I am so sorry.
It seems like more and more kids are being DX and at younger ages.
So very difficult for all involved.
I'm fairly new to the MS world and am still trying to find out all I can.
It sounds like your son was actually diagnosed before my daughter was.
Definitely check out the different threads here.
There are folks trying antibiotics, LDN, diet and supplements, and several other treatments, as well as the mainstream meds.
There is a lot of information to sort through but some really knowledgable people posting.
I would suggest that you put your request for help on the main discussion board though.
The kids with MS section of this board is very slow and does not seem to get much response.
I wish I had the answers you're looking for.
One thing that struck me on reading your story was something I read long ago on the use of Tysabri (formerly Antegren or chemical name natalizumab) on a young patient with apparent success during the clinical trials.
Now you likely know that Tysabri has been suspended pending completion of the investigation regarding a possible link with the neurological disease called PML, but your case may merit compassionate use procedures. In any case, it may be something worth discussing with your doctor.
Please let us know how our community can be of help to you.
Presented at the 56th AAN Annual Meeting in San Francisco:
1. [P06.082] Single-Patient Study for the Emergency Use of Natalizumab (Antegran) in the Treatment of Pediatric Multiple Sclerosis
Authors: Shehzad Choudry, Shane Maxwell, Douglas R. Jeffery, Wisnton-Salem, NC, Michael Panzara, Boston, MA, E. Steve Roach, Winston-Salem, NC
Date/Time: Thursday, April 29, 2004 - 3:00 PM
Session Info: Poster: Multiple Sclerosis: Therapeutics I (3:00 PM - 7:00 PM)
[P06.082] Single-Patient Study for the Emergency Use of Natalizumab (Antegran) in the Treatment of Pediatric Multiple Sclerosis Shehzad Choudry, Shane Maxwell, Douglas R. Jeffery, Wisnton-Salem, NC, Michael Panzara, Boston, MA, E. Steve Roach, Winston-Salem, NC
OBJECTIVE: To assess the safety and efficacy of monthly IV doses of natalizumab (Antegran) administered to a 5-year old patient with aggressive multiple sclerosis (MS)
BACKGROUND: Pediatric MS is uncommon and there have been no controlled trials of standard immunomodulatory therapy. The present report describes a 5 year old patient with onset at 18 months treated with natalizumab (Antegran) as rescue therapy. Antegran is a humanized monoclonal IgG4 antibody to the a4 integrin. The patient had an uncomplicated aseptic meningitis at 15 months. Three months later she developed a right hemiparesis and was diagnosed with acute disseminated encephalomyelitis. MRI scan showed multiple white matter lesions. Three months later she suffered a partial transverse myelitis and her MRI scan showed more new lesions. She then developed ataxia and subsequently a bilateral optic neuritis accompanied by further changes on MRI. Oligoclonal bands were negative but extensive evaluation failed to reveal a more likely diagnosis and the diagnosis of MS was later confirmed by brain biopsy. She was started on interferon beta-1a and titrated up to 21 mcg IM twice weekly. Despite treatment she continued to show evidence of aggressive inflammatory disease and required frequent IV methylprednisolone (MP) and eventually cyclophosphamide. She tolerated treatment poorly and progressed despite therapy. She suffered a severe right optic neuritis with complete loss of vision in her right eye and a cervical transverse myelitis. She was treated with IV MP and plasma exchange with only minimal recovery. At this point she remained quadriparetic and blind from her MS. She began treatment with Antegran on an emergency basis approved by the FDA and the IRB.
DESIGN/METHODS: Given her age and weight, she was initially dosed at 3 mg/kg monthly for four months and later at 6 mg/kg to achieve adequate drug serum concentrations. Therapeutic effect was assessed by MRI, relapse frequency, and EDSS. Safety assessments included exams, vital signs, adverse event monitoring, and laboratories as well as monitoring pharmacokinetics.
RESULTS: Following 29 weeks of therapy she has continued to improve clinically and is now fully ambulatory. Vision remains severely impaired with only partial recovery of vision in her right eye. MRI scans have shown a marked reduction in gadolinium enhancement and in new lesion formation with minimal disease activity. She developed an apparent IFN related hepatitis resulting in the cessation of IFN therapy. No elevation of liver function tests or other drug related adverse events has been apparent on Antegran alone.
CONCLUSIONS: The use of Antegran has been safe and effective for 29 weeks in a five year old patient with aggressive MS who failed to respond to standard immunomodulating therapy.
