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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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15 replies to this topic

#1 mimip

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Posted 22 April 2012 - 01:17 PM

Hi,

I'm new here and looking for some advice. My 9 year old DD4 presented with symptoms 18 days ago. It was a particularly stressful time and in the midst of a complete meltdown by my 13 year old DS2, DD4 had trouble swallowing a gummy candy. It sent her into a full blown panic attack that lasted hours and included dilated pupils, hyperactive pacing, frequent urination, shaking, extreme sensitivity to sound, feelings of impending doom, feeling like she couldn't breathe, etc. We figured it was the stress of everything at home and a stressful incident at school.

The next night the same thing happened- difficulty swallowing followed by extreme panic attack.

The next day the anxiety and panic lasted all day and included abdominal pain, separation anxiety, fever, severely restricted eating (only tea and bananas),vomiting, congestion, constipation, trouble thinking/deciding, and refusal to sleep alone. This continued the exact same way for the next 3 days, except the food she was willing to eat changed each day.

Then we brought her to her pediatrician. Her fever had broken by that time. She had lost more than 2lbs. By this time she was eating basically nothing and had an extreme fear of choking. The doctor felt that there were 2 different things going on- a viral infection and anxiety. I asked her to do a Lyme Disease test because my husband had been diagnosed with Lyme Disease, Bartonella, Mycoplasma, Anaplasmosis, and we strongly believe Babesia as well, in Sept. My DD4 also had had an embedded deer tick a few years earlier.The pediatrician refused to test her for anything and sent us on our way.

Her symptoms continued including strange eating habits, like pulling all of the cheese off of pizza and licking the sauce off, and spitting repeatedly after eating and drinking. She also complained that her handwriting was too messy, seemed to be less coordinated, became obsessed with food and started making food for others, started with repetitive throat clearing and a repetitive head roll, etc. I came across info on PANDAS online and thought it sounded like it might be what was going on.

I brought her back to the ped and pleaded my case. She lectured my daughter and told her she was upsetting me with her weird eating habits. That wasn't true because I just wanted her to eat and didn't care how she did it. My daughter cried because she said she is trying really hard and wants to eat.

The ped reluctantly gave her a rapid strep and a throat culture. The rapid was negative so we were sent on our way again and told to follow up in a week after the ped's vacation. Two days later the office called and said the culture came back positive so they had called in a script for Azithromycin for 5 days.

My daughter had a lessening of symptoms around the time of starting the antibiotics but they didn't go away completely. After the 5 days her symptoms started to worsen again. There is a specialist I want her to see but I needed to change health plans and ped's, which I did. The new ped, who I need her to see for a referral to the specialist, is also on vacation. The receptionist said she didn't think DD4 was considered "urgent" and said we could wait 2 weeks for an appt. I finally talked her into an appt with the nurse practitioner and we have that appt in a few days.

Now we are at the point where my daughter is not eating anything, and we are having trouble even getting her to drink a Pediasure. She is terrified of choking. She constantly throat clears and is basically glued to my side. She is unable to go to school, which she normally loves.

My biggest things right now are trying to get her to eat and finding out if it really is PANDAS or PITAND. In addition to her positive strep, she also has a neighbor who just had pneumonia (maybe Mycoplasma), another with strep, and another who had strep and mono symptoms but her doctors can't figure out what it is. We are in a highly endemic Lyme Disease area too. My daughter had also just lost a tooth and had an abscess around the time her symptoms started. Both sides of her family have histories of frequent strep including Scarlet Fever and Rheumatic Heart Fever, as well as anxiety and OCD. I still keep doubting my gut feeling though.

Also, any advice on how to get her to feel comfortable enough to eat?

Thank you for reading our story. Any thoughts would be appreciated.

