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Hi,

 

This is my first time posting on this forum and I am hoping for some direction. Last January, both of my daughters (age 9 and 10 at the time) developed one vocal and motor tic each immediately after a bad cold. The older child developed compulsive counting behaviors and separation anxiety. I did not think much of it since they had had minor tics in the past and OCD runs in the family. In June the younger daughter started having around 3 vocal tics simultaneously along with several complex motor tics. She had up to 100 vocal tics per minute so we consulted a couple of specialists. She was diagnosed with Tourettes. The psychiatrist commented it could be PANDAS but he essentially didn't care. He was going to treat her for Tourettes and we were to put her back in school for her own good (we currently homeschool). The pediatric development specialist assured us it probably was PANDAS but he wouldn't have the slightest idea what to do about it. He gave us the option of not treating the tics and didn't seem worried about the damaging effects of homeschooling. We opted to use acupuncture/herbs and cranioscral therapy which seem to make the tics bearable.

 

When my older daughter developed more severe vocal tics in October I took them both to a new pediatrician. He was familiar with PANDAS and recommended a neurologist in St. Louis who had diagnosed it in a few of his referrals. Our appointment is in April. Just for "fun", he tried my older daughter out on antibiotics. A week later she developed a sinus infection and needed more antibiotics. Her tics have improved by about 75% after the two rounds and she has suddenly and dramatically resolved her reading fluency problems that have been plaguing her for some time.

 

Is it common for siblings to develop symptoms like this at the same time? Should I expect the effects of the antibiotic to be temporary? Is there anything I can do before our appointment in April to maintain sanity? Thanks in advance for any advice or support.

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Hi and welcome

just bumping your post up so others will see it

 

 

 

Hi,

 

This is my first time posting on this forum and I am hoping for some direction. Last January, both of my daughters (age 9 and 10 at the time) developed one vocal and motor tic each immediately after a bad cold. The older child developed compulsive counting behaviors and separation anxiety. I did not think much of it since they had had minor tics in the past and OCD runs in the family. In June the younger daughter started having around 3 vocal tics simultaneously along with several complex motor tics. She had up to 100 vocal tics per minute so we consulted a couple of specialists. She was diagnosed with Tourettes. The psychiatrist commented it could be PANDAS but he essentially didn't care. He was going to treat her for Tourettes and we were to put her back in school for her own good (we currently homeschool). The pediatric development specialist assured us it probably was PANDAS but he wouldn't have the slightest idea what to do about it. He gave us the option of not treating the tics and didn't seem worried about the damaging effects of homeschooling. We opted to use acupuncture/herbs and cranioscral therapy which seem to make the tics bearable.

 

When my older daughter developed more severe vocal tics in October I took them both to a new pediatrician. He was familiar with PANDAS and recommended a neurologist in St. Louis who had diagnosed it in a few of his referrals. Our appointment is in April. Just for "fun", he tried my older daughter out on antibiotics. A week later she developed a sinus infection and needed more antibiotics. Her tics have improved by about 75% after the two rounds and she has suddenly and dramatically resolved her reading fluency problems that have been plaguing her for some time.

 

Is it common for siblings to develop symptoms like this at the same time? Should I expect the effects of the antibiotic to be temporary? Is there anything I can do before our appointment in April to maintain sanity? Thanks in advance for any advice or support.

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Welcome. First, more than one child in a family can have PANDAS. Second, if more than one child is sick at the same time, then, yes, they could develop PANDAS at the same time.

 

IF it were PANDAS,it could be a few things. It could be that January, it was more than a cold. The background of strep is that it can appear in atypical symptoms, classic symptom or no physical symptoms at all. I am assuming no strep tests were run in January since at that time there was no concern about it?

 

It could be that if you saw OCD tendencies and/or tics prior to January and IF it were PANDAS, that the initial onset had occurred at an earlier time. Then the cold retriggered symptoms. With PANDAS/PITAND*, subsequent exacerbations can occur with other triggers as well.To further complicate things, other infections, such as walking pneumonia aka Mycoplasma Pneumonia, can be the original trigger/subsequent trigger in some kids too.

 

Now that you see that your daughter's symptoms improved with antibiotics, that would really urge me to look into the possibility of PANDAS more. What antibiotic was she given for the "fun" trial and what was she given for the sinus infection?

 

Now, look to your other child. Does she have tics and/or OCD tendencies still? I would test her for strep (even if no symptoms are present) AND I would tell my pediatrician that I would like to go on a trial of antibiotics as well (what your other daughter got for the sinus infection probably)so you can chart if there is any improvement in her too. Some people will also give short term Ibuprofen as that may take down enough inflammation to see temp improvement. However, that is just a band aid.

 

Will the antibiotic improvement be temporary....no set answer for that. Some PANDAS kids (IF it is PANDAS) will backslide when off antibiotics. Some, will continue to improve. The thing is even if they continue to improve, you cannot ignore that something triggered the symptoms. They can always come back and even worse if the child becomes ill with a trigger again. For that reason, a good portion of kids will stay on a prophylatic antibiotic.

