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Zoning Out


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#1 Margaret

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Posted 09 December 2006 - 03:41 PM

Heidi and Michael.....thank you for responding. Do you have any info on 'zoning out'? My son is high functioning but will get 'that' look in his eyes like he isn't even hearing me or understanding what I am saying. They say in school his grades have fallen this Fall because he doesn't remember the stuff he learned in the past years. Regression is common in autism but this is a different look. Would that be a 'sign' for the rheumatologist? Another 'sign' is the fact that he has started to walk sooooooooooooooo slow!!! I mean, he has always been slow, but this is ridiculus!!! Evolution goes faster!!! He has an endoscopy scheduled for Tues. and a CT scan for Friday.....both ordered by the gastro doctor. He wants his chest scanned for 'fibrosis'. Another thing that is in the back of my mind is the fact the DS adults have such a higher incidence of Alzheimer because they are both are the 21 chromosome. This is all new to me.......please bare with me and my silly questions.
Margaret

#2 Heidi

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Posted 09 December 2006 - 04:23 PM

Hi Margaret,

I haven't heard anyone else talk about "zoning" out although a lot of us have experienced what we refer to as "brain fog".....and maybe that looks like zoining out in your son. I looked around our Sclero A to Z website to see what I might find for you and here is a link that talks about cognitive impairment in scleroderma.

His slowing down in his walking could be in response to sore or swollen joints. I would guess that both of these changes would be worth noting to his doctor and see what they think.

Please do let us know what you learn from the endoscopy and chest CT scan.

Warm wishes,
Heidi

#3 Shelley Ensz

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Posted 09 December 2006 - 05:09 PM

Hi Margaret,

By DS, do you mean Downs Syndrome, or Diffuse Scleroderma? It is Downs Syndrome that is associated with a higher incidence of Alzheimer's, and is on chromosome 21. Downs is also a systemic illness, but very different than systemic scleroderma, of course.

Zoning out would not be a symptom of any sort of scleroderma. But it would definitely be something to let his doctor know about, since seizures can be a symptom of Downs.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Margaret

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Posted 10 December 2006 - 03:26 AM

Hi Shelly.....DS is for down syndrome. My son is dual diagnosed....born with DS and at age 5 diagnosed with autism. They have found that Alzheimer is on the 21 chromosome and since DS kids have 3 of the 21 chromosomes, it explains why they have such a higher incident of it earlier in life than the normal population.
Heidi....thanks for the link about cognitive impairment. I am learning soooooooo much form this site.
Margaret

#5 janey

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Posted 10 December 2006 - 05:39 AM

Margaret,
Heidi made a good connection on brain fog vs. zoning out. Whenever I get the brain fog, I probably act like I've zoned out for a few minutes. At least that's what hubby tells me. I use to be a very fast walker, then it slowed down to a stroll and now I mosey (as Shelley calls it :) ) My pace has been attributed to several different things through the years. As first it was due to my polymyositis which I have in addition to dSSc. It weakened my muscles so that my legs were really weak. Now that's under control but with a mild PH and fibrosis I get short of breath so I'm pretty much moseying all the time now. I'm glad your son is getting his lungs checked. Please let us know the results.
Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 Shelley Ensz

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Posted 10 December 2006 - 08:25 AM

Hi Margaret,

Please keep in mind that I am not a doctor and have no medical training at all. But to the best of my knowledge, the symptoms you are describing such as blank stare "zoning out" and incredibly slow walking would most likely not be related to scleroderma. I would be quite concerned that the zoning out could possibly be due to petit mal seizures, as seizures are a common complication of Downs Syndrome, or even to mini-strokes.

I would urge you to contact his doctor right away to report the development of these new symptoms, as they are quite unlikely to be related to scleroderma, and certainly they would not be part of a constellation of symptoms that would lead to a scleroderma diagnosis.

People may slow down a bit with swollen joints, as Heidi mentioned, but it would be highly unusual to slow them down to the extent that you seem to describe. People may be a little spacey with brain fog, as Janey mentioned, but I rather sense you are describing a different level of severity rather than the usual sluggishness that can be brought on by fatigue. If both of these symptoms onset at the same time, it would make it even more important to consult his doctor right away.

A big danger with any chronic or systemic illnesses (and especially when there is any overlap with other illnesses) is assuming that every new symptom is explainable by the disease. Whereas, each new symptom needs its own separate evaluation since any other ailment can coincide or overlap, at any time. A good doctor will always start with the basics, such as going through all the most common causes of any problem, and ruling them out carefully, before laying the new symptom at the foot of the existing known disease(s).

It's also helpful not to "save up" new symptoms for a rheumatology appointment, although many of us seem to think that's a good idea in the initial stages. But by getting all new symptoms evaluated right away by a primary care physician (usually an internist), then those records are available for review by the rheumatologist, who is more likely to look only at rheumatic issues and perhaps ignore symptoms that are unrelated to their specialty or the specific illness that they are evaluating.

