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  <title>The Child Growth Foundation</title>
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  <pubDate>Sat, 04 Feb 2012 17:57:19 +0000</pubDate>
  <lastBuildDate>Fri, 03 Feb 2012 15:52:00 +0000</lastBuildDate>
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   <title>MPHD/GHD : What to do when the PCT says no :(</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=986&amp;PID=5735#5735</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=5">Jenny Child</a><br /><strong>Subject:</strong> What to do when the PCT says no :(<br /><strong>Posted:</strong> 03 Feb 2012 at 3:52pm<br /><br />Hi Michelle<div>This could actually be the PCT at fault rather than GOSH. The PCT are the ones who have to fund the treatment, so I suspect it could be them trying to save money. </div><div>As previously stated, the NICE guidelines clearly state that a child who is GHD is eligible for treatment.&nbsp; </div><div>Out of interest which PCT is it?</div><div>Jenny</div>]]>
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   <pubDate>Fri, 03 Feb 2012 15:52:00 +0000</pubDate>
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   <title>MPHD/GHD : What to do when the PCT says no :(</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=986&amp;PID=5734#5734</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=457">SteveG</a><br /><strong>Subject:</strong> What to do when the PCT says no :(<br /><strong>Posted:</strong> 03 Feb 2012 at 2:31pm<br /><br />Hi <DIV></DIV><DIV></DIV><DIV></DIV>When I was struggling to get GH treatment many years ago my parents paid for a private consultation with a doctor in Harley Street who, by coincidence (not), happened to be Head of the General Medical Council, or something like that. I had to have all the tests repeated at GOSH just to confirm that I needed the treatment and then miraculously I was prescribed&nbsp;it on the NHS!<DIV>&nbsp;</DIV><DIV>The downside was that this all took time and I lost precious months where I could have been growing. I ended up at 5' 2" which is still short for a male but it could have been worse. </DIV><DIV>&nbsp;</DIV><DIV>Steve G</DIV>]]>
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   <pubDate>Fri, 03 Feb 2012 14:31:29 +0000</pubDate>
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   <title>General growth related topics : Weight loss</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=987&amp;PID=5733#5733</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=1250">mamajoy</a><br /><strong>Subject:</strong> Weight loss<br /><strong>Posted:</strong> 03 Feb 2012 at 6:19am<br /><br />Osteopenia is commonly caused by celiac! If the doctors don't screen for celiac please do insist on it! Even if the celiac tests come back negative you might want to try her on a gluten-free diet!<br /><br />Depending on where you are, you can order the celiac tests I mentioned on-line at ineedlabs. There are some other places as well, but this one has a pretty good reputation I think. They have blood draw locations all over and use labcorp. The celiac tests should only run around $200.<br /><br />It's so hard to deal with doctors sometimes. This is how I've started handling doctor visits. All our doctors have responded really well to this method:<br /><a href="http://theliberatedkitchenpdx.com/basics/making-the-most-of-a-doctor-visit/%20" target="_blank">http://theliberatedkitchenpdx.com/basics/making-the-most-of-a-doctor-visit/</a><br /><br />I'm still waiting for this year's bone age to come back, but last year my daughter was 2.35 years delayed.<br /><br />This week we're going to have the following blood work drawn:<br />complete metabolic panel (screens for growth hormone, liver, and kidney diseases)<br />Zinc, vitamin B6, vitamin B12, magnesium, and iron deficiency tests (she has neurological symptoms)<br />Free T4 (thyroid)<br />TSH (thyroid)<br /><br />then, if the growth hormone is low, she's going to have a growth hormone stimulation test.<br /><br />I imagine some of this blood work would be appropriate for your child as well. I would ask the doctor about it.<br />]]>
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   <pubDate>Fri, 03 Feb 2012 06:19:24 +0000</pubDate>
