Pandas/pans Disorder?

[sagesavannah]

Does anyone know of this or have this disorder? I think my daughters undiagnosed issues may be attributed to it. You can message me privately if you'd like.

Thanks!

[Jennifer in MI]

Can you share a little? I have a daughter who has some really, really weird anxieties. They came on VERY suddenly last summer. I was JUST thinking yesterday that I should ask about PANDAS!

[Starr]

http://www.bostonglo...ETLJ/story.html

 

Interesting PANDAs article.

[Jennifer in MI]

From this list, my dd is only missing two.

 

 

• Acute sudden onset of OCD
  
• Challenges with eating, and at the extreme end, anorexia
  
• Sensory issues such as sensitivity to clothes, sound, and light
  
• Handwriting noticeably deteriorates
  
• Urinary frequency or bedwetting
  
• Small motor skills deteriorate - a craft project from yesterday is now impossible to complete (see images below)
  
• Tics
  
• Inattentive, distractible, unable to focus and has difficulties with memory
  
• Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs
  
• Suddenly unable to separate from their caregiver, or to sleep alone
  
• Screaming for hours on end
  
• Fear of germs and other more traditional-looking OCD symptoms
  

 

So, how do we find a doctor who can treat her? This just has to be it. She will get better for a couple days and then, WHAM, she's acting crazy again.

[sagesavannah]

My daughter has been having these symptoms for about a year now. She had had mono for a couple years prior, and was still chronically sick from it, and out of the blue, she started having extreme OCD symptoms, panic attacks, raging everything bothered her, she would have meltdowns for hours, her personality completely changed. She was scared of everything. We thought she had seizures, but looking at it now, I'm sure it was tics.

We took her to Er twice, had no sea what to do, we've been seeing a natural dr. And she's been helping somewhat. But I literally just read up on this last night as some ladies on the learning challenges board suggested this.

Originally they thought that this could ony come about with strep but now they're saying anything like lymes pneumonia mono even dormant strep.

 

I have been doing research like crazy all day and as soon as I saw it it describes my dd exactly.

 

I guess there's ony a handful of drs around te country that can treat it. I can send some links I found if you're interested.

 

 

[sagesavannah]

Oh, and she couldn't focus, I remember also at te time that it started she was having such a hard time remembering simple stuff... I tried continuing some school work with her before stopping for months, but its like she regressed backwards. She was just all over te place.

It looks like the symptoms are different w every kid, some its more if one thing than another.

It's the only thing that makes sense with her. I thought maybe she had asbergers???

She still could have some issues with that, but these symptoms literally developed all at once.

[Jennifer in MI]

Oh, and she couldn't focus, I remember also at te time that it started she was having such a hard time remembering simple stuff... I tried continuing some school work with her before stopping for months, but its like she regressed backwards. She was just all over te place.

It looks like the symptoms are different w every kid, some its more if one thing than another.

It's the only thing that makes sense with her. I thought maybe she had asbergers???

She still could have some issues with that, but these symptoms literally developed all at once.

 

I would LOVE any links you can find. Thank you. And, yes - My daughter's symptoms developed overnight. We were on vacation and she got a stomach ache after eating in a particular room in a hotel. She had all out panic attacks the rest of the time we were there because she was afraid she was going to throw up. That started her eating issues. She is desperately afraid of germs now. She had a panic attack at the doctor's office yesterday because the "well" child room wasn't open and she had to be in the room with sick people. (She went running out of the room and nearly left the office outside!) She won't let me leave the house without her. I need to be with her at all her activities. If she even gets a twinge of a bellyache she has panic attacks. If she sees a tv show where someone is sick, she panics. She hasn't had the tics, yet.

 

If this is it, it explains SOOOO much!! Does it make sense that she'll have a couple of good days before having another attack? How soon after the illness does PANDAS take to develop? Hers happened in the month or so after she was sick.

[FaithManor]

According to my doc, currently working with Doctors without Borders so he's been crossed trained not only in US medical schools, but also UK, France, and Australia, PANDAS could potentially affect any child that has experienced an illness that has neurological side effects. Lymes, Malaria, Rocky Mountain Spotted Fever, West Nile, Strep and in some cases Staff (in particular Staff infections in the throat), Chicken Pox, Mono, to name a few and so much depends on the individual immune system.

 

I think that if you goodle "Pandas Doctors" you can find a list of docs with experience treating it.

