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Puberty and Pandas


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25 replies to this topic

#1 pandakid11

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Posted 26 March 2012 - 08:16 AM

Hi
My 11 year old has PANDAS and I was wondering what the success rate is of it going away at puberty? Would being on antibiotics until then be wise? If yes, which ones? I am nervous about going the IVIG route since it doesn't seem to be successful after age 10 and it is extremely expensive, even if insurance covers 85%. Plus, there appears to be risks. We are lost.
Symptoms of son:
1) Nausea - never goes away
2) Headaches
3) Shaking - Sometimes to the point of flopping all over
4) Personality will change from sweet and nice to anger and rage
5) Pain all over
6) Pale looking and weak
7) Neck pain
8) Anxiety and Terror - just calling his name can result in terror look and rapid heartrate. (Severe startle response).
9) Crying episodes
10) Irritable. Seems like everything you say is taken wrong when he is in the alternate personality.

Does this all sound familiar? What should we do? We are literally lost. Thanks


#2 dut

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Posted 26 March 2012 - 08:30 AM

Hi - have you explored other infections such as lyme, bartonella etc. I'm no expert wrt other triggers but the pain would make me think that maybe triggers other than strep might be at play. I would also post on the Lyme forum (where some PANDAS folk end up) for their opinions too.

Good luck...
DD9 dx'd 2008 1 month after 1st recognised symptom - PITANDS
DS5 dx'd 2009 1 year after first symptoms also PITANDS

#3 bulldog24

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Posted 26 March 2012 - 09:09 AM

Agree. Check into lyme, bartonella and babesia

Lyme can cause pain,, bart can xause nausea, and babesia can cause paleness

#4 philamom

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Posted 26 March 2012 - 09:35 AM

My daughter to a T - except for the shaking. Although, her one foot constantly shakes.

I strongly agree with checking for lyme and possibly co-infections, although I believe PANDAS can cause these symptoms as well. If you decide to look into lyme, I suggest asking for advice on the lyme forum. The standard elisa testing has a high false negative rate.

My daughter is dealing with lyme, bartonella, and PANDAS (or PANS).

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig


#5 llm

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Posted 26 March 2012 - 10:01 AM

I'm sorry - I know you wanted to know about puberty and long term abx. It's just that to those of us whose kids started on the Pandas trail and ended up having lyme or bartonella or babesia, your list seems way more weighted toward a tick infection than strep. You don't mention OCD at all, which is a symptom shared by most Pandas kids. So I have to beat a dead horse and recommend lyme testing as well - beyond the traditional tests most doctors do. But enough on that - if you want more info, please post on the lyme forum and many of us same moms will share more over there.

As for your questions, for a Pandas kid, long term antibiotics is thought to be helpful for two reasons. First, it can protect against a future infection that could trigger a new flair. Second, some antibiotics may be immune-modulating, meaning they can reduce an autoimmune response. So yes, long term antibiotics would be a good thing to consider.

Second, I think IVIG has been helpful for many Pandas kids but it isn't viewed as a cure. Doing the procedure is thought to help reduce the severity of an episode and it may strengthen the immune system. But I don't know of any research to show that one or even several IVIGs can cure Pandas. And it is not a risk free procedure. So I would recommend research and a gut check before making that decision. Some feel it's a slam dunk thing to do and others are less certain. As for whether it's less effective after a certain age, I don't know of any research to suggest that's true. Very little research on IVIG and Pandas exists and most of what you hear is anecdotal. I know of no research that has looked at age as a factor of success. As for whether any doctor has experiences to support this notion, I think doctors end up seeing self-fulfilling prophecies. Those who feel xyz procedure will not work for abc patients end up not seeing a lot of abc patients. Those abc patients go to a different doctor who then sees a different skewed picture in his patients. I think you need to base your decision on your own child and your own sense of what has or hasn't worked thus far.