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   <title>MPHD/GHD : Emergency hydro injection worries</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=998&amp;PID=5732#5732</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=187">Ros Chaplin</a><br /><strong>Subject:</strong> Emergency hydro injection worries<br /><strong>Posted:</strong> 02 Feb 2012 at 10:51pm<br /><br />Hi,<br /><br />I think it would be easier if I explained this on the phone.<br />Please call the Child Growth Foundation tomorrow and I will explain it.<br />For the moment it is easiest to remember that when your child is sick they may bring up the cortisone so they need to be given it by injection and also because  they are ill they will need a higher dose.<br />Look forward to speaking to you.<br /><br />Ros]]>
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   <pubDate>Thu, 02 Feb 2012 22:51:44 +0000</pubDate>
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   <title>MPHD/GHD : Emergency hydro injection worries</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=998&amp;PID=5731#5731</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=1223">Mink_fish</a><br /><strong>Subject:</strong> Emergency hydro injection worries<br /><strong>Posted:</strong> 02 Feb 2012 at 10:42pm<br /><br />Hi, my daughter is 18 months old and has Mphd, she has been growth hormone injections since September with good results so far. My question is about the emergency hydrocortisone injection and when it should be given. Initially we were told to give the injection if our baby was being sick a lot and beginning to show signs of low blood sugar and then get to hosp, however our specialist endocrinologist we see only occasionally has said to give it if she is vomiting a lot regardless of signs of hypoglaceimia, I feel a bit confused to be honest and worried. I always thought that the injection would only be required in an emergency but now have been led to believe it could happen if she just has a sickness bug? We were shown how to give the em injection but it was a long time ago. Has anybody had to give the injection when their child is sick, and could anybody please tell me some signs of low blood sugar.  <img src="http://www.childgrowthfoundation.org/forum/smileys/smiley5.gif" border="0" align="middle" /> ]]>
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   <pubDate>Thu, 02 Feb 2012 22:42:21 +0000</pubDate>
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   <title>MPHD/GHD : What to do when the PCT says no :(</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=986&amp;PID=5730#5730</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=1051">ElizabethR</a><br /><strong>Subject:</strong> What to do when the PCT says no :(<br /><strong>Posted:</strong> 02 Feb 2012 at 1:17pm<br /><br />Hi Michelle.&nbsp; I have not been in your situation so I am not talking from experience, but I was wondering if you are aware of the NICE guidelines on Growth Hormone for children.&nbsp; The Guidance clearly states that human growth hormone (somatropin) is recommended for the treatment of growth failure in children with growth hormone deficiency and that commissioners and providers have a responsibility to implement the guidance.&nbsp; Perhaps referring to the Guidance might just help you in your fight for treatment for your son.&nbsp; The website is at http://www.nice.org.uk/guidance/TA188.&nbsp; Good luck, Elizabeth.<br>]]>
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   <pubDate>Thu, 02 Feb 2012 13:17:30 +0000</pubDate>
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   <title>MPHD/GHD : What to do when the PCT says no :(</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=986&amp;PID=5726#5726</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=970">MiniMom</a><br /><strong>Subject:</strong> What to do when the PCT says no :(<br /><strong>Posted:</strong> 01 Feb 2012 at 10:21pm<br /><br />Hi Michy06,<br><br>I was so sad to read your story and to hear about your struggle to obtain treatment for your son.&nbsp; My son (aged 16) has been on GH injections for 8 months now, but it was also a fight to get treatment.&nbsp; In our case, we couldn't get the referral to the endo for over 1 year.&nbsp; We lost critical time for treatment, as my son was already beginning puberty at the time of his diagnosis.&nbsp; In the end, I had to pay out of my own pocket (over ?1000 for the initial visit and tests) in order to get the consultant to see my son.&nbsp; The GP would not provide an NHS referral.&nbsp; He didn't understand the urgency and he was just ignorant about the condition. <br><br>Here are some suggestions regarding your situation.