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child's tingling
Our 8 year old son has been experiencing tingling since October of 2005. It started in his thighs, then spread to his stomach, shoulders, neck, arms, hands, calfs, and ankles. It flairs up in different areas and after a couple of weeks seems to subside. It never completely goes away from any area.
We have seen 5 different doctors and have had an MRI done to look for a pinched nerve, tumor etc. Nothing showed up, except a slight narrowing of the spine. Another doctor did blood tests for Lupis, diabetes and many other disorders.
He takes genortopin for pituitary dwarfism as well as synthroid for hypothyroidism. His endocrynologist tested him and everything was fine. He has taken both of those for 7 years, so he does not think it is a reaction to them, we have not changed the dose in a year. Another neurosurgeon wants to redo the MRI to see if the chiari malformation that showed up when he was little it causing anything. The original MRI did not show a block at the base of the spine.
We are at the end of our rope. Do you have any suggestions on what it could be, or what type of doctor we should see?
When his flair-ups get bad we can control it some-what with tylenol.
We have seen 5 different doctors and have had an MRI done to look for a pinched nerve, tumor etc. Nothing showed up, except a slight narrowing of the spine. Another doctor did blood tests for Lupis, diabetes and many other disorders.
He takes genortopin for pituitary dwarfism as well as synthroid for hypothyroidism. His endocrynologist tested him and everything was fine. He has taken both of those for 7 years, so he does not think it is a reaction to them, we have not changed the dose in a year. Another neurosurgeon wants to redo the MRI to see if the chiari malformation that showed up when he was little it causing anything. The original MRI did not show a block at the base of the spine.
We are at the end of our rope. Do you have any suggestions on what it could be, or what type of doctor we should see?
When his flair-ups get bad we can control it some-what with tylenol.
YEs, I have had a chance to read some of the information. It is very informative. We will continue to pursue testing of lyme disease. Thank you so much for your help. If you have any other advice feel free to contact me with it.
Thanks so much for your advice. I spoke to our pediatrician today and she does not feel it is lyme because of the area in which we live (North Dallas, Texas). She feels like we should go ahead with the plan to see the neurosurgeon for a follow-up MRI. Our son had an MRI when he was a baby to diagnose his pituitary dwarfism and is showed a chirai malformation. His neurologist thinks that there may be a problem with the fluid going through the spinal column due to this malformation. He does not display many of the symptoms, but he feels it is worth looking at. When I talk to him I will suggest the lyme and see what he sais. What do you know about chiari malformation and the problems with fluid flowing in the spinal column that could cause tingling?
Because the tests for Lyme are so inaccurate, you need a physician who is VERY familiar with Lyme, to evaluate your son's symptoms and history.
You can inquire at LymeNet.org about finding a physician.
LymeNet also has lists of support groups for each state, and those groups may be able to advise you.
Tests that look for antibodies to Lyme bacteria are the Western Blot IgG and Western Blot IgM.
There are many different strains of the bacteria, but labs only test for a couple of them.
The sickest people have problems with their immune systems being suppressed, and may not produce many antibodies.
From what I understand, the AMA has instructed physicians to test first using the ELISA. This test misses many people who are positive for Lyme. It's so inaccurate that you may as well flip a coin.
However, the committee that recommended this test to the AMA included physicians who had a financial interest in it. So, whenever a lab uses one of their kits, they benefit financially. Sigh....
Something else that might help your son is to supplement magnesium.
Magnesium glycinate is more easily absorbed by the gut than some of the other forms.
This is the one I take:
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=DRB-00025
You can also do Epsom Salt baths.
If you soak for 20 minutes in Epsom salts, which contain magnesium, your body will absorb magnesium through the skin.
You need to rinse off after this, as it leaves the skin feeling sticky, like when you swim in the ocean.
Hope this helps.
Carol
You can inquire at LymeNet.org about finding a physician.
LymeNet also has lists of support groups for each state, and those groups may be able to advise you.
Tests that look for antibodies to Lyme bacteria are the Western Blot IgG and Western Blot IgM.
There are many different strains of the bacteria, but labs only test for a couple of them.
The sickest people have problems with their immune systems being suppressed, and may not produce many antibodies.
