Mayzoo
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Posts posted by Mayzoo
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Oh, I should also say, been there done that too. Kiddo with autism and other issues as well. My kiddo has been on pills for some time, and during the last episode, she flat began refusing to take them. At one point I was holding her down and forcing her to swallow them. Then she decided she did not like that (it only took one time thank God), so she reluctantly resumed taking them if I forced my hand and stood there while she took them.
See if you can sneak the zith into any food/drink you know he likes and will drink/eat it all. Maybe banana pudding, or shakes? I believe it is a bit fruity in flavor so bear that in mind as you try to disguise it.
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My son is 7 years old has PANDAS and has autism. He has been on 20 months of liquid Azithro since sudden onset PANDAS. He is now refusing to take and I am sure it will be a matter of days before he backslides to the dark days. I need advice.
I have tried to teach him to swallow pills before all efforts failed. He is a difficult child.
I have in the cupboard Keflex and Penn VK will either of these two abx substitute for Azithro until I can get dr. and pharmacy to switch out liquid and try pills? I just picked up a month's worth of liquid azithro.
He has had a lot of gerd lately and food refusal so I know he is having gastro distress. Have any of you ever switched from azithro for awhile due to gastro issues or otherwise with any success? Azithro is his magic medicine. Scared to death after 18 months of progress we are going to lose it all.
Please any advice is appreciated. Thank you.
Keflex is a cephalasporin and penn vk is a penicillin. Zithromax is a macrolide. With all that said, no none of them are in the same class, but you may see results with any of the three.
Have you tried making milk shakes or chocolate milk and putting the zith in without him knowing it? It can be mixed with anything as there are no food restrictions for zithromax.
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I did not see aggression listed in the package insert, but that not rule it out entirely either.
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My kiddo (DD10) quit talking all together for three months in September 2011. When she began talking again, she would only whisper. She says her throat does not hurt and she is currently strep negative. When we began Zithromax in January, she slowly began to use a normal voice again and was completely back to a normal voice by middle of March, until June when she got strep again while still on Zithromax. A few other symptoms returned as well when she got strep. After the strep was eradicated, she immediately had a sinus infection, and now it is gone as well.
She still is whispering. I talked to her last night about starting a new medicine (minocycline) and how it could help her get her big voice back and how happy that would make everyone since we will be able to understand her. I told her again about how she has such important things to say we all want to be able to understand her (expressive delay due to autism/Chiari as it is). She became terrified at the idea of her big voice coming back and started shaking and crying. She became rooted to the spot she was standing in unable to move. Basically an all out anxiety/panic attack at the idea of talking in her big voice again.
Anyone else dealing with this?
I don't have any real advice to give, but just wanted to say my thoughts and prayers are with you. Sometimes we (as parents) try to sit and think of the best way to approach these types of situations and then it all completely backfires. I probably would have approached it the exact same way. I hope that the minocycline works, I bet it will.
Thanks, we are hoping again. Things at least are not as bad as they were a few months ago, so we are still thankful. I wish she could express herself as to what is going on to make her whisper. When she is completely distracted by certain types of play (i. ewater fight in the pool) she uses a normal voice, but the rest the time she whispers. *Shrugs* another one for the mystery files around here.
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My kiddo (DD10) quit talking all together for three months in September 2011. When she began talking again, she would only whisper. She says her throat does not hurt and she is currently strep negative. When we began Zithromax in January, she slowly began to use a normal voice again and was completely back to a normal voice by middle of March, until June when she got strep again while still on Zithromax. A few other symptoms returned as well when she got strep. After the strep was eradicated, she immediately had a sinus infection, and now it is gone as well.
She still is whispering. I talked to her last night about starting a new medicine (minocycline) and how it could help her get her big voice back and how happy that would make everyone since we will be able to understand her. I told her again about how she has such important things to say we all want to be able to understand her (expressive delay due to autism/Chiari as it is). She became terrified at the idea of her big voice coming back and started shaking and crying. She became rooted to the spot she was standing in unable to move. Basically an all out anxiety/panic attack at the idea of talking in her big voice again.
Anyone else dealing with this?
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We invest in our own above ground pool since swimming is about the only "sport" our kiddo is allowed due to other conditions. We buy the Intex above ground. This year we bought the 18' that comes with everything you need but the chlorine tabs for 359.00 through Walmart. They usually last 2-3 years before the sun ruins the sides. Maintenance takes some time, but is not too bad.
The chlorine does not seem to cause any issues, but we are currently in a minor flare due to the whole family being sick and super stressed with a short term business we just started.