&nbsp; First, I completely understand your frustration with GOSH, but given my understanding of the system, your PCT is ultimately to blame for the denial.&nbsp; Of course, there is no excuse for the lack of communication from GOSH about the original denial back in July!&nbsp; <br><br>You should definitely demand a letter of explanation from the PCT as to why treatment is being denied.&nbsp; This is your right under the rules and they must respond within a certain time frame (I believe, within 72 hours.)&nbsp; The explanation for the denial will help you understand how to fight.&nbsp; If your son's GH levels are clearly deficient you have a strong case.&nbsp; If your son's levels are simply 'low' but within the 'normal' range, you may have a very difficult fight.<br><br>If the PCT states that the proper tests have not been performed to confirm the diagnosis, then your blame is correctly placed at GOSH and they should act quickly to perform whatever tests are required by the PCT.&nbsp; <br><br>Do you have the medical details of his deficiency?&nbsp; It's important to understand the exact test results, because GH treatment is not necessarily effective with all patients.&nbsp; It depends on the specifics of the testing.&nbsp; Check the data and if the medical case is clear then by all means gear up for a fight!<br><br>I know (really know!) how frustrating the process can be, but I encourage you to find the strength to keep fighting, especially now while your son still has time to benefit from treatment.&nbsp; I wish I would have pushed harder when my son was younger, but the GP kept telling me he was just slow to start puberty and everything would be fine.&nbsp; <br><br>You are a great mom to keep fighting and there is definitely time for treatment.&nbsp; But fight now, don't wait, because once puberty starts the opportunity for real benefit disappears quickly.&nbsp; Good luck to you!&nbsp; Let us know how you get on...<br><br><br><br><br>]]>
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   <pubDate>Wed, 01 Feb 2012 22:21:30 +0000</pubDate>
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   <title>MPHD/GHD : 14 year old son on Nutropin Pen</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=994&amp;PID=5725#5725</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=970">MiniMom</a><br /><strong>Subject:</strong> 14 year old son on Nutropin Pen<br /><strong>Posted:</strong> 01 Feb 2012 at 9:47pm<br /><br /><><!-- /* Font Definiti&#111;ns */@font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:3 0 0 0 1 0;} /* Style Definiti&#111;ns */p.Ms&#111;normal, li.Ms&#111;normal, div.Ms&#111;normal {mso-style-parent:""; margin:0cm; margin-bottom:.0001pt; mso-paginati&#111;n:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:Cambria; mso-fareast-theme-font:minor-latin; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi; mso-ansi-:EN-US;}@page Secti&#111;n1 {size:595.0pt 842.0pt; margin:72.0pt 90.0pt 72.0pt 90.0pt; mso-er-margin:35.4pt; mso-footer-margin:35.4pt; mso-paper-source:0;}div.Secti&#111;n1 {page:Secti&#111;n1;}--><p ="Ms&#111;normal"><span lang="EN-US">Hi Luvchocolate,<br><br>My son is 16 years old and has been on GH injections since May 2011.&nbsp; Hiscondition was diagnosed at aged 15.4 years old, though his bone age at the timewas only 13.9 years.&nbsp; He was in the middle of puberty at the time he begantreatment.&nbsp; His initial dosage was 1.0 mg/daily and he began to grow at agood rate almost immediately. <span style="mso-spacerun:yes">&nbsp;&nbsp;</span>He hasn?t been measured ?officially? since September,but I would guesstimate that by now (end of January) he has grown about 4inches since treatment began in May.</span></p><p ="Ms&#111;normal"><span lang="EN-US">&nbsp;</span></p><p ="Ms&#111;normal"><span lang="EN-US">When treatment began, my son had a 'growthspurt' in the first few months.&nbsp; He continues to grow but the rate appearsslower now.&nbsp; Like you, I am anxious all the time and have to stop myselffrom fixating about exactly how much he has grown each week.&nbsp;<br><br>At our first check up I asked the consultant to draw blood to review my son?sIGF-1 level to ensure his dosage was high enough.&nbsp; We both agreed that hisIGF-1 should be managed to the top end of the normal range given that he iswell into puberty and has only 12-18 months left for treatment.