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New to PANDAS...need insight, help, support


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Hello! My name is Tiffany. I am a mom to 3 kiddos (2 boys and a girl), I am 28 years old. Myself and my husband and our kiddos live in Washington state.

 

Where to even begin?? I suppose it’s best to start from the beginning. ..so that is where I will start!

 

Isaiah is our middle child. He was born on Christmas day in 2005. He was such an easy baby and perfect in every way. As he grew he continued to be so laid back, independent and a completely happy child!! He was always doing anything to make us laugh and didn’t get phased by much of anything. He was one of the most easy going children I had ever met!

 

October 2009 (3 ½ years old) Isaiahs first time with strep throat. This was also a month after preschool started for him. He became EXTREMELY emotional and anxious. I took it that he was nervous about starting school and having a hard time adjusting, which looking back now is silly considering he was never that way before. In the course of 7 months he had strep throat 6 times and scarlet fever once. He had high anxiety throughout that year of school, but also had strep for the majority of the year. He had a tonsillectomy in June (4 ½ years old). Shortly after his anxiety heightened…he was afraid to go on an airplane, talking about it would put him in tears, and that was strange considering we had just returned from a trip to California by plane in May and he had no problems with it. He also became terrified of carnival rides, which were always his favorite in the past. Again, I took this all as being “normal” for his age?!

 

Through that summer (2010) he did pretty well, until school started, then his emotions started taking control again, he didn’t want a new teacher, was scared to be in a new class (all same kids though as it was the same preschool) and crying frequently. He also quit eating for awhile. Apparently I had told him at one point that you have to eat to get big. So he decided to quit eating because he did not want to get big and die. He would also get anxious when we separated, he would tell me, “Mommy, I love you so much, please always remember that.” As if he would not be here to tell me?! It scared me horribly, and still does. Then he started getting better again, I saw some of my “old” Isaiah coming out, he would dance just to make us laugh, crack jokes, and just be silly.

 

Fast forward to a couple of months ago. He quit sleeping in his bed, he said that he saw a commercial a long time ago at his nana’s house that kids died in their bed, so he now will only sleep on the floor. He does not eat barely anything still (he is maintaining his weight however so that is good). And he has started showing some more OCD tendencies and separation anxiety. When anyone has to go anywhere, either dropping his brother off at school, his dad going to work, me going to the store, nana leaving our house, Isaiah MUST wave and say “love you good bye” until he feels right. I have had to video tape it to show his brother after school if it was not done enough, and there has been some major meltdowns if it is not done the right way. He has started needing to know numbers. Yesterday I went to the store and he wanted to know how many items I was purchasing, I told him 3 (because that was the plan) I came home with more and he was upset that I lied to him. Today he sneezed, I told him bless you, he explained that I needed to say it two times.

 

Last week I started looking online because he has been sleeping a lot (which he does when he is sick, and had mono a few months ago), I was also looking up OCD symptoms and stumbled across an article on PANDAS. I called the doctor to see about getting his iron levels checked since he has been so fatigued again. They asked us to come in, while I was there I mentioned coming across the article and some of Isaiah’s symptoms. I know our pediatrician thought I was crazy, however he listened to me and said that since we were doing blood work anyhow for the fatigue that we should check his ASO titer (level of strep), although he was fairly positive that wouldn’t be the case. So imagine my surprise when the doctor called me the next day and informed me that Isaiah’s ASO titer came back at 580 (normal range for our lab 0-250). He feels that it is a good possibility that Isaiah does have PANDAS. He started him on Cephalaxin 500mg twice a day for 2 weeks, than we will go back in to see him.

 

I am not sure what to do from here or where to go?! Does this sound like PANDAS? Are we on the right track??

 

I have gained so much insight reading some of your posts and researching this, however it is hard for me to grasp that this is what he actually may have, and what to do from here.

 

If you've gotten to this point, thank you so much for reading, and any help/advice/support you may be able to offer!

 

Tiffany

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Tiffany - I read the whole post - from top to bottom and I would say you are in the right place. Welcome.

 

Look through the pinned thread at the top of this page ("helpful threads for PANDAS"). There is much information in there about ASO titers, doctors, and other resources.

 

Also, please realize that strep is just one infection that can trigger an exacerbation in our kids. Any type of inflammation, including allergies, mycoplasma (walking pneumonia),lyme, and viruses (such as mono) can trigger an exacerbation. This is a recent article that is a good review of PANDAS and also talks about the role of other infections with PANDAS/PITAND http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf

 

It would probably be a good idea for you to keep some sort of objective journal of your son's behaviors. Something simple, like recording his obsesive/compulsive comments or any other unusual behaviors. That will help you to see if the antibiotics are helping.

 

Keep reading and please let us know how the antibiotics work.

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Hey kimballot---I keep seeing posts about allergies causing symptoms....could that be the "only" thing involved ever in pandas? I just wonder why my dd has not stopped with symptoms in over a year (well, since tics started....the ocd'ish stuff, etc. has been longer).

