Were there little signs early on?

[Lydiasmum]

Hello all. I'm posting a lot lately in my quest for answers to questions that play on my mind. I'll try to keep it short and not relive entire history all over...

 

My DD (now nearly 6 years old) had a traumatic birth and needed resuscitating. An MRI revealed basal ganglia bleed. She has done great considering and met all milestones even though a little later than average. UK doctors don't go with PANDAS and all her troubles are being blamed on her rocky start in life. She does have baseline issues due to her birth, i.e. poor fine motor skills and a lazy eye. However, there is definitely more at play. I have read tonnes about PANDAS and she ticks all the boxes, frequent urination precursor, debilitating anxiety, a diagnosed strep infection last Summer (I had to beg for a throat swab) followed exactly 4 weeks later by sudden onset multiple motor/vocal tics and intrusive thoughts (I now know there were several untreated strep infections early on).

 

Here's the thing. She was dx with Sensory Processing Disorder at 3 years. She was always fussy and irritable as a baby and reacted strongly to strangers and new environments. She seemed 'different' early on and was always on the move. Rocking behaviour and always restless and hyperactive. Probably had complex motor tics for as long as I can remember, looking back at some behaviours. She is VERY emotional too. So there were things about her way before the big crisis we had at 4.5 years.

 

We have just had TS dx and are about to get Asperger's too (she does appear to have traits but only a few of them are remain consistent). I won't get too hung up on the labels, but DD's early years make me doubt my gut instinct sometimes. She is currently stable and has been on prophylaxis abx for 8 months (lots of persuading of paediatrician required!). If I'm honest this is the best she has been confidence-wise in 2 years (natural growth and development?) and she seems generally much calmer and more focused. Ped wants to remove abx soon to see what happens. I am scared, although I have no real 'proof' it is them that are keeping her stable. She did get though winter with no illness.

 

I would appreciate your thoughts on this. Did your babies have very early signs before initial onset if you really think about it?

Edited April 6, 2014 by lydiasmum

[MomWithOCDSon]

Yes, definitely.

 

My DS was prone to chronic ear infections from about 14 mos. old until we finally got ear tubes inserted just after he turned 3. As those infections began to be prominent in his life, he became shyer at preschool, more in his own world a bit, especially among strangers and peer groups. We obviously had him tested for hearing loss, thinking that maybe he was suffering from all those infections; his hearing was fine. He, too, was eventually diagnosed with a sensory processing disorder at age 5, and both his pediatrician and a child psychologist we consulted told us our DS was "highly sensitive" and "highly intelligent," causing him some anxiety among his peer group because his interests, intellect and sensibilities were so discrepant from the average 5-year-old.

 

Finally, at 6.5 years, he was diagnosed with "regular OCD." While we knew he'd been exposed to strep because of multiple form letters to that effect coming home from his kindergarten and first grade class, he'd never had any of the classic physical signs of strep . . . no fever, no sore throat, etc. But then his dad or I would come down with a classic case of strep ourselves; we began to think of DS as a carrier.

 

Because our DS was asymptomatic (physically, at least, though not mentally given the OCD), we had a hard time getting anyone to take us seriously about PANDAS. Then, once I read "Saving Sammy" and found this forum, I learned about asymptomatic strep having much the same effect on some of our kids as classic strep does, and about how strep bacterium are also thought to lurk in inner ear fluid in many ear infection cases.

 

If I'd only known then what I know now . . .

[qannie47]

When my ds was dx with Pandas, age 6, as I learned about this disorder all the "peculiar" momentary blips on the radar suddenly made perfect sense. Dr. k believes that Pandas actually starts to get set in motion around 18 months of age, then the "big" episode happens around age 5/6. My ds was also dx with Hypo sensory, age 4, then there was that strange period of time when at age 3, my son suddenly went from walking with a typical strike pattern to tip-toe walking. He was diagnosed with "idiopathic tip-toe walking". Meaning, the specialist had no answers for me....Then there was the time when coming off of a chronic sinus infection, age 5, that he suddenly looked "autistic": lots of spinning and not connected...His doc and I chalked that up to a reaction to allergy meds...all of these things disappeared as suddenly as they appeared.

