Very Confused/Repeat MRI?

[Joan Pandas Mom]

I found out this week that the Neuro at DHMC wants to repeat my son's MRI from Dec. I never saw the copy of the report, I got a copy at pedi visit this week. My son had a very small spot on his right frontal lobe in Dec/Jan. When we saw the Neuro in Jan he wasn't too concerned with the spot, but he also noted on the report that my son had no family history of similar medical concern. My son's uncle died of a brain tumor last fall. There is such a strong family history of other cancers too. My son's father had colon cancer, my son's grandfather died of colon cancer at 43 years old., his uncle (father's brother) died from a brain tumor (I mentioned above),one of his father's sisters has colon and rectal cancer and anther sister has Lynche Syndrome. Dana Farber is recommending my children have colonoscopies from age 18 on based on the family history. My niece has Ewings Sarcoma. My son always looks so pale to me, but has energy to workout 4 times a week. As I was watching him try to enter the house tonight, he would approach the door, back off in a jerky motion, bless himself and start over. He repeated this about 15 times before coming in the house. I know this sounds like typical OCD/PANDAS but he looks so out of it, so pale. As I was watching I was wonder if there could be more to this? Are any other PANDAS kids really pale? Have any had spots on their MRI's. I am starting to think we should take his braces off early and repeat the MRI. We are going on 6 weeks post IVIG Friday.

[JAG10]

Court has never had an MRI, so I can't help you out there. We are 1 week behind you w/IVIG and she has always been VERY pale. One of the first things i and others commented on post ivig was how much better her coloring is. However, as the weeks have gone by, the improved coloring comes and goes just like the dilated pupils that were gone immediately following ivig, now they too come and go.

 

Not only has she been very pale, she's had livido reticulitis which is a honeycomb or lace patterning of veins under the surface of the skin... that has totally disappeared post ivig.

[kimballot]

Joan - I am sorry to hear about this. It must be overwhelming. At first I was thinking "why wouldn't you jump at the opportunity to do another MRI", but then you mentioned the braces, so I can see that it is not a simple procedure.

 

So..the neurologist was not concerned about the spot back in January but also was not aware of the family history of cancers- but now the neurologist wants to repeat the scan (do I have this correct?).

 

Regarding your question of color and such - Yes - my son gets very pale with PANDAS and infections. This year he was extremely pale with dark circles under his eyes before we found out about his sinus infection... and yes.. we do get strange rituals with exacerbations. However, we've never had an MRI and that spot on the MRI cannot be ignored.

 

Does the neurologist have a time frame for repeating it? Is the neurologist recommending to do it ASAP, or is that your instinct?

[norcalmom]

alot of pandas kids seem to be low on iron - I read this in a previous thread. My son, is low on Ferritin , and although not quite anemic, doc did recommend supplement. this was before pandas diagnosis - when we were trying ot figure out what was wrong. I tried a couple - but he didn't like taste, so we jsut do cereal that has iron now, and I'm glad becasue according to the old posts Dr K ahs noted that many pandas kids are low - but doesn't think they ABSORB it - and maybe accumulating in organs (brain???). I can't remember exactly - you should do a search on iron on the forum.

 

Now ds has ceral with iron in it, and I do think it helps, and I try to make sure he has iron rich foods with vitamin C to aid with absorbsion. Has your ds had a CBC lately?

 

That's probably obvious, but sometimes we are so overwhelmed with all the complex stuff going on that over look the obvious stuff. I hope the spot is nothing, you and ds already have so much to deal with.

[peglem]

I found out this week that the Neuro at DHMC wants to repeat my son's MRI from Dec. I never saw the copy of the report, I got a copy at pedi visit this week. My son had a very small spot on his right frontal lobe in Dec/Jan. When we saw the Neuro in Jan he wasn't too concerned with the spot, but he also noted on the report that my son had no family history of similar medical concern. My son's uncle died of a brain tumor last fall. There is such a strong family history of other cancers too. My son's father had colon cancer, my son's grandfather died of colon cancer at 43 years old., his uncle (father's brother) died from a brain tumor (I mentioned above),one of his father's sisters has colon and rectal cancer and anther sister has Lynche Syndrome. Dana Farber is recommending my children have colonoscopies from age 18 on based on the family history. My niece has Ewings Sarcoma. My son always looks so pale to me, but has energy to workout 4 times a week. As I was watching him try to enter the house tonight, he would approach the door, back off in a jerky motion, bless himself and start over. He repeated this about 15 times before coming in the house. I know this sounds like typical OCD/PANDAS but he looks so out of it, so pale. As I was watching I was wonder if there could be more to this? Are any other PANDAS kids really pale? Have any had spots on their MRI's. I am starting to think we should take his braces off early and repeat the MRI. We are going on 6 weeks post IVIG Friday.