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THANK YOU SOOOO MUCH!!! I am so overwhelmed with all of this, it means alot that you would take the time to read my story and comment! I will definately keep reading and keep you all posted on this round of antibiotics! I hope they work, we leave the day he finishes his antiobiotics for a plane ride (nervous) to California, including a trip to Disneyland. I am hoping that the antibiotics will work for him and hold him through our trip regarding his anxiety!

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Tiffany,

Sounds like you're on the right path and with a ped that actually thinks so too is great! Just read all you can about PANDAS, see if there's any improvement with the antibiotics, try some ibuprofen, see if it helps, then take it from there. My ds 8 is also on cefalexin, he started twice a day, after a few months we lowered to three times a week prophylaxis and when PANDAS flares goes back to twice/day. You may see a gradual, slow improvement over several months (as in my son's case) or if not, then you can explore IVIG as an option, but you've made the right start! Good luck.

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THANK YOU SOOOO MUCH!!! I am so overwhelmed with all of this, it means alot that you would take the time to read my story and comment! I will definately keep reading and keep you all posted on this round of antibiotics! I hope they work, we leave the day he finishes his antiobiotics for a plane ride (nervous) to California, including a trip to Disneyland. I am hoping that the antibiotics will work for him and hold him through our trip regarding his anxiety!

If the antibiotics are working when you leave for disney, you may want to ask the doc for a few more days of ABX. In my experience, doctors do not want their patients to have a relapse when out of town, so the doc may be willing to extend it a few days to be safe.

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Hey kimballot---I keep seeing posts about allergies causing symptoms....could that be the "only" thing involved ever in pandas? I just wonder why my dd has not stopped with symptoms in over a year (well, since tics started....the ocd'ish stuff, etc. has been longer).

 

Eljomom - I don't know if allergies could be the only thing involved. If they are, then it is probably a direct result of allergies - not an autoimmune response.

 

I think for it to be PANDAS/PITAND there has to be an antibody that crosses the blood brain barrier and attaches to basal ganglia cells. The idea is that inflammation may be the thing that allows these antibodies to cross - and allergies can increase inflammation. Therefore, kids with PANDAS/PITAND could have exacerbations of neuropsych symptoms with allergy flare ups.

 

Anyone else have any thoughts on this?

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Tiffany,

Sounds like you're on the right path and with a ped that actually thinks so too is great! Just read all you can about PANDAS, see if there's any improvement with the antibiotics, try some ibuprofen, see if it helps, then take it from there. My ds 8 is also on cefalexin, he started twice a day, after a few months we lowered to three times a week prophylaxis and when PANDAS flares goes back to twice/day. You may see a gradual, slow improvement over several months (as in my son's case) or if not, then you can explore IVIG as an option, but you've made the right start! Good luck.

 

Thank you!

 

THANK YOU SOOOO MUCH!!! I am so overwhelmed with all of this, it means alot that you would take the time to read my story and comment! I will definately keep reading and keep you all posted on this round of antibiotics! I hope they work, we leave the day he finishes his antiobiotics for a plane ride (nervous) to California, including a trip to Disneyland. I am hoping that the antibiotics will work for him and hold him through our trip regarding his anxiety!

If the antibiotics are working when you leave for disney, you may want to ask the doc for a few more days of ABX. In my experience, doctors do not want their patients to have a relapse when out of town, so the doc may be willing to extend it a few days to be safe.

 

I was wondering if I should maybe do that! I will see how it goes this week with the ABX, then maybe I will call and ask. Especially since he wanted to see Isaiah back in 2-3 weeks, but that is right during our vacation, so I couldn't get him in until after. Thank you!

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Okay...I am officially brain-dead. I go to bed thinking about this, wake up thinking about this, and pretty much it intrudes on every breath I take each day. Her Cam K and anti-neuronals were high, so i think that means autoimmune? OR does it mean inflammation? I know I should know this. I thought the pandas issues were from the inflammation IN THE BASAL GANGLIA due to the auto-antibodies. That inflammation in the brain causes the dysregulation of dopamine, etc..so I am wondering how inflammation elsewhere in the body (NOT directly in the b.g./brain) causes symptoms???

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Okay...I am officially brain-dead. I go to bed thinking about this, wake up thinking about this, and pretty much it intrudes on every breath I take each day. Her Cam K and anti-neuronals were high, so i think that means autoimmune? OR does it mean inflammation? I know I should know this. I thought the pandas issues were from the inflammation IN THE BASAL GANGLIA due to the auto-antibodies. That inflammation in the brain causes the dysregulation of dopamine, etc..so I am wondering how inflammation elsewhere in the body (NOT directly in the b.g./brain) causes symptoms???

 

Eljomom-

 

The blood vessels in your brain have very tight walls. There are not many things that can pass through the vessels into the brain. This protects the brain from lots of toxins. It is also the reason that many medications in the bloodstream do not go into the brain. This is called the blood-brain-barrier.

 

One of things that does not normally go into the brain is antibodies. Antibodies should stay in the bloodstream and should not cross over into the brain.

 

It is believed that in PANDAS antibodies somehow cross from the bloodstream into the brain. I think (and I could be wrong here) that the current thinking is that once these antibodies cross they attach to nerve cells in the basal ganglia. The antibodies do not destroy the basal ganglia cells, but they do make the basal ganglia cells produce abnormal levels of Cam Kinase II, which eventually affects dopamine levels.

