycoplasma.

 

Good luck, I know, it's heck out there.

 

Michael

 

YES- we do the very silly thing on the other end of it also. Theres not much for middle ground, its either really high or really low. SO a different antibiotic other than the penicillin? Does that interfere at all with the steroid burst we are going to do in 2 weeks?? It would be hard to not have the apology part ):

[thereishope]

I'm sorry, but no one has tried changing his antibiotic, not even Dr K? I'm just confused because a lot of kids do NOT have success on penicillan. If it wasn't offered, I'd call Dr K today and ask if he can prescribe him a different antibiotic.

[colleenrn]

7upmom,

 

250mg of penicillin/day is a small dose. He could very well have strep while on that dose. The treatment dose for strep for an 80 child would be 300-600mg of penicillin given 3 times per day. If he has strep, his current dose will not get rid of the strep.

 

Can you ask/request/then insist he be put on something else ?

 

Colleen

[fuelforall]

YES- we do the very silly thing on the other end of it also. Theres not much for middle ground, its either really high or really low. SO a different antibiotic other than the penicillin? Does that interfere at all with the steroid burst we are going to do in 2 weeks?? It would be hard to not have the apology part ):

 

 

If the penicillin isn't cutting it, you got to switch. Maybe zith will do it for you, it didn't for my son, but it's pretty painless to take.

Not sure about the burst interfering but put him on abx up until you do the burst, then do the burst. I took my son off abx when he did the burst. Watch out for your ds getting a cold or sick while on the burst! That's what happened to my son and it messed things up a lot.

 

So you get the silly bit too? Yeah, so does my co-worker's son with PANDAS- yes I have a co worker with a son with PANDAS, he sees Dr T as well. It seems to be part of the package. I'd sure love to get rid of that! We have IVIG Monday but if my MD does not come thru with high dose IVIG, I will postpone and wait for Dr. B in Connecticut to take him. That will be fully covered and he follows Dr. K's protocol.

[thereishope]

Have you ever read this ....

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

it seems most are having sucess on Zithromax or Augmentin. For those who are doing higher doses of Augmentin, some are getting Augmentin XR.

[mama2alex]

1. wean off the lexapro, abilifiy ( clonidine was ok for him to remain on) also test for mycoplasma pneum.

2. Wait two weeks after off these meds then begin 5 day steroid burst

3. After steroid burst, wait 2 weeks and evaluate

4. Option if good response to steroid burst proceed with IVIG, then highdose augmentin after for 1-3 years

 

I don't understand why high dose Augmentin is the last step in the plan - it could take months! Obviously the Penicillin is doing nothing for him, as it does for most PANDAS kids. I would call Dr. K and ask if you can try the high dose Augmentin NOW. He's in crisis, so I think this step-wise approach needs to be reevaluated. IMHO high dose antibiotics should be a priority, because it really sounds like he was exposed to something. I also agree with trying Ibuprofen, if you haven't already. Also, can you do the steroid burst soon?

 

Hang in there! You will get through this. You're in my prayers.

[peglem]

Pennicillan failed to control my daughter's strep- she tested positive after having been on it for several months. Zith did the trick...but she needed full treatment dose, not just prophylaxis. What finally really helped was 10 days of rifampin in addition to treatment dose of augmentin. Then we went back to treatment dose of zith.

 

I'm sending prayers, too!

[7upMom]

I have a message into him ( Dr K ) and am waiting for him to get back with me- I will ask about the antibiotic when he does this. Thanks for this advice- this has made me hopeful again and maybe this and the ibuprofen every 6 will put us back to manageable!

I do have a 10 day script of cephalexin 250/3 x's a day for him from a doc here at home in case he did have a positive strep. Is that a strong enough to do any good?

[fuelforall]

I have a message into him ( Dr K ) and am waiting for him to get back with me- I will ask about the antibiotic when he does this. Thanks for this advice- this has made me hopeful again and maybe this and the ibuprofen every 6 will put us back to manageable!

I do have a 10 day script of cephalexin 250/3 x's a day for him from a doc here at home in case he did have a positive strep. Is that a strong enough to do any good?

 

Cephalexin... it depends on your child. Maybe it will, maybe it won't. It is strong enough but what will results be? Some kids respond to omnicef, some don't.

Should do augmentin or Zith right off the bat. Again, wait for Dr. K on this. But I would opt for one of the two. Maybe even clindamycin.