Back from Children's Memorial...test results.

[qannie47]

MRI: Normal at first glance reading

EEG: Normal at first glance reading

Blood work: inflammation: normal, Thyroid: normal, everything else: normal. They will send me a copy of all test in it's entirety.

Spinal fluid: no initial inflammation detected. 4-6 weeks for results

 

Diagnosis: This is not Pandas because there is no way to conclusively test for Pandas. This is not encephalitis because his EEG was normal and so were blood results. This is not an auto-immune disorder because the above results would have showed something. Dr. feels that he does not fit the criteria even if it existed because his tics are not repetitive. I guess repetitive sommer saults for 2 hours straight, climbing up the same 3 stairs for hours at a time, nail biting too the point that he was ripping off strips of skin from the pads of his fingers, facial grimacing, bird calls over and over are not impressive.

 

This is most likely symptoms of my ds's mild Hypo-sensory issues. And they have probably been there all along, but I MUST have missed it. Hypo-sensory kids are red flags for going on to psychiatric problems. SOLUTION: Put him on a sensory diet and see a psychiatrist.

 

Past 100% remissions with abx and IVIG is a coincidence.

Any positive improvement with a steroid burst is only because "steroids can produce a feeling of inner harmony and that is why people become addicted to them". If a burst works, it is no indication of an auto-immune problem.

DR. K "see's what he wants to see"

 

My issues with their diagnosis: My child was sudden onset with issues and there has been repeated evidence that abx and IVIG works back to 100% for sustained long periods of time. My ds's sensory issues were never huge and never got in the way of his life, plus, his Pandas symptoms are not similar at all to what we experienced with his sensory issues. I now have had 3 consults with Psychiatrists, now including theirs, and yet none of them can come up with a psychiatric diagnosis that fits. I have read on steroids, and have found no evidence that they work to help mood swings. On the contrary, they seem to cause them. So I guess if DR. K is seeing ONLY what he wants to see, could that not be the same for this doctor?

 

In the end, I was not impressed. I felt like everybody was looking at me like I had a third eye. I felt like everybody was looking at my son like he had a behavior problem. I felt like they had diagnosed him before he even got there.

 

UGH

[Mayzoo]

Sorry, been there done that and it is infuriating. Vent, scream, get angry, go for a long walk, punch a pillow.....then after you do whatever you helps you, get back to what you have to do to help your son and your family.

[peglem]

 

This is not Pandas because there is no way to conclusively test for Pandas.

They need a course in logic. If you can't test conclusively for it, you also can't rule it out.

[nicklemama]

So sorry for your experience. Unfortunately, it's all too typical.

[911RN]

MRI: Normal at first glance reading

EEG: Normal at first glance reading

Blood work: inflammation: normal, Thyroid: normal, everything else: normal. They will send me a copy of all test in it's entirety.

Spinal fluid: no initial inflammation detected. 4-6 weeks for results

 

Diagnosis: This is not Pandas because there is no way to conclusively test for Pandas. This is not encephalitis because his EEG was normal and so were blood results. This is not an auto-immune disorder because the above results would have showed something. Dr. feels that he does not fit the criteria even if it existed because his tics are not repetitive. I guess repetitive sommer saults for 2 hours straight, climbing up the same 3 stairs for hours at a time, nail biting too the point that he was ripping off strips of skin from the pads of his fingers, facial grimacing, bird calls over and over are not impressive.

 

This is most likely symptoms of my ds's mild Hypo-sensory issues. And they have probably been there all along, but I MUST have missed it. Hypo-sensory kids are red flags for going on to psychiatric problems. SOLUTION: Put him on a sensory diet and see a psychiatrist.

 

Past 100% remissions with abx and IVIG is a coincidence.

Any positive improvement with a steroid burst is only because "steroids can produce a feeling of inner harmony and that is why people become addicted to them". If a burst works, it is no indication of an auto-immune problem.