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We've seen two pediatric neurologists in Ft. Worth. One not a PANDAS person, the other open to it but not willing to do much at ths point.
I really think I need someone who will be active and on board with her PANDAS dx since that is the major hurdle we are dealing with right now. She has 4 other serious dxs yet PANDAS is really the only one causing an issue right now. Thanks
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We're in Dallas.
We are in Plano. I lead the Dallas area PANDAS support group. I have a list of doctors that families from our group have found helpful. Our daughter currently sees and ENT and an immunologist, both on the list, who have been amazing! If you would like me to e-mail the list, message me your address. If you would like to attend a meeting, you are welcome at any time. Our next meeting is the coming Monday. Let me know if you'd like additional information!
I would love the list. I will send you a pm with my email. Thanks.
Right now we are not able to do any support meetings. Hopefully soon as our schedule will lax up a bit in about two weeks and maybe kiddo will be over this sinus infection and less flaring up by then too. Do the kids come to the meeting or just parents?
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I am looking to compare doctor notes since our pedi just shuffled us off to a neurologist.
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My DD17 now mentors/penpals with younger PANDAS kids. Feel free to have them email her drewashleymaxwell@gmail.com or friend her on FB. there is also a private fb page for Pandas kid to connect with each other.
We may try the e-mail idea; however, we do not use facebook. Kiddo is expressively delayed (autism and three neurological disorders + pandas) and 10 only yrs old. I would help her with the e-mails if we do this obviously, but if it seems like a waste of your DDs time (kiddo not motivated etc...) then I will let your dd know she is unable to right now.
That is great that your DD is willing to share herself in that manner. I imagine my kiddo will not really "get it" as far as a pen pal goes, but many other kids could use a mentor that understands them. Give her a hug for me if you think she would receive it well, otherwise give her kuddos from me please.
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Familiar with that term as kiddos NSG was in Illinois and we made 1-2 trips a year to see him.
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Yeah, my kid could use a friend too, but I am in Central Texas. Wish I could help both our kiddos with this one
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Are these by James Dean or Peg Kehret? Believe it or not, two different series of Pete the Cat...one more cartoonish animated, and the other just animated.
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=%22pete+the+cat%22
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I will go look them up. We deal with frustration from an expressive verbal delay, autism, and now PANDAS. Some days, I am surprised she ever speaks as hard as it must be for her
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I wonder if supplementing calcium/vit D would help with the bone density issue. My kiddo is a girl and is genetically prone to being short anyhoo, so likely the height issue is not a deal breaker (she has always been 5% or less on height even prior to treatment.) Currently she is 10 yrs old and 51" tall, about 52lbs so slight and short already
.A study would be great to know if increased dose increases risk, all SSRIs a risk, etc.....
yes...I wish they would study this more, rather than just leaving us all wondering.
I do supplement with D/calcium as best as I can.
I'm kind of worried. I'm 5'5", dh is 5'10"...so if you average our heights dd should end up to be 5'5" (I think you take away 5" from dh's height for a girl)....I was always a tall kid, but stopped growing by 8th grade.
Dd was 58 1/4 in January (11.5 years) when she 1st got her period (TMI!). I mention it b/c girls aren't supposed to grow much (or for more than 2 years) after they get their period. Since then, she's only grown 1 " (she's now 59 1/4) but that was all in a 1mo. spurt between Jan/feb. She hasn't grown since Feb. Dd is just finishing 6th grade, so I worry that she only has another year to grow (7th grade).
I am 5'7" and hubby is 5'6". His dad is 5'5", his brother is 5'5", his mom is 5'4", his sister is 4'11" and my sister is 5'3", so DD had little chance of ever reaching my height
. Now for the laugh, my sister (5'3") was married to hubby's brother(5'5")--sisters married brothers
--and they had two boys. One is 6' and the other is 5'11. In my family the men are overall taller.I am pretty sure I grew some past the one year mark you mentioned.
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I wonder if supplementing calcium/vit D would help with the bone density issue. My kiddo is a girl and is genetically prone to being short anyhoo, so likely the height issue is not a deal breaker (she has always been 5% or less on height even prior to treatment.) Currently she is 10 yrs old and 51" tall, about 52lbs so slight and short already
.A study would be great to know if increased dose increases risk, all SSRIs a risk, etc.....