So for example, by having your son examined for these issues right now, you will have even more information to report to the rheumatologist, and the appointment will not be as likely to get sidetracked. His primary doctor might notice joint involvement and inflammation, for example, which could account for his slowness, or he may notice something altogether different, such as a neurological impairment or other strange thing. In any event, it would likely be a bit too much for a rheumatologist to deal with in one appointment.

That's just my two cents worth...I sure don't know the whole situation and perhaps it will work best for you to cover it at the rheumatologist appointment. Whatever happens, happens! But just because something may or may not be related to scleroderma, certainly does not mean that it may not be serious or worthy of immediate attention.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Elehos

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Posted 10 December 2006 - 09:52 AM

Hi Margaret,

I read your other post as well, but I think most of us were so stunned by your situation that we really don't know how to respond. I am so sorry that this is going on with your son, and having the "Mom's Heart," I think it would be safe to say that you would take all of your son's prolems on yourself so he wouldn't hurt.

You mentioned that he walked around with almost no hip socket left, so I take it he had (has?) SCFE? If so, my son had bilateral SCFE, and it took his doctor a year to finally do the x-rays and set him up with surgery in 2005. With your son's slow walking, I wonder how his hips are doing, and if perhaps his other hip might be going as well.

The zoning can be a big problem for me, and it's usually a sign of a lupus flare coming. I can't remember simple things, blank on names of people I've know for a lifetime, call almost everything "that thing...the uh...whatchamacallit..." Since CTD's can overlap, it might not be just sclero alone, but only a doctor can tell you for sure. If your son is in pain, there's no doubt that alone can cause a mental fog and slow him down, so please do bring it up to his doctor.

Please don't ever feel like you have a silly question; I posted one about weird sweating since one armpit will suddenly pour (and I'm not even hot!) and the rest of my body will be dry, and if there was ever a silly question, that was it! Yours are medically necessary, and it must be horrible not to know what's going on with your son as easily as most of us. Obviously you watch your son closely, so if you have questions, you can always ask here, and of course bring them up to the doctor.

Warmest wishes to you and your son,
Elehos

#8 Margaret

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Posted 10 December 2006 - 02:28 PM

<<I would urge you to contact his doctor right away to report the development of these new symptoms, as they are quite unlikely to be related to scleroderma, and certainly they would not be part of a constellation of symptoms that would lead to a scleroderma diagnosis.>>

Hi Shelley,

I had him in to see his pscyh. last Tuesday. He had not been in since Aug., and I was telling him how he had gone downhill in his studies this fall and that he was being 'worked' up for scleroderma since his esophagus has stopped working. He told me that scleroderma does cause mental problems because of mini strokes due to hardened collogen building up in the brain capillaries. They can break off like bits of cholesterol due?? He also said that his cognitive abilities may get worse if he does have scleroderma.

<<You mentioned that he walked around with almost no hip socket left, so I take it he had (has?) SCFE? If so, my son had bilateral SCFE, and it took his doctor a year to finally do the x-rays and set him up with surgery in 2005. With your son's slow walking, I wonder how his hips are doing, and if perhaps his other hip might be going as well.>>

Hi Elehos,
What is SCFE? His hip dysplasia was from low muscle tone due to the DS. His other hip is fine....found that out last month when the rheumatologist. doctor ordered a full body scan to r/o rheumatologist. or some other autoimmune bone disease. Everything came back negative. They are really grasping at straws here. The gastro doctor, unfortunately, seems to pulling all the right ones, though.

I like the term 'brain fog' .......my son always says "duh....brain cells" whenever he does something dumb or can't remember. He'll hit the side of his head when he says it like he's trying to wake them up!!! Thanks again for all the replies. I am learning so much and appreciate the help. I trully hope it's not scleroderma only because of all the messages I have been reading and the pain so many of you are in.
Take care, Everyone.
Margaret

#9 Shelley Ensz

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Posted 10 December 2006 - 04:39 PM

Hi Margaret,

I'm very sorry your son is experiencing these problems. It must be very hard to cope with all the medical tests and confusion.

For what it's worth, and again, I have no medical training at all, but it is my understanding that if mini-strokes of any type are suspected, a thorough work-up should be done for them immediately, never presuming they could or would be caused by scleroderma. There is a much higher risk of a full stroke within 24 hours of a mini stroke, and within 3 months of a mini-stroke -- which may be preventable with prompt diagnosis and treatment, regardless of the cause.

I may be wrong, I often am, but I think he should have an examination to determine whether the zoning out is due to seizures or mini-strokes, or whatever.

I certainly wouldn't say its a given that people with scleroderma would automatically have worsened cognitive abilities. In the case of Downs Syndrome and autism (with possible Alzheimer's) there would already be such significant impairments that it would be rather unlikely for them to be able to measure or identify an additional cause of cognitive worsening.

Since severe esophageal problems are common in Downs Syndrome, but it is very rare for the esophagus to just suddenly stop working in scleroderma (usually it is just a long slow decline), it may just be that they are carefully ruling out all other possible causes of this before attributing it to Downs. I will hope that the rheumatology appointment turns out well this week, as your son's health concerns already sound overwhelming.

