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cheryl
United Kingdom
3 Posts |
 Posted - 07/26/2008 : 23:43:20
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HI guys
You are all giving me some very interesting information. I thought you might like to be better informed regarding my daughter. Yes I am very educated regarding her condition. Brooke was born with Kaposiform Hemangioendothelioma, associated with Kasbach Merrit SyndromE which Brooke also had. What this means is that she had a very large vascular growth down her throat and into her right ear. This growth (hemangioma) caused the Kasbach Merrit Syndrome. This is when the growth is so large that blood flowing through it filters out the platelets in the blood and causes her platelets to die and drop down to nothing and risk bleeding to death.
Brookes treatment was very tough, at 2 weeks old she was started on steriod and then when this was not working effectively enough at 7 weeks old she started on chemotherapy as well as steriod. This treatment has continued with steriod given 3 times day and weekly chemotheraphy until she was 10th months old. We were then able to drop the chemo and continue with steriod.
As well as oral steriod Brooke has recieved more very high doses of intravenous steriod injection. These does were far to high for her size and weight, but very necessary to save her life.
So as you can see I am very aware of my Daughters condition particulary as she is only one on 6 in the uk with this condition in the facial region.
In answer to your question that her consultant will help with my MMR decision. No he will not he has made it very clear that MMR is the only choice and will not even discuss with me my right to choose. So once again I am back to educating myself and making my own very educated choice.
I am very grateful for all your help and please continue to help me become more educated so that I can continue to make the right choices for my daughter. I am her voice and will continue to make myself heard by educating myself and being able to stand up and decide what I feel is the best and safest choice for her. We have come this far and I WILL NOT LET HER DOWN NOW.
Cheryl & Brooke
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Seonaid
United Kingdom
1177 Posts |
Posted - 07/27/2008 : 01:03:33
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I am so sorry to hear about your daughter. It sounds as if Brooke has been through a very hard time indeed - God bless her - poor lamb.
For once I don't know what to say.
I am just a mother of a vaccine damaged son, but my thoughts are that her system will have been weakened after such an onslaught of treatments during her young life, and that if you feel the best way forward for her is to go ahead with vaccination, then best to opt for single vaccines. You clearly are very unsure about use of multiple vaccines where Brooke is concerned, and I think you are right to question the opinion of the consultant on this occasion. There are so many good doctors out there who still have a blind unquestioning faith in vaccination it is really confusing for parents when making such a decision.
I'm not much help I'm afraid. Maybe others will have concrete info they can give you. Good luck.
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allison
United Kingdom
171 Posts |
Posted - 07/27/2008 : 10:02:22
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Cheryl. I was very moved by your story and moreso by your determination to investigate beforehand. Oh God I wish I'd done that - because my son had no apparent problems to serve as an indication to take an extremely cautious view. I just innocently went ahead following 'Dept. of Health immunisation advice' which purely serves as a blanket for all, denying my own son's individual needs and have had to live with his severe autism ever since. I have written my account on the "parents" stories on the JABS homepage. I will never do it again!
Trust YOUR instincts. You're already proving to be a wonderful mother. Hindsight can allow acres of time for thought believe me, best to be equipped beforehand. Presence of mind under this sort of incredible pressure is remarkable. Well done.
I am sure rushed consultants who haven't the time to investigate this themselves are following recommended guidelines only. Ultimately, they will be equally as pleased as you in not to have to add anymore treatments to the already intense regime your child is encountering. Stand firm and apply wise old 'parent power' where needed, your baby counts on you. Take your time and read read read, JABS is an excellent place to start. Good luck. |
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allison
United Kingdom
171 Posts |
Posted - 07/27/2008 : 10:17:50
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Cheryl. Another place for information I can recommend is Dr Jayne Donegans' website www.jayne-donegan.co.uk
She decided to look into the safety of vaccines for herself as a medic to be able to give the 'right' advice to her patients. Her shocking story led to General Medical Council charges being brought which she fought in the most courageous way. It's an encounter any brave mum should find empowering to their own circumstances.