 

I know that in his opinion, any Pandas caused by spryrokete (SP?) diseases, indicates a need for longer drug treatment, plus a need to get the person built back up - changes to diet, mega doses of vitamins and minerals, extra sleep (more than you would think), natural herbs and botanicals that are known to boost immune function, omega oils (he likes Rainbow Brite, Nordic Naturals, or Learning Factors - Canadian company) to help the brain heal and begin to self-regulate again, etc. He sees it as a long term treatment plan and it would be very similar to all of the treatments that MarianNova and Denisemomof4 have gone through with their daughters Lyme's diseases. He feels that Strep often needs longer bouts of antibiotics than are generally prescribed and yet is willing to admit with the overuse of antibiotics, many parents are very scared of giving their children more than 7-10 days of treatment. Difficult balancing act there.

 

Jennifer, not only would I start a search for a PANDAS doc, but I think I would be inclined to reduce her committments outside the house if at all possible, institute a nap time if you can get her to comply, beef up vitamin and mineral supplements, and add omega oil supplements as well as vitamin D while you look for help. It is amazing how much is being found out about the role of vitamin D in immune support, and this time of year in Michigan, the UV rays are not strong enough for anyone to produce it no matter how much skin they are willing to expose in sub-zero temps. D3 is the form that my friend recommends and if memory serves, there are several companies that make it in gummy bites that are quite tasty.

 

Oh, and zero sugar....seriously zero sugar. It affects the PH level of the blood stream and makes it easier for both bacteria and spiroketes to live and flourish. That's not fun, but I did it to Dh, the guy who thinks that sugar is the big food group at the bottom of the food pyramid (grrrr...), when he was in Lyme's treatment, and he did very, very well. That's just anecdotal, but my dear MD friend echos that sentiment and whenever his patients are sick with much of anything, he makes them reduce their sugar intake in all forms which means citrus and green apples but not sweet fruits, green and red veggies but not orange, no sweeteners, low grains, good omega oils....his one caveat is Coconut and Coconut oil. He's a firm believer that coconut has been proven to have some very good immune boosting qualities as well as improving brain function, so he does recommend them.

 

I hope you find help.

Faith

[Jennifer in MI]

According to my doc, currently working with Doctors without Borders so he's been crossed trained not only in US medical schools, but also UK, France, and Australia, PANDAS could potentially affect any child that has experienced an illness that has neurological side effects. Lymes, Malaria, Rocky Mountain Spotted Fever, West Nile, Strep and in some cases Staff (in particular Staff infections in the throat), Chicken Pox, Mono, to name a few and so much depends on the individual immune system.

 

I think that if you goodle "Pandas Doctors" you can find a list of docs with experience treating it.

 

I know that in his opinion, any Pandas caused by spryrokete (SP?) diseases, indicates a need for longer drug treatment, plus a need to get the person built back up - changes to diet, mega doses of vitamins and minerals, extra sleep (more than you would think), natural herbs and botanicals that are known to boost immune function, omega oils (he likes Rainbow Brite, Nordic Naturals, or Learning Factors - Canadian company) to help the brain heal and begin to self-regulate again, etc. He sees it as a long term treatment plan and it would be very similar to all of the treatments that MarianNova and Denisemomof4 have gone through with their daughters Lyme's diseases. He feels that Strep often needs longer bouts of antibiotics than are generally prescribed and yet is willing to admit with the overuse of antibiotics, many parents are very scared of giving their children more than 7-10 days of treatment. Difficult balancing act there.

 

Jennifer, not only would I start a search for a PANDAS doc, but I think I would be inclined to reduce her committments outside the house if at all possible, institute a nap time if you can get her to comply, beef up vitamin and mineral supplements, and add omega oil supplements as well as vitamin D while you look for help. It is amazing how much is being found out about the role of vitamin D in immune support, and this time of year in Michigan, the UV rays are not strong enough for anyone to produce it no matter how much skin they are willing to expose in sub-zero temps. D3 is the form that my friend recommends and if memory serves, there are several companies that make it in gummy bites that are quite tasty.

 

Oh, and zero sugar....seriously zero sugar. It affects the PH level of the blood stream and makes it easier for both bacteria and spiroketes to live and flourish. That's not fun, but I did it to Dh, the guy who thinks that sugar is the big food group at the bottom of the food pyramid (grrrr...), when he was in Lyme's treatment, and he did very, very well. That's just anecdotal, but my dear MD friend echos that sentiment and whenever his patients are sick with much of anything, he makes them reduce their sugar intake in all forms which means citrus and green apples but not sweet fruits, green and red veggies but not orange, no sweeteners, low grains, good omega oils....his one caveat is Coconut and Coconut oil. He's a firm believer that coconut has been proven to have some very good immune boosting qualities as well as improving brain function, so he does recommend them.