&nbsp; After theblood test, the endo raise my son's dosage to 1.2mg/daily.&nbsp; We have our nextappointment in early March.<br><br>Even though my son's growth started at a strong pace (measured at 14 cm /yr duringthe Sept. visit), the endo explained that there is no guarantee that this ratewill continue, especially over the full 2 years of his treatment.&nbsp; It nowappears that he will probably not achieve the full 14 cm this year, despite thisprojected rate in September.</span></p><p ="Ms&#111;normal"><span lang="EN-US">&nbsp;</span></p><p ="Ms&#111;normal"><span lang="EN-US">I have done a lot of reading on growthhormone treatment.&nbsp; (You can find many articles on the internet.) Whilemost children experience the highest pace of growth in the first year oftreatment, there is another group of children who experience faster growth inthe second year of treatment.&nbsp; Your son may fall into this category.<br><br>My nephew, who is now 22 years old, also underwent GH therapy.&nbsp; He grew ata steady rate of 4 inches per year for each year he was on the injections,regardless of his pubertal development.&nbsp; In other words, he neverexperienced a 'pubertal growth spurt'.&nbsp; <br><br>Each child's experience is unique so it is very hard to predict what theresponse will be for any specific case.&nbsp; My recommendation is to make sureyour endo monitors your son's IGF-1 level so that his dosage is maintained atthe right level.<br><br>I wish you and your son all the best.&nbsp; I relate completely to how you feeland happy to ?obsess? with you at any time!<span style="mso-spacerun:yes">&nbsp; </span>Feel free to write again, if you feel you need support.</span></p>]]>
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   <pubDate>Wed, 01 Feb 2012 21:47:38 +0000</pubDate>
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   <title>MPHD/GHD : 14 year old son on Nutropin Pen</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=994&amp;PID=5724#5724</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=1252">luvchocolate</a><br /><strong>Subject:</strong> 14 year old son on Nutropin Pen<br /><strong>Posted:</strong> 01 Feb 2012 at 6:44pm<br /><br />My son has been takin Nutropin since June 2011. It's been 7 months and He has grown, but seems still far behind.  We have 5 more months till a year and I'm holding on to the claim that a child should grow 3-4 inches in the first year.  He is 14 and in the middle of puberty, he is getting 1.7 everyday of the week. I have such high expectations and sometimes I want to wake up and hoping my son grew 5 inches overnight. My question is did anyone son go through his growth spurt during the hgh injections? Is the growth spurt different than the hgh growth. Thank you]]>
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   <pubDate>Wed, 01 Feb 2012 18:44:21 +0000</pubDate>
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   <title>General growth related topics : Weight loss</title>
   <link>http://www.childgrowthfoundation.org/forum/forum_posts.asp?TID=987&amp;PID=5723#5723</link>
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    <![CDATA[<strong>Author:</strong> <a href="http://www.childgrowthfoundation.org/forum/member_profile.asp?PF=1051">ElizabethR</a><br /><strong>Subject:</strong> Weight loss<br /><strong>Posted:</strong> 31 Jan 2012 at 2:03pm<br /><br />Thanks for that, mamajoy.&nbsp; My daughters bone age is delayed by 2 yrs and 5 months, and the xray also showed signs of osteopenia.&nbsp; The paediatrician seemed unconcerned about this but at least she is getting all the tests, although it seems to be taking a very long time.&nbsp; It is the waiting that is the most difficult thing for my daughter and for me.&nbsp; I phoned the hospital yesterday to find out why we hadn't had a date for the tests yet, to be told that the clerical staff hadn't even gone through the doctors notes from the clinic, which was ten days ago, so no referral has been done.&nbsp; I really got upset and cross on the phone which is not the right way to deal with it I know, but I am so worried and meanwhile she probably continues to lose weight.<br><br>I'm not sure exactly which blood tests they will do, I think it depends on the lab but no doubt we will find out when they do it.<br><br>Thanks again.<br>]]>
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   <pubDate>Tue, 31 Jan 2012 14:03:51 +0000</pubDate>
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