She won! She WAS RIGHT! |
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jackie
United Kingdom
101 Posts |
Posted - 07/28/2008 : 10:22:01
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Cheryl: Thank you for sharing your details with us, it can't have been easy to re-think everything that has happened to your little girl.
I am sorry that your consultant has taken such a hard line over the issue of MMR or nothing. I hoped he would be more sympathetic given the nature of Brooke's diffficulties. I have to repeat your consultant could prescribe single dose vaccines on a named patient basis and this could be done on the NHS but he's obviously determined to stick to the DoH guidelines. So, unfortunately, if you want to consider separate doses you will have to pay privately - as if you don't have enough to deal with at the moment.
As you know, we cannot give medical advice, however, as you have been kind enough to share more information with us I would like to suggest a few extra points for careful consideration.
With regard to MMR vaccine we have details of Merck's MMR information available here: http://www.jabs.org.uk/pages/mmrvaccine.asp. This could serve as a guideline but I suggest you ask your doctor for the latest MMR drug product sheet. (It's the leaflet tucked up inside the vaccine box.) Merck gives a great deal of information about MMR including:
'Contraindications'
'....Anaphylactic or anaphylactoid reactions to neomycin (each dose of reconstituted vaccine contains approximately 25 mcg of neomycin). Febrile respiratory illness or other active febrile infection. However, the ACIP has recommended that all vaccines can be administered to persons with minor illnesses such as diarrhea, mild upper respiratory infection with or without low-grade fever, or other low-grade febrile illness.41 Patients receiving immunosuppressive therapy. This contraindication does not apply to patients who are receiving corticosteroids as replacement therapy, e.g., for Addison's disease. Individuals with blood dyscrasias, leukemia, lymphomas of any type, or other malignant neoplasms affecting the bone marrow or lymphatic systems. Primary and acquired immunodeficiency states, including patients who are immunosuppressed in association with AIDS or other clinical manifestations of infection with human immunodeficiency viruses;41-43 cellular immune deficiencies; and hypogammaglobulinemic and dysgammaglobulinemic states. Measles inclusion body encephalitis 60 (MIBE), pneumonitis 61 and death as a direct consequence of disseminated measles vaccine virus infection have been reported in immunocompromised individuals inadvertently vaccinated with measles-containing vaccine. Individuals with a family history of congenital or hereditary immunodeficiency, until the immune competence of the potential vaccine recipient is demonstrated....'
'Warnings'
One of those listed is:
'...Thrombocytopenia
Individuals with current thrombocytopenia may develop more severe thrombocytopenia following vaccination. In addition, individuals who experienced thrombocytopenia with the first dose of M-M-R II (or its component vaccines) may develop thrombocytopenia with repeat doses. Serologic status may be evaluated to determine whether or not additional doses of vaccine are needed. The potential risk to benefit ratio should be carefully evaluated before considering vaccination in such cases (see ADVERSE REACTIONS)....'
I wanted to draw your attention particularly to those two points but please study the information completely. Many of the details would equally apply to the single dose vaccines. The private doctors could provide the product sheets for any vaccine you would like to consider.
I don't know what discipline your daughter's consultant specialises in but you might find it useful to ask your GP to arrange a consultation with a haemotologist and/or immunologist so you could discuss the information in relation to your daughter's health and history.
I can understand that the consultant may be concerned that your daughter might be more vulnerable to any infection that comes along -measles, mumps, rubella or even the common cold, given her current circumstances, however, the drug companies own information deserves careful consideration too.
Also, I feel I have to say as one mum to another, prior to the MMR being given to my son when he was thirteen months old I, like many of JABS parents, did not have any reason to be concerned about my son's health and his serious reaction 10 days after the vaccine was given led to his brain damage. He is 16 years old, has the mental age of a 14 month old, uncontrolled epilepsy and cannot do anything for himself, he can't even stand unaided and is wheelchair bound. If he couldn't cope with the combination how can your consultant be sure that your little girl will?
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MMR/my daughter -latest
