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Help for my 3yr old


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15 replies to this topic

#1 sam268

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Posted 25 October 2008 - 02:56 PM

I have a 3 yr old who I am very worried about. I have no idea if he has PANDAS or not but something strange is going on. Quick history is that my son has had mild dev delays (hypotonia, articulation disorder, sensory processing disorder that at times looks like budding ADHD). He has allergies, asthma and was recently dx with Eosinophilic Gastroenteriis via endoscopy. He does not "meet the criteria" for ASD but I work with kids on the spectrum and he is one of those "gray area kids." Dev ped doens't think he's ASD or ADHD yet. He has mild anxiety and is quite active on a normal basis. He's been receiving therapy since 15months old. However, where my concern comes in, is when he is ill (which is QUITE often in the fall/winter) he turns into a totally different kid. He becomes EXCESSIVELY hyper (to the point of being unsafe), tantrums inthe form of megameltdowns b/c he gets "stuck" on something very minor and loses all ability to reason or hear us (it's important to note that he rarely EVER tantrums normally), he'll throw himself around, crashing into walls, scream into hysteria etc. It is so distrubing ot see my child transformed. He will become get very rigid about things and how they need to be (as opposed to being flexible when NOT sick). He gets SEVERE anxiety of WEIRD things (bugs in his food, seeing monsters on the shower curtain, terrified of seeing a dark closet etc). he can even become aggressive. I can't stress enough that this is such a drastic change. This recent illness (6 days of low grade fever) has brought out the worst. I took him to the doc and asked about PANDAS. They swabbed him for strep and the rapid came back negative. he DID have strep at 18months old but never again to my knowledge. I did have his ASO and the other blood test done whe he was well once and they came back "within normal limits." So, my first question is: does this mean he's negative for PANDAS? what else should I be investigating? What causes a child to change drastically during illnesses? his ped just told me to put him on Risperdal. I think he missed my gigantic point that I wanted to find the underlying cause....not just control the behaviors....especially when we don't have these behaviors WHEN HE IS NOT SICK. I would be so grateful for any insight or advice. Can anyone suggest a doc on the east coast (we'll travel). He has had his tonsils/adenoids out, two sets of tubes in the ears, he's on fish oils, probiotic (heavy duty: VSL #3), carnitor, vit c, vit e, zinc, transfer factor, selenium etc. We are trying to keep his body healthy in the meantime. i think one of my main questions is: if he keeps coming up negative for strep with the throat culture and his one ASO and other blood test were within nomral limits, does this definitely rule out PANDAS? What type of doc is the best to weed through this? geneticist, neurologist, infectious disease, child psychiatrist? Thanks! Kim


#2 p_mom

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Posted 25 October 2008 - 03:22 PM

Quickly 'cause I gotta go. NO.... Negative titers and cultures do NOT automatically rule out PANDAS. Please read through this PANDAS forum...you will find out much of the necesary info. and answers to your questions.

Kelly

#3 sam268

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Posted 25 October 2008 - 03:26 PM

Okay, I was reading through it right after I posted. My question now becomes: what do I do from here to rule out the diagnosis or confirm it? Do I go to my ped with a list of bloodwork I want run? Or do i get on a long wating list for a specialist? I am very afraid of waiting too long. I have this "gut" mommy feeling htat time is of the essence. Each episode is getting worse. This most recent illness has scared my husband and I badly. We want our son "back." He usually goes back to "normal" when he gets well but I'm starting to see a snowball effect and am worried thse are going to cause permanent brain changes (espeically so young). thanks for replying so quickly!