This sounds a little scary. Did you get a copy of the scan? You might want to have another neurosurgeon (I'm told neurosurgeons are better at "structure" dx than neurologist, who are better in the "function" area) look at the mri. Let him/her know your concerns w/ family history and see how they think you should proceed.

[Joan Pandas Mom]

Back in January he recommended repeating in 6 months or when the braces come off. I didn't know this until late last week when we were at the Pedi's office, pedi mentioned it and I got a copy of the report then. I sent him an e-mail last night with updated family history. I will let you know what he thinks.

[Joan Pandas Mom]

He was low on Ferritin too in March. We started supplements too then Dr. K. told us to try to get it through his food instead of supplements. I have a lab slip but am trying to hold off another 2 weeks to put us at 8 weeks post IVIG. I want to see where his titers are at.

 

alot of pandas kids seem to be low on iron - I read this in a previous thread. My son, is low on Ferritin , and although not quite anemic, doc did recommend supplement. this was before pandas diagnosis - when we were trying ot figure out what was wrong. I tried a couple - but he didn't like taste, so we jsut do cereal that has iron now, and I'm glad becasue according to the old posts Dr K ahs noted that many pandas kids are low - but doesn't think they ABSORB it - and maybe accumulating in organs (brain???). I can't remember exactly - you should do a search on iron on the forum.

 

Now ds has ceral with iron in it, and I do think it helps, and I try to make sure he has iron rich foods with vitamin C to aid with absorbsion. Has your ds had a CBC lately?

 

That's probably obvious, but sometimes we are so overwhelmed with all the complex stuff going on that over look the obvious stuff. I hope the spot is nothing, you and ds already have so much to deal with.

[Joan Pandas Mom]

That's a good idea. I'll start researching Neuro surgeons.

 

I found out this week that the Neuro at DHMC wants to repeat my son's MRI from Dec. I never saw the copy of the report, I got a copy at pedi visit this week. My son had a very small spot on his right frontal lobe in Dec/Jan. When we saw the Neuro in Jan he wasn't too concerned with the spot, but he also noted on the report that my son had no family history of similar medical concern. My son's uncle died of a brain tumor last fall. There is such a strong family history of other cancers too. My son's father had colon cancer, my son's grandfather died of colon cancer at 43 years old., his uncle (father's brother) died from a brain tumor (I mentioned above),one of his father's sisters has colon and rectal cancer and anther sister has Lynche Syndrome. Dana Farber is recommending my children have colonoscopies from age 18 on based on the family history. My niece has Ewings Sarcoma. My son always looks so pale to me, but has energy to workout 4 times a week. As I was watching him try to enter the house tonight, he would approach the door, back off in a jerky motion, bless himself and start over. He repeated this about 15 times before coming in the house. I know this sounds like typical OCD/PANDAS but he looks so out of it, so pale. As I was watching I was wonder if there could be more to this? Are any other PANDAS kids really pale? Have any had spots on their MRI's. I am starting to think we should take his braces off early and repeat the MRI. We are going on 6 weeks post IVIG Friday.

This sounds a little scary. Did you get a copy of the scan? You might want to have another neurosurgeon (I'm told neurosurgeons are better at "structure" dx than neurologist, who are better in the "function" area) look at the mri. Let him/her know your concerns w/ family history and see how they think you should proceed.

[JAG10]

He was low on Ferritin too in March. We started supplements too then Dr. K. told us to try to get it through his food instead of supplements. I have a lab slip but am trying to hold off another 2 weeks to put us at 8 weeks post IVIG. I want to see where his titers are at.

 

alot of pandas kids seem to be low on iron - I read this in a previous thread. My son, is low on Ferritin , and although not quite anemic, doc did recommend supplement. this was before pandas diagnosis - when we were trying ot figure out what was wrong. I tried a couple - but he didn't like taste, so we jsut do cereal that has iron now, and I'm glad becasue according to the old posts Dr K ahs noted that many pandas kids are low - but doesn't think they ABSORB it - and maybe accumulating in organs (brain???). I can't remember exactly - you should do a search on iron on the forum.