DR. K "see's what he wants to see"

 

My issues with their diagnosis: My child was sudden onset with issues and there has been repeated evidence that abx and IVIG works back to 100% for sustained long periods of time. My ds's sensory issues were never huge and never got in the way of his life, plus, his Pandas symptoms are not similar at all to what we experienced with his sensory issues. I now have had 3 consults with Psychiatrists, now including theirs, and yet none of them can come up with a psychiatric diagnosis that fits. I have read on steroids, and have found no evidence that they work to help mood swings. On the contrary, they seem to cause them. So I guess if DR. K is seeing ONLY what he wants to see, could that not be the same for this doctor?

 

In the end, I was not impressed. I felt like everybody was looking at me like I had a third eye. I felt like everybody was looking at my son like he had a behavior problem. I felt like they had diagnosed him before he even got there.

 

UGH

So, after all this....was there any suggestion on how to HELP your child?? If this is the 3rd Psych with no diagnosis...do they have any suggestions or meds to suggest that will improve all these symptoms. Diet is great but doesn't sound like it should be the only answer or end all, be all for symptoms. Has he been on any psych meds? This is thoroughly frustrating for you...I know!!

 

I have been there, done that for 9 years. My kid NEVER fit in any definable box. Every doc that has ever seen him has said the same thing weather it was Peds, Neuro, Psych or NeuroPsych. Every teacher that has ever had him has told me they have never met another child like him. I got to where I told docs--I don't want you to diagnose him-- I already have.He has Purple Polka Dotted Flying Elephant Disease. (PPDFED). It's one of a kind, nobody has ever seen it and nobody knows how to treat it.

 

I told them this diagnosis was just as right as anything they could give me or as right as all the conflicting diagnosis I had rec'd over the years from multiple specialists. I want you to suggest how we can "TREAT" him to make some of this better. I got to where treating just a symptom was OK- let's not try to call it a disease or condition to treat. Lets work on depression or let's look at the OCD behavior or the anxiety and just try to tackle one symptoms at a time. Docs got my point and started working with me and not against me... for a better boy. Not perfect, but better and manageable.

 

Not saying you have to do this but this is the tactic I arrived at and it worked better for us. Lamictal helped my son with anxiety. He, too, once ripped all the skin from his toes and soles. Chewed all the skin off his hands. Prozac worked then switched to Zoloft (helped with depression and OCD behavior). We have never needed more prescription medication than that.

 

Not sure if this is helpful...feel your pain.

[T_Mom]

If you can get to Dr L -- or back to Dr K, someone that knows how to make a diagnosis and then treat appropriately that is the only way you are going to get any help.

I wish you the best of luck, we have all been there, having gone to doctors who said, "no one is 100%"...as my d continued to tic...

...you must go to someone that is knowledgeable of the most recent and up to date research.

[qannie47]

I am just so depressed. I like the idea of treating one symptom at a time. We have decided to follow the course with DR. K. Truly, while he may not have been a great fit for all, he seems to at least understand this. My ds will finish 5 more days of abx, and then if not 100% improvement, he will do a steroid burst. Not sure what the expect at this point, but it's all we got... But I can't give up...I am just so concerned about his school, I think his school also feels that they have never seen the pattern of symptoms before either. They are probably the best thing we have going for us right now. That being said, how long can they keep up with a child who needs to be managed all day long by either the school psychologist, a teachers assistant, or spend half the morning with the principal whom takes him for walks, or to the playground. Eventually something will give on their end as well. His twin, who is ODD, has unraveled with this 3 1/2 week long episode...everything I have accomplished with him is falling apart before my vary eyes...that alone is a heartbreak. We have decided to separate them as much as we can, one with dad, one with mom...the effect of what pandas is bringing to the household is just too much for his twin, age 7 to bear....This was a big hit for me emotionally. To see the disdain, the lack of compassion for my child. I am strong, I will recover and continue to fight for both my children...But this was a hit.

[pr40]

qannie47 -- I mean to help when I ask this, what did you expect? I am sorry you are going through this and want to suggest a few things just in case you have not done them.

