Hi Adele,
I would like you to consider contacting the school board and having them send a teacher to YOU (3 days a week). . I did that when my daughter broke her leg and couldnt go to school easily. It just seems they should work themselves into Bae's schedule not her fit into theirs.. It would be so much easier on her (if you can). Good luck Hon.
Hugs,
Ramona

Mast can and does create problems/lesions within the bones that being either osteoprosis or that of osteopenea.   It will also cause degeneration of the discs as well as spontaneous fractures.   Her bone pain could definitely telling a story here and it needs attention.  

Since she's young, Adele, I heartily recommend increasing her dairly intake.  If she does indeed have SM, then her bones may be definitely affected by this.  If osteoprosis is seen to be happening, then your doctor needs Dr. Escribano's help because of the fact that children need extra calcium for their growing needs, but in a case like her, I would think shé'd have to go over what a normal child's daily requirement.  I'm sure, however, that your doctor will work this out with you and Dr. Escribano.  But I think that with all the pain she's complaining about, it's a very valid area to investigate just to make sure she's okay.  Not all of us have these issues, so even though there may be some pain and discomfort, it doesn't always indicate damage.   Perhaps it's just activity of the mediator release.   You see, this happens too for histamine has been found to go directly into the nerve receptors and affect them, so by blocking them, you help to improve on the pain situation.

Talk with the pharmacyst about Ketotifen!!   We call it cetotifeno, but that's what it's called in the romance languages.  Definitely check this out, for it's way cheaper that Gastrocrom!!!

Keep up the good work Adele in pushing for those answers!!!   keep talking with Dr. Escribano!  He's truly wonderful and now that he's working with your doctors, you can RELAX for he'll keep involved!!

Hugs!
Lisa

Hi Adele ,

I am not going to add more to what lisa or Joan have advised other than to give you my experience .

I was on very very large doses of steriods for a year , while the doctors sorted themselves out I was very under medicated and steriods were my rescue plan . With this came the risk of osteoprosis / osteopenia . So I was sent for a dexxa scan - all ok . How ? The only thing I can think of is the large volumes of milk I had been drinking . I was diabetic but not diagnosed so I was pouring pints of milk down , 4 a day .

You don't need to go this far !!!!!!!!!!!!! It was all I could drink apart from water , as I was reacting to all fruit juices both fresh and from concentrate . From concentrate drinks are no my naughty list as they contain sulphites in the concentrate , often not labeled . They also love putting sulphur dioxide gas in the tops of the packages to keep them fresh . if I inhale this it is a straight to A&E for me ( with paramedics ) with 2 Epipens in quick succession .

With careful mangement of foods I now aviod the majority of these situations My partner has a naughty box and drawer in the fridge for his things . I can't even put a lid back on a jar of , vinegar and sulphite filled mustard , without flushing and coughing . Mustard itself is lovely . Its just all the junk in it .

Yeah , all my doctors were shocked at how I had avoided osteoprosis / osteopenia . I will need a repeat dexxa scan in a year to check this has remained so ,

My bone pain is consonantly present . But it fluctuates , on days when it is really bad I am pale , shaky and can't type or hold a pen . The pain comes through my analgesia and is worse in my long bones , thigh / upper arms and hips and shoulders .  I am interested in what Lisa said and will raise this with my doctors . I have had a full back survey by MRI as central lower back pain has been with me since this began , getting worse - unil decant analgesia came my way . I was in constant teeth gritting pain , esp in my ribs and lower back , unable to take a deep breath in or stretch round to the side to do normal jobs . . managing an hours sleep at a time .I can point to the spot where I think I have active mast cells . It has remained the same since august 08 . Now I am like this in the morning before my pills start working , on very bowel active swollen days and when my bone pain is very bad . I am often dizzy as well and can't sit forward as my abdo muscles shake and I am jiddery . So i stay in bed until this passes . Compliment sub chamicals and prostoglandins I feel are responsible for the shaky muscles .

I have associated some of my limb pain and back pain to swelling muscles / internal organs  , which holds , but these pains are deep set and not crampy / sharp , as muscle pain can be .

I am also interested in lisa saying histamine directly affects nerves , it is known as a neurotransmitter ( chemical at nerve endings between 2 endings which conduct the signal ) . I have hald back from any drugs for neuropathic pain as I had problems with duloxitine . Over time I ahve discovered here that messing with serotonin , even if it is low . I don't know mine as yet , is unadvisable . Duloxitine is a sertonin affecting drug . I can't take the new version of gabapentin as it mixes badly with my painkillers .

But , in an ideal world I want to be off these . I will discuss with my doctors a plan to treat my abdomen with gastrocrom and my neuropathic pain ( nerve pain ) with gabapentin , in the hope I can get to the point the causes are treated so the pain will be controlled and allow me to wean from oxycodone .

After i saw Dr Grattan I tried weaning by 5 mg overall a day . My current dose is 15 mg . 15mg am , 5 mg 6pm and 10mg pm . i was crying in pain at 24 hours . So I am staying on this dose for now . I have tried buscopan ( hyocine butylbromide ) but it interacted with my antihistamines and i slept like a baby . I tried loperamide and reacted .

Pain is a huge degranualtor for me , so treating the cause is my best way forward . Does anyone have any papers on pain as a trigger . I know this in me , but I need referring to Pain team again and my GP is loathe to as he doesn't see what benifit I can get . Is buprenorphine considered a safe as its going to be drug , as I recollect using this for patients with neuropathic pain when i was working . Dr g said oxycodone is the best of a bad bunch . Tramadol is on my naughty list , but I don't know if that is for the gelatine and maize or the drug itself . My tounge swelled , so I can't try a different preperation at home .

many hugs
Jose

Hi Ramona ,

I did sweets, but my GP asked me to drop it ;-( . I will do so again and buy the extra doses OTC . It has been working I need the specalist so he can instruct my GP about good doses as he is flailing about in the dark .

Thank you I am so fed up ;-(  of the pain . I have accepted my condition is long term . But , still want the symptoms sorted . Its about not being able to drive . piankillers and pain = not safe . I know that with my shock the dvla ( driver an viechle licencing agency ), may well revoke my license . I am not driving now , but suspect they won't let me once they know .

I am stuck in , housebound unless I have someone to come with me and carers . So I am looking at a mobility  scooter , which will be good , freedom . But...........................................................

Jose

ops that is 2 sisters, no editing here gor my spelling