Washington Post: With his son terribly ill, a top scientist takes on CFS

[halcyon]

Do you or anyone know if they were able to get him to the hospital to get the feeding tube inserted?

https://twitter.com/i/web/status/685276718479757313

 

[Gingergrrl]

A million likes for the above post. What does "jtube" exactly mean? Is it a feeding tube that goes into your nose or stomach or something else?

 

[halcyon]

A million likes for the above post. What does "jtube" exactly mean? Is it a feeding tube that goes into your nose or stomach or something else?

Goes directly into the small intestine I believe.

 

[Never Give Up]

A jtube is an abdominal feeding tube inserted into the jejunum(the mid section of the small intestine.)

What a happy picture!

 

[Kati]

j-tube is a jejunum tube. It is inserted from the abdominal skin to the entrance of small intestine. Formula type of food is then dripped intermittently via a pump.

 

[dannybex]

Awesome news!

He really does look like he's already put on a few pounds.

 

[acouchy]

@Roy S Thank you for posting that picture which made me very happy to see. I am so glad that Whitney knows how many supporters he has and that he could enjoy a brief moment with his beautiful mom.

It is interesting re: the Ativan and this is wild speculation but does he have a mast cell disease? Besides the more traditional uses for benzos (insomnia, anxiety) they also help in MCAS b/c there are benzo receptors on the mast cells. Some one much more scientific than me could explain it but I just wondered if this was a possibility? When my MCAS was at it's worst, we added Klonipin to my mast cell regime which I no longer need but it did help at the time.

ETA: Was also curious b/c of the intolerance of food issues but I know there could be a million other causes.

Regardless of that, it is wonderful to see the picture!!!

I agree... the use of Ativan helping to improve his condition is fascinating. I have been using a low dose of Ativan during bad flares to reduce the anxiety caused by being so unwell and I have also experienced symptom improvement. My GP gives me a hard time about my Ativan use. I know it relaxes and helps with anxiety when I am sick but it also seems to lift the fog a little and lets me function a little more. I will definitely look into mast cell disease. Thank you for mentioning that. I really wonder about this. Does anyone know where to find more information on this subject. I would really love to know more so I can talk to my GP about it. I think he really wants to stop giving me any.

 

[Gingergrrl]

I agree... the use of Ativan helping to improve his condition is fascinating. I have been using a low dose of Ativan during bad flares to reduce the anxiety caused by being so unwell and I have also experienced symptom improvement. My GP gives me a hard time about my Ativan use. I know it relaxes and helps with anxiety when I am sick but it also seems to lift the fog a little and lets me function a little more. I will definitely look into mast cell disease. Thank you for mentioning that. I really wonder about this. Does anyone know where to find more information on this subject. I would really love to know more so I can talk to my GP about it. I think he really wants to stop giving me any.

@acouchy The only reason I mentioned mast cell disease is the combination of Whitney no longer being able to tolerate any food and Ativan helping him. It is wild speculation and I could be completely wrong. I was hospitalized for a week when my MCAS flared to the point that I could not eat any food and the doctors were considering a feeding tube for me. They tried many meds and explained how certain benzos can help mast cells (in my case we tried Klonipin vs. Ativan) but on the MCAS boards that I follow, many are helped by Ativan for their allergic reactions (not for anxiety or insomnia which is the traditional use.) Many docs do not know about this. I only wanted to mention it in case it could help someone but of course I could be way off as I said.

 

[Sushi]

The only reason I mentioned mast cell disease is the combination of Whitney no longer being able to tolerate any food and Ativan helping him.

I wonder why Whitney can't eat? I had thought it was more gastroparesis than MCAS, but I might be wrong.

 

[Kati]

Ativan use can sometimes mean 1 time dose to relieve anxiety or help relax during a hospital procedure or transportation.

i would be careful to speculate whether Whitney is or is not on regular Ativan, in my opinion. Personally I rejoice in Whitney having had a moment of feeling a little better and spend quality time with his parents.

The info obtained from Whitney's big day came from his mother who volunteered this on Twitter. Considering that Twitter is a very public place, it is best to be respectful of privacy.

 

[Gingergrrl]

I wonder why Whitney can't eat? I had thought it was more gastroparesis than MCAS, but I might be wrong.

@Sushi you could be completely right re: the gastroparesis and I have no idea. Was only mentioning it as many docs do not know that benzos can help tamp down mast cell reactions and assume they are only for anxiety or insomnia.

 

[Gingergrrl]

Ativan use can sometimes mean 1 time dose to relieve anxiety or help relax during a hospital procedure or transportation.

i would be careful to speculate whether Whitney is or is not on regular Ativan, in my opinion. Personally I rejoice in Whitney having had a moment of feeling a little better and spend quality time with his parents.

The info obtained from Whitney's big day came from his mother who volunteered this on Twitter. Considering that Twitter is a very public place, it is best to be respectful of privacy.

Absolutely and would never state that any person was taking a med as a one time dose versus ongoing and that was not my purpose.

I also rejoice in Whitney having a moment of feeling better with his parents and hope it didn't seem otherwise! I met Whitney's father at a fundraising event in 2014 and have the absolute deepest respect and admiration for their entire family.

I have never used Twitter but assume it is public like you said so if they posted that information, then they chose to make it public and you never know when someone's experience can help others no matter how obscure.

 

[valentinelynx]

A bit late to come into this thread but interesting as I had a general health check up recently, at the time I was feeling terrible and doubted I could get there, part of the results were that my folate and B12 levels were through the roof, despite my having not supplemented them for at least 12 months....it would make sense to me that they were just sitting not being converted, and why doctors such as Dr M and KdM prescribe B12 injections. Oh and also why useless general GPs who haven't a clue would poo poo these.

My B12 & folate were also very high without significant supplementation. Dr Kaufman at OMC has me working up to 10 mg of methyl-B12 three times a week. Plus 10 mg methylfolate orally per day.

 

[valentinelynx]

@acouchy The only reason I mentioned mast cell disease is the combination of Whitney no longer being able to tolerate any food and Ativan helping him. It is wild speculation and I could be completely wrong. I was hospitalized for a week when my MCAS flared to the point that I could not eat any food and the doctors were considering a feeding tube for me. They tried many meds and explained how certain benzos can help mast cells (in my case we tried Klonipin vs. Ativan) but on the MCAS boards that I follow, many are helped by Ativan for their allergic reactions (not for anxiety or insomnia which is the traditional use.) Many docs do not know about this. I only wanted to mention it in case it could help someone but of course I could be way off as I said.

The doctors at Open Medicine Clinic are very aware of MCAS and treat it aggressively. If WD has it, I'm sure it is being treated.