Our Story

[Erica M]

My name is Erica Miller, I am writing you regarding my 27 month old little boy, Grayson. He reached all of his milestones very early until he was a year old. He spoke many words and did not have any unrealistic phobias. His ears were tubed the first time at 9 months because of chronic "sinus problems". At around one year old, he had a very bad sinus infection including a red, raw throat. Shortly after he began doing what we called "the fire-starter"/ thinking it was a just a phase. He would hold his breath, grind his teeth and make a humming noise. When he did begin to walk, at 16 mos, he was a toe- walker.He also has pretty severe texture issues with food. He will only eat dry foods. We saw a neuro-specialist as advised by our pediatrician, to have him checked for Cerebral Palsy. The Dr told us that what he saw at that visit were definite ocd characteristics but he didnt observe anything else. Grayson continued to regress in his language skills and now has 2 words. He cannot go to daycare or even a busy playground. He only stares at the other kids and does a "ski-jump" motion while grinding his teeth and humming. At home he is much calmer, most of the time. We recently changed pediatricians. His new doc saw him last month. He is also starting with a psychiatrist and speech therapist at the Autism and Spectrum Disorder Clinic. At his last appt he had yet another perrianal rash and a red throat.He has had a raw throat at every appt I can remember. His new Ped suggested a Strep Test. It was positive. After looking through Graysons very thick medical history he was curios why this was his first strep test, as was I. We were given Cephalexin and Diflucan to treat the infection. After 2 days I had a new little boy. He was a totally different child. He still had issues but the improvement

was quite obvious. He could sit still and focus, even try to talk more. He was still hyper though much much less. After the first week he stopped improving. Within a few days we were back to where we had started. We returned to his Dr. and after explaining the whole situation he suggested blood work for antibodies and gave us Clindamyacin. He told me to go home and research Pandas. His Dr is also the founder and head of our local Autism clinic in Dothan AL. I do not have the blood results yet but alot of what I have read is the very definition of Grayson. I would like some opinions of parents who have children with the condition. Does my son sound like he may have pandas? All this time we figured he was possibly Autistic but I saw alot of red flags today. I also realize he could be Autstic as well or that it may be a result. Hes just begun therapy so we really do not have a firm diagnosis of Autism, Gray lacks alot of the key symptoms. His eye contact is great, he does not get lost in his own world, only his tics. His fine motor skills are good as well. Hes also a bad nail biter lately, but only since his latest infection. Hes very affectionate but seems frustrated often. Thank you for reading our story and I look forward to hearing from you!

 

 

 

Erica and Grayson Miller

ericaandgrayson@gmail.co

[Sylvia]

Hi Erica,

 

I am new here too, but I wanted to jump in because I have two boys with autism that I also suspect have PANDAS. They are 12 and 15 and have many things in common with your son. (LOVE his name by the way!)

 

Responding to antibiotics is a huge clue, and I hope and pray you have struck pay dirt, which to me, sounds like you most definitely have!

 

I am sure the other parents here will chime in with some useful information for you, but my advice would be to run with this - get to a doctor in your area that is familiar with PANDAS asap! I think many of the so-called 'autism' behaviors are really strep behaviors/symptoms. My oldest for example will have autism flare ups that come and go. I have often called it transient autism. Now I think those have been PANDAS flares. My youngest has made some incredible gains on Amoxicillin, only to crash and burn when taken off of it. So now we are focusing on long-term antibioitcs for both. This feels like things are finally making sense. How great for you that you are finding out about this at an age when he can really turn his future around. Go with your instincts, they are usually right!

 

 

 

My name is Erica Miller, I am writing you regarding my 27 month old little boy, Grayson. He reached all of his milestones very early until he was a year old. He spoke many words and did not have any unrealistic phobias. His ears were tubed the first time at 9 months because of chronic "sinus problems". At around one year old, he had a very bad sinus infection including a red, raw throat. Shortly after he began doing what we called "the fire-starter"/ thinking it was a just a phase. He would hold his breath, grind his teeth and make a humming noise. When he did begin to walk, at 16 mos, he was a toe- walker.He also has pretty severe texture issues with food. He will only eat dry foods. We saw a neuro-specialist as advised by our pediatrician, to have him checked for Cerebral Palsy. The Dr told us that what he saw at that visit were definite ocd characteristics but he didnt observe anything else. Grayson continued to regress in his language skills and now has 2 words. He cannot go to daycare or even a busy playground. He only stares at the other kids and does a "ski-jump" motion while grinding his teeth and humming. At home he is much calmer, most of the time. We recently changed pediatricians. His new doc saw him last month. He is also starting with a psychiatrist and speech therapist at the Autism and Spectrum Disorder Clinic. At his last appt he had yet another perrianal rash and a red throat.He has had a raw throat at every appt I can remember. His new Ped suggested a Strep Test. It was positive. After looking through Graysons very thick medical history he was curios why this was his first strep test, as was I. We were given Cephalexin and Diflucan to treat the infection. After 2 days I had a new little boy. He was a totally different child. He still had issues but the improvement

was quite obvious. He could sit still and focus, even try to talk more. He was still hyper though much much less. After the first week he stopped improving. Within a few days we were back to where we had started. We returned to his Dr. and after explaining the whole situation he suggested blood work for antibodies and gave us Clindamyacin. He told me to go home and research Pandas. His Dr is also the founder and head of our local Autism clinic in Dothan AL. I do not have the blood results yet but alot of what I have read is the very definition of Grayson. I would like some opinions of parents who have children with the condition. Does my son sound like he may have pandas? All this time we figured he was possibly Autistic but I saw alot of red flags today. I also realize he could be Autstic as well or that it may be a result. Hes just begun therapy so we really do not have a firm diagnosis of Autism, Gray lacks alot of the key symptoms. His eye contact is great, he does not get lost in his own world, only his tics. His fine motor skills are good as well. Hes also a bad nail biter lately, but only since his latest infection. Hes very affectionate but seems frustrated often. Thank you for reading our story and I look forward to hearing from you!

