sudden nightmare with Gaby yesterday

[pmoreno]

I thought we were about out of the woods. She had been doing better recently - had 3 really good days. Had been giving her inositol along with B6 and lecithin, thinking that this was really helping - hardly saying anything about worrying lately. Had a great morning at school yesterday, was happy (I saw her and she was interacting with other kids, smiling). Less than an hour later they called me saying that during indoor recess in the classroom, while she was smiling and happy, she suddenly (unprovoked) started yelling at the air screaming that something was bothering her & being mean to her - they were white spots in front of her eyes. (She used to complain about this a lot last year at the beginning of everything) Lately (within the last 3 weeks she has been doing this again, but not to the extent as yesterday. She got very agitated and knocked over her desk, fell backwards and hit her head on the floor. They couldn't calm her at all. I took her to the ER and during the whole time there she continued with the constant questions in a very anxious way - Am I pretty? Is it OK? Are they gone now (referring to the spots)? Did they say sorry? are they nice now?, etc. and it went on non-stop until she feel asleep in the ER at 2AM. Her CT scan was normal. They didn't want to do an EEG - said they didn't have it available (go figure), her labs were normal. She woke up this morning with the same anxious questions and complaints (went on all day, but with less vigor than yesterday).

 

She is on azithro 500 mg weekly. Could it be that a child in her class might have strep and that she reacted to it, even while on the abx? If that's the case, how long would that antibody flare last? Wouldn't you think - just until removed from the child, or does it go on for days or weeks again after that?

 

Somebody help - I am losing it - can't think rationally anymore - and had to call in to work yesterday - I don't know how long that's going to last without my having to leave my job.

[Worried_Dad]

Hi, Pat:

 

I'm so sorry you're going through this again! We can relate. Cormac caught some kind of infection that lodged in his sinuses 1st week of January, and that triggered a pretty major symptom exacerbation again - worst we've seen since before IVIG. Really broke our hearts. Local doc prescribed 5-day course of zithromax for the sinus infection (on top of the daily augmentin), and the zithro cleared the sinus infection. He's stabilized some since then, but we lost ground; his OCD and tics are much worse again, and his cognitive abilities are shot (can't focus on anything, spaces out in the middle of a sentence). He's been out of school again for 2+ weeks.

 

So - from our experiences and yours - I think it's sad but true that our kids are still very, very vulnerable to anything that prods their immune system. It seems to trigger the autoimmune response, causes more basal ganglia inflammation, and aggravates their symptoms all over again. I guess I assumed the IVIG would at least minimize the risk of more damage... but seems like they're not out of the woods yet.

 

I can tell you it's reassuring to talk to folks like Shira or Leslee whose kids have fully recovered, but say they still saw symptoms for quite some time after IVIG or PEX treatment (like a year or more). Hang in there! I think Gaby and Cormac are on the right road; it just twists a lot and goes through some long, dark tunnels.

[peglem]

I don't want to scare you, but if I were you, I'd insist on a VEEG and try to catch one of these episodes on it. Something scary is happening to her all of a sudden and I'd want to see if its a seizure. Another thought-was this after lunch? Could there be a food trigger? I feel for you- this is scary business.

[pmoreno]

I don't want to scare you, but if I were you, I'd insist on a VEEG and try to catch one of these episodes on it. Something scary is happening to her all of a sudden and I'd want to see if its a seizure. Another thought-was this after lunch? Could there be a food trigger? I feel for you- this is scary business.

 

I did ask for an EEG because I wanted to be sure that it wasn't any seizure activity, but they wouldn't do it in the ER. It was after lunch and I certainly thought about everything she ate, but I bring her lunch from Whole Foods every day and make sure it is absolutely gluten free/casein free, a fresh pear, some juice (very low in sugar) - nothing that should have upset her. Today she occasionally pointed at the air and told something to stop or go away (the white lights or dots), but it didn't happen non-stop like yesterday. I didn't give her any inositol or B6 today or lecithin. Not sure if that has anything to do with anything, but I want to go back to just all the vitamins she was on before and nothing new for a while until I figure out what's going on. I still wonder if she wasn't exposed to some strep at school. I'll try to have her go back tommorrow and see what happens.

 

Thanks for your support.