 

Now ds has ceral with iron in it, and I do think it helps, and I try to make sure he has iron rich foods with vitamin C to aid with absorbsion. Has your ds had a CBC lately?

 

That's probably obvious, but sometimes we are so overwhelmed with all the complex stuff going on that over look the obvious stuff. I hope the spot is nothing, you and ds already have so much to deal with.

 

 

My dd10 does not have low iron/ferritin. It is interesting the pale to healthy coloring is coming and going like the dilated pupils... the pupil dilation is related to brain inflammation, right?

 

That was a great suggestion about the neurosurgeon. My prayers are with you, Joan. I'm so sorry you have this to worry about too.

[sptcmom]

Joan

Ds 8.5 has had leg pains, severe limping, damp reflexes, muscle atrophy, leg muscle spasms etc for a whole year since March '09. The bloodwork showed steadily decreasing Ferritin (82 to 14 in 9 months), but hemoglobin is normal, mild elevated liver enzymes, very high ESR or sed rate which indicates inflammation was 60+ but C-reactive protein was normal (go figure), muscle enzyme aldolase elevated but CK was normal (go figure again)- so all contradicting results. NONE of the specialists (ortho, neuro, hematologist, rheumi, cardio, GI, and pedi) EVER thought about about doing strep titers. My son was relapsing every for to 6 weeks. We had the MRI of brain and spinal cord done but stopped at the lumbar level- all normal BUT the SINUSES were hugely infected and blocked. NO ONE noticed that. Then 6 months later we did MRI of pelvis and thigh and it showed abnormal bone marrow signals from all the growth plate areas there (epiphysis of both femurs, iliac crest etc). The radiologists (we took 3 opinions) ruled it to be some sort of non specific lesions in the bone marrow possible bone marrow edema/fluid and they ruled them as STRESS reaction in the bone. They showed up as spots all over the MRI without contrast. We followed up with whole body bone scan with contrast and there was NO inflammation in the body anywhere except the SINUSES lit up yet again. NO one paid any attention since they were looking for the bogey man here I guess So I was told they give up if I wasn't willing to do more invasive tests which I refused.

The Hematologist put him on Iron supplements and within TWO days the muscle aches and pains were gone. Then another relapse of limping in Feb 2010 and finally a he blew up with full blown classic PANDAS all symptoms in late March this year. The hematologist diagnosed him within hours and we started ABX high dose.

Anyhoo Dr K says its possible bone marrow hyperplasia and an autoimmune stress reaction in the bone marrow.

Could yours be a stress reaction too from the strep, antineuronal antibodies, inflammation? Have you done an MRI with the Gadolinum contrast? Why do you fear tumor other than family history? Did the radiologist put that in his report as a possible differential diagnosis? Was it read by a pediatric radiologist? Then there is such a person as Pediatric oncology radiologist- we had ours read by the peds radiologist at the Cancer Inst of NJ where the hematologist also is. They have a MUCH higher understanding of the malignancy process with or without contrast any stage of disease. Neuro surgeon is good idea but neurologists usually rely on radiologist opinion too much. What about EEG? that should pick up abnormal signals if there's any overgrowth in that area of the Brain.

Also the large frontal cortex in humans has a lot to do with executive function, decision making, cogntive skills, motor planning, motor control, sensory processing, and behavioral processing and control as well- it seems logical with Pandas issues they maybe stressed. You need to see the report and read what the radiologist classified it as - was it in grey matter or the white matter of the brain? is it due to overgrowth or stress undergrowth? I mean a spot can be anything and is a very nonspecific finding esp if the MRI was done without contrast.

Edited July 1, 2010 by sptcmom

[familyof4]

My son also has a spot on his MRI - the neurologist didn't want to do an MRI because he knew it would come back abnormal. Once you see a spot on an MRI you are suposed to repeat the test after a year to make sure nothing has changed - that is routine. My son's white matter was in the periventrical region of the left frontal horn. Talking with the neurologist he said these spots are common and consistant with a patient that has an autoimmune disorder. Since my son has Celiacs as well as now PANDAS I wouldn't be suprised to maybe find more now if we repeat the MRI which we haven't. He was also a preemie which can result in white matter although not in the location my son has his.

[T_Mom]

Dear Joan, I will be anxious to hear what happens next -- We had an MRI but only sinus congestion showed up -- though I did ask for a second radiologist to read it, and have since taken it with us to show a neurologist for additional readings. Would that be helpful to get a second opinion? All the best to you--please keep us posted.