First, if this is an auto-immune problem, there does not have to be a current infection. Auto-immune conditions only start with infection which sets a chain reaction in motion. then, all organism starts destroying itself. You may want to find a way to interrupt that reaction. IVIG was one way. But it is not the only way. You may want to continue with PANDAS drs like dr K and dr L. AND one good thing about auto-immune conditions is that YOU actually can do something about them and could potentially improve.

So, did you go through all the basic hoops like diet change, 23andme, exercise (to the extent that it is possible), some form of CBT?

Are you giving too many supplements or not adequate supplements? Is there mold/other triggers like alergies?

I wish you all the best.

[qannie47]

Thanks for your suggestions everyone. I think the people in the forum should all receive honorary doctorate's. I am so grateful that this site exists.

[MomWithOCDSon]

Qannie --

 

So sorry to hear what you and your son had to go through. Unfortunately, this was what I was afraid of with this particular institution. They tend to engage in sort of a "bait and switch" methodology whereby they lead you to believe they are PANDAS/PANS friendly/knowledgeable, only so they can get you in the door, dismiss that as a viable diagnosis, and point you toward the psych ward. They ought to be ashamed of themselves, but clearly they're not, since they engage in this over and over and over again.

 

You know your son best of all, and you know what you know about what is and what is not "normal" for him. At least now, thanks to Children's testing, you know you don't have any other notable neurological issues or bizarre blood-reflected concerns.

 

So now you can move forward. I, too, like 911RN's methodology and have found it to be beneficial in our experience with PPDED. There's something liberating in finally finding out, more or less definitively, that the prominent traditional medical institution in your area is full of bunk when it comes to something as complex and varied as PANDAS/PANS.

[qannie47]

My ds's doctor from children's called today to see what our end result was...Thank God For HIM. He disagreed with what they said, pretty much in it's entirety...He also said he still agrees that we are dealing with Pandas and he thinks that we should stay on course with treatment with Dr. K...He said that if he were in my shoes, that is what he would do...it is so nice to see a doctor who is humble enough to admit that he does not know everything and is willing to think out of the box.....when I shared the diagnosis, and quoted what the doctor said, he used terms like "that is utterly untrue", and , "I don't think you missed anything, as a mother you have been on top of everything, so I don't agree with that".

[JAG10]

Folks really need to stay away from hospitals if at all possible. They won't help you. If your child ends up in the hospital for a non-pans reason, use your judgment to keep from sharing as much pans related info as possible.

 

I read on one of the FB pages that Lovely CHOP is coming out as the first hospital in the country formally against all vitamins and supplements because they are not FDA regulated. Thanks for nothing, once again CHOP!

 

We pulled up next to a van last week with a CHOP sticker on the side of it with the motto "Give the gift of childhood". I was driving, staring out my side window with a feeling of disgust inside, but i said nothing. Then I hear my younger girl behind me say "I hate CHOP." How dare they be so committed to everyone else's children but ours!!!!!!! How dare they!?!?

 

I am so grateful and thankful to the Lord for my girls' health! We tried it "their" way, conventional medicine, dutifully trying one drug after another. IT DOESN'T WORK! If it did, we wouldn't be here. I thank God for the tenacity to keep pursuing effective treatment solutions and the handful of docs who are bold, brilliant and helpful.

[JAG10]

http://www.newswise.com/articles/children-s-hospital-of-philadelphia-becomes-first-in-nation-to-disallow-use-of-dietary-supplements

 

 

Here's the link about their stand on supplements. Jerks.

[MomWithOCDSon]

Not to hijack the thread, but anyone know what "inspired" CHOP's oh-so-vocal stance against supplements? Was there an incident . . . or more than one . . . that can be related? I mean, really, when was the last time anyone heard of a verified supplement toxicity incident? I realize that many of us have had our kids respond less-well to certain supplements, but, to my knowledge anyway, none of us has managed to actually poison anyone!!

 

This just sounds so unnecessary and fanatical!

[nicklemama]

Yes, thank you CHOP. Every supplement and vitamin my son takes has been at the recommendation of his MD doctor, who over sees them and changes them up from time to time.

 

I agree, this is one more lesson on why we must stay away from hospitals unless absolutely necessary. And they think we're the crazy ones!