Dr. Warwick in Minnesota

[DEES4]

How many of you have heard of Dr. Warwick and how many have actually been able to have a clinic visit with him? I would love to be able to take my son to him but we live 1,000 miles away from Minnesota!! So for those of you that have seen him what does he suggest and what is it that makes the way he treats CF different from other doctors? My son is 2 1/2 years old and I just wonder if we are doing everything possible for his care. I have studied Dr. Warwick some on the internet but would love to him from those who have actually seen him and find out what his suggestions were to them. Thanks
Carrie

 

[mneville]

Carrie- We just returned from a visit with Dr Warwick. We live in
NJ so Minnesota was over a 2 hour flight- not fun with a teething 2
year old! It was great to meet Warwick although now I am confused
about treatments b/c our CF doc isn't in agreement.<br>
<br>
Warwick's patient average is just about 50! He does not favor
Pulmozyne and hardly uses it. He uses Mucomyst in almost all his
patients. It smells like rotten eggs. He told me Aidan was
overweight (Aidan is a Double Delta and needs lots of enzymes) and
that he does not need a high fat diet. He is adamant that patients
need an hour a day of the VEST. He just made a new VEST, the
Incourage System, that we use. It is pretty easy to get an
appointment with him for a consult. Just call the Minnesota CF
center.<br>
<br>
Megan, mom to Aidan

 

[DEES4]

Megan,
What is it that Dr. Warwick suggested that your other doctors do not agree with? My son just started pulmozyme 2 months ago and now I am wondering if that was the best idea or not. Do you know why it is that Dr. Warwick does not like or use the pulmozyme? I am going to talk with my sons docs at his next appt. about the mucomyst. What does it do? I want as much info as I can get so I sound educated about what I am talking about....it's hard enough to try and argue with the doctors. Thanks!
Carrie

 

[DEES4]

Megan,
One more question....My son is also double delta....how did you get your son to be overweight? My son takes his enzymes and we are constantly getting him to eat. He is still only in 25th percentile for weight and height. If Dr. Warwick does not think they need to be on a high fat diet what does he recommend they eat?

 

[NoExcuses]

DEES4, just because kids have the same mutations doesn't mean their CF will turn out the same. There are modifier genes that can have a large impact on clinical outcomes. So definitely don't hang your hat on your kid's mutations.

 

[DEES4]

Amy,
I know all about the mutations and how everyone's cf is different even with the same two mutations. I was just curious as to what Megan was doing to make her son gain weight so well. I am definitely not "hanging my hat" on anyone else's experience...just trying to get ideas.
Carrie

 

[NoExcuses]

cool! <img src="i/expressions/face-icon-small-smile.gif" border="0"> just wanted to make sure that was clear.

 

[mneville]

Hi Carrie, I am so upset b/c we audiotaped our entire consult with
Warwick but when we went to listen to it, we could hardly hear
him.<br>
<br>
Pulmozyne- he says it is a great drug but does not help everyone.
He thinks Mucomyst is the best as it has a bit of everything
(anti-inflammatory,opens airways etc..) Our CF doc does not think
Aidan needs Mucomyst right now, he also warns me about the horrible
smell saying there is probably no way Aidan would tolerate it.
Which is probably true. Our CF doc said there have just been
studies in Europe showing that infants with CF benefit from
Pulmozyne. It can't hurt to keep them on it, it just may not be
helping. At this point because Aidan's health has been great, we
will keep him on it.<br>
<br>
Weight- We worked hard in this area. Aidan was born at just over 5
pounds and started losing quickly until he was DXed with CF at 8
days old. He showed severe pancreas symptoms from Day 1 or 2. We
make very bite count. He eats bacon, pork roll, pizza, hot dogs,
the fattiest yogurt I can find. I also added whipping cream to all
his baby food and milk. Aidan did have sinus surgery in Feb in
which we lost a pound or two but since his sinuses have been
cleared, he has gained readily. He now weighs 34.5 pounds and is
not yet two. Now that is he "overweight" I have cut out
the whipping cream and the Carnation drinks.  When Aidan's
enzymes are right, he digests food in a normal fashion, just 1-2
BMs a day that sink. So we make sure he has enough enzymes and give
him high fat food in addition to other stuff although he hates to
try new foods! Hope this helps!<br>
<br>
Megan

 

[mneville]

Carrie- Do you have the VEST for your son? We have Warwick's new
VEST, the Incourage system- we love it!

 

[NoExcuses]

are there any pics of the Incourage system?

