Help with 4 year old

[Genevieve81]

Hi everyone, so I've been posting for the last 10 months on the tics and touretts board and decided to come here cause something in my gut as a mommy just still isn't right. So here's my daughters story, back in September she woke up overnight with a head jerking tic and a stomach tic as well with what seemed to be overnight ADHD as well, the week before she had a very bad fall down our stairs. On a Monday then a series of tragic family events as well as started school which brings on a ton of stress. She was complaining of a sore throat so I had my husband take her to the doctors to get it check. He told the doctor about her new tics and ADHD and said not worry also did a strep test and came back negative. Within that week the head tics became so bad I took her back and he sent us to a neuro, they said we have to wait it out. There's also no history of TS or OCD in our families. My daughter in the past 10 months has become a emotional wreak worrying about everything, hating school only wants to stay home and bad separation anxiety ect..... With the tics changing every moth or so. I had the neuro do testing for pandas and her aso tithes came back negative. So I scratched pandas off our list. The ADHD symptoms didn't last long at all maybe two months. She was also very sick in january and February and when she sick she seems to have no tics at all. Also was put on a z pack for a ear infection as soon as she came off the z pack a head jerk started again and the emotions all came back. We're doing all we can as far as supplements, salts baths, we had food sensitivite testing so we have elemeinated it all and nothing is working.

 

I'm sorry this is so long, but wondering if anyone could tell me if maybe it could still be pandas I'm just not sure and very very confused with everything.

Thanks for listening, any help and advice would be greatly appreciated.

[Mayzoo]

My daughter's ASO and anti-Dnase have always been very low, even in the midst and after 60 straight days of positive rapid strep tests. Her immune system is wacky, so it does not respond properly to infection.

 

Also, there is the possibility of it being PANS, which is much like PANDAS, but it is brought on by something other than strep. Read some of the signatures around here. Many have lists of viruses or bacterial infection our children are challenged with.

[LNN]

The sudden onset and the improvement on zith does seem like a good reason to look further into PANS.

 

For Pandas, there are reasons you can have a negative strep culture - did they get a good sample? could strep be in the sinuses or ear canals? There are reasons you can have normal titers - some kids with weaker immune systems don't produce high titers. Also, titers rise and fall - if you test at the wrong time, you can miss the peak and get a "normal" level. At the top of the forum, you'll see an ad for a Pandas e-booklet that might help with the basics.

 

PANS can be triggered by different infections - mycoplasma, lyme disease and other tick-borne diseases, viruses like epstein-barr, 5ths disease, hand/foot/mouth disease, HHV viruses...it can also be triggered by mold toxins.

 

If you want to post the general region of the country where you live, people might be able to suggest a PANS-friendly and/or integrative doctor who's more likely to help you look for various triggers.

[Genevieve81]

Thank youllm and mayzoo, she was tested for mono and lymes with the strep all came back negative, but she was tested in December and symptoms started in September. We live in delaware and all knows we have lymes all over and she was bitten twice and I pulled the ticks off pretty quickly one tick which I think was a dog tick did get his head up in her leg though, so that's why I had her tested, I know the only way to really show would be to have the igenx test done, which we will when the funds are available. I also thought of pans as well. And with the z pack she was on she had no very minimal tics if any for two months before and as soon as she ended the z pack the neck tics came back full on, also seems very strange that whens She's sick stomach bug and the flu she has zero tics. Also wanted to add that when the tics started she had cycle vomiting once a month at the same time at night and also complaines of stomach pain every day. I feel so helpless cause no doctors will help me they said its stress. So I have no idea where or who to go to.

[nicklemama]

Yes, there is very good reason to suspect PANDAS/PANS. My son has never had a positive strep throat swab or titers. We now know he has PANS. He was suddenly ill after a flumist vaccination. We eventually found he has lyme and co.

[Missmom]

I agree, my son had overnight onset of tics also. I specifically remember the day and time it started. I took him in that day and Two rapid tests came back negative. I begged the dr. to run all the strep bloodwork and he reluctantly agreed although looking at me like I was CRAZY. He called me back days later saying it was positive for strep and saying he believed it was pandas. He had never treated pandas before in his 14 years of practice but at least he was open to it. He started treatment immediately then referred us to a pediatric neuro who is currently treating my son with long term abx. He still has flair ups and the anxiety is still bad at times but overall the tics are almost nonexistent. I believe you should listen to your mommy gut and try to get that baby of yours some more antibiotics. I am glad I listened to my gut and did not take no for an answer. Maybe the reason our pediatrician has never seen pandas before is because he never tested for it before. He tried to say my sons tics were stress related as well but I knew it had to be more than that.

[ktdommer]

There is an organization called LymeTap that assists with the costs of Lyme testing up to 75% with kids being a priority. So if you only had the western blot IgG and IgM done at Igenex it would be $50'if you qualified. If you don't meet their income guidelines don't be afraid to write them a letter explaining your medical costs etc and they might still approve you. Your child does not need a big expensive Lyme panel.

Has your child had the Cunningham Panel done. That test is a sticker shock. Gave us the evidence we needed to confirm PANS.

Hope you get answers soon.

[WorriedDADNMOM]

genevieve81...welcome!!!! Your story for many of us is all too familiar. For us, we had the gamut of Pandas/Pans...again way too similar to your story. However there is hope. For us and the neuro stuff, mycoplasma titers----IGM were thru the roof. So this might be something to look at. I also recommend getting to a DAN/Pandas/Pans doctor. For us, long term zithromax was huge, but we also do a ton of supplementation too.

 

If you want to PM me for more info, please do so. Keep posting, asking questions and learning. It can and does get better with good interventions.

[MaryAW]

My DD never tested positive for strep or Lyme; however, she improved dramatically with Azithromycin and Ibuprofen. We gave her just the Ibuprofen until we could get her into Dr. B, and saw about a 50% improvement just from that. Her tics went away after a week of ABX and we saw continued improvement.

 

I'm a huge proponent of vitamin D and the omega 3's too. They have helped her to heal greatly. Use a high quality brand of these.