Developmentally Delayed

[Tattoomom]

DD (almost 4) was recently diagnosed with Pragmatic Speech & Processing Delay. She's also immature emotionally. She's in ST/OT and seeing a counselor who also thinks she has PTSD from her past medical history. We didn't put 2 & 2 together until she got a UTI and was put on antibiotics- she seemed to "wake up" and her issues went from 90% to 50% so there's a reason why antibiotics help!

 

Would PANDAS/PANS cause developmental delays? Before the abx we were starting to think she might have high functioning autism, but it's not consistent. Some days she's sharp as a knife and other days she's foggy brained. It's confusing!

 

We're on the waiting list for a Developmental Ped.

[MomWithOCDSon]

TattooMom --

 

PANDAS/PANS can definitely cause some behavioral deficits that mimic developmental delays and/or high-functioning autism. In the height of my DS's worst exacerbation at age 12, he received diagnoses from two docs who had not known him previously of both PDD-NOS and Asperger's, even though his medical and school records indicated no developmental delays whatsoever prior to that point in time. So, how does that get missed for 12 years and then suddenly become manifest?!?! It made absolutely no sense to us, nor did it make sense to the pediatrician and psych that had known him for years prior to this greatest PANDAS onslaught. Following 2 years of abx and other interventions, all reference to PDD and Aspergers have disappeared from his charts and records.

 

Because your DD is younger, I'm guessing you don't have an extensive pre-PANDAS history to demonstrate that her current deficits are not necessarily a part of who she is, but rather the result of this condition. I would follow through with the therapies as, given her impressionable developmental age, you want to provide her with the supports that will help her keep pace developmentally as best she can while you work to address the PANDAS/PANS via medical routes.

 

But by all means, please get her some help for the PANDAS/PANS treatment ASAP! You've already witnessed the benefits of abx, and she's so young that intervention now can really make a dramatic difference in her life and yours!

[Kiera]

Absolutely! When pandas strikes early, all the symptoms of pandas will be "diagnosed" or "labeled" as disorders - ie sensory processing disorder, speech delay, anxiety disorder, OCD, etc, etc. This is what happened to my ds (10). The pandas explosion didn't happen until age 7, but he had all those labels prior to that, and yet again, never met the autism criteria due to his social awareness. "Complex" is what they ended up calling him. So go to the NIMH website on pandas, print it out, also print out Dr Swedo's recent white paper (Feb 12) (can find on pandasnetwork.org) and bring it with you to the dev. ped and highlight every symptom your child has! Also point out the relapsing/remitting nature of symptoms. Chances are the dev ped will blow it off unless he's pandas/pans aware! So my advice to you would be to research, research, research and say this syndrome fits your kid to a T. Also check out Dr K's website, www.webpediatrics.com where he describes certain types of autism - PPD-NOS and Aspergers as actually being undiagnosed PANDAS. It is grassroots work of the multitude of pandas parents around the country that is pushing pandas to the forefront in the hopes of getting it acknowlegded in mainstream medicine. Good luck!

[Tattoomom]

She's been on Amoxicillin 400mg 2x's daily. Ped wants to switch her to Zithromax, full course dose for 2 weeks, then maintenance dose once a week indefinitely. Does that sound like enough? Once a week?!

 

She's never had Zithromax before, so we'll see how that goes...

[airial95]

As a mom of a fellow 4 year old PANDAS kid - PANDAS in young ones absolutely can look like developmental delays, even autism. My son's onset was at 19 months, dx at 26 months. If he had not been advanced developmentally, we wouldn't have noticed the sudden regressing as significantly. If our pediatrician didn't know my kids as well as he did - he has already admitted we would have likely gotten an autism dx or dx of developmental delays.

 

Because our babies aren't fully verbal when it hits, and beacuse their OCD and anxiety tends to manifest differently (i.e. mommy has to do things ritualistically; anxiety manifests as uncontrollable tantrums) - which to some extent are developmentally appropriate - but in all cases make proper dx difficult.

[LNN]

Personally, I'd push for a longer course of daily abx.

 

FWIW, my son's 1st grade teacher thought he might have high functioning autism. Now that he's in 5th grade, the idea seems preposterous. The delays and brain fog were all medical in nature. Once we unraveled the ball of yarn (and continue to unravel), these melted away. if you see days where she's sharp, then that's the real her. Kids with true delays and deficits don't have moments of brilliance. But kids with PANS are often bright kids who get muffled by illness. I think you are on to something.

[kos_mom]

When DS (now 22) was in kindergarten, his teacher told me she thought he may have language delay. We tested him and indeed he had receptive language and processing problems. Perhaps this was PANDAS--he had strep right before entering and had a grimacing thing going on, but not much more. In any case, at the time we thought it was due to having had many ear infections before he was two. I think I read somewhere that ear infections can be a precursor to PANDAS. As I recall, part of the theory of ear infections that are not thoroughly treated soon enough leading to language problems is that sounds become quite uncomfortable during the infection and, for kids, for several more months or so they kind of zone out in the presence of sounds to avoid the discomfort. (It's kind of like hearing everything through an echo box--extrapolating a bit from my adult experience with an ear infection I let go too long.) During that period the neurons for language processing are not connecting the way they should.

 

When DS had an explosion of tics/OCD at 7 and a half we desparately searched for an explanation and ended up at a neuropsych place. With the language problems together with the tics (stereotypical behaviors he called them and was really annoyed when I kept calling them tics), the psych dx'ed him as PDD NOS. I read up (back in those days no internet--had to go search out books)and challenged psych that this could not be something autistic--all those parents knew something was seriously off at age 2 or 3, not suddenly when the kids were almost 8. Finally got a P doc with lots of autistic patients who agreed with me and dx'ed tic-related OCD. (Only tx available was prozac--another story.) I self dx'ed PANDAS when he was 10 and the NIH confirmed the summer he turned 11.

