Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 Interesting - I am waiting to find out about her vaccination tithers. Does unprotected mean your daughter did not produce antibodies to the MMR, DPT etc vaccinations? >>> susan noonan 07/02 9:11 AM >>> Welcome. You will like this group. My daughter is 4. She has neutropenia and on neupogen. Recently she had iGgsubclass testing done. She is low in subclass 1 and 4. Most of her vaccinations tithers came back nonprotected. Her T cells aren't functioning properly t3, T-4 and T-8 are all. low. There is also questioning about her b-cells. We have our first appt with an immulogist today. YEAH!!!!! Maybe we will ge some answers. I dropped off medical records and the receptionist said boy you do have a lot here. Brought x-rays and recordsfrom ped, hem, ENT. She is constantly sick. She has tonsilitis now and stuff dripping in her throat. Waiting for something more to start brewing. Well all have ill children some ore than others. There is lot in this group to share. I felt the same way as you at first. Because isn't as sick as some. But it quickly passed. Everyone one of our children no matter how acutely ill deserves the best. The ore we know the more we can ask about. === and (neutropenic and immune deficent) mom to Evan 6, 4 and Abby Rose (almost 2) _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Dear Debra: Welcome to the list, you will find great support here. Your son sounds very handsome and keeps you on your toes. My daughter was treated by an immunologist for four years straight and he did all the manage care issues and we wish we could do it now but our insurance will not allow it. It sounds like you are recieving wonderful care. annette mom to alissa cvid,asthmatic,chronic sinusitis,ataxia >From: PIDDJS@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Introduction >Date: Mon, 25 Oct 1999 00:42:20 EDT > >Ny name is Debbie , and I'm " 's Mom " . is the youngest of my >four children. He is 3.4yrs old and has X-Linked Severe Combined >Immunodeficiency (SCID), nearly three years post bone marrow transplant >(12/20/96). > > was transplanted under extreme conditions. He was on a ventilator >with >pseudomonas pneumonia and he had Graft-v-Host disease from a blood >transfusion given before he was diagnosed with SCID. Because of the >complications from the blood-transfusion GVHD he suffered brain damage. He >underwent chemotherapy and received a matched sibling donor transplant at >age >6 mos. He then went on to develop Grade 4 (life-threatening) GVHD (from the >transplant) in his gut and liver. He suffered a gastric bleed requiring >multiple blood transfusions and permanent damage to his liver. Today, >is an adorable little guy who has cerebral palsy (fine motor skills 10-12 >months; gross motor skills 12-15 months), cortical vision impairment, >developmental delay, epilepsy, non-verbal (severe oral apraxia/dysarthria), >GERD with hiatal hernia, Gastrostomy tube, chronic hepatitis, Inflammatory >Bowel Disease, failure to thrive (low growth hormone). failed to >develop B-cell function and remains dependant on monthly IVIG. This past >Thursday, at the neurologist, we found out that has basically lost >his >gag reflex. It's very decreased, and his airway protection is minimal. His >neurologist said it's likely because of damage from the two status seizures >he had this past summer. We'll be going to CHOP Seashore House for a >full-workup with a specialized feeding team, and a complete swallow-study >(his third), to see if it's safe for to eat anything by mouth. He's >at >substantial risk for aspiration. > >Like most children with immune deficiencies, has chronic sinusitis. A >sinus CT scan in April this year showed mild scarring/obstruction. is >highly prone to blood infections, which is the primary reason he does not >have a port. He's got poor access, so his infusions are always done at CHOP >(Children's Hospital of Philadelphia) in the Day Medicine Unit, because the >IV team are the only ones who can find a vein in . He attends a >special >preschool program at our local Easter Seals where he receives physical >therapy, occupational therapy, speech therapy, feeding therapy and vision >therapy. > >Oh ..... and by the way, he's got gorgeous blue eyes, the face of an angel >and a smile to die for! He's sweet and funny and enormously loved by his >family. > >One thing I have noticed is that many families here, and on the SCID Group >list, have a pediatrian involved in their child's care. hasn't seen >his >pediatrician since he was 5 months old, nearly three years ago. All of >'s care is managed by his Immunologist, Dr Stuart Starr of CHOP. Does >anyone else do this? > >I know several people on this list, from the SCID Group, but I look forward >to " meeting " everyone. > >Debbie > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Don't know if you're " up " for answering quick questions, but I've