Mimi


#2 michiganpandas

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Posted 22 April 2012 - 03:00 PM

This is exactly how my daughter started..SAME PROBLEMS....including the throat clearing,sep.anxiety and fear of eating and panic attacks along with contant anxiety which caused dizziness and stomach aches, etc.. (and yes, we tested pos for strep...and also a year prior had a tick removed)...i don't have a lot of time to write at the moment...but, as for the eating what worked for us in the beginning to help the issue is to NOT make food an issue...i never talked about it..allowed her to watch a lot of tv (she would not leave my bedroom) so i would put food i knew she would eat that she thought was healthy right next to her.
As for antibiotics...make sure you have her stay on as long of a course as possible (i did not do this..i listened to her doctors..BIGGEST mistake!!!)...get a pandas specialist!

also...my daughter was homebound schooled and i slowly eased her back before the end of the year....it was BAD!....but, my daughter did get to about 80-90% better/back to normal....we are just now working on the ocd fears of the throwing up (still)

#3 tpotter

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Posted 22 April 2012 - 03:31 PM

Print out the white paper that was just published by Dr. Swedo at the NIMH, the blog by Dr. Thomas Insel (director of NIMH), and the new PANDAS website. Highlight the parts where it describes the symptoms, the necessity of staying on long term abx, and anything else that may be appropriate.

Also, since you are definitely suspecting Lyme and co-infections, I can't stress enough finding an LLMD (lyme specialist) who knows the protocol for treating lyme disease. Lyme is a clinical dx, so even if the tests come back negative (which they do many times,) it very well may be positive.

Good luck, and sounds like you are on top of things. I'm glad you moved quickly to change drs. Sounds like you really needed to.

#4 colleendonny

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Posted 22 April 2012 - 03:58 PM

Hi. I'm sorry to hear about your daughter and you are definitely right to keep pursuing!
I agree to look for an LLMD or an integrative doctor.
Have you looked into seeing a PANDAS/ PANS specialist? There is a pinned thread up on the top that will give you names of doctors who may help, but I would definitely set up an appointment this week with one of the 4 specialists. Most of them do not take insurance, but will give you paperwork to submit.
You said you live in a highly populated tick area? Are you in the northeast? We are in MA.My daughter is dealing with a few TBI's.

I agree with tpotter- bring in the white paper!
Here is a link to it: http://pandasnetwork...-0665-2-113.pdf

Good for you for discovering PANDAS so quickly! I found this site 5 days of my DD4 at the time, had her overnight onset and the moms and dads who participate on this forum have been so helpful for my family and I on this crazy journey!
It is definitely good that you caught this early. There are many kids who go un/ misdiagnosed for years. Early intervention is definitely a good thing.

As for getting your daughter to eat, I'm sorry but I have no advice. Hopefully someone else could chime in with that.
Hnag in there. Things will get better. You need someone to give you some abx. Maybe you could try a CVS minute clinic and get a rapid test and explain what is going on... Maybe you could get Augmentin or azithromycin. Preferably for at least 1 month.

#5 bigmighty

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Posted 22 April 2012 - 03:58 PM

There is a list on this forum of docs that you can use to find a PANDAS-friendly doc. You need long-term relatively high-dose antibiotics (a lot of the docs prefer Autmentin) and, possibly, a steroid burst for your child, as well. Get on every specialist or doc calendar you can - now. You can always cancel a couple of days out if you find the right specialist and feel that it is the doc who can help your child. Be persistent. Don't stop until you get someone to give you the correct treatment. There is no doubt in my mind that your child has PANDAS. PANDAS kids often have very high ASO-Titer scores (although some have extremely low scores). And they also usually high AntiNasal DNA Antibody Test scores. Get someone to run some labs and verify that it is PANDAS. I am so sorry your daughter and your family are dealing with this illness. I am thrilled that your child has such a wonderful persistent advocate. You are on the right track. Hang in there. Sending virtual hugs - Suzanne

#6 bulldog24

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Posted 22 April 2012 - 07:46 PM

Ugh , it sure sounds awful.
There is a study recruiting pandas kids.. it the NIH study. I took my son who was very sick and 6 months later he is close to 100%!
Feel free to pm me.