 

 

 

Erica and Grayson Miller

ericaandgrayson@gmail.co

[thereishope]

Welcome. Unfortunately sinus infections and even ear infections can be caused by strep bacteria. That sinus infection with the raw red throat is a red flag and he should have been tested for strep at that time. One may say that he was given an antibiotic so that would have cleared an infection, but it is not necessarily the case. PANDAS kids can be hard to clear of strep. It seems like the it's the minority of PANDAS kids that clear on amox and penicilin. The antibiotics that seem to have worked the best on this forum are Augmentin and Zithromax. However, other antibiotics have worked for some kids too like Keflex and Omnicef. Most kids need more than a 10 day course of antibiotics as well.You say he is on Clindamycin right now? Is he taking it well? Meaning kids usually don't like the taste of Clindamycin and spit it out or refuse it. If he's willing to take it, you can definitely try that first. Get all other family members checked for strep now as well, even if they have no symptoms.

 

Here are some links you can read through. It may answer some questions or create new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

You may also want to chart your son's behaviors right now while and see if you see any patterns or improvements. Everone has their own way of doing this. Some (like me) journal them, some prefer a charting system. Here is a link to a charting system some use on here

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

Edited September 7, 2010 by Vickie

[AmySLP]

First, before this gets lost in everything else, if your're having a hard time getting him to take Clindamycin have it flavored with the flavor-x grape-lemonade (a Target pharmacist recommended this the first time my daughter took it & she actually loved it!).

 

I thought Autism as soon as I read the first few sentence of your post, to be honest. I am a speech therapist and have worked with kids your son's age for more than 7 years. I was primarily an evaluator, so I met alot of kids that first time for an evaluation. I have referred many kids for further testing b/c I suspected Autism or PDD in some form. That is until my typically developing daughter started to have some Autistic-like tendencies at almost 4. It was 7 months later that we got her PANDAS dx. after 7 months of strep infections that we could not erradicate (until she went on CLindamycin). I now work for myself in a nursing home setting out of necessity for working Part-time due to PANDAS. I often think of all thoes kids I referred for further evaluation for Autism & wonder if any of them could have been PANDAS. I worked with the 4 and under population and think often of the kids who at that young age seem to benefit more from ABX than older kids when they are finally diagnosed. I get together monthly with my friends from that job-PTs, OTs & SLPs that work with that young pediatric population. I talk about PANDAS every month at our dinners b/c I want them to keep it fresh in their heads when they are meeting that new child who seems Autistic. I think looking at that child's medical history is key here & I ask them always to keep PANDAS in mind. I'm no longer directly involved with kids in my career, but if I could influence their thinking, it may be one more child properly diagnosed. Educating the direct care providers who see that child weekly may be really beneficial in spreading the word about PANDAS.

 

I hopw that you get continued gains with Grayson on ABX. That is one true sign that it may be PANDAS. Do not put a lot of weight in the bloodwork related to titers-they do not rise in all children. You caught this extremely early if this is PANDAS & it's sounds like your pediatrician is a keeper. Best wishes to you and your son.

 

Amy

[Erica M]

Welcome. Unfortunately sinus infections and even ear infections can be caused by strep bacteria. That sinus infection with the raw red throat is a red flag and he should have been tested for strep at that time. One may say that he was given an antibiotic so that would have cleared an infection, but it is not necessarily the case. PANDAS kids can be hard to clear of strep. It seems like the it's the minority of PANDAS kids that clear on amox and penicilin. The antibiotics that seem to have worked the best on this forum are Augmentin and Zithromax. However, other antibiotics have worked for some kids too like Keflex and Omnicef. Most kids need more than a 10 day course of antibiotics as well.You say he is on Clindamycin right now? Is he taking it well? Meaning kids usually don't like the taste of Clindamycin and spit it out or refuse it. If he's willing to take it, you can definitely try that first. Get all other family members checked for strep now as well, even if they have no symptoms.

 

Here are some links you can read through. It may answer some questions or create new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Funny you should mention that... We just started the clindamycin today and no, he doesnt care for it. I had to sit on him and hold his nose. If that keeps up Ill likely ask for something different. Im getting tested tomorrow and my husband soon., Thanks for all the info links!

 

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

You may also want to chart your son's behaviors right now while and see if you see any patterns or improvements. Everone has their own way of doing this. Some (like me) journal them, some prefer a charting system. Here is a link to a charting system some use on here

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

[matis_mom]

Hi Erica,

You are so blessed to have changed doctors, and it looks like you have a good one too! The fact that you saw such a dramatic improvement on antibiotics is, to me, the biggest factor in leaning towards a PANDAS diagnosis. It seems you are in good hands with your doctor and hopefully you will see continued and sustained improvement on the Clindamycin. If you spend a bit of time reading this forum, you will see that even though strep is the most common trigger, other infections can cause symptoms, so while it's great you've been able to make such a clear connection, keep an open mind about testing for other possible infectious agents (mycoplasma, Lyme, etc).