Update on DS5's health, and a question (which doctor to call).

[AimeeM]

I'm not sure if I've updated since the geneticist called after presenting Nico's case to his colleagues. His appointment was back in December; later in January the geneticist called and said that based on his examination of Nico, the pictures he took of Nico, and Nico's skeletal survey and bone age scan (ordered by his Endocrinologist), his board felt that there was enough concern to warrant one specific test for Noonan's Syndrome, although they do not believe it is "highly likely".

Nico also saw his cardiologist recently who added him back to his patient list (Nico had been discharged from his Cardio's care, and his care-plan turned over to our Pulmonary Team and the Endocrinologist). He isn't thrilled with how the Pulmonary Team has been handling and changing the care-plan put in place by Nico's first team (peds' surgeons, cardio, and pulmonary). He has asked that we work on endurance building with Nico so that he can administer some specific diagnostics that are non-invasive, instead of the initial "more invasive" tests he was considering; he wants to see Nico again after he can successfully complete a lung function test with pulmonary.

 

His main concern, and ours, is A) the lack of growth, B) the lack of energy and very obvious "tired" look that Nico carries, C) Nico's inability to just get "moderately sick" (i.e. when the other children get sick and run 101 fever for a couple of days, Nico is running 104-105 for over a week, and his blood cell counts come back "off" - every thing "little" blows up, it seems), and C) his pain.

 

The pain is my question. He's had pain for years now (and yes, it has been looked into - see the note about the scans above) - neck, arms, chest, but most of the time it's his legs. the last couple of weeks have been bad; he's up half the night with leg pain (one leg primarily), and then this morning he was on my lap most of the morning with his leg hurting. The endocrinologist has run pretty extensive blood work, on top of the bone/skeletal scans, and can't seem to find a reason. It's getting out of hand, though, but I'm not sure what calling the doctors will do - he already has a care plan for his known congenital defects and health issues, they are aware of the pain, and nothing has been done yet (understandably so, as nothing specific to the pain can be found)... 

 

but it's hard to watch. His pediatrician is an amazing advocate for him, so much so that even though we're moving quite a distance from her office, we plan to continue with her as his primary care pediatrician. Is calling her, and getting Nico in for an appointment, going to do anything, though? Is there anything they haven't looked at or considered as a source for the pain? Or would I just be dragging him into an office filled to bust with sick children (it's been a rough winter for EVERYONE it seems, regarding the flu, viruses, etc) for nothing? 

[wapiti]

.

[amo_mea_filiis.]

I hate to mention celiac disease and vitamin D everywhere, but that's been ruled out/checked, right? I can tell when my D is dropping because of lower body fatigue. Mine isn't a pain, but a "blah" feeling.

 

Is it *possible* he *sometimes* complains of pain for attention? My ds had knee pain for years and his drs said that kids don't usually complain of consistent pain for attention, but I'm sure it's possible. In our case, ds would complain and just switch activities. His turned out to be caused by tightness and growth spurts. He's very tight from his lower back through heel cords. With growth spurts he gets tighter and is in pain. By wearing night splints for the heel cords, it keeps his just loose enough to not have pain.

[brehon]

I couldn't tell from reading, sorry. Is Nico on any type of pain medication(s)? Is so, is this break through pain? If not, can he take pain meds (i.e., are they effective even at just diminishing the pain enough so he's not as miserable)? There are non-narcotic pain meds that are effective, though I'm not sure about their use in peds.

 

In other words, what's being done to control/manage the pain while all the testing, etc is going on?

[Laurie]

 

 

The pain is my question. He's had pain for years now (and yes, it has been looked into - see the note about the scans above) - neck, arms, chest, but most of the time it's his legs. the last couple of weeks have been bad; he's up half the night with leg pain (one leg primarily), and then this morning he was on my lap most of the morning with his leg hurting. The endocrinologist has run pretty extensive blood work, on top of the bone/skeletal scans, and can't seem to find a reason. It's getting out of hand, though, but I'm not sure what calling the doctors will do - he already has a care plan for his known congenital defects and health issues, they are aware of the pain, and nothing has been done yet (understandably so, as nothing specific to the pain can be found)... 