#4 eamom

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Posted 25 October 2008 - 04:26 PM

Hi Kim,

Normal titers do not rule out PANDAS (many docs are confused about this, and will rule out pandas based on low titers alone). Our dd had low/normal titers despite postive throat culture and full blown psyhotic pandas with anorexia nervosa/ocd/depression/some tics (she was 7.5 years old).

always insist on 72 hours culture if rapid is neg. Even that can be neg. For example, strep can be in the sinuses, skin, or rectal and the throat culture wouldn't show this. Other reasons for neg culture (but still has strep) http://www.latitudes...?showtopic=3947

There is no single test for PANDAS...you need to look at a history of exacerbations, response to antibioitcs. Sometimes you don't have a throat culture or high titers but you may have other clues...for example a sibling with a sore throat after sleepaway camp. Our dd had exacerbations after 2 tooth extractions (for orthodontic reasons). We think the strep in her throat was released into her bloodstream after each extraction, causing a worsening of symptoms. This can happen with dental cleanings as well. So, diagnosing pandas is like putting together a puzzle....blood tests, cultures, are just some of the clues to go with. No single test is conclusive. Also, keep in mind that lots of normal kids may have high titers...so you need to look at the big picture and not just one test.

Many find it helpful to keep good records of family illness, behavior changes. Keep a calender or a logbook. Also, be vigalent about doing throat cultures, even if your child doesn't have "normal" strep symptoms. My kids either had no symptoms or had just a fever with no sore throat when they had strep.

Urinary issues (increased daytime frequency) is also, IMO, a big pandas clue. 58% of PANDAS kids will have this symptom. I think my dd had this symptom when she was 4 but not with her most recent episode. Of course, if your child has these symptoms, you would want to run a urinalysis and culture (which most docs would want to anyway) in addition to a throat culture (which most docs wouldn't even think of doing).

I would rec. having all family members cultured, esp. if your child is "acting different". Our dd recently started showing mild pandas symptoms this month despite being on prophylactic antibiotics...it turns out her sister was positive for strep (showing no signs but had gotten a couple of strep notices in school) and probably exposing her for the past month.

If you are close to Newark you might consider Rosario Trifiletti (sp?), a pediatric neurologist with an interest in PANDAS. http://www.umdnj.edu...fall2005/11.htm
If you google his name, he has co-authored a lot of papers on PANDAS.

If you are close to Yale you might also try contacting Dr. Leckman (and associates eg. Dr. Kyle Williams) at the Yale Child Study Center.

#5 Pudgeo

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Posted 25 October 2008 - 04:28 PM

Oh my ..I am HORRIFIED a Dr would consider putting a 3 yr old on risperdal!!!
Once again traditional Dr just want to put a BIG BANDAID on the problem!!!
FIrst of all you need to go see a DAN dr...(I know I say this all the time now) but hear me out...
My son also had many things going on like yours(dev delay, speech delay) and I didn't do anything about it...then at 9 yrs old his immune system whacks out...I wish I would have seen a DAN a LONG time ago and maybe some of this could have been avoided. I truelly believe if I would have had him tested for food sensitivities, metals, and vitamin defiencies he could have made more progress ( and possibly avoided the big PANDAS crash)
Also after having Dr's at Kaiser (my HMO) mis-diagnose my son for son long (8 months) and seeing them just keep handing us meds without really listening to me(how many times did I say all this started after a fever??) Especially my neuro told me she didn't believe in PANDAS. They are of little help...Keep educating yourself and this forum has the GREATEST parents who research everything!!
Sorry to rant.....Sarah

#6 ratlenhum

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Posted 25 October 2008 - 05:57 PM

Run a PANDAS profile www.neurorelief.com its a better indicator.

Risperdal is nasty stuff. It is KNOWN to cause, not MAY CAUSE these conditions in children.

Tardive Dyskinesia (TD) is a serious, sometimes permanent side effect reported with RISPERDAL and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped.

High blood sugar and diabetes have been reported with RISPERDAL and similar medications. If the person being treated has diabetes or risk factors such as being overweight or a family history of diabetes, blood sugar testing should be performed at the beginning and throughout treatment with RISPERDAL. Complications of diabetes can be serious and even life threatening. If signs of high blood sugar or diabetes develop, such as being thirsty all the time, going to the bathroom a lot, or feeling weak or hungry, contact your doctor.

Neuroleptic Malignant Syndrome (NMS) is a rare and potentially fatal side effect reported with RISPERDAL and similar medications. Call your doctor immediately if the person being treated develops symptoms such as high fever; stiff muscles; shaking; confusion; sweating; changes in pulse, heart rate, or blood pressure; or muscle pain and weakness. Treatment should be stopped if the person being treated has NMS.