 

 

 

*PITAND is when a different infection triggers the onset of symptoms. Technically PANDAS falls uner the umbrella of PITAND, but over the course of time it has just gotten more attention. Then there is PANS which will eventually be an overall name change to both PANDAS and PITAND. However, that official name change has not occured yet.

Edited by Vickie
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All 3 of our boys (9,10, 11) were sick together without any signs that it could be strep. All 3 began issues around the same time but we still didn't make a connection because they each "presented" very differently. PANDAS doctor told us that 70% of her patients are sibblings. So she is the one that enlightened us on the 2 younger ones and possibly stopped the "train wreck" for them.

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Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to. The social worker told us initially that her tics were "bad habits" then changed her mind. The pscyhiatrist assumed she could improve with habit reversal therapy. The social worker let us know that was absurd.

 

The older child took two rounds of Clindamycin since she is allergic to several antibiotics.

 

I thought of another question. Do some people notice that this appears throughout several generations of a family? I am still open to the idea that this is Tourettes because my husband had similar experiences as a child (although his tics looked more like full blown seizures). However he has a number of autoimmune syndromes including celiac and psoriatic arthritis, which makes me wonder.

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raven

 

Just to confirm what the others have said. I have two pandas daughters who had strep and got ocd at the same time. The older one was mild, and hid a lot, so we didnt figure it out for months. The younger was debilitated by ocd fairly quickly, and we made the connection to pandas. It has been a bumpy road, but things are really good now (fingers crossed). My biggest piece of advice is to get one or two pandas docs on board asap, and fight episodes as aggressively and quickly as you can. The less ground you lose, the less you have to make up.

 

We like clindamycin for strep, or possible strep. We like advil and steroids (although we have no tics- so you should consult your neuro) when behavior flares up. We find ERP (exposure and response prevention therapy) for ocd necessary.

 

My younger daughter has some selective mutism and handwriting and spelling issues- we find when she is "healthy" these things are almost not even present, and when pandas starts to kick in, these things get worse.

 

I would try to keep the kids on antibiotics (not clindamycin) until you see a pandas doc. I would also try dosing consistently with advil for a few days if symptoms get worse.

 

I am just going to say it- and I know the repercussions of what I am saying (phone calls, expense, travel, etc)- April is WAY too far away for an appt. Things may not be great now- but if this is pandas, I can tell you, things can get WAY worse. Especially if they are already symptomatic, any illness, even a cold, has the potential to send things into a downward spiral. Hopefully this won't happen- but I cannot tell you how important it is to have a doc, that you have a relationship with, there for you and your kids. We see two pandas specialists, and frankly, I lay awake at night trying to figure out who else to see and what to do, if we cannot get to these docs when we need them.

 

I don't mean to scare you. Just the opposite, actually- your kids can and will get better- things can get a lot easier- but you need an amazing doc on your side.

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I thought of another question. Do some people notice that this appears throughout several generations of a family? I am still open to the idea that this is Tourettes because my husband had similar experiences as a child (although his tics looked more like full blown seizures). However he has a number of autoimmune syndromes including celiac and psoriatic arthritis, which makes me wonder.

I personally feel that Tourette's is just a broad label you give someone with vocal and motor tics but the label does nothing to help you fix the underlying condition that's causing the physical symptoms. I think once you break down the power of the close-minded gatekeepers in the TS world (who are not highly thought of on this forum), science will find that TS - at least in some cases - has an infection trigger. It may have a genetic component, but something switches that gene "on" and I personally feel you can switch it back "off". My son was once a huge ticcer - and has been tic-free for quite awhile now.

 

Same goes for all those other autoimmune diseases. I don't think you're doomed to a life of "coping" with something just because your relatives had to. In my family, there's a long list of "hereditary" diseases - like macular degeneration, congestive heart disease, diabetes, hearing loss - and it turns out that all of these diseases have something in common - too much homocysteine. Homocysteine production is part of the methylation cycle that occurs in every body. If you have an inefficient methylation process, you can develop a number of chronic health problems. Fix or work around the inefficiency and you can greatly reduce the likelihood that the genes for these diseases will get turned on (methylation controls DNA function and is implicated in cancer and other genetic "switching on" actions). The improvements you see from diet changes are part of this, IMO.

 

On the Latitudes forums, you'll find that most of us think the issues our kids struggle with are biomedical. There's a cause for those issues and if you get to the root of that cause, you can fix things, not just apply pharmacological band-aids (tho band-aids may be very appropriate for getting the family through bad times while you search for that cause).

 

Do your kids have Pandas? You'll eventually find this answer as you keep digging and find doctors who will help you look past labels and superficial band-aids to mask symptoms. You'll read a lot about all sorts of infections and environmental toxins and nutritional deficiencies that, when addressed, work far more effectively than the treatments you're offered in most medical practices. It might be a long journey, but the families on these forums have all done a lot of research and have a lot of different paths for you to explore.

