Monthly exacerbations?

[matis_mom]

Hi all,

Haven't posted in a while... Baby was born two weeks ago, baby girl, everything went great, thanks all for the good wishes.

 

So now we are back to reality, and I'm feeling so disappointed ds12 is sliding back again This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr!

 

Matias is going through scrupulosity attacks, worrying about having touched this or that, his eyes look swollen, his knee is hurting again, and his wrist looks swollen.

 

So, has anyone else experienced this monthly cycle thing? Am I going crazy? Or shall I say "lunatic"

I was just thinking, what in nature follows a monthly cycle... the moon

 

I just don't know what else to do. The pediatrician doesn't totally agree with the strep connection. He said he would not run a stool test on my daughter unless she had diahrrea. They have swabbed her but she has been negative in Jan and so now unless she shows symptoms I'm not going to get anywhere trying to prove we have a carrier.

 

And then again, he could be getting exposed somewhere else, who knows. I just feel this is such a losing battle, you can't even see the enemy!

 

I called today to make an appointment with the infectious disease specialist but got the answering machine all day. I shall insist tomorrow and see if they are any help.

 

I might have to go back to our initial doctor... even though she seemed to be going in a million different directions, she did test for everything that might be affecting him.

 

Well, that's it. I am sorry to be so negative tonight, I wish there was some definite test for carriers...

 

Isabel

[peglem]

Remind me, is he on abx?

 

Oh, wow, a sweet little baby girl- and a mommy with a lot on her plate and getting very little sleep. Do you have some help?

[helpmyson]

Hi all,

Haven't posted in a while... Baby was born two weeks ago, baby girl, everything went great, thanks all for the good wishes.

 

So now we are back to reality, and I'm feeling so disappointed ds12 is sliding back again This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr!

 

Matias is going through scrupulosity attacks, worrying about having touched this or that, his eyes look swollen, his knee is hurting again, and his wrist looks swollen.

 

So, has anyone else experienced this monthly cycle thing? Am I going crazy? Or shall I say "lunatic"

I was just thinking, what in nature follows a monthly cycle... the moon

 

I just don't know what else to do. The pediatrician doesn't totally agree with the strep connection. He said he would not run a stool test on my daughter unless she had diahrrea. They have swabbed her but she has been negative in Jan and so now unless she shows symptoms I'm not going to get anywhere trying to prove we have a carrier.

 

And then again, he could be getting exposed somewhere else, who knows. I just feel this is such a losing battle, you can't even see the enemy!

 

I called today to make an appointment with the infectious disease specialist but got the answering machine all day. I shall insist tomorrow and see if they are any help.

 

I might have to go back to our initial doctor... even though she seemed to be going in a million different directions, she did test for everything that might be affecting him.

 

Well, that's it. I am sorry to be so negative tonight, I wish there was some definite test for carriers...

 

Isabel

 

 

I am here to say - I believe that you are not crazy in regards to the monthly pattern! My son had monthly fevers. I could mark it on the calendar. We had his tonsils out and his symptoms went away for a while. Now it seems that his OCD behaviors peak monthly. It is crazy. How could that be. I would love to hear someones explanation as to why that would be.

[peglem]

Well, lets see...if they were young ladies...but that can't be it. Wonder if its related to the length of time the antibodies stay active? Like with IVIG, they say about 4 weeks....but then, wouldn't they have to be exposed every 4 weeks for a very short time?

Dunno.

[dut]

Hi - congratulations on the birth of your daughter :-)

 

I'm no expert on anything and especially not Lyme but it's been getting some press on here lately and, if I remember right, it does cycle - so symptoms cycle with the life cycle of the spirochete, I believe. Not saying it's wot ur dealing with but thought it worth a mention. Lyme Mom on here seems very conversant with Lyme, perhaps you could PM her?

[thereishope]

Congrats on the baby! If his knees and wrist hurt and are swollen, have you discussed possible reactive arthritis with the doctor? That is connected to strep. It's a way to leave the communication open and physical proof of strep to the dr.

[Kayanne]

This could be really simplistic....but what is the life cycle of a cell? Does it all depend on the type of cell? If you have intracellular strep, then when the cells die, could there be an influx of strep or strep toxins into the body/system, causing an increase of symptoms.

 

Okay...if you know that this is happening every month, do doctors know what types of cells have a monthly "life cycle"...could this help pinpoint an infection....

 

Alright....is it really obvious right now that I have no idea what I am talking about?.... !!!!

 

~Karen

[GatsMom]

Hi all,

Haven't posted in a while... Baby was born two weeks ago, baby girl, everything went great, thanks all for the good wishes.

 

So now we are back to reality, and I'm feeling so disappointed ds12 is sliding back again This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr!

 

Matias is going through scrupulosity attacks, worrying about having touched this or that, his eyes look swollen, his knee is hurting again, and his wrist looks swollen.

 

So, has anyone else experienced this monthly cycle thing? Am I going crazy? Or shall I say "lunatic"

I was just thinking, what in nature follows a monthly cycle... the moon

 

I just don't know what else to do. The pediatrician doesn't totally agree with the strep connection. He said he would not run a stool test on my daughter unless she had diahrrea. They have swabbed her but she has been negative in Jan and so now unless she shows symptoms I'm not going to get anywhere trying to prove we have a carrier.

 

And then again, he could be getting exposed somewhere else, who knows. I just feel this is such a losing battle, you can't even see the enemy!

 

I called today to make an appointment with the infectious disease specialist but got the answering machine all day. I shall insist tomorrow and see if they are any help.

