Just one more question...

[1tiredmama]

This question is for those parents whose children were dx'd and treated successfully for PITANDS. Does the lack of an acute, dramatic onset of first symptoms rule out PITANDS. With my son, the first symptoms (which started in the toddler/preschool years) as with every new symptom over the years came about gradually.

 

Also, does the first symptom have to be either OCD or tics?

 

Thank you!

[LNN]

There is much debate on this forum about the sudden onset issue. It is still used for research criteria because researchers need a way to select Pandas kids and not get traditional OCD/TS kids in their research studies. It is also much easier for a clinician trying to make a diagnosis to see the difference between a kid who has always had issues vs. one who was neurotypical and then one day wasn't. But some on the forum feel that the initial "sudden" event happened so early in life or at a time when they weren't aware of Pandas that they missed that first "sudden" thing and they've learned to live with a new normal. In and of itself, if that were the only symptom that didn't fit the criteria, I would continue to pursue.

 

As for OCD and/or tics - again, my understanding is that at least one or the other needs to be present for diagnosis. OCD can manifest in many ways and it can be disguised/hidden by the sufferer. But IMO, yes, OCD or tics needs to be present for Pandas. PANS may end up using different criteria.

 

Based on your original post, I agree with others who see outlier symptoms that shouldn't (IMO) be rolled into Pandas - the muscle/joint pain, the connective tissue issue, the chronic fatigue. These things are often present in tick-borne illnesses but are not in the Pandas criteria. I would absolutely pursue PANS. When a child winds up with as many alphabet labels as your son and no doctor has looked for infection, it could hold a huge potential. But since your son is "complicated" and he's been sick for so long, it's possible he now has more than one issue to tackle. It may not be a matter of one antibiotic or one infection. You could remove that layer and then find out there's something else to treat. Like peeling an onion. Once you're sick for a long time, the body builds up toxins and becomes a nice home for viruses, infections, mineral deficiencies, etc.

 

I would absolutely look for a doctor who is willing to treat infection-triggered issues, like a Pandas doctor or an LLMD (lyme literate doctor) or DAN (defeat autism now) or an integrative doctor who uses both traditional medications and natural supplements. I think there's reason to be hopeful, now that you're on this trail. It just may take awhile.

[tpotter]

There is much debate on this forum about the sudden onset issue. It is still used for research criteria because researchers need a way to select Pandas kids and not get traditional OCD/TS kids in their research studies. It is also much easier for a clinician trying to make a diagnosis to see the difference between a kid who has always had issues vs. one who was neurotypical and then one day wasn't. But some on the forum feel that the initial "sudden" event happened so early in life or at a time when they weren't aware of Pandas that they missed that first "sudden" thing and they've learned to live with a new normal. In and of itself, if that were the only symptom that didn't fit the criteria, I would continue to pursue.

 

As for OCD and/or tics - again, my understanding is that at least one or the other needs to be present for diagnosis. OCD can manifest in many ways and it can be disguised/hidden by the sufferer. But IMO, yes, OCD or tics needs to be present for Pandas. PANS may end up using different criteria.

 

Based on your original post, I agree with others who see outlier symptoms that shouldn't (IMO) be rolled into Pandas - the muscle/joint pain, the connective tissue issue, the chronic fatigue. These things are often present in tick-borne illnesses but are not in the Pandas criteria. I would absolutely pursue PANS. When a child winds up with as many alphabet labels as your son and no doctor has looked for infection, it could hold a huge potential. But since your son is "complicated" and he's been sick for so long, it's possible he now has more than one issue to tackle. It may not be a matter of one antibiotic or one infection. You could remove that layer and then find out there's something else to treat. Like peeling an onion. Once you're sick for a long time, the body builds up toxins and becomes a nice home for viruses, infections, mineral deficiencies, etc.

 

I would absolutely look for a doctor who is willing to treat infection-triggered issues, like a Pandas doctor or an LLMD (lyme literate doctor) or DAN (defeat autism now) or an integrative doctor who uses both traditional medications and natural supplements. I think there's reason to be hopeful, now that you're on this trail. It just may take awhile.

 

 

DS now 19 did not have his first MAJOR symptoms until 15 when he became suicidal (which I actually believe was OCD...he felt like he "had to" jump in front of the train, a car, out the window, etc.). We only figured it out, because DS now 16 was more classic, and we found a PANDAS specialist who was able to tie the 2 together. DS 16 had classic sudden onset, but STILL has strep + a bunch of tick borne diseases and serious exposure to other things, too. DS 19 could not be classified as sudden onset, probably because we didn't know what was happening then. But, he constantly had strep, had neuropsych symptoms, including every one you mentioned the other day, and a few years ago, we found a writing log of his from first grade showing that PANS had to have started at least in 1st grade. He also had a huge allergic reaction to the MMR vaccine (hives all over his body), so it may have started then or could have even been earlier. In other words, although he can't be classified as "sudden" onset, I suspect he was having multiple symptoms over the years, and we just didn't know until he had his huge one.

 

I would definitely test for PANS (that's many infections, not just strep), and honestly, the PANDAS specialists are the best to do that with, because they have been collaborating and figuring a lot of this out together along with the help of parents. They know what to look for.

[Kiera]

1tiredmama, I sent you a personal message (pm) the other day. Look for the #1 in the top right cornor of your screen and click on it to open message!

[rowingmom]

I would definitely test for PANS (that's many infections, not just strep), and honestly, the PANDAS specialists are the best to do that with, because they have been collaborating and figuring a lot of this out together along with the help of parents. They know what to look for.

 

Have you found that PANDAS specialists test and treat properly for tick-borne infections?

