Developmental Pediatrician doesn't believe in PANDAS!

[Tattoomom]

Tatoo Mom,

 

I can find no medical references to "Fragile Child Syndrome." This does not appear to be a real diagnosis--maybe just a description this doctor likes to give to certain types of patients? It seems very odd that he would give this type of description and then say gentle parenting won't work. Hard to imagine harsh parenting would be the right approach for a fragile child!

 

You are a veteran homeschooler--how could your child possibly do better in a crowded classroom than home with you?

 

Yes--just chalk this up as another pointless doctor visit, apart from the good news on autism.

 

Ko's Mom

 

(PS I am pretty sure my DS, if tested at that age, would have shown a similar gap between language and spatial reasoning and he is not autistic. For language delay, you might think about looking into the Earobics or Hearbuilder computer programs. Also, even if you are homeschooling, you might be able to get SLP services from the state--in some states these services are available for pre-school kids. This would be very worthwhile pursuing; it can be difficult to get insurance coverage for language therapy.)

 

Scary thing is, Every single person I have talked to who has taken their child to this doctor has had a bad experience. Rumor has it that he basically does not diagnose autism because of insurance coding/payment issues. So, he will tell you your child doesn't have autism, even if they do, because diagnosing something else (like global developmental delays) will get better payment from the insurance company/Medicaid. He believes that most "autism" symptoms are created by bad parenting. Nice huh?

 

Correct- Fragile Child Syndrome because she has had a rough road medically. She was diagnosed with Autoimmune Neutropenia at 7 months old and has had a bone marrow biopsy, been put under GA, hospitalizations, countless ER visits, hundreds of blood draws and shots at home for years to boost her white blood cell count. And she just turned 4. She was my "bubble baby" because she had no immune system and we really hovered over her (helicopter parenting!)

 

She has been in speech therapy at our local children's hospital for about 6 months now. If our insurance changes, I will pursue Child Find with the school system.

 

Thanks for the computer program recommendations! When did your DS start to "fill the gap?"

Edited October 5, 2012 by Tattoomom

[kos_mom]

Tatoo Mom,

 

It's been a long time, but when DS was tested in kindergarten, he scored 3% on the Peabody Picture Test. This is truly abysmal but when I called to get school provided language therapy, the woman who answered said, "I've seen worse," and pretty much said he wasn't bad enough to get services. We pursued private language therapy (insurance erred in covering it for a couple of years.) He got a new SLP when he started second grade. After she tested him, she said on the basis of his scores any SLP given just that information would conclude there was no way he could read. But he could, and the SLP said I should be down on my knees every night thanking God for Sister Teresa, his first grade teacher, for that.

 

The real leap came at the end of third grade when he did a then very new compuer program called Fast Forward. He did it at the SLP's every day for six weeks with a group of other kids. Despite the Pandas (we had to pay for several headphones as he kept chewing through the wires) his scores soared. He continued language therapy and did Fast Forward 2 the following year. The progress was not as impressive--his Pandas was quite strong at the time and, very bad for language therapy, one of his worst symptoms was a strong aversion to scores and scores of words. But it did get him to a very acceptable level.

 

Language therapy really worked for him, and Fast Forward was a smashing success. Erobics/Hearbuilder are less intense and much less expensive versions of Fast Forward.

 

Ko's Mom

[peglem]

So, this wouldn't, by any chance be Dr. Bettleheim, would it? Oh, wait, no, he did give autism diagnosis...

[norcalmom]

couple thoughts-

- I found a long time ago I don' have the personal energy to convert docs to my way of thinking. Find a new doctor. Its not worth your time. We need a top down approach for most docs.

-If you insist on trying to convert you doctor - move the argument to an immune argument, not strep. The pandas controvery exists because of the S in pandas - because it is almost impossible to link the disorder to strep - and all the papers involving strep are being disputed hotly. The informaiton on reserach studies on mice, and the brain, and antineuronal anitbodies is stronger. Let Swedo try to prove the link to strep. This is not done in other auttoimmune diseases - they just say - "here is the condition, here are markers (test) that assist with dx of the condition, here are several things that probaly contribute to it statistically, (viruses, eposes, genes, toxins, other immune conditions) and here is some treatment found helpful for it. They don't care about what causes (well the do at the very basic research level, but only inthat it may help them with treatment, most admit they cannot stop the trigger - like a virus - from occurring, so they focus on what it does to the cell and how to block or enhance function that has gone wrong). And we are WAY behind these other conditions - we should floow their example and focus on what works as treatments. Esspecially since its probable more than one thing. For expample I read interesting statistic on MS (or was it Lupus?) that 99.9 perconet of a sample group tested had had EBV (I think that was the virus) ...but that only 70% of normal people had had EBV (its VERY common, just like strep)- now can you prove that EBV caused the condition - no - but somehow it is statistically linked to the condition. AND there are other factors statistically linked to the condition as well. I think we will find our kids are the same. Sorry for my rant...