 

 

Children can have fibromyalgia.  Does he have pain in these common "tender points"?   http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points?page=2

 

 

[TechWife]

 

The pain is my question. He's had pain for years now (and yes, it has been looked into - see the note about the scans above) - neck, arms, chest, but most of the time it's his legs. the last couple of weeks have been bad; he's up half the night with leg pain (one leg primarily), and then this morning he was on my lap most of the morning with his leg hurting. The endocrinologist has run pretty extensive blood work, on top of the bone/skeletal scans, and can't seem to find a reason. It's getting out of hand, though, but I'm not sure what calling the doctors will do - he already has a care plan for his known congenital defects and health issues, they are aware of the pain, and nothing has been done yet (understandably so, as nothing specific to the pain can be found)... 

 

but it's hard to watch. His pediatrician is an amazing advocate for him, so much so that even though we're moving quite a distance from her office, we plan to continue with her as his primary care pediatrician. Is calling her, and getting Nico in for an appointment, going to do anything, though? Is there anything they haven't looked at or considered as a source for the pain? Or would I just be dragging him into an office filled to bust with sick children (it's been a rough winter for EVERYONE it seems, regarding the flu, viruses, etc) for nothing? 

 

Given the circumstances and the risk to your son should he get sick, instead of dragging him in there, why don't you call and ask for the pediatrician to call you? If, after talking with you, she wants to see him, then bring him in, but ask if you can skip the waiting room (our pediatrician's office allows some people to arrive at the back door and go straight into an exam room). 

I think having her involved with pain management would probably be a good thing, provided none of the other docs see a conflict. She will probably contact all of them to check before she prescribes something, but she can do that much easier than you can. 

 

:grouphug:

[katilac]

Are any of the doctors involved specialists in immune disorders? My sister's main doctor for her immune disorder was a rheumatologist (and I believe he is also the one who diagnosed her). 

 

It would be totally unfair for the little guy to have an immune disorder on top of his other issues, but that's what 'pings' for me when reading your post. 

 

I would also consider finding out where the nearest pain management clinic is, and talking to them about his situation. 

[AimeeM]

I hesitate to even mention the alternative possibility I have in mind, though we have fallen down just such a rabbit hole with one ds.  

 

Wacky, rather troubled immune system + possible but unidentified genetic mutations + cardiac issues + tired +  ...years of on and off leg pain + doctors can't find explanations = explore possibility of existing infection, e.g. Lyme and the other infections that tend to travel with it.  

 

(My ds has all those things plus additional things.  He recently tested "flaming positive" for Lyme and was diagnosed with Bartonella based on clinical symptoms, but we are way way outside the mainstream medical world at the moment.)  The solution involves treating the infection(s) and working to fix the immune system.  Unfortunately, how to even go about testing for that is a can of worms in itself.  (In my neck of the woods, I can't even say the word lyme to our ped, lest her head explode.)

 

Has he had any immune system parameters tested?   IgG subclasses, for example?  Eta, IgA and also the celiac panel as a poster mentions below?  There are lots of possible angles that would need to be explored, but from a big-picture perspective, I'd be looking at the immune system (including but not limited to the gut, methylation mutations, infections that a normal person would have been able to clear that have hung around, etc.).

 

Any digestive issues?  Constipation/diarrhea, etc.?

Yes to the digestive issues. He has always been so chronically constipated that at almost 6 years old, he isn't potty trained and is still in a diaper. 

 

He has had Celiac's testing, as well as extensive allergy testing.

[AimeeM]

I hate to mention celiac disease and vitamin D everywhere, but that's been ruled out/checked, right? I can tell when my D is dropping because of lower body fatigue. Mine isn't a pain, but a "blah" feeling.