RISPERDAL should be used cautiously in people with a seizure disorder, who have had seizures in the past, or who have conditions that increase their risk for seizures.

RISPERDAL and similar medications can raise the blood levels of a hormone known as prolactin, causing a condition known as hyperprolactinemia. Blood levels of prolactin remain elevated with continued use. Some side effects seen with these medications include the absence of a menstrual period; breasts producing milk; the development of breasts by males; and the inability to achieve an erection. The connection between prolactin levels and side effects is unknown.

Extrapyramidal Symptoms (EPS) are usually persistent movement disorders or muscle disturbances, such as restlessness, tremors, and muscle stiffness. If you observe any of these symptoms, talk to your healthcare professional.

Some people taking RISPERDAL may feel faint or lightheaded when they stand up or sit up too quickly. By standing up or sitting up slowly and following your healthcare professional's dosing instructions, this side effect may be reduced or it may go away over time.



At my doctor's office there is a child that was on risperdal for 3 months that developed seizures and tics. They stopped the risperdal and months later he still has the condition. They fear it is permanent.

I personally wouldn't touch the stuff with a 10 foot pole.


SARAH.....you know we were with a DAN for almost 3 years and doing biomed for a year before that and we still suffered the big PANDAS crash, so don't beat yourself up. I blame my DAN for not catching the signs sooner and for my having to tell them to test based on his symptoms. Needless to say, we have a new DAN.

Kerrie

#7 sam268

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Posted 26 October 2008 - 03:59 PM

Thank you to all who replied. I have a lot of reading to do and will make some phone calls in the morning. Don't worry Kerrie, I am not going to touch Risperdal. It was the most ridiculous suggestion by the ped, given only b/c he had no idea what else to offer me. So, we will try to get into a specialist. We have been seeing a DAN doc since 15months old for allergies, asthma and dev delays. however, I'm thinking I may need to change docs (for a vareity of reasons including $$$). If anyone has suggesitons, I'm all ears.

#8 myrose

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Posted 26 October 2008 - 05:58 PM

Have you considered or heard of a live/dry blood analysis? My daughter was on supplements but they never seemed to help. Through this low cost test we learned her body was not using the supplements correctly and resognizing some of them as toxins and eliminating them. We also found a fungus in her digestive tract and it also showed heavy metal concentration on the right side of her brain. The test was out of pocket $125.00 here for us.
We are on a six week program to correct her digestive system, rid of a virus it also found and the last 2 weeks we will be detoxing for the medal load she is carrying. Mercury as well in th ebody causes all the symptoms you speak of. Maybe the supplements you are using are not being absorbed or recognized by his body as good things, thus ridding of them before any nutritional gain is met. This test can show you everything from parasties, yeast, heavy metal, nutrirents you are not sufficient in, shows even if the supplements you are giving are working, you name it with this test!
I only had wished we heard and knew of it a long long time ago. I have a really good feeling about this and I have that Mommy gut ###### t well telling me that this is going to be very beneficial for her. Its just a prick of the finger as well so its not the trauma of having to go through the regular blood tests. Its quite amazing this test. Not that practiced with modern docs but they use it widely in Europe. Goodluck to you and I sure hope you the best no matter what you decide. I know how it feels to see your child fall apart in front of your eyes! Also post about Dr. K on here. If you travel ANYWHERE chicago is the place to go for pandas (if this is what you are dealing with) Apparently he treats children with a steriod burst...if they react well, then from my understanding he diagnoses as Pandas (if they meet the other criteria as well) Also inquire about IVIG from Pomerno and Worried Dad, they have both had the procedure with Dr. K and are having GOOD results from what I read. Hang on there and I hope you nothing but the best in you road ahead!

