Stammering

[thereishope]

I know there are slp's on here so I feel weird even saying this, but I have been told that sensory problems, OCD, and more actually are not uncommon to have when a child has a speech disorder. So, I suppose we should not be surprised that speech, in any way, would be affected during an exacerbation.

 

My son has a speech disorder. He usually gets to his goals pretty quick. when in an exacerbation, all progress in speech pretty much stopped. I definitely saw a correlation. When he was considered recovered, he was back to hitting those goals left and right.

Edited March 29, 2010 by Vickie

[dut]

Hello.

 

Just thought I would update on ds2 and his stuttering. He and his sis both did a course of zith (in addition to proph abx) on the back of dd's mild ramp in PANDAS symptoms. (BTW dd's symptoms fully gone again ).

 

3 days into the full course of abx, ds2 goes off the wall with uber toddler behaviours but constant and really up there! Even dd was like 'why's he acting so crazy?' For him this comes after a fair few weeks/months of worse sleep, more easily frustrated etc and the stuttering.

 

He was off the wall for 5 days (herxing in some way?) and since has been the picture of lively but well behaved cutesy twoness. My sis saw 1 day of his off the wall behaviour and said somewhat tongue in cheek (I think) that he made my VERY lively brother when young look like Gandhi

 

Anyway, the stuttering stopped dead during the abx course. I saw 1 tiny stutter today, the 1st in a month. Interestingly, I and my sis have had really bad colds this week. I'm convinced the abx got rid of his stutter.. we'll see how it goes....

[momto2pandas]

We had an interesting situation with our IVIG earlier this week. Ds3's stammering/stuttering COMPLETELY stopped during the first day of the treatment, and stayed completely stopped the second day. He spoke 100% completely clearly all the time. Now, a few days later, we are seeing what seems like more of a PANDAS exacerbation and at moments, his speech is so bad that I have absolutely no clue what he is trying to say. Literally jibberish. I'm assuming for now that this is the adjustment most people talk about post-IVIG, but I given the 100% disappearance of it in the first couple of days, I'm hopeful that we'll see improvement over the next few weeks.

 

 

Hello.

 

Just thought I would update on ds2 and his stuttering. He and his sis both did a course of zith (in addition to proph abx) on the back of dd's mild ramp in PANDAS symptoms. (BTW dd's symptoms fully gone again ).

 

3 days into the full course of abx, ds2 goes off the wall with uber toddler behaviours but constant and really up there! Even dd was like 'why's he acting so crazy?' For him this comes after a fair few weeks/months of worse sleep, more easily frustrated etc and the stuttering.

 

He was off the wall for 5 days (herxing in some way?) and since has been the picture of lively but well behaved cutesy twoness. My sis saw 1 day of his off the wall behaviour and said somewhat tongue in cheek (I think) that he made my VERY lively brother when young look like Gandhi

 

Anyway, the stuttering stopped dead during the abx course. I saw 1 tiny stutter today, the 1st in a month. Interestingly, I and my sis have had really bad colds this week. I'm convinced the abx got rid of his stutter.. we'll see how it goes....

[Doug]

Hi - has anyone seen stammering in their children during PANDAS episodes but not at other times? Not word repeating but more a real stammer, like getting stuck on the 'M"' sound at the begnning of a word like a stammerer might...

 

Thanks.

Dut... Clear out your in box it is full so I can send you a message

Doug

[dut]

inbox cleared... :-)

[dut]

Hi again - I'm now convinced the stammer/stutter is PAND(AS?) induced. My ds2 is showing more signs of defiance/lower tolerance and ramping stuttering. The stutter started again a few days ago and was shortly followed by the other behaviours and a cold. He has the same cold as I did (I got swabbed, all negative) so am assuming it's viral.

 

I'm giving ibuprofen tonight and will try getting some curcumin into him tomorrow too (in addition to the norm. probiotics and omga 3) but don't see the point in upping his proph abx to full course amount.. am I wrong not to? Any opinions?

 

Momto2 - how are things going with you and your two children?

[momto2pandas]

My kids are doing pretty well. We are 7-days post IVIG now. Ds6 is great 99% of the time. He has these bizarre 30-second explosive rages several times per day, that vanish as suddenly as they start. Something sets him off and bang, and then it's over. He even pushed me once, which he has never done before. That's it, though. No tics, no anxiety, great energy, and he looks good & happy. I don't feel like we're on a smooth path yet but am hopeful.