been reading that NT can be counter-productive for cancer, nourishing its growth rather which grows more quickly than the immune system can do battle, and that a " starving diet " like macrobiotics is best. Any views on this, you feel you could share? Thanks!Sharon, NH On Thu, Apr 2, 2009 at 10:19 AM, Cilla Whatcott wrote: > Hello all, > > I am a classical homeopath practicing SW of the cities. I am also the > director of complementary and alternative medicine for a newly opened > outpatient facility treating cancer and chronic illnesses with integrated > approaches. (The Kukowski Center for Spiritual and Physical Healing) > > I frequently offer free talks and classes on various natural health topics > and would like to share these with members of the group. One of your members > kindly posted my last class at Chanhassen Library about natural healthcare > for your children. My next free talk will be about dealing with cancer, > chronic illness, or chronic pain. It takes place next week and I will post > the details in a few days. > > Best regards, > Cilla Whatcott, H.D., RHom, CCH > www.familyhomeopathycare.com > www.kukowskicenter.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Hi-- I'm a 30-something married mom of two. One child with special needs, the other with multiple food allergies. We've been growing more and more interested in trad foods over the last 2-3 years. Started with a co-op membership due to the food allergies, transitioned pretty smoothly into a CSA and canning produce and jams for the last year, have been making my own bread for a while from good fresh ingredients, and have just started making my own yogurt (fimjolk), buttermilk and kefir-- the kefir for me, the buttermilk for baking and the yogurt for the kids, who gulp it down like there's no tomorrow. I've also been making LF vegetables (pickles, pickle salad, and pickled vegetables like peppers and radishes) and have been looking into some sustainable practices like root cellaring. Unfortunately, we live in Minneapolis, and cannot keep chickens without 80% of our neighbors (note: not property owners but neighbors) signing a consent for us. We do compost and vermicompost, and garden both indoors and outdoors pretty aggressively, using square inch methods and hydroponics. Our family would like to give real milk a try; we've been buying from Cedar Summit for the last two years, which is good, but we're wondering how much better the real stuff is/tastes. Thanks so much for providing a good resource for us. We'll definitely be heading down to the warehouse to buy a lifetime membership. Any thoughts or comments for me on how to go about obtaining real milk? I'm sort of at a loss as to how to begin. Call the farmer? (Seems rude) Go to the warehouse? ....please help me out here... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 *chanting* Alvin, Alvin, Alvin! http://mnorganiceggs.com/ ... send him an email. :-) I know some folks on here who love Sweetland Farms, too, but I'll leave it to them to change the chant track. ;-) Alvin ROCKS. And his eggs are delish delish DELISH! (not sure about your allergies tho')... I highly suggest you give 'em a go... Just my two cents. :-) Lindsey > Hi-- > > I'm a 30-something married mom of two. One child with special needs, > the other with multiple food allergies. > > We've been growing more and more interested in trad foods over the > last 2-3 years. Started with a co-op membership due to the food > allergies, transitioned pretty smoothly into a CSA and canning > produce and jams for the last year, have been making my own bread > for a while from good fresh ingredients, and have just started > making my own yogurt (fimjolk), buttermilk and kefir-- the kefir for > me, the buttermilk for baking and the yogurt for the kids, who gulp > it down like there's no tomorrow. I've also been making LF > vegetables (pickles, pickle salad, and pickled vegetables like > peppers and radishes) and have been looking into some sustainable > practices like root cellaring. > > Unfortunately, we live in Minneapolis, and cannot keep chickens > without 80% of our neighbors (note: not property owners but > neighbors) signing a consent for us. We do compost and vermicompost, > and garden both indoors and outdoors pretty aggressively, using > square inch methods and hydroponics. > > Our family would like to give real milk a try; we've been buying > from Cedar Summit for the last two years, which is good, but we're > wondering how much better the real stuff is/tastes. > > Thanks so much for providing a good resource for us. We'll > definitely be heading down to the warehouse to buy a lifetime > membership. > > Any thoughts or comments for me on how to go about obtaining real > milk? I'm sort of at a loss as to how to begin. Call the farmer? > (Seems rude) Go to the warehouse? > > ...please help me out here... > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.