#9 sam268

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Posted 29 October 2008 - 03:25 PM

OMG, I just had to vent here that I just got off the phone with our Dev Ped and they said that if it wasn't due to the fever (meaning when the fever wears off, if hte behaviors are still there) they'd be happy to put him on Risperdal and do blood checks every 4mo. THEN, they asked me if I had ever considered if some of the "alternative medicine" might be "doing this to him." I suppose she's referring to the probiotic (that the allergist recommended), the carnitor (which the geneticist recommended dueto hypotonia) and teh zinc which was recommended due to low levels in his bloodwork. Hmmmm.....how frustrating is this? I just want to find a doctor I can trust and who isn't looking at us like we're crazy and who dosn't want ot put my 3 year old on meds to cover up the symptoms (w/o knowing WHAT they are). I am so frustrated today. Kim

#10 dedee

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Posted 29 October 2008 - 03:38 PM

Kim,

Unfortunately, we can all identify with your frustration and I feel angry and frustrated just reading what you are going through. I had two "top notch" specialist, one ID and a neurologist basically tell us there isn't a behavioral association with strep. I invited them both to live with us for a few months. I mean, do these people really think that Mothers do not know their children. Uggg, it infuriates me! Anyway, please just immediately dismiss this ignorant person and move forward in finding someone who can help your son. It may be hard, but you will find the right person for you and that will give you great peace.

The only thought that came to mind in reading your first post was that in many PANDAS cases the strep can be located in other areas of the body, not just the throat. Have you used antibiotics lately and seen any difference in behavior? Just something to keep in mind. I hope you find the help you are looking for soon. Your son and your family have been through enough. God bless.

Dedee

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#11 eamom

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Posted 29 October 2008 - 08:17 PM

I've gotta agree ....that a ped would think to use risperdal (esp. as a first resort) in a 3 year old is nuts! It boggles my mind that these docs are so stingey with antibioitcs (either a trial or prophylactically) but hand out anti-psychotic drugs such as risperdal like it's candy.

Read the new James Patterson book Against Medical Advice...it'll make you really think twice about a lot of these meds. It's entirely possible that the boy in the book, Cory (perhaps a chronically infected strep carrier) had PANDAS...but that was never mentioned...it's horrible to think that that family went through years of suffering when it could have been fixed (if it was indeed PANDAS) with antibiotics or IVIG!

#12 Pudgeo

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Posted 29 October 2008 - 11:57 PM

Kim, We all understand your frustration...some of the trad Dr treat us MOMS like we don't know anything and we should just be happy with a prescription for something and out the door! I guess that works for some people but not for us!!
Like I said, I wish I had $$ for everytime I said."this all started with a 3 day fever" I'd be rich(or offset my DAN visits haha) and did any Dr listen to that? NO.....here try seroquel,risperdal,ativan,zoloft.prozac..you get my drift.
Hang in there!!Sarah

#13 michele

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Posted 30 October 2008 - 08:18 AM

Hello. We have alot in common because my son started his first episode when he was very young at age one year. However, I have to tell you until he was five no Dr. would give him meds. Looking back an antibiotic may have prevented the strep from reoccuring however he was little so it made sense not to put him on strong meds with side effects. We waited and yes the behaviors grew worse. At five we did start antibiotics. And at six the neuro put him on Abilify. It was a mega low dose at 2 mg. but it did help with the ADHD and some with anxiety. You can't use traditional stimulants because of the tics. Now in the latest episode his anxiousness was back so we added 12 mg of zoloft. He is up to 5 mg of the Abilify also because as he grew and his body adjusted and it worked less well. My son has the hyptonia, too and dysgraphia. You have done an awesome job of helping your son at a young age. I never even found the tone issues until age 5. My guy has sensory issues too and gets stuck on ideas. We do OT also, is this the therapy you meant? Is your son under or over stimulated? My son does not like scary and is very cautious. Swinging is a relaxer to him. My son also walks on his toes during times of stress to his immune system. Have you noticed this? How did you figure so much out at such an early age. Do you see a DAN!? I think you are doing a great job of supplementing now too. Monolaurin is a good supplement to keep their immune system healthy in the winter. Calcium with vit D chews, also Flax oil called Omega swirl is great for the younger kids. It is like a smoothie. I give the Nordic Natral fish oils that are cherry flavored too. Also a good vitamin like Nordic Berries. You may want to watch his diet too. Try to eliminate high sugars and high fructose corn syrup and artificial dyes, possibly GF. A DAN! Dr. is very thorough. They can offer personalized supplements. A neurologist will not offer anything but meds or waiting till the next appointment,, although some here have had CAT scans or MRI's done. We see a neurologist and a immunologist and a psychiatrist may help too. We have seen a DAN! I know what you are going through. It is rough to not know where to turn. Have you considered early intervention through your school district? I wish we had done that. It would be nice to have a support. All the best. Keep us posted on what you decide.