 

In any case, DS did lots of language therapy. What really helped was the summer of third grade when he did Fast Forward--made huge leaps in language progress. If your DD has language problems and has an hx of ear infections it could be PANDAS related but she still may need good language therapy to get those processing neurons to make connections that were missed during ear infections.

[MomWithOCDSon]

She's been on Amoxicillin 400mg 2x's daily. Ped wants to switch her to Zithromax, full course dose for 2 weeks, then maintenance dose once a week indefinitely. Does that sound like enough? Once a week?!

 

She's never had Zithromax before, so we'll see how that goes...

 

At the IOCDF conference just a week ago now, Swedo volunteered that she herself would support a 3 to 4-week course of abx for these kids now, so I have to agree with LLM; push for at least 30 days of full dose abx. Kiera had a great idea to pull some of the seminal paperwork and take it with you to the ped visit; hopefully, that will help convince the doc that somewhat more aggressive treatment tends to yield more favorable results.

 

Good luck!

[1tiredmama]

Yes, indeed! My ds was tested for a gifted and talented program at the age of 6. His IQ was 127. By the age of 9, it dropped to 90! At 12, his IQ was 76! He is 17, and the school keeps testing, the result being around 76! So, I have proof on paper, 127, down to 76! He is learning disabled, and has Aspergers symptoms--very socially delayed.

 

In the year that he has been on abx, he has gone from functioning like a 5 year-old to more like a 10 year-old.

 

You've caught this early, your dd can bounce back. I'll bet her delays are temporary.

 

I asked you in another post, but maybe you missed it--Does your dd still have sinus symptoms when not on an antibiotic?

[Tattoomom]

How long should I push for the daily abx? Is once a week Zith typical?

 

Personally, I'd push for a longer course of daily abx.

 

FWIW, my son's 1st grade teacher thought he might have high functioning autism. Now that he's in 5th grade, the idea seems preposterous. The delays and brain fog were all medical in nature. Once we unraveled the ball of yarn (and continue to unravel), these melted away. if you see days where she's sharp, then that's the real her. Kids with true delays and deficits don't have moments of brilliance. But kids with PANS are often bright kids who get muffled by illness. I think you are on to something.

[Tattoomom]

Yes to language problems. Speech is fine, but she has trouble processing information and has Pragmatic Speech and Processing Delays. She did have a killer sinus infection and has had strep, but no ear infections.

 

 

If your DD has language problems and has an hx of ear infections it could be PANDAS related but she still may need good language therapy to get those processing neurons to make connections that were missed during ear infections.

[Tattoomom]

I think I answered your question, but to my knowledge, her sinuses are fine now. It's hard to tell since she's not quite 4 years old yet and her language is delayed, but she doesn't complain of headaches or grab her eyes anymore.

 

That's amazing about your son! I'm so glad you got him on abx!!

 

Yes, indeed! My ds was tested for a gifted and talented program at the age of 6. His IQ was 127. By the age of 9, it dropped to 90! At 12, his IQ was 76! He is 17, and the school keeps testing, the result being around 76! So, I have proof on paper, 127, down to 76! He is learning disabled, and has Aspergers symptoms--very socially delayed.

 

In the year that he has been on abx, he has gone from functioning like a 5 year-old to more like a 10 year-old.

 

You've caught this early, your dd can bounce back. I'll bet her delays are temporary.

 

I asked you in another post, but maybe you missed it--Does your dd still have sinus symptoms when not on an antibiotic?

[Tattoomom]

She's been on Amoxicillin for almost a month (3 weeks and a couple days) straight. Do you still think she needs 30 days straight of Zith or would 2 weeks straight be enough?

 

 

She's been on Amoxicillin 400mg 2x's daily. Ped wants to switch her to Zithromax, full course dose for 2 weeks, then maintenance dose once a week indefinitely. Does that sound like enough? Once a week?!

 

She's never had Zithromax before, so we'll see how that goes...

 

At the IOCDF conference just a week ago now, Swedo volunteered that she herself would support a 3 to 4-week course of abx for these kids now, so I have to agree with LLM; push for at least 30 days of full dose abx. Kiera had a great idea to pull some of the seminal paperwork and take it with you to the ped visit; hopefully, that will help convince the doc that somewhat more aggressive treatment tends to yield more favorable results.

 

Good luck!

[MomWithOCDSon]

She's been on Amoxicillin for almost a month (3 weeks and a couple days) straight. Do you still think she needs 30 days straight of Zith or would 2 weeks straight be enough?

 

 

Honestly, every kid is different, and I have no experience with zith; our abx of choice and efficacy was Augmentin, and in the end, our DS was on that for almost 2 years, straight!

 

Basically, I would let your DD's behavioral response be your guide. She's young, and from what I can tell, you seem to think you've successfully addressed her active infections. But if/when you step down to lower dosing she seems to take a step back or regress, then I would go back to full dose again and stick with that again for another 3 or 4 weeks.

 

Basically, you want to see her continue to gain/regain developmental ground, with the help of her therapies, consistently, even if those gains are subtle and perhaps less dramatic than they may have appeared when you first introduced the abx. Keep a journal. But if she stalls out or regresses, then that may be evidence of a continuing auto-immune fight on her part. At which point full dose abx or potentially other interventions may be beneficial.

[thereishope]

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Edited September 29, 2019 by Vickie