 

Is it *possible* he *sometimes* complains of pain for attention? My ds had knee pain for years and his drs said that kids don't usually complain of consistent pain for attention, but I'm sure it's possible. In our case, ds would complain and just switch activities. His turned out to be caused by tightness and growth spurts. He's very tight from his lower back through heel cords. With growth spurts he gets tighter and is in pain. By wearing night splints for the heel cords, it keeps his just loose enough to not have pain.

Yes, Celiac's has been tested for and his vitamin levels appear to be fine. 

 

It isn't really realistic that he's complaining for attention. He's been in pain since before he could talk. He isn't really active at all when he's complaining, and sometimes he is simply crying in his sleep (as in, while he's sleeping he is crying and holding his leg).

 

We've considered growth spurts... but he isn't growing.

[amo_mea_filiis.]

Tethered spinal cord? No idea if that can cause pain, but can contribute to constipation (I think. It's been a few years since I've read about it).

[AimeeM]

I couldn't tell from reading, sorry. Is Nico on any type of pain medication(s)? Is so, is this break through pain? If not, can he take pain meds (i.e., are they effective even at just diminishing the pain enough so he's not as miserable)? There are non-narcotic pain meds that are effective, though I'm not sure about their use in peds.

 

In other words, what's being done to control/manage the pain while all the testing, etc is going on?

He responds well to ibuprofen, but it isn't a great idea to give it to him as frequently as he needs it - consistent doses, daily, over years, in his tiny 30 lb body could cause a mess of other problems. 

[AimeeM]

Children can have fibromyalgia.  Does he have pain in these common "tender points"?   http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points?page=2

Other than the neck pain, no, not in those areas. His leg pain is in the shin area; his arm pain in the lower or upper arms, but not at the joints.

[AimeeM]

Are any of the doctors involved specialists in immune disorders? My sister's main doctor for her immune disorder was a rheumatologist (and I believe he is also the one who diagnosed her). 

 

It would be totally unfair for the little guy to have an immune disorder on top of his other issues, but that's what 'pings' for me when reading your post. 

 

I would also consider finding out where the nearest pain management clinic is, and talking to them about his situation. 

Not specifically. I know that his endocrinologist ran an exhaustive panel, and he knows of our rather rampant family history of auto-immune issues (Lupus, primarily), and he said he ran some tests in those areas, but I can't read the work-up to know specifically. 

[AimeeM]

Tethered spinal cord? No idea if that can cause pain, but can contribute to constipation (I think. It's been a few years since I've read about it).

Would that have shown up in the scans?

[wapiti]

. 

 

[wapiti]

Would that have shown up in the scans?

 

Tethered cord can only be diagnosed via MRI.  An MRI of the spine and sacral area should cover it, if he had one of those.  But yes, constipation is a very common symptom of a tethered cord and bladder dysfunction as well.  A sign of tethered cord would also be a skin marker of some type in the sacral area, such as a dimple or unusual marks on the skin at the middle of the lower spine.

[AimeeM]

We aren't really open to doctors that aren't licensed physicians, given Nico's rather serious "other" medical issues - at least not without talking to the couple of specialists we trust completely (ones who have been with us from the beginning).

 

I have no clue what IgG subclasses are, so I will ask his pediatrician if she knows if they've been tested (she keeps up with all his work-ups and test results through a shared file with his specialists). I can definitely ask her to run it if it hasn't been run, or ask for an immunologist referral. 

 

All blood work looks fine... except for this white blood cell count sometimes. Occasionally, after a test, I'll get a call from the pedi that it was off and they ask him to come back in a couple of weeks for a re-test, which is usually then within the range of "normal".

Good that the celiacs has been tested.  I'd still look at IgG subclasses (this is not an allergy test - I am not referring to the controversial food panel but regular, mainstream tests of immune function) if possible, as one indication of a serious immune system issue.  (Our immunologist ran that testing.)  IgA should have been tested with the celiac panel as a measure of validity of the celiac test.

