posted
My 7 year old nephew had numerous mini bullseye rashes on his abdomen last month. He was put on 4 weeks of ceroxifime (oral). On day 25 he had a sleepover and missed the meds. On day 26 he got stomach flu- so no meds again.
On day 29 (no meds for 4 days) he had a seizure. He was hospitalized, tested, no dx, released. The next day he had a few more absence seizures. His parents are lyme literate. Our family has already been hit HARD. My daughter, his 7 year old cousin, was treated for lyme and babs for 2 years. Their pedi will consult with the #1 lyme pediatrician and he will get on the waiting list.
We are so upset. Half of the children in our family have unquestioned positive lyme diagnoses. What kind of world do we live in that all of our children must be inflicted with this horror and a lifetime of medical issues?
[ 12-28-2009, 08:30 AM: Message edited by: catskillmamala ]
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
up for seizure help
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
catskillmamala I am so sorry your family is going
thru this. If he continues to get worse I would not
hesitate to take him somewhere else. Glad your on
the list. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
So sorry that you and your family are impacted so heavily by this disease. The children certainly deserve the best of treatment and health.
Seeing the best #1 pediatrician will help turn things around, and give you all support. Does the current pedi follow the advice of the #1 dr and pass it along to the kids?
May health and well being return to you all.
Posts: 873 | From WA | Registered: Dec 2005
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Shosty
Unregistered
posted
Is your nephew being put on anti-convulsants?
Could the seizures have been related to the stomach flu?
It's funny, but I would have expected seizures ON the antibiotics.
Was the first seizure, the one that got him hospitalized, an absence seizure?
It is possible that this was a migraine: has anyone suggested that? Often they start with tummy problems, then progress to some pretty strange neurological experiences. Did he get a headache at all? (And some migraines have no headaches).
posted
Here's the update: he is now experiencing classic lyme symptoms including fever of 102, myalgias, joint pain and crushing fatigue. His mother told me that his head was on the table as he waited for dinner. The good think is that no one is dismissing the seizure activity as non-lyme related. The bad news is he feels very bad.
No more visible seizure activity has occurred in the last few days.
He has an EEG and MRI scheduled over the next two days. The local hospital called to say there are 8 positive bands on the western blot and the local pedi thinks its lyme related.
So now the questions are: 1) should he do another round of orals or do IV? He already just finished a 25 day course of abx.
2) are there coinfections we're missing. The pedi did test for co's but . . . not babs and the labs are standards- not frye or igenex.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think you will need a LLMD to treat to prevent
the seizures and reactions that can come with
antibiotics and borrelia. My LLMD says there is no
reason to kill yourself taking antibiotics. Prayers
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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