Michele

I have a 3 yr old who I am very worried about. I have no idea if he has PANDAS or not but something strange is going on. Quick history is that my son has had mild dev delays (hypotonia, articulation disorder, sensory processing disorder that at times looks like budding ADHD). He has allergies, asthma and was recently dx with Eosinophilic Gastroenteriis via endoscopy. He does not "meet the criteria" for ASD but I work with kids on the spectrum and he is one of those "gray area kids." Dev ped doens't think he's ASD or ADHD yet. He has mild anxiety and is quite active on a normal basis. He's been receiving therapy since 15months old. However, where my concern comes in, is when he is ill (which is QUITE often in the fall/winter) he turns into a totally different kid. He becomes EXCESSIVELY hyper (to the point of being unsafe), tantrums inthe form of megameltdowns b/c he gets "stuck" on something very minor and loses all ability to reason or hear us (it's important to note that he rarely EVER tantrums normally), he'll throw himself around, crashing into walls, scream into hysteria etc. It is so distrubing ot see my child transformed. He will become get very rigid about things and how they need to be (as opposed to being flexible when NOT sick). He gets SEVERE anxiety of WEIRD things (bugs in his food, seeing monsters on the shower curtain, terrified of seeing a dark closet etc). he can even become aggressive. I can't stress enough that this is such a drastic change. This recent illness (6 days of low grade fever) has brought out the worst. I took him to the doc and asked about PANDAS. They swabbed him for strep and the rapid came back negative. he DID have strep at 18months old but never again to my knowledge. I did have his ASO and the other blood test done whe he was well once and they came back "within normal limits." So, my first question is: does this mean he's negative for PANDAS? what else should I be investigating? What causes a child to change drastically during illnesses? his ped just told me to put him on Risperdal. I think he missed my gigantic point that I wanted to find the underlying cause....not just control the behaviors....especially when we don't have these behaviors WHEN HE IS NOT SICK. I would be so grateful for any insight or advice. Can anyone suggest a doc on the east coast (we'll travel). He has had his tonsils/adenoids out, two sets of tubes in the ears, he's on fish oils, probiotic (heavy duty: VSL #3), carnitor, vit c, vit e, zinc, transfer factor, selenium etc. We are trying to keep his body healthy in the meantime. i think one of my main questions is: if he keeps coming up negative for strep with the throat culture and his one ASO and other blood test were within nomral limits, does this definitely rule out PANDAS? What type of doc is the best to weed through this? geneticist, neurologist, infectious disease, child psychiatrist? Thanks! Kim



#14 sam268

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Posted 30 October 2008 - 07:34 PM