But if you search the forum you will find it, or google pandas ivig study. My son was not diagnosed when I called, and 2 weeks later we were there . All expenses paid

#7 gunillafromsweden

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Posted 22 April 2012 - 09:09 PM

I really feel with you, my son had totally different symptoms, but I really understand the crisis you are in. From what I know now you should never do just a short period of abx, so what you need to do now is quickly find a dr who will put her back on abx while you are finding a dr with knowledge of pandas. Actually (hoping this is not against forum rules) abx can be bought online from some countries without prescription, if you can't find a dr willing to prescribe abx right now.). My son's symptoms started March 2, and with abx and IVIG, he is now at least 80% well, but I refuse to take him off abx, as we can see if we just forget one dosis he will start twitching.

#8 mimip

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Posted 23 April 2012 - 10:41 AM

Thank you to everyone for the advice and support!

Michiganpandas: She does the exact same thing- stays in my bedroom and watches TV. Great advice on eating because she does seem to get more nervous with even suggestions of eating. Since she does some unusual things while eating (licking food, taking food apart, spitting during and after eating and drinking, etc), I think she prefers to eat semi-privately. We have a large family, 6 kids with the yougest 5 at home (oldest is an adult) so I think the chaos of the other kids running around makes it harder for her.

tpotter: Great suggestion on printing out those materials. I'm just so frustrated with the medical community right now. I feel totally abandoned. But I think having solid medical information will help a lot. I have been getting too worked up to state my case clearly and non-emotionally.

When my husband got sick with Lyme and the 3-4 other TBI in Sept I called around the entire Northeast for an LLMD. We started seeing a nurse practioner who works with an LLMD who sees adults but is primarily a pediatrician. My husband had been planning to switch to his care when my daughter got sick. I should be able to get my daughter in to see him soon. In addition to seeing Lyme patients and being a primary care pediatrician, he is an environmental medicine specialist and he also has experience with PANDAS.It's amazing how similar the experiences of trying to get help for my husband for Lyme and trying to get help for DD4 now are. The only difference is that now my husband is well enough to help with my daughter, but when he was sick I was more alone.

colleendonny: Yes, we are in MA too, Boston Metrowest area. I'd love for you to pm me if you know of any resources in the area. I'd also love to get together or go to a support group meeting if there is one close to me.

On the one hand I feel like I figured out what was going on pretty quickly, but on the other hand I'm upset with myself for not figuring it out sooner. I had heard of it when my oldest son, now 22, was younger. He had repeated strep and anxiety, OCD, and eating problems. His symptoms weren't as severe or sudden though, so I dismissed the idea.

Suzanne: Thank you so much for validating my thoughts on it being PANDAS and for the virtual hugs. Sometimes it is so hard not to doubt yourself, especially while medical professionals aren't listening or are telling you something else (she just needs to go to a dietician to tell her to eat right, the antibiotics should have cured it, etc). I agree that we need some labs. I couldn't believe her ped wouldn't run any. Sending virtual hugs to you too.

bulldog24: I'm interested in the study but DD4 is allergic to penicilin/amoxicilin. Do you know if that excludes her? Congratulations on your son's recovery! I'm trying to go day to day right now but sometimes I think ahead and hope she will get better, while worrying that she won't.

gunillafromsweden: Oh wow, I didn't realize that about short term abx. This really reminds me of the fight to get abx for my DH. In fact DH has some Azithromycin left from when he switched to Biaxin for Lyme and we briefly, out of desperation, thought about giving her some. She needs liquid too and they are pills.

Thank you again to all of you. I've found with anything like this that the support of other parents to be the most helpful. Stories of getting better help us stay hopeful and keep us going. It's just helpful to know you aren't alone. I'm thinking of all of your families as well and sending warm, healing thoughts.

Mimi

#9 kimflow

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Posted 23 April 2012 - 12:29 PM

Mimi,

I too have only entered PANDAS territory about 4 weeks now....It feels like 4 months. We are on our 3rd antibiotic as the strep was never treated completely. The second antibiotic, Amoxicillin, had a short lived benefit and then I knew by his symptoms, the strep was back even while on Amoxicillin. I was right.....so now we are on Keflex and daily Zithromycin.