As for puberty, I've read a theory that Pandas may become less severe as you mature because your immune system changes as you age. When you're born, your thymus - the organ that makes T-Cells - is about the size of your fist. As you hit puberty, it starts to shrink and atrophy. It continues to make T-Cells thru your life, but is much less active after puberty. So one thought is that a maturing immune system would be less auto-reactive. But as Pandas becomes better known to the public, I think more adult candidates are surfacing and I'm not sure it will always be considered a pediatric disease.

#6 powpow

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Posted 26 March 2012 - 10:09 AM

Do you have a pandas doc?
Your description is very much like one of my kids, now 14, started at 10. Lyme was a factor, but there were also major psychiatric symptoms that lyme treatment did not help.
Pandas treatment of steroids, pex and ivig helped.
I am not telling you to ignore lyme,( I am ducking from the flying tomatoes being hurled at my post), but can you give some details? What, if anything, have you tried to treat pandas yet?

Edited by PowPow, 26 March 2012 - 10:10 AM.


#7 llm

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Posted 26 March 2012 - 10:13 AM

PowPow - I save all my rotten tomatoes for my voodoo dolls named Roger and Harvey. None for you :)

#8 tpotter

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Posted 26 March 2012 - 11:08 AM

Hi
My 11 year old has PANDAS and I was wondering what the success rate is of it going away at puberty? Would being on antibiotics until then be wise? If yes, which ones? I am nervous about going the IVIG route since it doesn't seem to be successful after age 10 and it is extremely expensive, even if insurance covers 85%. Plus, there appears to be risks. We are lost.
Symptoms of son:
1) Nausea - never goes away
2) Headaches
3) Shaking - Sometimes to the point of flopping all over
4) Personality will change from sweet and nice to anger and rage
5) Pain all over
6) Pale looking and weak
7) Neck pain
8) Anxiety and Terror - just calling his name can result in terror look and rapid heartrate. (Severe startle response).
9) Crying episodes
10) Irritable. Seems like everything you say is taken wrong when he is in the alternate personality.

Does this all sound familiar? What should we do? We are literally lost. Thanks

'


I agree with the others. These are EXACTLY the same symptoms my DS (now 16) has had off and on throughout the years. The nausea always went away with the correct abx (ASO titers always went up with onset of nausea, and when we finally treated it properly, it would go away. Now, when nausea starts to return, we suspect strep.)

The other symptoms sound like a mix of strep, possibly mycoplasma pneumonia (can cause the rages, as can bartonella), possibly erlichiosis (neck pain), and on and on.

BTW, mycoP, baronella, erlichiosis are all co-infections of lyme.

I am telling you this, because it took us about 6 years to figure out that it wasn't only strep in our case, and my DS has had exactly the same set of symptoms, and even more. It's important to find out what other infections may be at play, because until you get rid of all the infections, (or at least under control), the IVIG/PEX route may help, but the symptoms will keep coming back every few weeks.) Keep in mind that this is an autoimmune condition, so the person is susceptible to multiple infections.

PM me if you want additional information about what to look for, etc.

#9 momwithocdson

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Posted 26 March 2012 - 12:47 PM

As a mom of a DS who's biggest and first identified PANDAS exacerbation appeared at age 12, I'd definitely say that I wouldn't count on puberty in and of itself providing a "cure." He's 15 now, and without abx, therapy and other interventions, his slow slog through puberty would be even slower and harder, I'm certain.

But more what I wanted to say here is that your list of primary symptoms/behaviors doesn't read to me like a classic PANDAS presentation, so when the other moms familiar with other triggers like lyme and co-infections give you the benefit of their experience, I think I'd pay some heed. At 12, we had general anxiety, moodiness, separation anxiety, troubled digestion and trouble sleeping, but the headaches, shaking and all-over-pain (in the joints?), paleness and weakness you cite seem indicative of something potentially above and beyond.