 

I have to agree with DCMom. April is way too far away, especially if that doctor isn't tuned into functional medicine and how one body system impacts another. Most docs stay in their silos. You're probably going to get better results working with someone who understands Pandas/Pitands/Pans (pediatric acute-onset neuropsychiatric syndrome) or is at least willing to learn with you.

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just another little chime in here-- maybe you do not need to hear it again... but April is way too long to wait. If st Louis is close to you-- can you call Dr K right away? I am on the east Coast and do not see him- but Chicago must be closer than DC or CT! There are other doctors elsewhere- look at the topic "doctors we have found helpful"~

I also have 2 daughters with PANDAS (both 10 at onset- about 14 months apart). Every kid obviously is different, but this path can truly be a train going downhill on icy tracks with no conductor! Keep that April appointment (or call and beg for a sooner one) but get a few PANDAS specialist appointments where ever you can in the meantime.

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Yes, there may be a genetic aspect to this autoimmune disorder. Not saying it is soley genetic, but it may play a role.

 

In a recent casual survey of some PANDAS families, 70% responded that BOTH autoimmune and/or severe strep-related illness was noted in family history.

http://myemail.constantcontact.com/PandasNetwork-org-Newsletter--Results-100-Parent-Survey.html?soid=1103470649803&aid=BUYaHuVQGzg#LETTER.BLOCK6

 

Also,these reinforce the possibility of a genetic factor...

 

Autoimmune Disease in Moms Boosts Likelihood of Tics, OCD in Kids

http://www.clinicalpsychiatrynews.com/single-view/autoimmune-disease-in-moms-boosts-likelihood-of-tics-ocd-in-kids/741300568e.html

 

Maternal history of autoimmune disease in children presenting with tics and/or obsessive-compulsive disorder.

http://www.ncbi.nlm.nih.gov/pubmed/20864184

 

 

 

 

 

I thought of another question. Do some people notice that this appears throughout several generations of a family? I am still open to the idea that this is Tourettes because my husband had similar experiences as a child (although his tics looked more like full blown seizures). However he has a number of autoimmune syndromes including celiac and psoriatic arthritis, which makes me wonder.

Edited by Vickie
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raven and dove -- it doesn't appear you need another to chime in .... but that is what i am going to do.

i agree April seems very far away.

 

just our experience, when we realized it was pandas for ds7, about 3-4 months after 'sudden onset' he got on the right abx and saw 100% remission in about 3 days. he was on abx for 30 days, off for about 30 days and then began to backslide. he went back on abx, but not at the same treatment dose at first and not to the same great results.

 

if i had to do it all over again. . . i would keep him on abx until we had a good handle on what was happening - or at least a good enough handle as we could get.

 

i have one ds7 who has diagnosed pandas -- pretty classic presentation and severe enough to make people think, 'what is this". i also have ds9, who last year presented symptoms, had high titers but mild enough to be explained by many others theories from those not 'in the know'. he is doing well now - but i'm quite sure would have gotten worse with inappropriate explanations for what was causing the symptoms.

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Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to.

I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.

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agreed

 

Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to.

I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.

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Thank you for pointing out what should be obvious to me. I tend to tiptoe around doctors because they are so crictical of everything we do. We had her evaluated for autism at age 5 and were given 10 different diagnoses that were not on the spectrum. We couldn't get any therapy for her because the pscyhologists inisted she had autism. Six months later, the same doctor decided she qualified as PDD-NOS which easily encompassed most of her other diagnoses. Now the social worker is puzzled because she doesn't exactly fit her idea of an autistic child either. Looking back, I can see that everything could fit with PANDAS including the severe enuresis and anorexia. What a revelation!

Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to.

I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.

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raven and dove -- it doesn't appear you need another to chime in .... but that is what i am going to do.

i agree April seems very far away.

 

just our experience, when we realized it was pandas for ds7, about 3-4 months after 'sudden onset' he got on the right abx and saw 100% remission in about 3 days. he was on abx for 30 days, off for about 30 days and then began to backslide. he went back on abx, but not at the same treatment dose at first and not to the same great results.

 

if i had to do it all over again. . . i would keep him on abx until we had a good handle on what was happening - or at least a good enough handle as we could get.

 

i have one ds7 who has diagnosed pandas -- pretty classic presentation and severe enough to make people think, 'what is this". i also have ds9, who last year presented symptoms, had high titers but mild enough to be explained by many others theories from those not 'in the know'. he is doing well now - but i'm quite sure would have gotten worse with inappropriate explanations for what was causing the symptoms.

 

I found out who Dr. K is and will call him next week. We just went with the St. Louis doctor becasuse our pediatrician had sent other kids there who recieved a PANDAS diagnosis. I figured a neurologist who believes in the syndrome is better than one that doesn't. I am so puzzled. If this is really an autoimmune syndrome, then why are neurologists diagnosing and treating it?

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