How is he managing to get nourishment, with his esophagus no longer working? Did he have to go on tubal feeding, or was it just a temporary situation of some sort?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 oddone

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Posted 11 December 2006 - 06:55 AM

Hi
A quick question to those of you out there, this thread interested me.
My husband was diagnosed Oct/06 with Diffuse Systemic Scleroderma. This thread interested me, because of the discusion of Downs. I was pregnant with a Downs baby six years ago, and lost him the beginning of my third trimester. We went through all the geneology to trace through for a clue as to where it came from.....to no avail. Has anyone ever heard that Downs and Sclero are associated in anyway? Ive never come across any info in this regard, and just thought I'd ask.
Thanks
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#11 Shelley Ensz

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Posted 11 December 2006 - 07:27 AM

Hi Odd One,

I'm very sorry that you miscarried; and that your husband has scleroderma.

As it happens, I've never heard of any association between Down Syndrome and Scleroderma. To the best of my recollection, this is the first time this topic has even come up in nearly 9 years of this site's history.

Down Syndrome is very common in the general population, affecting about 1 out of every 660 live births, whereas scleroderma is very rare. As I understand it, Downs is usually caused by a spontaneous gene abnormality, and there is seldom a family history of it. It is much more common when the mother is over 35 years of age.

There are issues that can affect systemic scleroderma pregnancies, but I've never heard of an increased incidence of Down Syndrome, nor any correlation between these two conditions.

Of course, I have no medical training at all, and I may be wrong (I often am!) so please let me know if you uncover any reliable research to the contrary. It is inevitable that some people with scleroderma (at least about 1 in 660) will have had a Down Syndrome baby, but I am not aware of any connection beyond that.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Elehos

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Posted 11 December 2006 - 07:27 AM

Hi Oddone,

I worked for some time at ARC (Association for Retarted Citizens), and people with Down's are more likely to have a variety of health problems, including having weaker respiratory systems, so it seems that they would be more susceptible to various types of arthritis, including sclero.

Although sclero has been around for centuries, it's still one of those things that is a mystery as to the exact cause of it--it has been linked to environmental factors for one example, such as exposure to toxic elements, which seems to be my case (part of the hazards of being an artist and silversmith for decades, not to mention asbestos and pesticides), but that's not to say a person with no exposure is excluded. There is great info on this site, no doubt, but if everyone gave you their background, we might or might not have any similarities at all. Someone else will most likely chime in here and give you some info or links that could answer your question better than I can.

Aside from that, I'm sorry to hear about your husband, and do hope that he's getting good medical care as well. Since you're on the board here, it seems that he has great support from you, which makes all the difference in the world too!

Best wishes to you,
Elehos

#13 Elehos

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Posted 11 December 2006 - 07:36 AM

Hi Margaret,

I'm glad to hear that at least your son's other hip is doing well! SCFE is slipped capital femural epiphesis (I think I spelled that right), and it's when the ball joint at the top of the femur pulls out of the hip socket, which happens most frequently with athletic boys between ages 8 and 11. If it's corrected immediately it's not necessarily a big problem--a pin in the hip keeps it in place and allows the hip joint to continue to grow, but my son had it in both hips and ended up with a seriously damaged left hip joint. He's a trouper, but how he walked around with hips like that for an entire year is a mystery to me. Hope that answered your question there, and hoping that you can find out what's going on with your son quickly.

Warm wishes,
Elehos

#14 Margaret

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Posted 11 December 2006 - 08:36 AM

<<SCFE is slipped capital femural epiphesis (I think I spelled that right), and it's when the ball joint at the top of the femur pulls out of the hip socket,....a pin in the hip keeps it in place and allows the hip joint to continue to grow, but my son had it in both hips and ended up with a seriously damaged left hip joint......but how he walked around with hips like that for an entire year is a mystery to me>>

Hi Elehos.....ouch!!! My son now has 5 pins holding what is left of his hip socket to his femur head. They did the Ganz procedure....cutting and shifting bone so they would not have to do a hip replacement since he's so young. Your son sounds like mine....how in the world did they walk around with it?!?!? His pediatrician said any 'normal adult' would have been in a wheel chair and on pain meds. Kids are so resilient, though. His surgery was when he was 15. Take care, Everyone.
Margaret

#15 Elehos

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Posted 12 December 2006 - 09:27 AM

Hi Margaret,

You're right about kids being resilient, and I was the same way as a child. It seems that the more widespread the damage and more chronic the pain, the less I could deal with it after a while. The pain started around my 7th B-day, but I didn't take so much as an aspirin until the age of 21. Guess I was always hoping against hope it would be gone tomorrow. It seems to have wired my brain a bit differently though, and it was in my best interest to train my body to respond naturally as long as possible. I wonder if pain has become such a "normal" thing to your son that he doesn't even pay much attention until it's at that killer level. I'm so glad he's under you're watchful eye, and you know his behavior enough to pick up on changes. You'll certainly be in our thoughts, and we all hope that your son gets the right treatment right away!

Hugs to you both,
Elehos