Possibly PANDAS?

[stateless]

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Edited May 29, 2013 by stateless

[thereishope]

Welcome.

 

Read this link. The abstract doesn't say much but the title blew me away

 

Spasmodic dysphonia in an adolescent patient with an autoimmune neurologic disorder

 

http://www.amjoto.com/article/S0196-0709(07)00004-X/abstract

 

Out of curiosity, did the dr ever do strep test with the original throat problems? If not, they should look into it.

 

It's sad they viewed him as a naughty boy. Either he was overly lethargic and couldn't move and complete tasks or it was a form of ODD (Oppositional Defiance Disorder) which PANDAS kids can have. With my son, it was very frustarting.But with my son, it wasn't that he seemed that he couldn't move, but rather it was a fight for the simplest tasks and requests. One would say he was determined to "win" and whatever I said he needed to do the opposite.

Edited October 29, 2010 by Vickie

[stateless]

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Edited May 29, 2013 by stateless

[thereishope]

There are other things that you mention that would fall into the PANDAS catagory. I'll pin point them and answer it from a PANDAS point of view...

 

OCD is related to PANDAS. The fact that he was viewed as being "normal" just months prior is a red flag. Yes, stress and anxiety will defnitely worsen the symptoms of a PANDAS child. Urinary frequency is a symptoms of PANDAS. So, is depression. IF this is PANDAS (again answering from a PANDAS point of view) you cannot force that boy to do anything while in an exacerbation. They are not themselves. They have no reasoning skills left. To force them is not good. To punish is not good.

 

As for not being able to walk, that one's got me. I think one person on here said their child couldn't walk for a while, but it's not a common PANDAS symptom. Perhaps someone else will chime in one that.

 

Even though he was given antibiotics before would not rule out an infection still being present. Antibiotics do not always rid the body of infection. I'd be curious to know what the antibiotic was, how long the child was on an antibiotic and if ANY improvemnt in behavior occurred at the time. Was a steroid ever given to the child?

 

I commend you for looking into this for that little boy. I know he's 9...but when their sick, they are still consider little boys to me. He is lucky to have you looking out for him.

 

Here is a useful link on PANDAS you can look at. Perhaps you will find it useful.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

Edited September 3, 2010 by Vickie

[Priscilla]

I would certainly try to find a dr in the area to have him seen for PANDAS. Symptoms don't always come on abrublty right after the infection. My daughter was sick in dec 09, took a course of antibiotics at that time, then slowly went downhill until April when she SUDDENLY became very severe, with panic attacks, ocd, meltdowns, tics, motor and vocal, jumping instead of walking.... I have seen videos of children losing the necessary motor skills to walk. I have even seen a clip about a girl that was wheelchair bound for weeks. He should be tried on antibiotics (used for PANDAS), My daughter didn't see improvement for 10 days (normal course would be done by then) then she was perfect, only to return when they were stopped. This has been ongoing since april, and still on abx, not fully controlled. It is not a quick fix, but wasting time going down the wrong path could cost him. Like I said, this seems HIGHLY suspicious for PANDAS/ PITAND. If you can't find a dr in your area, some of them will do phone consults. Best wishes to you!

[stateless]

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Edited May 29, 2013 by stateless

[Priscilla]

Yes, consult a PANDAS dr ASAP- neg strep culture DOES NOT rule out PANDAS, NEITHER DOES non elevated strep antibody titers. PANDAS is a clinical diagnosis. PITAND and PANDAS go hand in hand, there is evidence that this reaction can be caused by other infections, virus... As I believe is the case w/ us. The recent throat issue is a concern for strep though, but again, this is a clinical diagnosis. There is research testing at OK university for a lab called Cam Kinase II. You may search the web to see if you could send blood in for this test (kits are obtained from the university, it is called a Cunningham's test. It may give you some back up in the diagnosis. If you can't find a PANDAS dr, find a pediatrician willing to rx antibiotics. Typically used are Augmentin, azithromycin, penicillin, and my daughter intially responded well to Omnicef.

The family may still pursue the other consults, but it is worth ruling PANDAS out with research and antibiotic therapy. It is so important to arm yourself with information, and don't back down if you feel this is really what is happening to this child. It can be very tough to find Drs willing to acknowledge PANDAS here, I hope you have success in the UK. You can check thepandasresourcenetwork.com or pandasnetwork.org or Web pediatrics has a page on PANDAS/ PITAND. It wouldn't hurt to print info, and highlight matching symptions to take to Dr consults. This forum is a GREAT resource for information and support. The family will NEED support from other families dealing with this. It can be very traumatic, we grieve the loss of our "true child". There are success stories to keep us focused on the brigther side as well. Please keep us updated.

[stateless]

Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk)  eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives.

The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.

Edited May 22, 2018 by stateless

[Priscilla]

Funny I just got a notification from this response.  I have not been on this forum in a very long time.  I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once  over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation  of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day. 

[bobh]

Great news, for both of these cases.  Priscilla, we feel that for us, puberty itself made the most difference, more than abx, supplements and such.  But, there are also some that get dramatically worse at puberty.

[LordChallen]

2 hours ago, bobh said:

Great news, for both of these cases.  Priscilla, we feel that for us, puberty itself made the most difference, more than abx, supplements and such.  But, there are also some that get dramatically worse at puberty.

bobh,

Any insight on "why" puberty influences pandas? The body is complex and I know that there are literally thousands of changes going on, but has anyone narrowed in on some ideas about why? Like boys and girls have different hormones changes, but are they both effected equally?

Does anyone know about this? I haven't even begun to look into it. My daughter is 10, but honestly, I think some things got worse with me at puberty. Like shortly after, about 15 to 17 my face turned very red, something akin to a mast-cell activation. But the red face happened at the same time I had a near-death episode by nearly drowning. When I was cleaning myself up, everyone kept commenting on my why was my face red, and it has never gone away. It has lessened some in the last 30 years, but still red.

Edited June 1, 2018 by lordchallen

[bobh]

I have no legitimate insight on puberty changes, and have also not seen or heard any sensible explanation.

But I can speculate!  Speculation is dangerous, so "reader beware", lest you buy into something that doesn't deliver.

I know of someone with what was thought to be fibromyalgia (but is now thought to be lyme) that has had debilitating symptoms for many years (7+).  The only respite she got from these symptoms (and the respite was dramatic, because the symptoms were) was when she was pregnant with her first child.  It lasted until after she stopped breast feeding.  But that respite never happened with the second child.  If they could figure all that out, that could be useful.

I have heard of other folks getting new problems with pregnancy, including them not resolving after the pregnancy was over - so it seems that there are all kinds of possibilities with hormonal changes.