My one bit of advice for you is that we too were prescribed zpack for 5 days upon initial diagnosis of strep throat. What I have since then learned is that zithromycin is not as specific for strep.....an amoxicillin/penicillin or a cephalosporin is more specific. The zithromycin is used in PANDAS daily more for immunomodulatory function then for it's powerful strep killing action (even though it is an antimicrobial). SO my advice is get her throat swabbed again and if positive, don't accept zithromax again. Maybe go for a cephalosporin since you write she has allergy to "cillins".

And find yourself a PANDAS specialist and make an appt. now.

I feel for you as it was a horrible helpless feeling when I was in your position a few weeks ago. It is not much better now as I watch my son with his choreiform movements that he can't control but atleast I have the daily zithromax and an appt. in August with Dr. Latimer, a local PANDAS specialist.

Kim

#10 michiganpandas

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Posted 23 April 2012 - 03:11 PM

My daughter also started the strange licking and eating with her food...that broke my heart to watch her like that...but, i didn't say anything to her about it..until she was ready then addressed it....also, she would do the spitting, too...everything for my daughter was related the ocd fear of throwing up...getting sick from eating unhealthy foods...and fear of swallowing chemicals/soap, etc.
she also would chew on her clothes like crazy.

#11 gunillafromsweden

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Posted 23 April 2012 - 08:05 PM

Thankyou for sharing this, my son is chewing his clothes all the time (started with pandas onset), but when I mention this as a symptom our dr says "many children chew on their clothes" it's just that he has never done that before, and now he's chewing his clothes all the time, I mean all the time.

#12 worrieddadnmom

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Posted 24 April 2012 - 05:54 AM

Mimi, I am so very sorry for your ordeal. Do not be afraid to go with your gut. Also, don't mess around with the regular medical community. Get to a DAN or Integrative Ped. For us, the 5 day course of azith was not enough. We did 10 days for dd8 with Strep and EBV and it cleared her. For other dd7 she did 10 days then stopped then 10 more and then a weening process of MWF regimen for 3-4 months. Things were very bright for us until KNOWN strep exposure.

Also, I can't stress enough about getting to a DAN/Integrative Ped that can look for infections, vitamin and mineral deficiency and other factors involved. A total comprehensive overview of your child's health.

#13 airial95

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Posted 24 April 2012 - 05:54 AM

I haven't had the time to do more than scan through all of the responses, but I didn't see that anyone had recommended giving your daughter motrin/ibuprofen.

In manay PANDAS kids, giving them motrin will reduce the inflammation in the brain and help symptoms temporarily. For many - including us - it's nothing short of a miracle drug, and one that you don't have to beg your pediatrician for.

In our case, it doesn't make the symptoms go away completely for our severe PANDAS son, however, we have MAJOR food issues as well - and while Motrin doesn't solve all of our food issues, it's helped us get at least SOME food into him during his worst episodes.

We have a very PANDAS friendly pediatrician, and he's seen first hand the food issues with our son, not to mention the fact that he's barely 35 lbs and will be 5 this fall (43" tall to boot - he's still in an 18 month pant - thankfully we live in FL where we wear shorts most of the time so he's not ALWAYS wearing floods!) For us, our pediatrician has told us it's okay to focus on letting him eat what he will eat when he's having his episodes - if that means he eats nothing but donuts for days straight - so be it, it's better to have him getting something (even if it's not healthy) than nothing at all. Our son also eats farily well (and healthy) when he's not having a full blown exacerbation - so we're not as concerend about bad habits.

We use a multi-vitamin daily, and try to use fruit juice with veggies in it (V8 Splash, etc...), but when he's having episodes it doesn't always work.

Hopfully you can try the motrin trick, for us, while it doesn't solve our food issues entirely, we usually can get him to eat more with the Motrin, than without.

Mom of an exceptional 6 y/o son and 8 y/o daughter - BOTH with PANDAS.


#14 mimip

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Posted 08 May 2012 - 07:06 AM

Thank you all again. The suggestions and support have been invaluable. I have some updates which have led to more questions.

I brought my daughter to the new pediatric practice about a week and a half ago. I printed out some materials that were suggested and sent them in advance along with her previous health records, lab results, and a symptom diary. I had also spoken to a local nurse who is a PANDAS expert and she sent me a list of lab work that should be done, so I brought that with me.