[peglem]

I don't want to scare you, but if I were you, I'd insist on a VEEG and try to catch one of these episodes on it. Something scary is happening to her all of a sudden and I'd want to see if its a seizure. Another thought-was this after lunch? Could there be a food trigger? I feel for you- this is scary business.

 

I did ask for an EEG because I wanted to be sure that it wasn't any seizure activity, but they wouldn't do it in the ER. It was after lunch and I certainly thought about everything she ate, but I bring her lunch from Whole Foods every day and make sure it is absolutely gluten free/casein free, a fresh pear, some juice (very low in sugar) - nothing that should have upset her. Today she occasionally pointed at the air and told something to stop or go away (the white lights or dots), but it didn't happen non-stop like yesterday. I didn't give her any inositol or B6 today or lecithin. Not sure if that has anything to do with anything, but I want to go back to just all the vitamins she was on before and nothing new for a while until I figure out what's going on. I still wonder if she wasn't exposed to some strep at school. I'll try to have her go back tommorrow and see what happens.

 

Thanks for your support.

 

Oh, I meant to get the doctor to order a VEEG. You may have to hook her up for several days to get a reading during one of these episodes. Its a pain to do (we did one for 8 days). But, getting a reading during an episode is the only way to find out if the episode is a seizure. I wish I could help you more...I know how terrifying it is to see this happening to your child and not know what's causing it.

[greeneyes48072]

Hi guys, I'm so sorry to hear how hard things still are. I don't know who you have seen locally yet, but I just heard that there may be a local dr out of Farmington Hills that has treated PANDAS first hand. She wasn't in today, but I will be calling back on Monday to find out for sure. In my short experience with this so far, they claim they can help and come to find out once you get to an appointment, they have only "heard" about it. She works out of the Michigan Institute for Neurological Disorders. An Irene McCormick. I hope to hear soon that both your kids (pmoreno and worrieddad) are making the recovery you had hoped for going into the IVIG...

[amy s]

I am so sorry. Hang in there. I don't have any words of wisdom, but I think if it was my dd I, like you are, would be very suspicious that she was exposed to something in school. I would not be surprised if you got an update that someone in her class goes home with strep symptoms. Will the nurse contact you? This is so scary. I wish someone could help these kids permanently. All the uncertainty is too much...and the toll on the family is significant. My heart goes out to you.

[pmoreno]

Unfortunately, I don't think all parents notify the school when their kids have strep, and sometimes I don't think they know until it's too late. I remember last June Gaby had it and was asymptomatic. I only knew because Stefi was c/o sore throat & headache. They were both in the MD's office so when they rapid cultured Stefi and she was + they did Gaby too and I was surprised to find out she had it. I had put her on ABX right away at that time.

 

Yesterday afternoon wasn't too bad and today was OK most of the earlier part of the day, but a little girl was over (I don't think she has strep, but she was sniffling) By the time Gaby went to bed, she started having this cycling of crying hysterically (like a baby) and saying she wanted to go to the hospital and then smiling after a few minutes and talking about her stuffed animals, and then back again to crying. This lasted about 45 min., then it was a little tough getting to sleep - she was worrying out loud quite a bit. When she fell asleep, she was snoring (which is unusual for her - so I'm guessing she must have a little congestion). I know that when her last big episode started it was in August along with a mild upper respiratory infection. This is absurd - you can't protect your child from every little cold and sniffle and yet it seems like even these affect her horriblybecause they bring about such a strong immune response.

 

I talked to a colleague at the U today. He's a genetics pediatrician and is involved in research particularly with children on the spectrum. He recommended that I have her seen in the genetics department to test for metabolic and genetic disorders. He said that if anything shows up, it will be easier to get insurance coverage for treatment. He also thought it would be a good idea to be seen by immunology. I plan to do what he says. Additionally, I have a Feb. 3 appt. with a neurologist from Children's hospital in Detroit. They apparently have the most advanced spec scans which can show even minimal brain inflammation and from these scans you can gather a lot of information (especially about the specific location) which will tell you what's going on and may give some clues to the best treatment.

 

I'm just so stressed right now, worrying that she is sinking deeper into these periods of distress where it's difficult sometimes to bring her back (similar to how she was last year at her worst moments).