 

[DEES4]

Megan,
Thanks so much for all the info. No we do not have a vest. I asked about the vest at our last visit and the doc didn't seem to think he needed it. We do chest pt by hand twice a day. I am going to look into the vest by Dr. Warwick though...after all I do have the final say in my son's care. So we may decide to try the vest even if the doc doesn't think it is necessary.
I think my son would be gaining weight a whole better if he were not allergic to milk and eggs. It really makes things alot more difficult as far as weight is concerned. Although he is only in the 25th percentile at one point he was not even on the charts so he is doing better. Hopefully he will outgrow the allergies soon. The allergy doc says that most children who develop food allergies (except for peanut) before the age of 2 usually outgrow them between ages 4 and 6. So I am praying that will be the case for Sawyer. I would love to be able to add the cream and all that good stuff to his food but for now will have to stick to what we are doing. Thanks again!
Carrie

 

[amber682]

Megan,<br>
I wanted to ask you if you know why its different than other vests.
I googled it, but only found out something about running in a
different wave pattern? Did you have another vest before this one,
and if so do you notice a difference? I'm so jealous, I want a vest
so bad!

 

[momofjosh]

I just wanted to say that my son had a consult with Dr. Warwick and we were very impressed. My brother read about him in a magazine article and was adament about getting my son an appt. with him. It was about a 6 hr. drive but it was worth it. Lets just say my son and his adult CF doctor didn't really get along and he never felt like she cared about him. Dr. Warwick spent about 5 hrs. with us and I think my son had a glimmer of hope again. We got a vest he recommended and I think if Dr. Warwick had been my son's dr. all along his whole attitude would have been different. Who knows, things may have turned out a little bit different too. Everyone at Fairview University treated us wonderful from the first call through the whole visit. We lived too far away for my son to even consider having Dr. Warwick as his doctor, but I know he would have wanted it that way if it was at all possible. It was great just getting to meet Dr. Warwick and to get a whole new attitude about everything. A friend of my sons goes to that clinic and is extremely happy.
Kathy

 

[dyza]

I came across an article and I'm sure it was about dr Warwick, I think that he believes that the muccous in the lungs should be thick and that is what keeps away infection. Does that sound right? Damn I'll need to go and see if I can find it again.

 

[dyza]

Totally way off the mark on this.....LOL

I'm thinking of Dr Bruce Rubin of Brenner childrens hospital, Winston Salem.
And he believes that not enough muccous is released, and that it is the muccous that helps to stave off infection. I so hope that makes sense, please someone look this up, I'm tired right now. I found it on a video search on Yahoo.

 

[dyza]

<a target=_blank class=ftalternatingbarlinklarge href="http://news.bbc.co.uk/1/hi/health/3853175.stm
">http://news.bbc.co.uk/1/hi/health/3853175.stm
</a>

Here is a link to the Dr Rubin theory.

Just noticed its dated 2004 so its probably old news now.

 

[mneville]

The mucous is thick in the body of a CFer. The water/salt channel
is not functioning properly so there is not enough water to make
the mucous thin. This is how Warwick explained it. His VEST is
different in the way it vibrates the body. It actually makes water
available somehow which then gets the mucous moving around. The
Incourage company has 2 people with CF who work for them, They have
used all the vests and agree that this is the best and most
comfortable. So I was sold. Aidan has had no problems with it at
all- he is up to the 80% in pressure. I can try to post a pic of
him in it. I'll have to get hubby to help me with that!<br>
<br>
Carrie- I would push the clinic for a VEST. Aidan got his at about
18 months and is doing great. An hour of this VEST a day is the
best preventative treatment out there says Warwick. I would tell
your clinic that they make VESTS for very young children now with
the purpose of preventing lung issues. And it works. Our insurance
covered it with very few problems.<br>
<br>
Megan

 

[DEES4]

Megan,
I am going to definitely talk to my son's doc at the next appt. which is in September about the vest. Thanks so much for your help. Also do you know if they can do mucomyst and pulmozyme or is it one or the other? Thanks

 

[mneville]

Not totally sure about the Mucomyst and Pulmozyne together but I
believe they can. We are opting not to stop Pulmozyne b/c our
current CF doc doesn't totally agree with Warwick.  <br>
<br>
Milk allergy- we would be doomed if Aidan had that allergy. For a
while we thought he may have a milk allergy causing all the sinus
issues but allergy testing and a CAT scan proved otherwise. Aidan
only seems to eat and drink dairy!  Hopefully your son will
outgrow it.<br>
<br>
<br>
Megan

 

[bmombtoo]

My middle son David was on Mucomyst as a toddler. It did spell bad
but he tolerated it. The pediatrician started it in the hospital
after he had a "status " attack an cough up mucous that
was so dry and thick it looked like chicken skin. We used it for
awhile and it worked well, it really thins out lung secretions. We
stopped when they started using Turbulaine (?), and than Xolair
came out.