 

I might have to go back to our initial doctor... even though she seemed to be going in a million different directions, she did test for everything that might be affecting him.

 

Well, that's it. I am sorry to be so negative tonight, I wish there was some definite test for carriers...

 

Isabel

 

Over in the autism world there are so many families who see consistent and predictable flares monthly. I never followed those threads far because its not a problem we have but I do know they believe it to be parasites of some kind and treat accordingly. I have a friend locally with a dd10 with PANDAS (not autistic) who also has the monthly fevers. Her care is shifting from a DAN! (the one we used) to Vanderbilt's Neurology Department in the next few weeks, so it will be interesting to see if that organization has something new to add.

[Megs_Mom]

Congrats on the baby! If his knees and wrist hurt and are swollen, have you discussed possible reactive arthritis with the doctor? That is connected to strep. It's a way to leave the communication open and physical proof of strep to the dr.

Have you had his ANA levels tested? With physical joint pain, I agree with above - I'd also be double checking strep, RA, and Lupus. We had a really high ANA on every test for 18 months - and now with antibiotic treatment, that inflamatory marker is finally dropping, right in line with her remission from PANDAS.

[FallingApart]

I don't have an explanation for you. However, we have the dame situation over here. EVEN with IVIG. I was thinking that it was because it was winter and she is exposed to everything. And also because we believe her sister is a strep carrier. But, it is interesting to see that you see the same situation and that they see montly situations in the AUtism world as well.

 

Now, what do we do with this info? Like you, I am going nuts with this constant cycle that doesn't seem to get any better...

 

Congrats on the baby. I can only imagine hoe full your plate must be!!

[matis_mom]

I don't have an explanation for you. However, we have the dame situation over here. EVEN with IVIG. I was thinking that it was because it was winter and she is exposed to everything. And also because we believe her sister is a strep carrier. But, it is interesting to see that you see the same situation and that they see montly situations in the AUtism world as well.

 

Now, what do we do with this info? Like you, I am going nuts with this constant cycle that doesn't seem to get any better...

 

Congrats on the baby. I can only imagine hoe full your plate must be!!

Thanks all for the congrats! I'm happy to report baby is doing great and I'm feeling energetic enough to hit the ground running with this PANDAS thing.

Just to recap and answer some of the questions, DS12 is on Augmentin XR 1000mg twice daily. So, he should be covered as far as strep goes (unless we are on the wrong abx!!!) The doctor does believe he has either Reactive Arthritis or Juvenile Rheumathoid Arthritis, and they had him on a pretty high dose of Plaquenil. We tapered it down this last month, and so we have the joint pains/swelling again.

 

I believe ds12 is not getting re-infected, just re-exposed and this revs up his immune system enough for some of the symptoms to come back (although he is nowhere near as bad as he was in the beginning). My dd7 was the culprit on Nov, Dec, and Jan, but now she seems fine (maybe I should take her in again...) and he's going bonkers.

 

This is a total "medical mystery" to me, we have an appointment now for Feb. 9th at Georgetown University were we will see an infectious disease specialist Dr. Latimer referred us to. I am bringing both of them in. I am hoping to get both their titers done before then (hoping the pediatrician will oblige), but we are getting two feet of snow today, and it will snow again next Tuesday, so I don't even know when I'll make it out of the house!

 

I am so hoping the Drs. come up with a real answer this time! But if not, we'll keep going. I am so sick of doctor's visits, bloodwork, etc, I was almost ready to give up, but a good friend help me put it into perspective... it's just a season. I'll give it all I've got now and maybe a year from now we'll be able to relax a bit...

 

Isabel

[fuelforall]

I am hearing a lot about seasonal reactions, bad PANDAS behavior in winter, exposure to too many ailments.

 

Maybe we should have a fund where our kids can be shipped to a camp in wintertime in California or the Southwest?

 

Honest, if my son got well in the autumn and I knew winter was coming hard, I'd be sorely tempted to isolate him.

[peglem]

I am hearing a lot about seasonal reactions, bad PANDAS behavior in winter, exposure to too many ailments.

 

Maybe we should have a fund where our kids can be shipped to a camp in wintertime in California or the Southwest?

 

Honest, if my son got well in the autumn and I knew winter was coming hard, I'd be sorely tempted to isolate him.

I live in Phoenix. My daughter gets flares and exacerbations in the fall and winter as well. I think schools are germ factories!

[lyme_mom]

Hi - congratulations on the birth of your daughter :-)

 

I'm no expert on anything and especially not Lyme but it's been getting some press on here lately and, if I remember right, it does cycle - so symptoms cycle with the life cycle of the spirochete, I believe. Not saying it's wot ur dealing with but thought it worth a mention. Lyme Mom on here seems very conversant with Lyme, perhaps you could PM her?

 

DUT,

 

Just read the thread and you are absolutely right! Lyme cycles every four weeks, it makes your legs or knees hurt and can cause swollen joints. Igenex is the preferred lab for the test but you must see an ilads trained specialist, NOT an infectious disease doctor, if you really want to be SURE it isn't lyme. I would not see an infectious disease doc for lyme ever.

 

Lyme Mom

[matis_mom]

I am hearing a lot about seasonal reactions, bad PANDAS behavior in winter, exposure to too many ailments.

 

Maybe we should have a fund where our kids can be shipped to a camp in wintertime in California or the Southwest?

 

Honest, if my son got well in the autumn and I knew winter was coming hard, I'd be sorely tempted to isolate him.

I live in Phoenix. My daughter gets flares and exacerbations in the fall and winter as well. I think schools are germ factories!

That kills my idea of sending him out to Phoenix to live with Grandpa!

 

Isabel