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Old 01-02-2012, 10:51 PM   #41
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Re: UPDATE:12/28 Almost 7 years of chronic illness, finally getting help! Many update

Hey Momma, I am lurking in this forum, looking for some help for my friend's DS and couldn't help but read when I saw your username.
any update?

I am sending love and well wishes to you and your family. Your boys are beautiful, I love the pics.

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Old 01-03-2012, 06:28 AM   #42
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Re: UPDATE:12/28 Almost 7 years of chronic illness, finally getting help! Many update

Thank you moma. Nothing new since that last one. I did do loads or reading on milk alternatives. I found some good deals and coupons , so that helped. We have transitioned into split meals. Where I cook enough without cow products for Cayden and the rest of, let's say, shepards pie with ours. We're learning slowly. They just uped the GERD meds again, so we have 3 months to pray for it to work, or it's surgery for him. He didn't go back to school today because the county called it due to snow. Perhaps they will be there and I can call about the diet. So far I have had no luck finding things he can eat on their menue. He get's free lunch and that's the only help we get. My disability is $40 too much for foodstamps. I plan on talking with them about it though. The county, no matter how tiney, should offer something for kids with allergies.

Thanks so much for asking moma! Hope everything is ok with your friend!
Huggs!
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Old 01-03-2012, 06:28 AM   #43
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Re: UPDATE:12/28 Almost 7 years of chronic illness, finally getting help! Many update

Thank you moma. Nothing new since that last one. I did do loads or reading on milk alternatives. I found some good deals and coupons , so that helped. We have transitioned into split meals. Where I cook enough without cow products for Cayden and the rest of, let's say, shepards pie with ours. We're learning slowly. They just uped the GERD meds again, so we have 3 months to pray for it to work, or it's surgery for him. He didn't go back to school today because the county called it due to snow. Perhaps they will be there and I can call about the diet. So far I have had no luck finding things he can eat on their menue. He get's free lunch and that's the only help we get. My disability is $40 too much for foodstamps. I plan on talking with them about it though. The county, no matter how tiney, should offer something for kids with allergies.

Thanks so much for asking moma! Hope everything is ok with your friend!
Huggs!
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Old 01-28-2012, 07:38 AM   #44
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Re: UPDATE:1/28 Almost 7 years of chronic illness, finally getting help! Many updates

Cayden's latest update.
After missing 3 days of school last week and being sick at school for the most part of one day, we went to see all of the specialists friday. He threw up half of the day monday, did ok at school tuesday, sent home wednesay for abdominal pain, thursday he toughed out really bad diarrhea, and friday we went to Knoxville. Something has to give for this boy. The pulmonoligist visit went great. The meds have increased his lung copasity by 20%! Yay, some silver lining. Then we went to the gi. We didn't get to see his normal Dr. because he was out for the week. We saw him MA. I wasn't pleased with the visit, but we will be able to have next months apt with Dr. Altawil next month. I asked mylist of questions and 90% of the replies were, "it's the med doing that". Apparently the GERD/reflux med had lactose in it. She was sure all the problems were being caused by it because how bad the lactose intolerance is. I'm not thinking it's that at all. He has always had the issues, it's just getting worse. I said this and was told it's because of how bad the condition of the inside of the stomach and esophagus was. 'm still irritated with the answers. So, they are changing that particular med. Both Dr.'s did help out with the 504 papers for the school. I stressed to her about the weight. He actually has lost a little since the last visit, despite upping his calorie intake to about 3X what he would normally be on. She explained that his hunger is prob mostly from the ulcers. Somehow ulcers say feed me? And then it just goes through him. AHH! On to the next Dr. The hemotoligist. We went through a million an 1 questions and pulled a bunch of labs. The Dr. was unsure if the bleeding could have been an actual disorder or the tissue just being so thin and raw? So we plan to get those results in about 1 week. What a misserable day, up and on the go since 4am. Poor kids. They got to spend the night with Gramma and will be coming home today. Say some prayers for a better month. I was told that they will need to be doing another complete scopeing soon. They want to closely measure the progress of the healing.

I just looked and when I started this thread he was 46.6 lbs. We is now 44.8.
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Old 01-29-2012, 11:30 AM   #45
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Re: UPDATE:1/28 Almost 7 years of chronic illness, finally getting help! Many updates

Do you have a good primary doctor yet? One is coordinating all the different specialist visits and getting copies of all the labs? (IE forwarding the labs that one specialist did to the other specialists?) Often they don't talk to each other and don't have complete records.
Sometimes it is up to the parents to ask for copies of all lab work and then carry a folder with all that to each appointment. Then when the nurse comes in to get vitals ... Say "do you have a copy of these recent labs from DR. XYZ? Here can you make a copy for the chart and give me back my copy please?"