[911RN]

We had our daughter evaluated by a Dev Ped in late August, right before she turned 4 years old. We were concerned about her language delay and behaviors. She's been in speech therapy for about 6 months and even her SLP noticed a huge improvement with speech when she went on an antibiotic. Anyway, the Dev Ped tells me at the parent conference last night that PANDAS is not proven and he doesn't buy into it. No matter what I said about her improvement, he denied it had anything to do with antibiotics. She's at about a 2 1/2 year old level but turned 4 in September so any progress made he thinks is due to her moving out of the "terrible two's." Then came the immunization lecture! He could not believe I was ok with giving her antibiotics for PANDAS- something that doesn't exist- and not immunizing her. He said she had a way bigger chance of an abx reaction than she does a vax reaction. THEN he told me that he didn't think I was qualified to homeschool her with her delays. I could have cried. I am a mother of 4 and we've always homeschooled. I cannot imagine sending any of my children to school, especially HER! Clearly her immune system is not functioning properly and she's so anxious we resulted to putting her on Zoloft and Tenex. Not to mention her behavior problems. All I could think was who better to school her and be will her all day than her mother.

 

Isn't there some kind of proof PANDAS is real?

 

Also....

 

Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

 

 

Has your child had an EEG? The reason I ask is that it is most unusual to have a child with "receptive language" delay higher than expressive. Of course, I found this out the "hard way" but the end result when this occurred with my child was he was ultimately diagnosed with Landau Kleffner Syndrome (LKS). My son is likely dually diagnosed with PANDAS. He also has Central Auditory Processing Disorder. He has mild anxiety, some quirky OCD tendences and mild tic disorder. He is much improved but it has been a long 8 year long battle with us. LKS is very rare and trying to get able providers to diagnose or deal with this diagnosis is difficult. No different than PANDAs. Anyway, one of the things with LKS is that children lose the verbal realm but do not lose the visual realm.

 

My son when he was tested at age 8 was significantly behind receptive and expressive verbally, reading etc , however, his visual IQ was tested to be that of an 18 year old. IF she has had IQ testing- any testing that is "all over" with great highs and lows in area or doesn't make sense should be evaluated more closely. I would suggest by NeuroPsych to go over results, not just Dev Peds.

 

I would also suggest a Neurolgy appt if she has not already been and ask for an overnight EEG. My son was ADOS negative thus did not meet criteria for Autism yet alot of his scoring looked like an Autism like profile.

 

Don't let some egotistical doc worry you on what you should or should not be doing as a mother. He is not raising your child nor walking in your shoes daily. You can home school your daughter and still get her the help and resources that she needs for developmental delay, if that all it really is. We have 8 years of multiple specialists and only 2 have ever had any ideas and modalities that were helpful in anyway over what I was already doing, had researched or was working on to help my son get better. No doc is going to care as much as you do to do the right thing and not give up.

[tpotter]

What the h*** is Fragile Child Syndrome? I have been working with Autistic children for the past 18+ years, and never heard of that one. There's something called Fragile X Syndrome, which is a genetic disorder that causes Autistic-like symptoms, but it is diagnosed by genetic testing (blood testing.) From your description, it sounds like it's not Fragile X, or the DEv. Ped. would have mentioned it as the primary, and none of the rest of the dx would probably exist.

 

I even just googled Fragile Child Syndrome, and there was 1 mention by a person who also said she couldn't find any existence of it.

 

I know you have financial issues, BUT, this guy sounds like more than a jerk...he is an ignorant jerk. I've dealt with an such an ignorant jerk professionally, and found out he's actually starting to come around, but I wouldn't count on it happening.

 

Ignorne him when he tells you that you aren't qualified to homeschool. Does he have training as a teacher? I didn't think so. So, he certainly can't make that determination...tell him to stick with doctoring, and to get off his high horse anyway, and come up with REAL diagnoses.

 

Unfortunately, you really need to treat the PANS before it gets worse (and I am saying PANS, not PANDAS, because if there's no strep involved, it is PANS.) I really think you should also have him tested for Lyme (you can always start with the test available through Quest...if it's positive, you know he has it; if it's not positive...well, you really probably should test further.)

 

Do you have a regular pediatrician who is a little more open-minded, and actually believes in reading the evidence?

 

Good luck.

[kos_mom]

Tpotter,

 

Very interesting about Landau Kleffner. I think this should have been suspected in my DS many years ago, but perhaps awareness back then was very low. DS slaways scored much higher on expressive language than on receptive language, which was close to rock bottom before a lot of intensive language therapy. How bad? Let me just say my husband and I could discuss possible Christmas presents for the kids with him in the room when he was 6 or 7 without worrying about giving anything away to him.

 

Typically, in just about anyone, our receptive vocabulary is much larger than our expressive vocabulary. The tests of course adjuust for this. When receptive language scores are much lower than expressive it means that the child is able to express most everything he can receive, an unusual state. His dx was central auditory procesing, given by language therapists. We never discussed this with any doctor, but just treated it with language therapy. As I posted earlier, Fast Forward allowed him to make great leaps in auditory processing and receptive language.

