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New PANDAS child in the family


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For those of you who don't remember me, I have three kids and my oldest ds has had PANDAS for nine years. It has been a long, rocky journy but he is now 15 and doing beautifully on antibiotics, fish oil, and probiotics. We haven't had any real PANDAS symptoms from him in almost two years so we feel very blessed. My youngest daughter is seven. She started having obvious symptoms this past year after having pneumonia three times last winter. Although looking back I can see some definite tendencies since as early as two or three. During the last six months she has become almost impossible to live with. In November she had the flu mist and things started to deteriorate immediately. She stopped writing and doing her homework because she said she hated her hand writing. That lasted about three days. Finally she started writing again and thankfully she isn't having trouble in school yet although her handwriting isn't what it used to be. But since she is only in first grade the expectations aren't that high yet. Her rages are getting worse almost daily which is very difficult for us because my son never had rages. So I'm new to trying to figure this one out. I'm afraid we aren't dealing with it so well. Now she has started this hand flapping thing when she is anxious or stressed. Also, she she has the constant finger movement. This started only two days ago. So, the question I have is why is she getting worse? I would think the flu mist would be working out of her system by now. We had a swab done and she was negative. I have an appointment with someone local in two weeks to start a lab work up on her and see if we can get a diagnosis. My biggest fear is that the lab test will show nothing. Isn't that terrible? It's just that I KNOW that this is the same thing, and I really want to get proof so we can move toward treatment as soon as possible. I wish I could get her to take Motrin but she has (always has had), this fear of taking medications and absolutely refuses to take anything. People really don't understand these type of children. You can not reason with an unreasonable mind. If I force it on her, she throws up. So the thought of daily antibiotics doesn’t seem viable to me. These past few months have been horrible. The thought of going through this again makes me sick inside. It seems so much harder this time, maybe because I know what is ahead or maybe it's all the rage and fits. I am thankful for this forum and all the support and help that everyone offers here. Also, we seem to have more doctors available who actually offer treatment instead of saying we are hysterical parents. That is a true blessing. If anyone has any ideas on how to get her past this flu mist thing I would love to hear it. We are past trying to figure this out.

 

Dedee

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Those finger movements are chorea, a symptom of pandas. Get to a pandas specialist. My son got sick at age 6 last summer. He had similar symptoms but he was also spitting out all of his food because he thought he was going to choke. He was back to himself after being put on augmentin and a month long steroid taper.

 

I would move very quickly.

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Well, the flu mist is probably "out of her system" like you said, but the inflammation that it caused may be permanent at this point unless you do something to bring it down. You could start with 3 days of motrin, regular dose every 3 hours while awake. If that doesn't help (and honestly, it may not since it has been going on for a little while), then you could consider a steroid taper or a steroid burst. There may not be an infection anymore, but there may be residual inflammation. Then again, there could be strep somewhere in her body that will not show up on culture.

 

Sorry you are going through this twice. I have 2 pandas boys. It's double trouble if you ask me!

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I'm sorry you're having to go thru this again. It's exhausting.

 

It seems you have a few tasks ahead of you. First, you need to uncover why she's still in an episode after so long. It would seem there's still a chronic infection by something, somewhere. Until that's treated, it's going to be an uphill battle.

 

Second, I would search old threads on rages and CBT (cognitive behavior therapy) and get a few books on CBT and ERP. As you say, you cannot reason with someone else's unreasonable fear, but there are very effective steps you can take to help someone overcome their own unreasonable fears. That's ERP.

 

Third, I can't think of any treatment that might be ahead for you that doesn't involve medications. So I think you need to help your daughter overcome her fear of medications (ERP would be a useful tool here as well). We used tic tacs to help my kids how to swallow pills (no harm done when they got spit back out, unlike precious antibiotics). If it's a fear that a medication might poison her or make her sick, then others may have some ideas on that. Maybe start with something like a chewable baby aspirin - something you can practice over and over and afford to have spit out again and again. Eventually "proving" to her that nothing bad happens when she takes medicine. But I think somehow, this is something you're going to have to help her with, not just for Pandas but for any other illness she may encounter.

 

Maybe if you can explain what drives her fear of medications, others can offer ideas...

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The flu mist set off my DS's PANDAS. In looking back, we see he probably had his first episode at age 4 when he had an ear infection. Next episode at age 5 with another ear infection. Both those episodes were very mild w/ irritibility and tantrums lasting a few weeks but resolved on their own and we thought it was a phase. The third times the charm. He had the Flu Mist and all ###### broke loose in our house. The rages were the worst. I can't tell you how to turn off the flu mist. DS was still undiagnosed and the 3rd episode remitted in about 2 months. Fourth episode after yet another ear infection at age 6. That episode never remitted on its own. We finally figured out he had PANDAS (on our own) and contacted Dr T.