The nurse practitioner we saw felt it could be PANDAS and ran some of the tests requested. My daughter's ASO came back at 400. They did not do an AntiDNase B titer. They also did not want to put her back on antibiotics until she saw a specialist.

My daughter started to improve a few days after seeing her new pediatrician. It started slowly at around 3 1/2 weeks after onset. She is eating a lot better, though not completely normally, and her anxiety level has gone down. Her tics continue but they are a lot better. Now we mostly notice them when she is stressed or tired. For example, she did some schoolwork and was working really well, then all of a sudden had a complete meltdown and started having tics. She is still extremely emotional too. She seems to be having GERD symptoms now. I don't know if that's a typical symptom, from not eating, or unrelated. She also complained about a red, painful tongue for a while, and is having urination issues (mainly leaking urine and feeling like she has to pee after she's already gone).

We went to a doctor yesterday who is not a specialist but has experience with PANDAS. I didn't really get any clear direction, or even a sense of whether he thought it was PANDAS or not. We still don't technically have a diagnosis. He said she could take antibiotics for 2 weeks per month if we wanted, and we were given a prescription. Aside from that he said her tonsils should come out and that there were some sort of shots (similar to allergy shots?) that we could try.

So, my questions are:

- She only did a short course of antibiotics. If it is PANDAS would her symptoms get better on their own, even if it took almost 4 weeks to see any improvement?

- If it is PANDAS but her symptoms are improving, will antibiotics still be helpful?

- She has been out of school this whole time. I'm trying to determine when she might be able to return. On one hand she seems so much improved that I can almost see her returning soon, but on the other hand, especially after her meltdown today after only about 15 minutes of work, my gut feeling is she isn't ready. Should she be on antibiotics before returning? If so, for how long? The doctor we saw last said it was up to me when to send her back, but I feel like I need some direction.

- I have 4 other kids living at home. Should they be tested for strep? Are they at higher risk for PANDAS? At the same time my daughter became sick my 13 year old was having explosive anger episodes with rapid mood swings (not unusual for him but there was a significant increase). Is it possible he could have PANDAS too? The doctor said that he didn't think my other kids needed to be tested and he didn't know of a genetic component.

- I'm interested in Ibuprofen to help with symptoms. I considered it but was afraid to since she wasn't eating.

Any thoughts or suggestions would be appreciated.

Mimi

#15 airial95

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Posted 08 May 2012 - 08:23 AM

Don't have much time - but let me touch on a couple of things

- EVERYONE in the family should get tested - at a minimum rapid cultures, preferably 72 hour. It is common for someone to be a "carrier" - they have the bacteria present and never get sick (happened personally to me as a child - my sister was the culprit!) It is our pediatrician's standard protocol to test the whole family when one of my kids come up positive, or even if they present with severe enough symptoms.

- it is common for there to be PANDAS among siblings - both of my kids have a dx from Dr. Murphy. She has done research (not sure if it's published or not yet - someone whose up on the science side could probably tell you) that shows a high instance in siblings particularly in families with history of chronic strep, rheumatic fever or other autoimmune illness. I think I remember her telling me that the correlation was even strong when the issues were on the mothers side of the family (as in our case).

- my daughter was my "mild" case, and went undx for over a year - fortunately, we caught several asymptomatic strep infections b/c we tested her when her brother was positive - so she was getting treated anyway. But until her most recent infections, she would clear - almost entierly - of all of her symptoms with a 14 day course of abx. When we suspected PANDAS our pediatrician increased her standard rx to 30 days. Within 3-4 weeks of infection - she was always her normal self with no signs or symptoms. (the last strep infection she had was a nasty bugger - and her worst episode...still dealing with the fall-out and now with exposure at school.)

- as for the ibuprofen - we use it on our son even when he's not eating much, tends to help curb the OCD enough for him to eat something. Our pediatrician said that daily use is okay, as long as we are VERY careful not to exceed the dosages for his weight, its high doseages that can cause problems. So we tend to give it to both of them 2x a day when they're bad, and our son 1x a day when he's plateaued.

Mom of an exceptional 6 y/o son and 8 y/o daughter - BOTH with PANDAS.





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