 

Yikes.  If you are at all open, and you've explored what your local children's hospital has to offer, I would look for a doctor off the beaten path.  What sort of doc that might be may depend in part on your geographic location.

 

A large portion of the immune system is in the gut.  The signs seem to be pointing in that direction.  (I know, I know, when I have a hammer everything I see is a nail, but I'd seriously look outside the mainstream box if mainstream medicine is failing you.  FWIW, my ds also has a life-long history of constipation... we originally attributed it to ds's tethered spinal cord, but more recently we are seeing that the situation is much more complicated.  Eta, ds's leg pain is not in the joints either, so I was shocked about the Lyme, though his major problem is Bartonella and resulting anxiety and full-blown OCD, or at least that's our latest working theory!!)

 

Eta, any weird results in the area of blood health?

 

I vote for getting a copy of all his bloodwork if you don't already have it.  It's much nicer to have it on hand, to pore over at your leisure, than to have to ask orally about specific results.

 

[wapiti]

. 

 

[AimeeM]

Tethered cord can only be diagnosed via MRI.  An MRI of the spine and sacral area should cover it, if he had one of those.  But yes, constipation is a very common symptom of a tethered cord and bladder dysfunction as well.  A sign of tethered cord would also be a skin marker of some type in the sacral area, such as a dimple or unusual marks on the skin at the middle of the lower spine.  (My ds has a skin tag in his butt crack, er, gluteal cleft.)

The skeletal survey and bone age scans were x-rays, not an MRI. 

The cardiologist is hesitating to do an MRI for the diagnostics that he wants, on his end, because Nico's history with sedation isn't good - the last time he was sedated his BP skyrocketed and that's a huge no-go for him, because of his specific "other" medical history, so an MRI turns into a more invasive diagnostic procedure when accounting for the type of sedation he would need (which would likely need to be administered other than orally, or not with a typical oral sedative, and monitored by an anesth). 

If Nico does end up needing an MRI for the cardio's end of things, the cardio has already said that he would like it to be more full body than focused, to kill as many birds with one stone as we can.

There are no skin markers, though, anywhere in that area.

[prairiewindmomma]

Have they ruled out mitochondrial disease? That would fit a number of the things you mention....

[AimeeM]

You could try curcumin (e.g. Enhansa), a substance in turmeric that is known for its anti-inflammatory properties.  It is possible to take long-term.  For some people (including myself), it rivals ibuprofen in effectiveness for pain relief.  Run it by the cardiologist of course.

 

By the way, when he is taking ibuprofen, do you notice any changes in behavior?

I'll run it by his ped and cardio. Sounds promising, though, assuming there are no risks of elevated BP, heart rate, etc.

 

No changes in behavior other than positive - he is more energetic and feels better, which means he is in a better mood. Assuming, of course, that we have the blue raspberry variety on hand, lol, as that is the only kind he will take :D

[wapiti]

. 

 

[AimeeM]

Have they ruled out mitochondrial disease? That would fit a number of the things you mention....

I believe that was included in the Endo's run, yes. The geneticist will be running a very specific test for Noonan's, but I would imagine if I looked back at Nico's records and found that these tests hadn't been run, he would agree to run those as well.

 

I sound like a terrible mom, not knowing specifically what has been run and when. I just can't keep up - he's had so many diagnostics run over his 5.5 years - x-rays, CTs, blood work in a million different ways - that I can't remember what has been tested for and when :(

[prairiewindmomma]

I had a kid who had a legal file of medical test results. I had to condense it to spreadsheets to put into the flexfile I carried between the care team. I totally understand not remembering off the top of your head what panels have been run. No worries. ;)

 

Neuropathy can feel like pain to kids, who sometimes lack the words to describe accurately what they are feeling. It's an angle to consider....my dd said it felt like stabbing pains as well as burning or jabbing.  

[wapiti]

. 

 

[Katy]

If he tolerates advil, have you tried children's Alieve?

 

ETA:  Food antinflammatories - a chai latte in the morning (homemade, with cinnamon, ginger, black tea, and milk) might be something to try. 