 

Antibiotics have returned my DS to nearly 95% of his former self and this is in the absence of any active recognizable illness/infection/what have you. He apparently has a "hidden" infection somewhere. I suspect his sinuses. He is asymptomatic for illness currently.

 

My son has normal titers. Normal titers does not exclude a PANDAS diagnosis.

 

Cindy

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Hi DeDee..

i remember reading your posts before i ever joined...and seeing your name

i would peek in as my son would have an episode..but at that time he would quickly remit with standard abx...

and i was crazy enough to think..well..maybe that will be his last one...and go on and have a life...

 

well about the time i signed on..you were fortunate enough to have healing...and went mia..that's good though....

 

anyway...if your son is on daily abx...who is prescribing...maybe you could contact them..that would be my first call..obviously they know your son...and pan/pits run in families as most conditions do....would not be a far stretch to assume the same condition for your dd...

 

if you don't mind me asking...

how long after you started abx...did you start to see some healing...

and what age and what dose??

 

all info is eye opening/ and sometmes the key for someone

 

God Bless...i have 3 pandas..my only non-panda went panda before christmas...i feel ya

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Thanks so much for everyone's support and wonderful suggestions. For those of you who are getting treatment from Dr. T, are you all traveling for each appointment? I am from Tennessee and I really want my dd to see someone who believes in aggressive treatment. We fooled around way to long with my son and their were too many years that he had to suffer because we didn't go to the right docotr soon enough. My appointment next week is to get titers, do an immunology study, and I will probably go ahead with a Lyme test while we are at it. I don't know how long it takes to get that kind of stuff back but I wanted to have that when I tried to contact a PANDAS expert. I think CBT is a good idea. What is ERB?

 

Someone asked how long it took my son to heal and return to baseline. His worst time was when he was eleven and he had four strep infections in a two month period. His symptoms exploded and that was when the tics started also. He has had PANDAS since he was six, but only had the OCD / anxiety piece till then. So after the fourth episode that winter, I started making the decisions and ignoring the pediatrician. I took him to an ENT and had his tonsils removed. They started antibiotics post op as a routine thing. Immediately after surgery I could tell he was better. No tics at all. OCD behavior gone. However, when the antibiotics ran out, it all came back. So I begged his pediatrician for another round to see what would happen and she agreed to try. When we started the antibiotics back the tics and OCD went away within a couple of days. So I did the research and took it in to my pediatrician on antibiotics being helpful for PANDAS patients. She said if I could find a PANDAS expert to see my son and agree that was he needed she would write the script. So we made an appointment and waited the three month waiting period and wen to see Dr. Murphy in 2007 when she was at the Shands Clinic in Florida (several hours from our house). She was absolutely wonderful and wrote up a treatment plan and sent back to my peditrician. So my ped has been giving us antibiotics for him sense. The last time we were in when I asked her to swab my daughter even though she didn't have fever or sore throat she sort of gave me the "Oh no, not again", look. I told her my daughter had started having tics that she had never had before but she kind of ignored me. The strep test was negative and she didn't say anything more about it. So, I have decided even though she has helped with my son, I don't think she is completely "on board" with the whole thing. I really don't have time to convince anyone. We are in crisis mode and I refuse to go through that whole fighting with doctor's thing again. I can't tell you how many appointments we went to with my son only to be told that there really wasn't anything to PANDAS. I left so many offices in tears. Well, I'm not going through that crap again. There seems to be enough educated physicians out there now who are willing to to be a blessing to these children and families. I just need some guidance on the process of getting there when you live so far away. Who are the best choices when you are going to be traveling? Do I have to have a physician here to collaborate with them? Sorry to be so needy. Once I get my plan, I feel much better. Right now I feel so powerless to help my daughter who doesn't seem to be anything like the daughter I used to know. Thank you all so much for your support. We are all so blessed to have this community of special parents to help one another.

 

Bless you all - Dedee

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Hi Dedee,

I'm sorry that you have to go through this yet again. I really empathize with you. My 7 1/2 yr old twins have pandas and now my 19 month does too. I know too well about the rages,odd,ocd and oh the non stop whining and crying. My youngest one refuses to take his medicine. I used to be able to hold his nose but now nothing works and he spits it all out. I see a total decline in his behavior since he stopped taking antibiotics. After speeking to his doctor I have decided to give him antibiotic injection. Its once a month. It's not my ideal way but he needs antibiotic before he gets worse. Just wanted you to know its an option. Does your daughter like taking chewables? perhaps you can try that first.