Supported by: Biogen, Idec, and Elan Pharmaceuticals.
Category - MS and Related Diseases
SubCategory - Therapeutics Thursday, April 29, 2004 3:00 PM
Dreadful news I'm so sorry to hear it.
Campath 1-H is a very powerful immunosuppressant which has been shown to stop attacks in adults. Your neurologist should know about it (manufacturer used to be Ilex Oncology) but your neuro could contact Dr Alasdair Coles at Addenbrookes Hospital, Cambridge, England. Given this terrible situation I don't think safety issues are a factor.
Thinking of you
First of all al lot of strength with the situation of your son.
My neurological complaints started about 10 years ago and have been going on since then with ups and downs. My symptoms were pains, pins an needles sensation in feet and limbs, slowly diminuishing strength in limbs, sometimes uncontrollable muscle contractions, pains and electroshock sensations in my back, fatique, concentration problems, ….. A lot of these things are seen with MS, also there has been another case of MS in the family, so personally I suspected to have MS, but a scan, taken several years ago did not officialise it. There is no official diagnosis for me at this point.
As many people in my situation, one tries a lot of free-available products (Vit B,D, Fish oil, Magnesium, …) to see if the situation might improve, but it didn’t really. I also follow the articles on neurology. After reading an article about a very positive test with luteolin (a bioflavanoid and natural anti-oxidant found in some vegetables, mainly celery) in animal MS, I started taking a product containing luteolin (I only found one product sold as food supplement under the name Lutimax 100 mg, tablets to suck in the mouth), and for my personal condition it gave and still gives very good results. After a few weeks, my neurological complains started diminishing and I am feeling a lot better and stronger now. Also feeling better, I sometimes forget to take the tablets, and soonly I notice symptoms coming back, so for me this anti-oxydant seems to do a lot of good. Of course I am interested to hear if there are other people using Lutimax and whether they have similar results.
I suggest talking it through with your doctor as your sons condition is very different, but the producers of Lutimax claim that it is a natural product without side-effects.
Here the extract of the article of the effect of luteolin in animal MS.
Flavonoids Influence Monocytic GTPase Activity and Are Protective in Experimental Allergic Encephalitis
Jerome J.A. Hendriks1, Jacqueline Alblas1, Susanne M.A. van der Pol1, Eric A.F. van Tol2, Christine D. Dijkstra1, and Helga E. de Vries1
1 Department of Molecular Cell Biology and Immunology, Vrije Universiteit Medical Center (VUMC), 1007 MB Amsterdam, Netherlands
2 Biomedical Research Department, Numico Research B.V., 6704 PH Wageningen, Netherlands
In the chronic disabling disease multiple sclerosis (MS), migration of monocytes across the blood-brain barrier is a crucial step in the formation of new lesions in the central nervous system (CNS). Infiltrating monocyte-derived macrophages secrete inflammatory mediators such as oxygen radicals, which contribute to axonal demyelination and damage, resulting in neurological deficits. Flavonoids are compounds occurring naturally in food, which scavenge oxygen radicals and have antiinflammatory properties. To investigate whether they might suppress clinical symptoms in MS, we treated rats sensitized for acute and chronic experimental allergic encephalomyelitis, an experimental model of MS, with flavonoids. We demonstrated that the flavonoid luteolin substantially suppressed clinical symptoms and prevented relapse when administered either before or after disease onset. Luteolin treatment resulted in reduced inflammation and axonal damage in the CNS by preventing monocyte migration across the brain endothelium. Luteolin influenced migration by modulating the activity of Rho GTPases, signal transducers involved in transendothelial migration. Oral administration of luteolin also significantly reduced clinical symptoms.
I am so saddned that your family and son are going throught something so devistating. I am 36yo and began have symptoms of Ms since june of 2005. Sadly enough my 12 yo daughter bagan having symptoms too in Feb. of 2007. I have not been able to find a neurologist worthy of caring for her. I am in the process of making arangements to go to Stoney Brook, in long island to see Dr. Krupp who specializes in pediatric Ms. I will be happy to share any information I receive there. My prayers are with you. Lisa
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the dr.'s may be well meaning but there can still be error. if he was checked for lymes disease keep in mind that a good infectious disease dr. is crucial. you might consider takeing him to a good upper cervical chiro.
here is a utube that explains b12 "pernicious enemia" better than most i've seen or read. i hope you take the time to watch and listen carefully all the way through.
never give up or quit searching. a lot of the work is on you.
the best to you and your son.