**I TOTALLY understand what it is like when they look at you and tell you "this is normal childhood stuff... they will outgrow it". I was told that with my daughter. I swear for like 3 weeks after she was born, all I heard was... she is perfect and you are crazy! I switch doctors and even there pretty much had to demand to see a specialist. (Sadly I have a PPO so I don't need a referal for my insurance but the waiting list is months long if you don't have a referal) I don't care if they think I'm the craziest loony bird ever... as long as my daughter gets treatment! (Everything I've said and they dismissed was confirmed by tests! So obviously they are starting to listen to me! )
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Old 01-29-2012, 11:51 AM   #46
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Re: UPDATE:1/28 Almost 7 years of chronic illness, finally getting help! Many updates

I really understand the frustration hun. :huggs:

We finally switched pcp's. I'm currently waiting untill they get all of the records from all of the specialists before we go for our first visit. He is highly recomended by all of my mil's co-workers as well as the patients at the hospital. I have high hopes.

That is an excelent!!!! idea about getting coppies of the labs/tests to take to all of our apts. I will for sure be doing this, thanks!! If I were a tougher moma, I would sooo take all of these reports to our old pcp and show her how right on I was!

Ya know, even with all the results and see'ing Cayden miss all this school, my mil still thinks he's not so sick and says he'll grow out of it! I'm fed up with hearing it, plain and simple. I'm lible to scream next time someone says it!

Seriosly, many Dr.'s and almost 7 years later, Cayden is only worse. Do they just have so many patients that they missed it? Did they think I was a nut? There is no excuse for missing all of this. It doesn't take that long to order and set up a refural. It hurts that we could have resolved much of this long ago. It just hurts that he has had to suffer this long. I'm really feeling bad now. I should have demanded a different refural long ago. The only other one i was able to get was to the ent. That was a waste of time. "I don't see any abnormal structures, but i believe that there is one and this is the problem." What an idiot! he was talking about the cronic croupy episodes, constant resp distress, wheezing, and stridor. Errrr.

Anyhow, thank you so much for the reply. I will deff be taking your advice!
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Old 02-02-2012, 05:09 PM   #47
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Re: UPDATE:2/2 Almost 7 years of chronic illness, finally getting help! Many updates!

I recieved the news on the hematology apt today. Every thing was normal except the thrombin time. They retested it 3 times to be sure. The results were abnormal. The hematologist will be looking into his meds just in case, but they contain no blood thinners. They plan to do many additional test when we go back. All signs are kinda pointing towards a rare bleeding disorder.

So if these next tests confirm a bleeding disorder, he will have:
A rare bleeding disorder
ulcers
esophageal errosion (as well as in the stomach)
GERD
Asthma (resp issues are now under controll)
Weight loss/unable to gain/slow growth/super skiny.
Out of this world constant hunder, eats well over 3000 cal a day.
Lactose intolerance.
Maltose intolerance.
Unknown reasion for constant diarrhea/constipation.
Abdominal pain, frequent.
Nausia with bad vomiting attacks.

When will this end?

Please add my little buddy to your prayer lists!
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Old 02-02-2012, 05:29 PM   #48
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Re: UPDATE:2/2 Almost 7 years of chronic illness, finally getting help! Many updates!

Quote:
Originally Posted by sarahannecloud9 View Post
I recieved the news on the hematology apt today. Every thing was normal except the thrombin time. They retested it 3 times to be sure. The results were abnormal. The hematologist will be looking into his meds just in case, but they contain no blood thinners. They plan to do many additional test when we go back. All signs are kinda pointing towards a rare bleeding disorder.

So if these next tests confirm a bleeding disorder, he will have:
A rare bleeding disorder
ulcers
esophageal errosion (as well as in the stomach)
GERD
Asthma (resp issues are now under controll)
Weight loss/unable to gain/slow growth/super skiny.
Out of this world constant hunder, eats well over 3000 cal a day.
Lactose intolerance.
Maltose intolerance.
Unknown reasion for constant diarrhea/constipation.
Abdominal pain, frequent.
Nausia with bad vomiting attacks.

When will this end?

Please add my little buddy to your prayer lists!
I'm praying for him Sarah! Are the doctors able to tell you if it is a bleeding disorder is it treatable?
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Old 02-02-2012, 05:59 PM   #49
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Re: UPDATE:2/2 Almost 7 years of chronic illness, finally getting help! Many updates!

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I'm praying for him Sarah! Are the doctors able to tell you if it is a bleeding disorder is it treatable?
They re-ran the tests 3 times, but want to do it again to be sure. There are more specific disorders that fall under this one test that was abnormal. Not not sure on the specific bleeding disorder it may be (if it's verified). Some of them have treatments. There is plasma transplanting. I also found info on the liver, but am unclear about it. The thrombin is formed by fibrogen. The fibrogen is formed in the liver. The only treatment for sure I found was the plasma. It's just too early to know yet. DH keeps telling me to calm down untill we retest. I'm just scared to death right now. Ignorance "WAS" bliss.

The Lord said cleve to your husband. I have done that, but also the boys. I know it's too soon to be upset, but how often does the DR. herself call you? Perhaps she's just a great DR!

I thought i was ready for the answers, but they just keep piling up and they arn't connected it what get's me!!

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Old 02-02-2012, 10:55 PM   #50
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Re: UPDATE:2/2 Almost 7 years of chronic illness, finally getting help! Many updates!

momma and many prayers coming
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