 

When my excellent peds doc finally put the pieces together, we looked back at his records. My phone calls, citing these unusual behaviors always followed after a strep or sinus infection............

 

So yes, I think that Pandas does not exactly appear overnight as reported. I agree that many have that big sudden onset, but when one looks back, I bet many can find that what they had brewing was the "Perfect Storm".

[Rachel]

This is an interesting post. I have wondered about the same thing because I have also been going through my son's old medical records. I thought after the brain antibodies were found in my son, the doctors would diagnosis him with PANDAS. My son had a lot of ear and sinus infections when he was younger. He also had croup 2-3 times a year until the age of 11. MAYO called it spasmonic croup. My son came down with this during his week long appointments with MAYO in Rochester, MN. He was diagnosis with POTS was reconfirmed but it was good to get another doctor's view of croup. My son has not been diagnosied with PANDAS but has a diagnosis that our insurance will accept.

 

In the USA, PANDAS is still not accepted as a medical diagnosis by many doctors either. Many insurance companies will also not provide medical coverage for this diagnosis. So having a diagnosis they will accept if you have insurance can be a blessing.

 

My son is also on antibiotics. Are your doctors doing any blood work to see if the antibiotics are helping? My son has a high viral load of Mycoplasma P. He had a blood test a week ago but have not heard back on the results. He has only been on them for 16 weeks not nearly as long as your daughter. You mentioned she had strep. Are they rechecking those titers? That should give your doctors some answers about what the antibiotics are doing . As a parent I would also be scared about taking her off the antibiotics especially since they seem to be helping. If she gets sick after she is taken off, I would beg her doctors to checked the strep antibodies to see if they have came up. From reading about PANDAS, I understand this is one way to keep a check on this. I am very new to all of this so hopefully others on the forum can give some better advice. Wishing you the best and keep us posted on her recovery.

[mama2alex]

My ds, now almost 14, also had a traumatic birth - I pushed for 5 1/2 hours; he had to be vacuum extracted after meconium was detected; I hemorrhaged an hour after birth and had to have emergency surgery. However, his Apgars were good. He had sleeping issues from the beginning, and was obviously sensitive to light and sound. When I eliminated dairy and chocolate, that helped somewhat during breastfeeding, but not a lot. He had to be held and rocked A LOT. First pneumonia at age 3 - subsequent bouts at ages 5, 6, 7 and almost 9. Asthma with illnesses started at age 6, a few weeks after a DTaP booster. Sensory processing disorder diagnosed at 5 and treated with a year of OT, with no real effect. Auditory processing disorder diagnosed at age 7 and treated at age 13. First PANS flare at age 5 with pneumonia - receded on its own after 6 weeks. The big PANS onset came at almost 9 with pneumonia. He has always had separation anxiety, but it became very severe with the big PANS onset. He's been moody, cried easily, and had difficulty with transitions since the beginning. He's had attention issues for a long time - not really sure when they started, but it was early.

 

For us, all evidence points to congenital Lyme and he's been getting better and better with Lyme treatment, et al over the last 3 1/2 years. Keep looking for underlying causes. I really don't buy these diagnoses that just describe the symptoms. I know that out in society it can be helpful to have one (or more) of these diagnoses - especially in school - but they will not get you to real healing.

 

If abx have helped stabilize her, I would fight to keep them. Trust your mom instincts!

[MaryAW]

I was at the NE PANS/PANDAS Parents Assoc. event yesterday where Dr. Swedo participated in a Q & A. She specifically spoke about this. I may not get everything exactly right here, but I believe she called them subclinical symptoms and that they come on prior to the acute onset of the PANS/PANDAS. She spoke about the urinary frequency being a real marker for impending PANDAS. My daughter had this almost exactly a year before her explosion.

[qannie47]

That's interesting, both my kids peed up a storm from the time the were potty trained....anybody whom ever had contact with them asked me if they had bladder infections...Only one twin dx with Pandas, but other has his own set of stuff.............

[Brese]

My child had no symptoms and i could not even understand the change that happened over a few weeks. I thought back because normally with OCD there are some signs she had no signs at all. I think that is why we got the PANDAS diagnosis in 3 months after it started. By 5 months onset IVIG and today no symptoms for almost 2 years.