All the best,

Tami

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Tami,

 

My daughter won't take anything. Not a chew, melt, nothing. She has had a broken leg and a broken arm (at two different times), and she would never take anything for the pain. She recently had hernia surgery and we finally found a way to crush up a pain pill and dissolve it in hot chocolate and she couldn't tell it was there. It is definitely a mental thing. If she even thought it was in there she would never had drank it. One time I was able to mix omnicef in some yogurt and she would eat it. That was how we got her through strep and her pneumonia. She has thrown up so many different types of medications. There is absolutely no forcing it. So honestly, the thought of a shot weekly is fine with me. I am a nurse so I could actually do it myself if I had enough people to hold her down. What type of antibiotic is it that you give by shot? Do they also use a steriod injection? Do you have a local doctor that recommended it or are you consulting from a distance? Good luck with your house full. I just keep telling myself, there is an end. I have seen it before, it must still be there.......

 

Dedee

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So sorry you are going through this again! One thing we have done is to administered antibiotic to our 3 year old twins while sleeping. I put it in a plunger and they typically swallow the medication before they even wake up. Might give it a try that way.

 

-Wendy

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So sorry you are going through this again! One thing we have done is to administered antibiotic to our 3 year old twins while sleeping. I put it in a plunger and they typically swallow the medication before they even wake up. Might give it a try that way.

 

-Wendy

Careful! This backfired on me- created more sleep issues. She wouldn't sleep for fear that we'd slip her something!

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I think CBT is a good idea. What is ERB?

 

ERP (Exposure/Response Prevention or Exposure/Ritual Prevention) is a sub-set of Cognitive Behavior Therapy. It's the process of breaking a fear down into manageable steps. Instead of tackling a whole flight of stairs, you focus on just moving up one step. Then tomorrow you focus on taking the next step. Climbing one stair may be doable, even when the thought of climbing the whole flight of stairs is overwhelming.

 

You also focus on one fear at a time. So if your child has a contamination fear and a need to hoard, you don't focus on all both at the same time. You might allow all other rituals and only focus on hand washing. Maybe you only have a goal of only washing hands 24 times that day instead of 25. Then once they celebrate their ability to tell OCD no, even once, you can build confidence that they can do it a second time tomorrow (or next the next day).

 

So for a medication fear, maybe you start with a chewable baby aspirin and have your daughter hold it in her hand. The next day, maybe she works on touching it to her lips. After she accomplishes that (and you celebrate it like she just won the Nobel peace prize), she works on being able to lick the aspirin. Then maybe put it in her mouth then spit it out. Then chew it but still spit it out..until she works up to swallowing it. Then she does this successfully for a period of time, then you work up to other meds. I highly recommend reading "What to Do When Your Brain Gets Stuck" with your daughter. It will give you both a common vocabulary and understanding.

 

When a Pandas child is really sick, this is a very hard thing to do and will likely have a lot of failures sprinkled in with a few successes. It's like training for a marathon. It needs to be an every day thing with a commitment and understanding that it's a long term therapy. It may take time before you see results. But IMO it's essential to being able to control this disease over the long haul and it gives important life tools even when OCD is in remission.

 

You mentioned seeing Dr Murphy for your son. Is that a possibility for your daughter? It may help to work with a doctor who knows your family history and has been willing to help you with local doctors. She is also an advocate for ERP and may be able to help in that regard as well.

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Wow, thanks for the explanation on ERP. That sounds like an awesome process that takes complete commitment and perseverance. PANDAS parents have to wear many hats. We are parents, scientist, doctors, nurses, psychiatrist, psychologist, teachers....where does it end? Oops, sorry, I almost started to whine.

 

We have thought of going back to Dr. Murphy, but she isn't at the Shands Clinic anymore. I think she is still in Florida but not sure where, and I don't know if she is still seeing patients or only doing research. Also, I want to make sure we have the option for IVIG if my daughter is a candidate and I'm not sure what her stand is on that. I would think she would be in favor, because she is involved in all the studies on PANDAS. I just haven't heard for sure.

 

Maybe I am jumping the gun by already thinking along the lines of IVIG. It's just that my daughter is only seven and I really want to be aggressive on getting this thing under control as quickly as possible. I guess I feel guilty that I let things go as long as I did with my son before I put my foot down and started doing my own research. Also, when we were dealing with him they were only just starting to talk about IVIG and only the worst of the worst cases could even be considered. Even to get antibiotics was a huge success (still is sometimes). Things have come a long way in nine years.

 

So, I am still weighing my options and waiting to go for labs next week. Trying to decide where we will go from there......

 

Dedee

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