LAL Solace Patient Community2024-03-29T07:54:21ZHolly Humehttp://lalsolace.ning.com/profile/HollyHumehttp://storage.ning.com/topology/rest/1.0/file/get/66889592?profile=RESIZE_48X48&width=48&height=48&crop=1%3A1http://lalsolace.ning.com/forum/topic/listForContributor?user=1ppytedtxn399&feed=yes&xn_auth=noI wait for the Kanuma treatment for more than 6 month in Hungarytag:lalsolace.ning.com,2017-12-23:6373865:Topic:402022017-12-23T22:47:18.199ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Hello Everyone,</p>
<p>My name is Edina from Hungary. I have a 6 years old son, and he is LAL-D. We didn't start yet get Kanuma, because we wait 6 months ago for a government accept the treatment. My son is the FIRST in my country!! Can somebody know if my country not accept, where i can ask for help? That correct, he have to start as soon as possible? What can i do? My son stomach really get bigger, which mean bigger his liver and his spleen. </p>
<p>Thank you all your…</p>
<p>Hello Everyone,</p>
<p>My name is Edina from Hungary. I have a 6 years old son, and he is LAL-D. We didn't start yet get Kanuma, because we wait 6 months ago for a government accept the treatment. My son is the FIRST in my country!! Can somebody know if my country not accept, where i can ask for help? That correct, he have to start as soon as possible? What can i do? My son stomach really get bigger, which mean bigger his liver and his spleen. </p>
<p>Thank you all your answer.</p>
<p></p>
<p></p> Diet for CESD patientstag:lalsolace.ning.com,2017-10-20:6373865:Topic:392042017-10-20T09:59:40.981ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Hi again!<br/>Could you please share diet details your doctors recommend you to follow? <br/>I will appreciate your replies. <br/>Regards, Tanya</p>
<p>Hi again!<br/>Could you please share diet details your doctors recommend you to follow? <br/>I will appreciate your replies. <br/>Regards, Tanya</p> Please share your knowledge about use of Kanumatag:lalsolace.ning.com,2017-10-20:6373865:Topic:390062017-10-20T09:27:45.000ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Hi everyone!<br></br>My name is Tatyana, I'm from Ukraine. 1.5 years ago my son was diagnosed CESD. Now he is almost six. In our country we were the first diagnosed with this disease, at the moment there are 6 patients in total. <br></br>There are no good specialist in our country. I'm searching everywhere for any additional information about this disease. <br></br>Could anyone tell me about the experience of treatment by Kanuma? What are the results? In what countries is Kanuma used for all patients…</p>
<p>Hi everyone!<br/>My name is Tatyana, I'm from Ukraine. 1.5 years ago my son was diagnosed CESD. Now he is almost six. In our country we were the first diagnosed with this disease, at the moment there are 6 patients in total. <br/>There are no good specialist in our country. I'm searching everywhere for any additional information about this disease. <br/>Could anyone tell me about the experience of treatment by Kanuma? What are the results? In what countries is Kanuma used for all patients with CESD?<br/>I'm looking forward to receiving any news. </p> Pittsburgh, PAtag:lalsolace.ning.com,2017-06-19:6373865:Topic:373032017-06-19T22:15:17.050ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
Anyone here from Pittsburgh and doing treatment at the Children's Hospital?
Anyone here from Pittsburgh and doing treatment at the Children's Hospital? Need help to get diagnosis and test for Adult Onsettag:lalsolace.ning.com,2017-04-28:6373865:Topic:370112017-04-28T03:27:09.236ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Hello</p>
<p>I'm so happy to be here and hope I can get help from someone here.</p>
<p>I am now 47 years old and I will start out saying a bunch of recent tests let to MANY incidental finds</p>
<p>Since I was in 20's I have had genetic cholesterol and since we knew it wasn't diet related,</p>
<p>I was never put on medications. I have been an avid person who works out daily and eats fairly good all of my life.</p>
<p>Since I was told my bad cholesteral was good and my trigylcerides were…</p>
<p>Hello</p>
<p>I'm so happy to be here and hope I can get help from someone here.</p>
<p>I am now 47 years old and I will start out saying a bunch of recent tests let to MANY incidental finds</p>
<p>Since I was in 20's I have had genetic cholesterol and since we knew it wasn't diet related,</p>
<p>I was never put on medications. I have been an avid person who works out daily and eats fairly good all of my life.</p>
<p>Since I was told my bad cholesteral was good and my trigylcerides were always good, it was determined I did not need medicine.</p>
<p>Late 20's early 30s</p>
<p>2 kids 2 C sections after my second I get diagnosed with underactive thyroid(on Synthroid since 2009)</p>
<p>I have been complaining for past few years about abdominal distention and my belly is huge for someone that eats good and works out so much no one can understand. It looks like I'm 6 months pregnant. I was tested for adrenals, glucose tested and everything else came back normal.</p>