 

Some people have seen inflammation in the basal ganglia on MRI scans, which may be due to all of this activity from the antibodies.

 

Now the question is - how do the antibodies cross over the blood brain barrier? Why do they cross in kids with PANDAS and not with other kids? What makes this "breach" in the blood-brain barrier?

 

My understanding of this (and, again, this could be way off), is that no one has exact answers to this, but it is thought that this breach may be due to general inflammation, which causes the blood vessels to become inflamed - thereby weakening their walls and allowing the antibodies to cross over.

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Wow, it sounds (imo) like PANDAS; however, my kids haven't even been officially dxd yet. But from what you are explaining, sounds like you hit the nail on the head! I just joined here last week and these ladies are SO supportive and full of info (which I am lacking)! Just keep doing what your instincts tell you. BTW, that is good that your ped is working with you even though he didn't believe you at first. Mine, whom I thought would work with us, sluffed us off to a neuro, which from what I have heard on here don't always help much with the PANDAS either. Anyhow, welcome and glad to have you on board! i hope you and your son and family get him the much-needed treatment he deserves!

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kimballot----thanks! I can always count on you to give me exactly what i'm looking for....a very detailed, educated explanation that speaks my language. my only other question then, is whether "once these antibodies cross they attach to nerve cells in the basal ganglia" means they attach and don't leave? Is that why some kids are chronic (like my dd)? That's what I'm really trying to figure out, why my dd doesn't "clear" on abx and have periods of no symptoms between exacerbations. And then, what works best for these chronic kids? Does IVIG work better with kids who clearly exacerbate and remit vs. chronic? Same with steroids? And once you use steroids, I wonder if there wouldn't be a "rebound effect" with the whole thing? Especially in chronic cases?

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tiffany,

 

Glad you stumbled upon our little group here - it's a very supportive community that's always willing to share insight and experience.

 

With that, let me add my two cents, my son was very young when dx, so I can totally relate to thinking it was all just a phase, or age appropriate - but remember, you know your child best and know when something is just not right.

 

I would talk to your doctor about getting at least a 30 day rx of abx. In most kids, it takes more than 2 weeks, especially if he's been untreated for some time. If your Dr. won't agree to that, ask if he gets worse on your trip if you can call and have an rx called in to CA.

 

I agree with keeping a log - we kept a very detailed excel spreadsheet for over a year that helped immensely with dx and with noticing patterns of behavior that allowed us to "see" strep before the big bad hit. It's based on a methodology that another parent on the board (Buster) came up with. If you'd like a copy, just PM me and I'll pass it along.

 

One trick that I haven't seen mentioned yet is Motrin/Ibuprofen. In many PANDAS kids, a standard dose of Motrin will help reduce the inflammation which will reduce their immediate symptoms. It's magic for our son, and has helped us all get through some very rough days.

 

Good luck, I hope that some of this information helps!!

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kimballot----thanks! I can always count on you to give me exactly what i'm looking for....a very detailed, educated explanation that speaks my language. my only other question then, is whether "once these antibodies cross they attach to nerve cells in the basal ganglia" means they attach and don't leave? Is that why some kids are chronic (like my dd)? That's what I'm really trying to figure out, why my dd doesn't "clear" on abx and have periods of no symptoms between exacerbations. And then, what works best for these chronic kids? Does IVIG work better with kids who clearly exacerbate and remit vs. chronic? Same with steroids? And once you use steroids, I wonder if there wouldn't be a "rebound effect" with the whole thing? Especially in chronic cases?

 

EljoMom -

 

You are asking the same questions that the researchers are asking now. We don't know why the exacerbation sometimes ends a few weeks after the infection and why in some cases the exacerbation continues. From what I read in this forum it seems like the first few exacerbations end with antibiotics, but as the kids get older and have more exacerbations (or perhaps go unrecognized and untreated like my son was for awhile)... then it seems to me that something needs to be done to stop the autoimmune process. That is just my observation - not anything I have read in a research study. That is why so many people say first to get rid of infection and then do steroids or IVIG or plasmapheresis if the exacerbation continues. I think that is also why sometimes IVIG alone does not work if there is lyme disease or another hidden infection - because the infection and inflammation are still there.

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The support that I feel from this group already, amazes me! Thank you so much!! This is just what I need right now!! PANDAS is consuming my every thought...it is all I want to talk about, read about, think about...and no one quite understands like you ladies!! I appreciate you opening your arms and welcoming me and Isaiah into your community, and I look forward to getting to know you all better! :)

 

I will for sure be calling the dr. to see about continuing the ABX, or making sure we can get a RX while in California (great idea). And the ibuprofen tip is great!! I always try and keep some on hand anyhow, in case any one of the kids gets a fever or something!!!

 

I'm trying not to be too optimistic....but Isaiah's "goodbye" to my oldest son this morning when he went to school was much shorter than usual, and produced no tears! I am hopeful!!

 

Thank you all again, I appreciate it so very much!

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