bulldog24

Have 2 pandas kids. 1 severe 1 mild and a 1 year old who while I was pregnant I had Lyme. my 1 year old had her cord etc tested by specialty labs for Lyme and Babesia PCR andit was all neg. I treated as agressively as possible. She is doing awesome. Walking at 9 months running by 10! I vaccinated her by reg schedule up until 6 months according to guidelines. At 6 months found a new pedi and the more I spoke with Lyme/PANDAS docs they said to go easy. so I have only done 1 at a time. So far so good. But she has had swollen tonsils,hoarse voice and sore throat every 6 weeks for awhile. Always culture negative. But my "mommy gut" says something isnt quite right. The doc keeps telling me I amjust more aware and alert for this stuff and these are viruses. Well her 1 year visit is next week. I think my plan is to hold off all vaccines until I can get her in with Dr. B in mid cotober. I have the appointment made. The list of vaccines at the 1 year appt I think is 7 vaccines including the MMR. I also worry about exposing my son who is severe to someone who got a live vaccine. I generally believe that vaccines are usually a good thingin moderation. I dont think vaccinating a 1 year old with 12 different pathogens at once with the hx of autoimmune stuff we have going on. She did have a tick bite memorial day weekend. It was a dog tick but it was attatched. not engorged and she was on amoxi for one of her sore throat episodes for 7 days before the bite and 5 days after the bite roughly. I still have the tick. I just dont think I can test her for lyme because wont she have my antibodies? I suppose if it was a pcr test that would work or if it was an IgM pos test that would mean something. UGH nothing is ever easy. I know that I amholding off these vax but want to hear from other people that I havent lost my mind. She doesnt go to preschool btw

My son is much worse after his infusion a week ago. I was told this is normal and to be expected. It willlast a few weeks

I was told we would get a doseIv both days after infusing

yes my son does this and its OCD

I like lauracidin

Ehrlichia can cause low wbc.

I think that you dont have to worry about this for now. You can always retest in the future.

I agree that Lyme needs to be looked into further

Listen to the mother- I like that

I heard that a code is coming in the ICD 10

Good luck!

I think my 6 yo PANDAS /Lyme kiddo has sleep apnea. He was sleeping in my bed and I noticed his breathing was not regular and had large moments of not breathing at all. Then a few times he made some gasping/choking noises and was really restless all night. I have sleep apnea so I recognized this right away. the pedi said it was a possibility and some kids who have sleep apnea also have adhd due to lack of sleep. he hasnt slept through the night in a long time and also has insomnia. The pedi said that a sleep study is needed. If he has OSA he should get a t&a which should fix the apnea and POSSIBLY help the PANDAS. He said that even though the tonsils might not appear to be enlarged their could be enlargements that can be seen. I am a bit worried about where we are going as they are not known for being PANDAS friendly,infact they are very BAD. But I figure this is a sleep consult and we have a dx from the NIH. PANDAS is NOT in question.

The thought was that since he had been on augmentin so long that even though strep is sensitive to augmentin, some other germs might not be so to give him a brand new abx to see if it would help. Omnicef was great for my lyme and it made sense to me.But it didnt help much.

For myself as a lyme and bart patient, The itching is a neuropathy. It feels like creepy crawlies, burning and itching. I would look into bartonella as well. I dont know what drugs can be used on children with neuropathies but for adults, cymbalta, neuronitin, lyrica etc. Magnesium and b vits can help neuropathies. As far as IVIG, I was told post it was 6 weeks of a roller coaster. A few bad days a few good I found that to be true.

Our pcp just told us to do this: Stop tx dose augmentin, and zith do 10 days of omnicef then restart tx dose augmentin. 15 days steroids and when steroids are done zoloft. havent done the zoloft yet, Might not at all, IVIG scheduled.

a lot of chronic lyme patients test IgM positive even though they have had it a long time. cant really go by the Igm igG with lyme

there is Dr.J in CT. he does it all.

delete

dogs?

http://whitmanhansonexpress.com/whitman-hanson-news/9315-support-group-helps-area-families-find-answers.html

This is common I think I read its a processing problem. I also believe the "whats" can be OCD too My child is LOUD. Also does the what thing all the time

neuropathies?

something is making him flare up. does he have Lyme? sometimes during die off from abx there can be increase in symptoms. Keflex isnt a heavy hitter for lyme though. I still think you should get him swabbed. anyone else sick? Agree with the ibuprofen

I got ocd at around age 10 dx at 18. I have chronic Lyme and lord knows what else

yes I have 2 pandas kids. one worse than the other. also pandas kids are more likely to have parents with ocd too. there is a nih study on this