 

Dr. K wants me to get some titers drawn to see if there has been some recent exposure. I have to wait until Tuesday since our pediatrician isn't in on Monday in order to get a requisition for the labs to be drawn. I was really hoping that the IVIG would help to regulate her immune system so that these exposures wouldn't affect her as much and with the constant abx, it seems that that would help too. Now I wonder if anything really helps - maybe this just runs its course for however long it does (seems like most of the kids on here are so different - some say it lasts a good year, some even longer - that's with IVIG)

[Dedee]

I just had to say how sorry I am that you all are going through this. When I read your post, it just gave me such a sick feeling to know how much your family must be suffering. I can only imagine how stressed you are. I am sure your heart is breaking for your daughter as you struggle every day to find help for her. It sounds as if you are going through all the right channels and exhausting all resources. My goodness, can you imagine what this childs life would be like if she didn't have such determined parents. I always think about that when I read some of the posts on this board. What about the poor kids who never got help in the past, before anything was understood? Or even now, so many parents still just take the first doctors word and that's it. It is so awesome that she has you to fight for her. I know you are exhausted. I just wish I had something to offer that would help. I will pray for your family.

 

Dedee

[michele]

I am thinking of you. I know you are exhausted mentally from all this. You are a great mom and have been doing everything for your daughter. I pray you begin to see a positive change soon. It is so hard when there is no textbook treatment for this disorder. Have you read Kenneth Bock's book about the 4 A epidemics? I thought it was wonderful PANDAS was mentioned in so many places in that book. I hope we are getting into the textbooks more often. If only more Dr's could get on board on the proper treatment for PANDAS. All we can do is keep searching and praying for a cure. Blessings.

 

Michele

Unfortunately, I don't think all parents notify the school when their kids have strep, and sometimes I don't think they know until it's too late. I remember last June Gaby had it and was asymptomatic. I only knew because Stefi was c/o sore throat & headache. They were both in the MD's office so when they rapid cultured Stefi and she was + they did Gaby too and I was surprised to find out she had it. I had put her on ABX right away at that time.

 

Yesterday afternoon wasn't too bad and today was OK most of the earlier part of the day, but a little girl was over (I don't think she has strep, but she was sniffling) By the time Gaby went to bed, she started having this cycling of crying hysterically (like a baby) and saying she wanted to go to the hospital and then smiling after a few minutes and talking about her stuffed animals, and then back again to crying. This lasted about 45 min., then it was a little tough getting to sleep - she was worrying out loud quite a bit. When she fell asleep, she was snoring (which is unusual for her - so I'm guessing she must have a little congestion). I know that when her last big episode started it was in August along with a mild upper respiratory infection. This is absurd - you can't protect your child from every little cold and sniffle and yet it seems like even these affect her horriblybecause they bring about such a strong immune response.

 

I talked to a colleague at the U today. He's a genetics pediatrician and is involved in research particularly with children on the spectrum. He recommended that I have her seen in the genetics department to test for metabolic and genetic disorders. He said that if anything shows up, it will be easier to get insurance coverage for treatment. He also thought it would be a good idea to be seen by immunology. I plan to do what he says. Additionally, I have a Feb. 3 appt. with a neurologist from Children's hospital in Detroit. They apparently have the most advanced spec scans which can show even minimal brain inflammation and from these scans you can gather a lot of information (especially about the specific location) which will tell you what's going on and may give some clues to the best treatment.

 

I'm just so stressed right now, worrying that she is sinking deeper into these periods of distress where it's difficult sometimes to bring her back (similar to how she was last year at her worst moments).

 

Dr. K wants me to get some titers drawn to see if there has been some recent exposure. I have to wait until Tuesday since our pediatrician isn't in on Monday in order to get a requisition for the labs to be drawn. I was really hoping that the IVIG would help to regulate her immune system so that these exposures wouldn't affect her as much and with the constant abx, it seems that that would help too. Now I wonder if anything really helps - maybe this just runs its course for however long it does (seems like most of the kids on here are so different - some say it lasts a good year, some even longer - that's with IVIG)

[pmoreno]

I just want to thank all of you who have responded with kind words & good wishes. I know that you are equally concerned about your own children and I appreciate the time that you have taken to say what you have. I have been plugging away at this for a while and I keep thinking that I've come across something that makes sense, but it just goes to show how little we really know about all this. At least Gaby has had a couple of OK days (at least not the agonizing that she went through before yesterday). The only thing is the waking up at 3AM and staying awake until about 7 AM, playing with her hands and fingers. I just know now that I can't let my guard down and think that all is well because this thing cycles and it's random and you never know when there's going to be an up or down.