From what I understand, the AMA has instructed physicians to test first using the ELISA. This test misses many people who are positive for Lyme. It's so inaccurate that you may as well flip a coin.
However, the committee that recommended this test to the AMA included physicians who had a financial interest in it. So, whenever a lab uses one of their kits, they benefit financially. Sigh....
Something else that might help your son is to supplement magnesium.
Magnesium glycinate is more easily absorbed by the gut than some of the other forms.
This is the one I take:
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=DRB-00025
You can also do Epsom Salt baths.
If you soak for 20 minutes in Epsom salts, which contain magnesium, your body will absorb magnesium through the skin.
You need to rinse off after this, as it leaves the skin feeling sticky, like when you swim in the ocean.
Hope this helps.
Carol
Thank you so much for your advice. I will follow up on this lead. What doctor would be best to test for lyme? He sees a pediatrician, endocrynologist and a neurologist. Is there a test that I should ask for?
Again, thank you for your help.
Again, thank you for your help.
I don't know much about Chiari, except that it can cause symptoms similar to fibromyalgia, which I "had" for 15 years. My neurologist diagnosed this and refused to order the proper test for Lyme Disease. He ordered the ELISA, which was negative. Several times, in fact.
I wouldn't have known about Lyme Disease unless someone from my fibromyalgia support group had been diagnosed with it, and kept posting articles about it.
We have many members from Texas at LymeNet.org.
The Lone Star tick carries a "Lyme like infection" that is called STARI.
I don't know if your son has Lyme. What I do know is that tingling is a common symptom of it, and if someone has it, Lyme needs to be STRONGLY considered.
Have you had a chance to read any of the info I posted?
Best,
Carol
I wouldn't have known about Lyme Disease unless someone from my fibromyalgia support group had been diagnosed with it, and kept posting articles about it.
We have many members from Texas at LymeNet.org.
The Lone Star tick carries a "Lyme like infection" that is called STARI.
I don't know if your son has Lyme. What I do know is that tingling is a common symptom of it, and if someone has it, Lyme needs to be STRONGLY considered.
Have you had a chance to read any of the info I posted?
Best,
Carol
ehc:
Lyme Disease can cause the tingling that you describe.
The Lyme bacteria invade the nerves, causing various neurological problems.
They deplete the body's cells of magnesium, which is needed for all enzyme processes.
The disease disrupts the HPA axis (hypothalmus - pituitary - adrenal glands).
List of Lyme symptoms:
http://www.canlyme.com/patsymptoms.html
When To Suspect Lyme Disease
http://cassia.org/essay.htm
The testing for Lyme is not very accurate.
Because of this, physicians should make the diagnosis based on the patient's symptoms, which is known as a "clinical diagnosis."
Most physicians are not experienced enough to do this.
They order the tests, and when they come up negative, tell the patient that he doesn't have Lyme.
If your physician is interested, here are some articles for him:
http://www.ilads.org/presentations.html
If you have questions about this, you can ask post a query on the medical questions forum at LymeNet.org:
http://flash.lymenet.org/ubb/ultimatebb.php
I am not a physician, but a retired nurse with Lyme Disease.
I hope you can find some help for your son.
Wishing you the best,
Carol
Lyme Disease can cause the tingling that you describe.
The Lyme bacteria invade the nerves, causing various neurological problems.
They deplete the body's cells of magnesium, which is needed for all enzyme processes.
The disease disrupts the HPA axis (hypothalmus - pituitary - adrenal glands).
List of Lyme symptoms:
http://www.canlyme.com/patsymptoms.html
When To Suspect Lyme Disease
http://cassia.org/essay.htm
The testing for Lyme is not very accurate.
Because of this, physicians should make the diagnosis based on the patient's symptoms, which is known as a "clinical diagnosis."
Most physicians are not experienced enough to do this.
They order the tests, and when they come up negative, tell the patient that he doesn't have Lyme.
If your physician is interested, here are some articles for him:
http://www.ilads.org/presentations.html
If you have questions about this, you can ask post a query on the medical questions forum at LymeNet.org:
http://flash.lymenet.org/ubb/ultimatebb.php
I am not a physician, but a retired nurse with Lyme Disease.
I hope you can find some help for your son.
Wishing you the best,
Carol
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