 

I hope you find help.

Faith

 

 

Thank you SOOOO much! I did a quick google search and found a doctor that specializes in PANDAS about an hour away. We can do that.

 

I'm hesitant to reduce her outside activities because those are the times she seems normal again. She acts like a little kid. Running and jumping and playing. And, she'll go a few days without a problem and then it hits as suddenly as it did before.

 

I will look up those vitamins and supplements. And, luckily Meg does not like sugar. She won't eat candy, cake, ice cream, etc. (She doesn't even like many vitamins because they are too sweet!) She does like the occasional chocolate chip cookie, but even then she'll only have 1/2. Veggies are another story. She'll eat peas. That's it. And sometimes she won't eat them if the "shells" aren't the right texture. Now that I think about it, this pickiness all started last summer.

[astrid]

I came here to ask about PANDAS but did a search first and found this thread. In looking back, Molly's anxiety came out of nowhere last winter following her bout of mycpolastic pneumonia. It's kind of ebbed and flowed since then, hitting with a vengeance last spring after a sinus infection. Her handwriting has deteriorated in the past year, and has several other symptoms:

• Acute sudden onset of OCD
  
• Challenges with eating, and at the extreme end, anorexia
  
• Sensory issues such as sensitivity to clothes, sound, and light
  
• Handwriting noticeably deteriorates
  
• Small motor skills deteriorate - a craft project from yesterday is now impossible to complete (see images below)
  
• Tics
  
• Inattentive, distractible, unable to focus and has difficulties with memory
  
• Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs
  
• Suddenly unable to separate from their caregiver, or to sleep alone
  

 

• Fear of germs and other more traditional-looking OCD symptoms
  

 

I have to wonder......... But is she too old for it? (15?)

 

astrid

[brookspr]

My best friend's daughter has PANDAS. The symptoms started a couple of weeks after being hospitalized for a serious virus. She also tested positive for strep at the time of her diagnosis. She is getting great help and many of her symptoms are almost nonexistent.

 

I would start by checking out the website www.savingsammy.net

 

The book Saving Sammy was written by a mother who's son had PANDAS and it is about their long ordeal to get a diagnosis and treatment. There is lots of information on the website, as well as a list of providers that treat the disorder. She is extremely educated on the subject and is probably one of the leading advocates for PANDAS patients.

 

Good luck to you all and I hope you find answers to help your children through this.

[Jennifer in MI]

My best friend's daughter has PANDAS. The symptoms started a couple of weeks after being hospitalized for a serious virus. She also tested positive for strep at the time of her diagnosis. She is getting great help and many of her symptoms are almost nonexistent.

 

I would start by checking out the website www.savingsammy.net

 

The book Saving Sammy was written by a mother who's son had PANDAS and it is about their long ordeal to get a diagnosis and treatment. There is lots of information on the website, as well as a list of providers that treat the disorder. She is extremely educated on the subject and is probably one of the leading advocates for PANDAS patients.

 

Good luck to you all and I hope you find answers to help your children through this.

 

I'm frustrated that the woman at Saving Sammy charges for the information on how to communicate with doctors and all. I get that she wrote the book and wants to make a profit on that, but the other? Nah.

[Guest bretthenry]

I have a daughter with PANDAS for 8 yrs now. Saving Sammy is a good website, however many cases of PANDAS is not as easy to treat as Sammy was. I would go to Pandas resource network or pandas network. There is also information on the Iocfoundation website. The first thing to do is find a doctor who specializes in PANDAS, there are not many but are increasing and a list of providers are on pandas resource network. Many doctors are not whiling to do more aggressive treatments like IVIG that are sometimes necessary. Aggressive treatment early on is key. My dd was misdiagnosed for 6 years and is still recovering and needing aggressive treatment. She goes into remission mostly in the summer when there are not a lot of viruses going around. She is triggered by just being around someone who is sick. Every case is different so you need to be aware of that. A specialist is a must!

[kris5789]

I know this is an old thread, however I wanted to share an excellent resource for parents, in case anyone searches here and this thread comes up.  I have a child with PANDAS and Neuroimmune Foundation has been the best, most supportive organization that provides medically sound advice.  A good place to start is https://neuroimmune.org/patient-and-family-resources/what-are-pans-pandas/.  They have webinars, support groups, a directory of doctors who have taken their CME, and more:  https://neuroimmune.org/patient-and-family-resources/.  Anyone who sees this suspects their child may have PANS or PANDAS - have hope.  My child is now in remission and doing well!

[MercyA]

Zombie thread reported.