 

Also Salmon.

 

Poedered ginger as a poultice to the sore spot on the leg for half an hour might be something else to try.

[AimeeM]

I know what you mean, certainly.  It's been a struggle for us due to our geographic location.  If you are near a very big city and/or are back east, it might be easier to find outside-the-box opinions from respected MDs.

 

FWIW, our cardiologist has been the most reliable in terms of being concerned about stuff that our ped ignored (e.g. untreated strep situation).  He wouldn't be able to recommend a more outside-the-box doc to ferret out the big picture, but he certainly made sure his area was covered (e.g. looked at the heart valve, looked at the sac, ordered the extra home monitoring when ds was complaining of pain in the middle of his chest often at bedtime).

We are in a rather small-ish city in the south. ALL of our specialists are through the same children's outpatient hospital... which is both good and bad. Good because it makes his visits easy - within the same building he has all of his specialists, as well as all diagnostics (radiology, labs, etc) - bad because there is no "break away" for MDs. His pediatrician isn't attached to the hospital, and that's about it.

 

His cardio HAS been amazing, so I know what you mean. Although he's admitted to having an academic interest in the case (which has, in the past, caused some uncalled for fury on my end, with other doctors expressing the same), he treats Nico with kindness and respect, and is very easy to talk to. He has gone so far as to call us after hours from his house, just to check up on everyone when he knows we've received less than great news from one of Nic's specialists. He is the one who, when he found out Nico's care-plan had been deviated from/changed by his new pulmonary team, decided to watch over it on his end. 

 

The frustrating things has been realizing that everything is compartmentalized. We had hoped, as the Endo had suspected, that there was "no way" everything is falling apart on its own - there "has to be" ONE reason... one DX that would explain EVERYTHING... right? Not so much. It does indeed appear that the individual issues (cardiac, pulmonary, growth, etc) are "separate", which was a blow to us. We had been riding on the hope that the Endo was right and there had to be ONE explanation for all of it. The geneticist is going to run the one test, but he doesn't believe it's all related. That's hard to stomach. 

[AimeeM]

Where I was going with that:  if there are noticeable positive changes in behavior on ibuprofen, such as reduced anxiety (if anxiety-like stuff has been an issue - I can't recall), better attention and so on, less "freaking out," that would be a sign that an inflammatory action was connected with the root of the negative side of the coin.  The idea is that the ibuprofen reduces inflammation that was causing a problematic behavior.  If that were the case, that would indicate immune system activity of some type, inflammation possibly in the area of the brain, a common theory for a variety of behaviors, according to our very outside-the-box research immunologist.  (Our immunologist is a fascinating guy but he is not our main doc at the moment.)

 

My ds also needs to avoid elevated heart rate due to his heart issues.  Be aware that some curcumin products contain additional ingredients to increase effectiveness but you would not want those (I'm thinking piperene, I think it's called, that comes from black pepper, and could therefore increase heart rate).  You would want a curcumin-only product.  Does he swallow pills?  That increases the choices.

Well, now that's interesting. 

Yes, he feels better after he takes anti-inflammatories. I will definitely run what you've observed by our pedi and cardio (and Endo, since he seems willing to step outside the box a bit).

Would brain inflammation have shown on a head/brain CT? Besides everything else, Nico has an abnormally shaped and VERY large head - as in, while his body growth is always in the negatives and not able to be charted, his head size is always OFF the charts in the other direction... so, he's had head/brain scans. Lol - in fact, it's a running joke in our family that the first thing we say to a new specialists is "yes, his head has been checked and cleared", because it's the first thing always mentioned when we step into a medical office :D 

 

He doesn't swallow pills.

[AimeeM]

If he tolerates advil, have you tried children's Alieve?

 

ETA:  Food antinflammatories - a chai latte in the morning (homemade, with cinnamon, ginger, black tea, and milk) might be something to try. 

 

Also Salmon.