 

I had her blood drawn today - we'll see what her titers show. Thanks again and God bless.

[Diana]

Hi Pat - know we talked but I wanted to add my 2 cents into the frey here. OK - we're gonna get Gaby outta this - I really believe it!

First, you may have told me but I don't recall why Gaby's only on 500mg Azithro per week. Why not one pill per day - 250mg? This is the only thing us California PANDAS folks have found effective.

If Gaby is like Garrett - now he's (4 months post-ivig) - he seems to rebound from these stupid bacterial URI & sinusitis attacks in 3 or 4 days - CALMING DOWN vs. pre-ivig 5 or 6 weeks, slowly, horribly calming down.

I wonder if she'll be better in a few days or within a week? This is what I've seen with Garrett, it has been awful to watch the reactions to strep or other URI stuff but I would say the IVIG is doing it's job. I feel like it is literally "TRAINING" his autoimmune system how to react.

Too bad the EEG couldn't have been done - if this pandas deal is like a mild-encephalytis - of course, there will be little neurological blips occurring. We did not do an EEG but his pediatric neurologist and neuropsychiatrist both said based on symptoms I mentioned it was probably mild-seizures. Like GABY: really good for a day or two and then BANG backwards to really bad - like bending the nerves too far and it snaps back to its "Bad" place of strange pandas behaviors. BUT I SWEAR it is almost down to nothing now with Garrett. And these last four months have been a B__TCH to put it bluntly.

 

OK - my ideas - I think of pandas every single waking and sleeping moment and the other thing is how to pay my bills....but that's another story. Take care, you are one strong woman. diana

 

.

[EAMom]

Hi Pat,

 

I ditto Diana's concerns about Gaby's Azith. dose. Our PANDAS dd is on 250mg/day (she got down to 42 pounds last spring, currently at about 56). If Gabby is older/bigger you might even need to do even more than 250mg/day.

 

I don't rememeber if you said you are using Ibuprofen. That helped us when our dd was bad...I wonder if there is a synergistic effect with the Advil/Azith.

 

I'm sorry to hear about the rough time you are having. I'm sure it doesn't help matters that we are in the midst of strep season.

[lss]

EAMOM,

 

How much more than 250 mg of zithromax do you think a child should be taking. My son is 9 years old and weight is 90, should it be more than 250 mg? Also, we have been giving him Motrin at night, seems to help him sleep. Any advice on how often is too often. We just can't stop the tics, and one of his teachers is sick, so we can't get away from that. He also had a tooth that was bothering him, I'm wondering if that could have added to the symptoms. We had a filling done today, maybe we can see some relief, don't know.

 

Linda

[pmoreno]

Hello Diana, EA Mom, etc:

Well the reason for the weekly zith at 500 mg. is because the doc in Florida felt that they do pretty well on phrophys at that amount and by not doing daily abx, it helps with the GUT issues.

 

Anyway, here is what's been going on since last Wednesday (which was my nightmare day), Thursday was better (at least no huge outbursts and I kept her home from school). Friday I thought she could go to school but she had a meltdown on the bus in the morning when another child pushed her - then she just couldn't rebound and regroup so I brought her home. The rest of the day wasn't too bad. Saturday was better, but after being around a little girl with sniffles (no strep as far as I know) she became somewhat agitated by the afternoon. Sunday, Monday and Tuesday have been equally OK with no questions re: am I nice? am I loveable? or other repetitive questions. However, maybe several times a day she would complain about the white spots in front of her eyes, but she wouldn't get quite that upset about it. It seems like things are winding down again. I have a feeling that she was exposed to something last Wednesday and it may not have even been strep - could have been some virus - who knows? Anyway, Feb 3 is coming up (appt. with neurologist from Children's Hospital in Detroit) and I am just on pins and needles, can't wait to get that spect scan so that we can see where the inflammation is and whatever else information the scan will give us.