 

I agree that Tatoo Mom should at least rule out LKS with an overnight EEG. If I had known about this way back, I would have pressed for this with my DS now that you have enlightened me.

 

Ko's Mom

[Tattoomom]

Fragile Child Syndrome-- It basically just means she has had a rough road medically and we spoiled her because of it. Now she expects the world to cater to her

 

While all of this started with a horrible sinus infection, strep has been involved, so I assume it's PANDAS. Our Ped. is helping us. DD had a ton of blood work done back in May and been on and off abx ever since. We just recently switched from Zith to Augmentin, today's day 10.

 

 

What the h*** is Fragile Child Syndrome? I have been working with Autistic children for the past 18+ years, and never heard of that one. There's something called Fragile X Syndrome, which is a genetic disorder that causes Autistic-like symptoms, but it is diagnosed by genetic testing (blood testing.) From your description, it sounds like it's not Fragile X, or the DEv. Ped. would have mentioned it as the primary, and none of the rest of the dx would probably exist.

 

I even just googled Fragile Child Syndrome, and there was 1 mention by a person who also said she couldn't find any existence of it.

 

I know you have financial issues, BUT, this guy sounds like more than a jerk...he is an ignorant jerk. I've dealt with an such an ignorant jerk professionally, and found out he's actually starting to come around, but I wouldn't count on it happening.

 

Ignorne him when he tells you that you aren't qualified to homeschool. Does he have training as a teacher? I didn't think so. So, he certainly can't make that determination...tell him to stick with doctoring, and to get off his high horse anyway, and come up with REAL diagnoses.

 

Unfortunately, you really need to treat the PANS before it gets worse (and I am saying PANS, not PANDAS, because if there's no strep involved, it is PANS.) I really think you should also have him tested for Lyme (you can always start with the test available through Quest...if it's positive, you know he has it; if it's not positive...well, you really probably should test further.)

 

Do you have a regular pediatrician who is a little more open-minded, and actually believes in reading the evidence?

 

Good luck.

[Tattoomom]

Thanks for sharing all of that info! I looked up LANDAU-KLEFFNER SYNDROME, but that doesn't sound like her... I'll definitely ask the Ped though.

 

 

We had our daughter evaluated by a Dev Ped in late August, right before she turned 4 years old. We were concerned about her language delay and behaviors. She's been in speech therapy for about 6 months and even her SLP noticed a huge improvement with speech when she went on an antibiotic. Anyway, the Dev Ped tells me at the parent conference last night that PANDAS is not proven and he doesn't buy into it. No matter what I said about her improvement, he denied it had anything to do with antibiotics. She's at about a 2 1/2 year old level but turned 4 in September so any progress made he thinks is due to her moving out of the "terrible two's." Then came the immunization lecture! He could not believe I was ok with giving her antibiotics for PANDAS- something that doesn't exist- and not immunizing her. He said she had a way bigger chance of an abx reaction than she does a vax reaction. THEN he told me that he didn't think I was qualified to homeschool her with her delays. I could have cried. I am a mother of 4 and we've always homeschooled. I cannot imagine sending any of my children to school, especially HER! Clearly her immune system is not functioning properly and she's so anxious we resulted to putting her on Zoloft and Tenex. Not to mention her behavior problems. All I could think was who better to school her and be will her all day than her mother.

 

Isn't there some kind of proof PANDAS is real?

 

Also....

 

Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

 

 

Has your child had an EEG? The reason I ask is that it is most unusual to have a child with "receptive language" delay higher than expressive. Of course, I found this out the "hard way" but the end result when this occurred with my child was he was ultimately diagnosed with Landau Kleffner Syndrome (LKS). My son is likely dually diagnosed with PANDAS. He also has Central Auditory Processing Disorder. He has mild anxiety, some quirky OCD tendences and mild tic disorder. He is much improved but it has been a long 8 year long battle with us. LKS is very rare and trying to get able providers to diagnose or deal with this diagnosis is difficult. No different than PANDAs. Anyway, one of the things with LKS is that children lose the verbal realm but do not lose the visual realm.

 

My son when he was tested at age 8 was significantly behind receptive and expressive verbally, reading etc , however, his visual IQ was tested to be that of an 18 year old. IF she has had IQ testing- any testing that is "all over" with great highs and lows in area or doesn't make sense should be evaluated more closely. I would suggest by NeuroPsych to go over results, not just Dev Peds.

 

I would also suggest a Neurolgy appt if she has not already been and ask for an overnight EEG. My son was ADOS negative thus did not meet criteria for Autism yet alot of his scoring looked like an Autism like profile.

 

Don't let some egotistical doc worry you on what you should or should not be doing as a mother. He is not raising your child nor walking in your shoes daily. You can home school your daughter and still get her the help and resources that she needs for developmental delay, if that all it really is. We have 8 years of multiple specialists and only 2 have ever had any ideas and modalities that were helpful in anyway over what I was already doing, had researched or was working on to help my son get better. No doc is going to care as much as you do to do the right thing and not give up.