<p>So fast forward to June 2016, a abdominal catscan(because of bloating/distention) comes back normal and discovered a nodule on my left lung that was caught accidently since it wasn't a chest scan it was recommended by a pulmonologist to have a chest catscan. </p>
<p>The chest catscan a few weeks later revealed more nodules and a heart issue. I was told to come back in 6 months for a chest catscan with and without contrast to see if any changes to heart and lungs.</p>
<p></p>
<p>In the interim I went to a rhemotologist and was told my Ferritin was a 5.3 and my iron storage was low. My overall hemoglobin was borderline anemic at 11.5. I was told for a women ferritin should be in the 70's. I have been taking liquid iron 3 times a day to supplement since February. As of March 28 My ferritin was a 12 still very low .I went for my 6 month follow up and had a chest catscan with and without contrast this past March. My test revealed in addition to my heart issue it showed leisons on spleen and an adrenal nodule, it was suggested I get a MRI of the abdomen to check the spleen further.</p>
<p>The abdomen MRI with and without contrast on 3/28/17 showed nothing wrong with the spleen(which is confusing to me still)</p>
<p>It then revealed I have an enlarged liver and a small umblical hernia(more things that came back incidentily). I rarely drink so how could my liver be enlarged?</p>
<p></p>
<p>This led me to research more and here I am</p>
<p>I spoke to my endocrinologist today and she will give me a script for the LAL Deficiency blood test (is that what it is even called?)but she said no one she knows will do it, so not sure where to go. Its not listed on the Lab center here.</p>
<p>I'm in Long Island New York</p>
<p>In addition, my endo just started me on cholesteral meds 3 weeks ago because after not being on any meds for 20 years I do not want to walk around with high cholesteral anymore with a heart issue. So I insisted. So we are doing lowest dose every other day.</p>
<p></p>
<p>Please any help/guidance would be appreciated</p>
<p></p>
<p></p>
<p>Thanks so much</p>
<p>Robin</p>
<p></p> Out of state movetag:lalsolace.ning.com,2017-04-05:6373865:Topic:369112017-04-05T04:24:24.140ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
We are currently doing treatment at the Children's Hospital here in TX. But, we are considering a move! A big one! Has anyone moved recently, I need pointers!!
We are currently doing treatment at the Children's Hospital here in TX. But, we are considering a move! A big one! Has anyone moved recently, I need pointers!! How long are your infusions?tag:lalsolace.ning.com,2016-10-12:6373865:Topic:354132016-10-12T21:37:22.327ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.<br />
<br />
Thank you all for your help!!<br />
<br />
Kindest regards,<br />
<br />
Lisa
My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.<br />
<br />
Thank you all for your help!!<br />
<br />
Kindest regards,<br />
<br />
Lisa Searching for informationtag:lalsolace.ning.com,2016-06-05:6373865:Topic:340012016-06-05T20:21:31.397ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
Our son (4 yrs) was diagnosed recently with LAL-D after 2 years of searching for answers. We are in Texas and they want to start treatment with Kanuba. Are there any families in TX that are currently undergoing treatments??
Our son (4 yrs) was diagnosed recently with LAL-D after 2 years of searching for answers. We are in Texas and they want to start treatment with Kanuba. Are there any families in TX that are currently undergoing treatments?? News Storytag:lalsolace.ning.com,2016-05-11:6373865:Topic:337012016-05-11T21:35:10.540ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Our local news did a story on our family, and LAL-D. They did an excellent job explaining the disease. I am very happy with how the story turned out. Feel free to share the story to help get the word out.</p>
<p></p>
<p><a href="http://www.clickondetroit.com/health/4-brothers-fighting-extremely-rare-diseasehttp://" target="_blank">http://www.clickondetroit.com/health/4-brothers-fighting-extremely-rare-diseasehttp://</a></p>
<p>Our local news did a story on our family, and LAL-D. They did an excellent job explaining the disease. I am very happy with how the story turned out. Feel free to share the story to help get the word out.</p>
<p></p>
<p><a href="http://www.clickondetroit.com/health/4-brothers-fighting-extremely-rare-diseasehttp://" target="_blank">http://www.clickondetroit.com/health/4-brothers-fighting-extremely-rare-diseasehttp://</a></p> High liver enzimes with treatmenttag:lalsolace.ning.com,2016-05-05:6373865:Topic:331062016-05-05T11:11:24.543ZHolly Humehttp://lalsolace.ning.com/profile/HollyHume
<p>Hi,</p>
<p>My daughter is receiving 18 months of treatment (Kanuma) as a clinical trial 1mg/Kg.<br/>At the moment, cholesterol (HDL/LDL) seems are normalized but the liver enzymes (ALT/AST) still are high.<br/>Some of you are having this problem?</p>
<p>Thanks,</p>
<p>Sara</p>
<p>Hi,</p>
<p>My daughter is receiving 18 months of treatment (Kanuma) as a clinical trial 1mg/Kg.<br/>At the moment, cholesterol (HDL/LDL) seems are normalized but the liver enzymes (ALT/AST) still are high.<br/>Some of you are having this problem?</p>
<p>Thanks,</p>
<p>Sara</p>