I think I forgot to answer someone else's question about antibiotics. He HAS been on antibiotic before but I have not noticed a correlation b/t symptoms. He hasnt been on antibiotic recently. We are JUST starting to write everything down and it has made patterns apparent. Although this recent illness was so obvious, we didn't need to surmise a correlation.
Michele- Wow, we do have a lot in common! My son has been in EI since 2months old due to prematurity and osteomyelitis in his knee (due to staph infection given in NICU). We first had PT and OT. At 15months, I saw some signs of ASD and we hit it full throttle with DAN, EI (OT, SLP, SI, floortime etc). He has made tremendous progress. I am very proud of him. He works so hard. There are lingering sensory issues, hyperactivity (his therapists think it's completely sensory based and not ADHD, however, mainstream medicine doens't discriminate adn I think he may eventually be dx with ADHD). Many sensory strategies work with him. he's big on preparing him. As long as I tell him exactly what to expect, he will do anything (including painful medical procedures, like a trooper). He deals well with transition with timers (actually asks you to set teh timer). He has vestibular issues (hates swings, feet off the gound or anything that makes his head NOT perpendicular to the floor (tipping back, laying down...diaper changes were a nightmare). He was tactile defensive but major progress on that. Now we only see it with occasional things like when he wants to help bathe the dogs and can't bring himself to touch the foamy soap. He is sensitive to noise. He used to freak out if he heard a cat rattle a paper bag in teh NEXT room (we didn't even hear it). He can't seem to filter out stimuli (visually or auditorily). He sees everything, hears everyting, comments on it and the world seems to come at him at 100mph (and he then in turn runs 100mph). Deep pressure is very calming to him. He sleeps iwth SUPER LOUD white noise and a weighted blanket on him. We do A LOT of talking ot deal with the anxiety. He definitely has anxiety that comes out in a hyperactive, dysregulated behavior (impulsive, silliness, breaking rules, "checking out") in stead of your typical withdrawl response. So, for example, when he gets nervous around people, he starts running around aimlessly and disorganized...he'll even throw himself on or tackle a stranger instead of withdraw.
It's SO interesting about the toe walking. i will have to watch that and see if I notice a pattern.
We were at the peds office today. They finally saw us after 12days of low grade fever. Their epxlaination is that he just must have caught multiple viruses back to back. Right. I convinced them to do bloodwork. They would only run CBC and IgG subclasss (b/c fo history of being low) and they would NOT run the ASOT and ANitDNASs ones. HOWEVER, they decided to run an Epstein Barr test. They did not tell me this one while we wer ein the office, I noticed it on teh script once we were at teh bloodbank. They completely blew me off about the behavior symptoms. I HAD to drop it for today b/c I am 6mo. pregnant and the stress is getting to me. I need to take a breather for a few days before I gear up again. We have slowed down on the DAN front b/c of $$. We just can't afford ot keep up with it with #2 on the way and unpaid maternity leave coming up. We do have an appt with Dr. Trifiletti at the end of Nov. I'm hoping that he's going to listen.
I can't thank all of you parents enough. It's helpful to know that others have gone through this. It makes me sad to know that parnets have to go through this. Really it's the only support that helps me get through this (and my husband!!). It just tears me up when docs say things like the ped said to me today when I must have had a defeated look on my face when he said "It's just back to back colds." he said "I know. You don'tlike to hear 'it's just a cold.'" I retorted "No, I'd LOVE to hear 'it's just a cold'...if it REALLY was just a cold. I become defeated when I feel like I'm not being heard and that I feel there is more going on." At some point, someone is going to accuse me of Munchausen's. I know it's coming. Somehow, I dont' know how docs can think that though. he has so many different diagnoses.....I just keep pursuing b/c I want someone to see the big picture.
Again, many thanks for all the kind words. It takes a warrior to navigate the medical maze and find your way to someone who listens. Kim



Hello. We have alot in common because my son started his first episode when he was very young at age one year. However, I have to tell you until he was five no Dr. would give him meds. Looking back an antibiotic may have prevented the strep from reoccuring however he was little so it made sense not to put him on strong meds with side effects. We waited and yes the behaviors grew worse. At five we did start antibiotics. And at six the neuro put him on Abilify. It was a mega low dose at 2 mg. but it did help with the ADHD and some with anxiety. You can't use traditional stimulants because of the tics. Now in the latest episode his anxiousness was back so we added 12 mg of zoloft. He is up to 5 mg of the Abilify also because as he grew and his body adjusted and it worked less well. My son has the hyptonia, too and dysgraphia. You have done an awesome job of helping your son at a young age. I never even found the tone issues until age 5. My guy has sensory issues too and gets stuck on ideas. We do OT also, is this the therapy you meant? Is your son under or over stimulated? My son does not like scary and is very cautious. Swinging is a relaxer to him. My son also walks on his toes during times of stress to his immune system. Have you noticed this? How did you figure so much out at such an early age. Do you see a DAN!? I think you are doing a great job of supplementing now too. Monolaurin is a good supplement to keep their immune system healthy in the winter. Calcium with vit D chews, also Flax oil called Omega swirl is great for the younger kids. It is like a smoothie. I give the Nordic Natral fish oils that are cherry flavored too. Also a good vitamin like Nordic Berries. You may want to watch his diet too. Try to eliminate high sugars and high fructose corn syrup and artificial dyes, possibly GF. A DAN! Dr. is very thorough. They can offer personalized supplements. A neurologist will not offer anything but meds or waiting till the next appointment,, although some here have had CAT scans or MRI's done. We see a neurologist and a immunologist and a psychiatrist may help too. We have seen a DAN! I know what you are going through. It is rough to not know where to turn. Have you considered early intervention through your school district? I wish we had done that. It would be nice to have a support. All the best. Keep us posted on what you decide.