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I found this so far:
"Nowadays Desmopressin, a synthetic analogue of Vasopressin, available since 1980, is used. Desmopressin, or dDAVP, is created by de-aminating the cysteine residue (which prolongs its activity) at one end of Vasopressin and replacing L-arginine with D-arginine (which reduces the vasopressor activity). In so doing this renders dDAVP a potent antidiuretic with reduced vasopressor activity and a prolonged half-life of 1.5-3.5 hours compared to about 12 mins for Vasopressin (60). The time to maximal biological activity following ingestion is approximately 60 mins (61). Its rapid onset of action means that it is often recommended where a quick response (such as going on overnight camps, sleepovers etc) is needed."
Will keep digging since yup, we are in this boat too.
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Request his results for the culture from the pedi. Sometimes these things fall through the cracks and even if it is negative, you will have the peace of mind of knowing. He could be fighting off the infection, but his since his body (immune system) is busy fighting, his symptoms are more prevalent than when he is not fighting. Much like your mood is likely completely different when you are under tremendous stress than if you are calm.
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Symptoms can wax and wane for numerous reasons, frequently they are unknown reasons. If he was exposed to another ill child, his body could be fighting that off causing what you see. Go to the doc and get him swabbed (or buy the at home rapid tests) just so you can rule out that one aspect. After that, it usually is just a matter of riding out the episode. Watch for signs of another illness, and if you see none, then just try to ride it out for a few more days. Is he on ibuprofen already? That may take the edge off if he is not.
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I wish we had a religious or personal exemption. In Mississippi and W. Virginia. the only exemptions available are medical. I don't know where to find the list of conditions that apply for the exemption. This is so unbelievable. I am so frustrated with this whole process.
Not sure if anyone posted this or not, but here is a link for your states exemptions policy. It does not specifically state the medical conditions approved. Hopefully a willing doc will know:
" The child's pediatrician, family practitioner or internist licensed in Mississippi must write a letter to the District Health Officer for the child's county of residence, requesting an exemption from specific vaccines for school entry. The letter must contain the child's name and date of birth, the specific vaccine(s) for which the exemption is requested, as well as the medical reason for the exemption request.
The District Health Officer will reply by mail, and supply a Medical Exemption Form 122 for the physician to provide for the child."
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It took almost 6 straight weeks of high dose zithromax to finally get a negative strep test on my daughter. Her hx looks like this:
01-05 asymptomatic + for strep--10 day amox
01-15 + for strep--10 days augmentin
01-24 + for strep--5 days zith
01-29 + for strep decided to try 30 days zith then restest.
02-29 - rapid and culture for strep continue zith still today for now
My efforts may not have helped at all but this is what I did during the 30 days in addition to abx: I was washing sheets every day for her, and every three days for us. Keeping all our toothbrushes in Listerine changed every day. I turned my dishwasher to hot wash and hot dry and used bleach in any hand washed dishes. I turned my washing machine to hot wash, warm rinse. I sprayed all light switches, door knobs, bathroom/kitchen surfaces, her bed and pillow (both vinyl covered), the couch, all counter tops, microwave-stove-oven-fridge surfaces, tv, vcr, dvd, computer mouses, keyboards, monitors, tv remotes etc with lysol every three days. I bought antibacterial soap for our hands during this also even though we do not normally use it.
I was adamant to get kiddo tested after every course of abx and a culture after the first negative rapid. The first time the staff thought I was a bit nuts, after that they agreed it was necessary. She was their first PANDAS case and they had never heard of PANDAS before this.
We home school so her repeat exposure is limited comparatively.
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We had to cancel two MRIs due to continuous strep. To date we have still not had the MRI. We were doing the MRI to see if her other conditions had worsened thus causing all the symptoms we were seeing. Since the PANDAS dx and treatment, I am contemplating if we even need to undergo the MRI.
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Here are some links to sites with recipes:
Slide show with 40 recipes avalilable
Google search that I found all these sites from: https://www.google.com/#q=anti-inflammatory+recipes&hl=en&prmd=imvnse&ei=5kKoT92SN4e62wX008imAg&sqi=2&start=10&sa=N&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&fp=896fd9c23e2637e0&biw=1024&bih=605
List of anti-inflammatory foods:
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Each word you try to search needs to be 4 or more letters long or you will get this error: "One or all of your search keywords were below 4 characters....."
I tried to search OLE, and found I had to search Olive leaf extract instead. Tics should be fine by itself, but tic would not be. You have to be creative
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--and they had two boys. One is 6' and the other is 5'11. In my family the men are overall taller.
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Switching from Liquid Azithromycin to Pills
in PANS / PANDAS (Lyme included)
Posted
Additionally, if you do switched to pills and kiddo cannot swallow them, they can be cut or crushed, but they are bitter.