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#10 Iowadawn

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Posted 26 March 2012 - 02:10 PM

A PANDAS turned Lyme/PANDAS mom checking in here. Ditto checking into the Lyme/co-infections. Boy, those symptoms make me cringe thinking of our experience. Don't discount the IVIG. Dawn

Edited by Iowadawn, 26 March 2012 - 02:12 PM.


#11 pandakid11

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Posted 10 August 2012 - 09:43 AM

Our LLMD said he is not picking up lyme during muscle testing. Would you do that expensive test anyways?
We are so frustrated. The bizarre thing is that he can have days where you wouldn't know he was sick. He
perked up for his grandparent visit and then started shaking at the end, so the Grandparents concluded it
was our fault somehow.

#12 beeskneesmommy

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Posted 10 August 2012 - 10:37 AM

Got to say that looking for co-infections is a must after reading your description. As for onset of puberty decreasing symptomology, I have had several specialists tell me that this is entirely possible, the concern for us being, however, the onset of PANDAS at such an early age (prior to age 2.5).

#13 jag10

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Posted 10 August 2012 - 11:44 AM

I think puberty helps......but appropriate treatment sets Puberty up for success. My dd12 will be 13 in December, menses began last Sept. She looks so different in so many ways! She never has had the pains, nausea or headaches and does not have Lyme/confection involvement outside of myco-p. She began IVIG when she was 10. By the time she was 11, we realized one IVIG and done must be a pipe dream for really young kiddos or fresh onset, because it was not enough for her even though it helped greatly.

I've read people document that the onset of menses shuts off pandas like a faucet. I'm not sure I would describe it that way. Swedo also says 98% of 12 y.o. are immune to strep, so there is another timing in the puberty range kiddos favor. But there are lots of bacteria and virus out there, so taming the over-reaction of the immune system is key.
When you refer to expensive test, what do you mean? Most people who have pursued Lyme don't put a lot of faith in the testing, but the LLMDs treat on clinical diagnosis of symptoms. Does your LLMD think your symptoms indicate Lyme but due to the muscle testing, it must not be so? That seems contradictory to most experiences I've read about.



#14 beeskneesmommy

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Posted 10 August 2012 - 01:42 PM

JAG10, I like the way you say that appropriate tx 'sets kids up for success' at puberty. I am hoping that IVig will help my kiddo get over the fence because we are being denied by Cigna and we are likely to have difficulty managing to pau for more than 1 IVig at this point. My son is very young, almost 6. He has been treated with abx since he was 2.5 when we caught on that this was what he was getting...over and over. However, they were only 10 day runs. At age 4 he had a T&A which set off a major acute onset of PANDAS symptoms, at which time he started abx daily. Took us the better part of a year to get things under control. A year ago, he started Augmentin and Azith, daily, which has done wonders, but still, he has responses to other sick kids and exposure, some of them pretty bad. He always comes back, though. So, I guess my question is, do you think we have been treating enough to help his "set up" for success so far and do you consider him "young enough" so that 1-2 IVigs might cause a significant improvement?

#15 llm

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Posted 10 August 2012 - 01:57 PM

Our LLMD said he is not picking up lyme during muscle testing. Would you do that expensive test anyways?
We are so frustrated. The bizarre thing is that he can have days where you wouldn't know he was sick. He
perked up for his grandparent visit and then started shaking at the end, so the Grandparents concluded it
was our fault somehow.


Has your LLMD been treating for lyme or co-infections? If so, for how long? Was there any kind of herx response to treatment?
Lyme and co-infections can seem to wax and wane. Someone on the lyme forum posted about this a few weeks ago. The bacteria have life cycles that make symptoms ebb and flow. Your son's response to treatments is just as telling as any test.

On the tests - that's a personal decision. Lots of pros and cons. Re-reading your list of symptoms, I'd also ask your LLMD about mold and maybe run some of the tests for inflammation listed here http://www.surviving...nosis/lab-tests especially the C3a and C4a immune complexes. Here's an article that explains the possible significance and these tests are covered by insurance http://www.jacemedic...yme disease.pdf




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