Michele

I have a 3 yr old who I am very worried about. I have no idea if he has PANDAS or not but something strange is going on. Quick history is that my son has had mild dev delays (hypotonia, articulation disorder, sensory processing disorder that at times looks like budding ADHD). He has allergies, asthma and was recently dx with Eosinophilic Gastroenteriis via endoscopy. He does not "meet the criteria" for ASD but I work with kids on the spectrum and he is one of those "gray area kids." Dev ped doens't think he's ASD or ADHD yet. He has mild anxiety and is quite active on a normal basis. He's been receiving therapy since 15months old. However, where my concern comes in, is when he is ill (which is QUITE often in the fall/winter) he turns into a totally different kid. He becomes EXCESSIVELY hyper (to the point of being unsafe), tantrums inthe form of megameltdowns b/c he gets "stuck" on something very minor and loses all ability to reason or hear us (it's important to note that he rarely EVER tantrums normally), he'll throw himself around, crashing into walls, scream into hysteria etc. It is so distrubing ot see my child transformed. He will become get very rigid about things and how they need to be (as opposed to being flexible when NOT sick). He gets SEVERE anxiety of WEIRD things (bugs in his food, seeing monsters on the shower curtain, terrified of seeing a dark closet etc). he can even become aggressive. I can't stress enough that this is such a drastic change. This recent illness (6 days of low grade fever) has brought out the worst. I took him to the doc and asked about PANDAS. They swabbed him for strep and the rapid came back negative. he DID have strep at 18months old but never again to my knowledge. I did have his ASO and the other blood test done whe he was well once and they came back "within normal limits." So, my first question is: does this mean he's negative for PANDAS? what else should I be investigating? What causes a child to change drastically during illnesses? his ped just told me to put him on Risperdal. I think he missed my gigantic point that I wanted to find the underlying cause....not just control the behaviors....especially when we don't have these behaviors WHEN HE IS NOT SICK. I would be so grateful for any insight or advice. Can anyone suggest a doc on the east coast (we'll travel). He has had his tonsils/adenoids out, two sets of tubes in the ears, he's on fish oils, probiotic (heavy duty: VSL #3), carnitor, vit c, vit e, zinc, transfer factor, selenium etc. We are trying to keep his body healthy in the meantime. i think one of my main questions is: if he keeps coming up negative for strep with the throat culture and his one ASO and other blood test were within nomral limits, does this definitely rule out PANDAS? What type of doc is the best to weed through this? geneticist, neurologist, infectious disease, child psychiatrist? Thanks! Kim



#15 Pudgeo

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Posted 30 October 2008 - 10:24 PM

Hi Kim, haha Munchausen syndrome!! That is sooo funny! It's just us parents who go BONKERS trying to tell these know it all DR that something is wrong with my kid! I know how expensive the DAN is too. (I think my sons LYME test is around $1000.. yikes) but I have to figure out what is wrong with my kid!

ANyway you made me think of something when you said the munchausen thing..when my son was in his 8th month of mis-diagnosis (the neuro told me it was seizures) and he was in the hospital for a week the neuro told me it was time for ME to start a med to control my anxiety and stress!! WOW did she step over the line! You bet I couldn't wait to show her his PANDAS panel and all the other tests which showed how messed up his immune system was!
Keep plugging along and hang in there! it sounds like you are doing everything you can!! Sarah




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