 

Poedered ginger as a poultice to the sore spot on the leg for half an hour might be something else to try.

Ah. I *wish* I could get chai lattes or salmon down him. He won't. He has some pretty serious food aversions. Not top of our worry list right now, since he does hit all of his food groups and eats enough of them... but trying new foods is something that he would very literally sooner starve than do.

[Whereneverever]

Is traveling for a second opinion at a bigger children's hospital an option?

 

My second DD is medically complex and we travel to the next state for medical care and while the drive (and stay) is a hassle and a half it's worth it. I would want a program that does more integration between specialists on site. Your ped not being there may make it harder for them to get the whole picture- for example where my DD goes they all sit, in the same room, and talk cases over.

[Jan in SC]

Have you been referred to MUSC? We've had two dc sent there, and we had a productive and professional experience both times. We have been for rheumatology and neurology.

 

Your ped should be able to consult with a rheumatologist if she needs a better medicine for pain. There are non-narcotic pain meds that last longer, and won't bother his stomach as much.

[fairfarmhand]

Is there any way you can get him to a teaching hospital like Vandy?

[wapiti]

. 

 

[Whereneverever]

No, a CT won't show the same info for brains as a MRI or more ideally a PET OR SPECT scans. A CT has a lot less info. 

[AimeeM]

Is traveling for a second opinion at a bigger children's hospital an option?

 

My second DD is medically complex and we travel to the next state for medical care and while the drive (and stay) is a hassle and a half it's worth it. I would want a program that does more integration between specialists on site. Your ped not being there may make it harder for them to get the whole picture- for example where my DD goes they all sit, in the same room, and talk cases over.

The ped has rights within the hospital, so she is able to go between the specialists and has access to all of their diagnostics/etc for Nico via her computer. 

We could travel to, say, Emory for another opinion, but his current specialists have colleagues and access to the facilities and doctors at a large research/teaching hospital on the other side of our state, so we've been pretty satisfied with that... thus far. We aren't ruling out going to a larger hospital, but that may actually turn out to be more of a problem than a help - since all of his medical issues have a different specialist, and all are "housed" here, not at (say) Emory, the larger hospital would only have access to records... and we've already (once) had to deal with misinterpretations of his records (i.e. what was written, what was meant, etc), when a specialist couldn't talk directly to another specialist :P

[AimeeM]

Have you been referred to MUSC? We've had two dc sent there, and we had a productive and professional experience both times. We have been for rheumatology and neurology.

 

Your ped should be able to consult with a rheumatologist if she needs a better medicine for pain. There are non-narcotic pain meds that last longer, and won't bother his stomach as much.

We haven't been referred for diagnostics, as our cardio and a couple other specialists work with some of their same-field colleagues at MUSC. We did have the option of having his major surgery done at MUSC instead of locally. 

 

Should I ask the ped about rheumatology or immunology? What is the difference?

[applethyme]

Has he been evaluated by Neurology?

 

[AimeeM]

No, a CT won't show the same info for brains as a MRI or more ideally a PET OR SPECT scans. A CT has a lot less info. 

Ah. We do know that eventually DS may have to have an MRI to get the information the cardio wants... but it's the sedation part that is concerning everyone involved.

[AimeeM]

Has he been evaluated by Neurology?

You betcha. It was one of the first specialties he was seen by... before the lung malformations/defects were discovered even, if memory serves. Scared the britches off of me when she came in and said some big long medical term... and then smiled and explained that it means he has a huge head, and nothing more (following the CT, I mean).

[AimeeM]

Is there any way you can get him to a teaching hospital like Vandy?

Yes. His cardio has already been steadily consulting with his colleagues at MUSC about DS. 

[Whereneverever]

Ah. We do know that eventually DS may have to have an MRI to get the information the cardio wants... but it's the sedation part that is concerning everyone involved.

 

Can you do some visits with Child Life to practice and prep for unsedated MRI? 

[Jan in SC]

I mentioned rheumatology for the pain meds, though I do think the rheumatologist at MUSC is fabulous.