 

Ds4-this-week is doing very well in some ways, and not as well in others. His stammering/stuttering is 99.9% gone. That part is quite amazing. Overall, his energy level is better. However, he is moody. He looked exhausted this morning, then was apparently good at preschool, then had a bunch of OCD and defiance stuff and emotional sensitivity this afternoon. Then mid-afternoon he suddenly said that his head really hurt, he gobbled down 24 oz of milk, and he said that he wanted to go to bed (and he hasn't napped in years). He has been asleep since. His last day of steroids was the day before yesterday, so I am wondering if he's having an adjustment to going off. I'm just praying that it's an adjustment one way or another and not some new infection.

 

It's interesting - Dr. B said that he thought that ds6 would do well after a single treatment and that ds3 would need a bunch, based on their test results. We're only a week out at this point, but it does seem like he might be right.

 

 

 

Hi again - I'm now convinced the stammer/stutter is PAND(AS?) induced. My ds2 is showing more signs of defiance/lower tolerance and ramping stuttering. The stutter started again a few days ago and was shortly followed by the other behaviours and a cold. He has the same cold as I did (I got swabbed, all negative) so am assuming it's viral.

 

I'm giving ibuprofen tonight and will try getting some curcumin into him tomorrow too (in addition to the norm. probiotics and omga 3) but don't see the point in upping his proph abx to full course amount.. am I wrong not to? Any opinions?

 

Momto2 - how are things going with you and your two children?

[dut]

Glad to hear things are going well. With your older child ( i know it's only 7 days out, mind you) but have you seen the turning back of pages so often talked about?

 

What's your timeline for doing more IVIGs with your younger child? Will you wait 3 months or go sooner?

[momto2pandas]

Yes, definitely turning back of the pages. Every symptom we have ever seen in mini form. Leg problems that used to last days (quite a while ago), came back but only for 2 hours - one time. Used to get bedwetting during exacerbations, now he's gotten up to pee at night once or twice. Etc. etc. It's like he's great 99% of the time and the other 1% he does all of this old stuff and the weird rages in "flash" form.

 

Dr. B said that he thought ds3 would need treatments every month for quite a while since his immune system is so shot... but then he backtracked and said "let's just see if he gets sick again before planning one next month." We'll see if what he's experiencing today is a new or recurrent infection, in which case we'll probably schedule one for 4 weeks from the first, or if it's "turning back the pages". At least my little guy doesn't really mind medical procedures. He wants to be a doctor and is very interested in watching the needle go in, etc. He winces, but only as much as I would. My six-year-old freaks.

 

 

Glad to hear things are going well. With your older child ( i know it's only 7 days out, mind you) but have you seen the turning back of pages so often talked about?

 

What's your timeline for doing more IVIGs with your younger child? Will you wait 3 months or go sooner?

[dut]

Yeh, my dd6 is super brave and watches the needle go in etc.. got a hard gene from somewhere (don't think it can be mine) but now she's learnt to milk it as I once said the more it hurts the more chocolate she would get. So now we get these feeble, b movie quiet moans and sad looks in my direction and some very confused phlebotomists

 

...gonna have to change the pay off in some way....

 

Also used ibuprofen on ds2 today and it really seemed to diminish the stuttering.. almost stopped it. I've never really found ibuprofen has helped my 2 previously but seemed to really work today for ds for his mood and tolerance too.

[coco]

Dr. B said that he thought ds3 would need treatments every month for quite a while since his immune system is so shot... but then he backtracked and said "let's just see if he gets sick again before planning one next month."

 

Mom2 -- what dosage of ivig was Dr. B planning on doing for the monthly treatments for your 3-yr old? 1.5 or low dose?

[momto2pandas]

The first dose was 1.5, but he said that after the first we would switch to low dose for a while.

 

Dr. B said that he thought ds3 would need treatments every month for quite a while since his immune system is so shot... but then he backtracked and said "let's just see if he gets sick again before planning one next month."

 

Mom2 -- what dosage of ivig was Dr. B planning on doing for the monthly treatments for your 3-yr old? 1.5 or low dose?