[Dedee]

I agree with LLM's post. I just wanted to add that OCD presents very differently in different kids. I have three PANS children all with OCD. However, I didn't recognize the OCD in my daughter for years. She isn't typical hand washing or contamination fears. She has a very rigid personality with low frustration tolerance which on the outside looks alot like a strong willed (or spoiled) little girl. There was a post on here not to long ago in which someone (I can't remember who) discussed the differences in how OCD can look in children. It was a great description and I wish I had saved it for reference for others. Maybe someone will come along and remember where it was for you. My daughter could easily be mistaken for bipolar. Even my husband has mentioned it....although after my response, I doubt he will ever say it out loud again. It is much easier to label these children than go through the long process of accurate diagnosis and treatment by these doctors.

 

When I took my daughter to Dr. M in Florida and we were discussing the difference in how her PANS looks and why I was so hesitant to call it OCD, she just shook her head. She said in children, it often looks just like my daughter (rages, inflexibility, frustration intolerance)and that it is actually more rare to see the "typical" handwashing type OCD in young kids. I think as a society, we would rather just label the parents as bad parents or label the child because that's what is most commonly accepted. So my point is that you may be missing OCD behavior because you (or your doctor)have labeled it as something eles. Just something to think about. Don't give up.

 

Dedee

[1tiredmama]

Thank you all so much for your responses. Every piece of information helps. I take notes on what I learn!

 

Dedee, I have seen the list of ways that a child can present with OCD. I still do not think that there was any OCD in early childhood. It may have started around age 8 or 9 when he started a compulsive tongue thrust that moved his front teeth to the point of needing orthodontic hardware to stop the behavior and pull the teeth back in. BUT this could have been a tic, I don't know. Either way, it was not his first symptom. I CAN say that he started pulling his hair a few years back, creating bald spots, and I know that's OCD.

 

Rowingmom, I'm still looking for a specialist that I can afford, one that takes insurance. And, preferably one that I can drive to in a day. Closest one is Dr. L. and she isn't taking insurance.

 

LLM and Tpotter, you make a good point that maybe "sudden" symptoms can be overlooked. I could see this happening, especially in early childhood when even the healthiest, neurotypical child's behavior is erratic and ever-changing. and, I agree that I need to look outside of the strep box. My son's rheumatologist just agreed to test for mycoplasma and retest for lyme. It's a start...

 

Thank you all for reading and responding to this post!

[MichaelTampa]

LLM and Tpotter, you make a good point that maybe "sudden" symptoms can be overlooked. I could see this happening, especially in early childhood when even the healthiest, neurotypical child's behavior is erratic and ever-changing. and, I agree that I need to look outside of the strep box. My son's rheumatologist just agreed to test for mycoplasma and retest for lyme. It's a start...

 

 

I just want to give my opinion that I do not think a rheumatologist nor a PANDAS expert is an appropriate place to test for lyme. I think a lyme specialist is the only person that is going to have enough experience to do that justice, given the complicated nature of how test results need to be read.

[LNN]

Just because a doctor doesn't accept insurance doesn't mean you can't get reimbursed by insurance. For example, Dr L and many lyme doctors have a set fee - let's say $100. For that $100, they spend an hour with you. Insurance says "you should be able to see a patient in 30 min, therefore, we will only pay you $50 for seeing our patient" So for these docs who decide to spend more than the "alloted" time, they won't accept whatever payment the insurance co. is willing to pay.

 

However, they will give you an insurance form that you can submit to your insurance co. So you pay the $100 out of pocket at the time of your appt. Then you submit the paperwork to you insurance co. and they say "well, we'll pay $50 for this visit, so we'll send reimburse you $50 and the other $50 comes out of your pocket." So it's not as easy or cheap as seeing a doctor who does accept insurance, but it's not as awful as it initially seems.

 

We wasted a lot of time working with doctors who accepted insurance but didn't help us get closer to finding answers. Sometimes, it's worth the expense to see someone who specializes in an area, even if they don't accept insurance reimbursements.

[KaraM]

Hi,

 

My dd did not have the sudden, overnight onset that is typically described as a criteria. Her OCD became obvious over the course of a few months. There was definitely a day where I said to myself, "there is clearly a problem," but the behaviors had been slowly building up to a crescendo.

 

She ended up being diagnosed with PANDAS about 3 after the official OCD diagnosis. She did well on Zithromax for about 6 months. Then she declined. We eventually found Bartonella and Lyme as well and are treating that now with good success (not 100%, but getting there).

 

Kara

[EAMom]

Hi,

 

My dd did not have the sudden, overnight onset that is typically described as a criteria. Her OCD became obvious over the course of a few months. There was definitely a day where I said to myself, "there is clearly a problem," but the behaviors had been slowly building up to a crescendo.

 

She ended up being diagnosed with PANDAS about 3 after the official OCD diagnosis. She did well on Zithromax for about 6 months. Then she declined. We eventually found Bartonella and Lyme as well and are treating that now with good success (not 100%, but getting there).

 

Kara

 

My dd had a time and date where she "changed" but most of the change was temper tantrums/emotional lability/sensory defensiveness/stopped eating breakfast for the first 4 weeks. She did have some OCD but it was kind of "hidden" (not classic handwashing stuff, and she kept it to herself). She became a very difficult and anxious chid, but nothing that screamed obvious OCD at that point. Then she had 2 teeth extracted (orthodontic reasons) and symptoms got worse. After the 2nd set of extractions (a couple of weeks later) she was a totally changed person from 6 weeks b-4 before (very bi-polar symptoms, full-blown anorexia nervosa). I do wonder if we hadn't had the 2 sets of extractions, if things wouldn't have "come to a head" (from normal child--->7 year old with anorexia nervosa) quite so acutely? .... I wonder if things would have just festered much more slowly and it would have been more difficult to come up with a diagnosis?

Edited February 11, 2012 by EAMom