 

My ds had a couple of MRIs, without sedation, right around his age. It was so long ago that I can't remember how it was accomplished, but I bet that bribery played a part.

[Whereneverever]

I mentioned rheumatology for the pain meds, though I do think the rheumatologist at MUSC is fabulous.

 

My ds had a couple of MRIs, without sedation, right around his age. It was so long ago that I can't remember how it was accomplished, but I bet that bribery played a part.

 

A lot of the new machine have set ups for the kids to watch a DVD while the MRI is going on, too, and that really helps, especially if you avoid TV for a few days prior and then use a brand new movie. 

[Ottakee]

My thought went to mitochondrial disorders..........as prairie woman mentioned above.  My girls have a combo of 3 of them.  We had growth issues, constipation, tons of infections/illnesses, immune deficiencies, weakness, muscle pain, etc.  Heart problems can be part of it as well and mine are screened every 2 years for them.

 

Thankfully now the mito panel can be run by blood test (or at least some of them) as my dd had to have the muscle biopsy when she was younger.

 

For us, it was the mito that was the picture to all of our puzzle issues.  Amazingly, my girls have gotten BETTER and BETTER.  Once they hit 8 or 9 things started improving. Of course, they are on a mito cocktail of meds/supplements as well but things are overall a lot better.

[Ottakee]

here is one symptoms checklist   http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631  Often they have a combo of these, not all of them.

 

Here is a main page on mito http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934639#m2  

[katilac]

Ah. I *wish* I could get chai lattes or salmon down him. He won't. He has some pretty serious food aversions. Not top of our worry list right now, since he does hit all of his food groups and eats enough of them... but trying new foods is something that he would very literally sooner starve than do.

 

Cherry juice is another natural anti-inflammatory that kids are more likely to enjoy. He would probably only go for a blend, but it's still something. Also ginger and molasses (which can also help with constipation). If he likes gingerbread or gingerbread cookies, he would get both! Make them yourself and you can add extra ginger - probably not extra molasses, it's pretty strong, lol. And you can add some ginger to just about anything you bake. 

 

Re types of doctors: rheumatologists focus on arthritis, lupus, and various other rheumatic diseases, which in practice means that they see a lot of immune related disorders. Immunologists focus on asthma, allergies, and primary immunodeficiency orders. It looks like there is a fair amount of crossover, in the sense that both specialties diagnose and treat a lot of immune disorders. 

 

Even if the other doctors are aware of family medical history, I would still want him to see a rheumatologist or immunologist. They are not going to be as aware of certain symptoms, certain possibilities, and so forth, because it's not their specialty. 

 

One more thing to ask about: I know that MD Anderson Cancer Center has a service where you pay a fee and send your records in. They review them and let you know if they think they can help in your case or not, and I think also give recommendations if they can't. Might some research and/or children's hospitals have the same thing? It was years ago that I looked it up for a relative, and I remember thinking that it was fairly reasonable at the time, like under $500 (which isn't pocket change, I realize, but is possibly cheaper than trying one doctor or center after another). 

 

I'll think good thoughts for your little guy. 

[Katy]

Oh, I forgot about cherries & gingerbread.  Both are really good ideas.  I think I read somewhere that 10 cherries a day is more effective for adult inflammatory conditions than antiinflammatory meds.

[Liz CA]

Ah. We do know that eventually DS may have to have an MRI to get the information the cardio wants... but it's the sedation part that is concerning everyone involved.

 

CT scans have a place but I would not have too many.

On the subject of brain spect scans, they inject a tracer and the machine rotates around the patient to take 3D pics of the functioning. These are very informative because they are not just images of structure but rather of functioning or what is not functioning.

Would he be able to lie still for a couple of minutes without sedation?

 

I am also wondering if it would be worth getting him an appointment with the Mayo Clinic or Duke Medical Center? I realize it would be more testing, more time and I know from previous threads that your younger ds has issues too. I hope you have family or good friends around for support! Hugs.