Frequent Urination - help please

[LucyC]

Hello,

 

6 weeks ago my 5 year old son started sniffing/snorting -and gurgling noises and then jerking his neck. They both started within days of each other - I have never seen him do any other kind of tic before this. It coincided with us moving half way across the world to a new home, and starting at a new school. He is not a particularly anxious child and so this behaviour has come out of the blue for me - although his dad did have some minor tics as a child. The neck jerking he is doing is violent and happening at least every minute, and sometimes two or three times in a row.

 

Anyway, I have a specific question please for those of you more familiar with Tourette's. Prior to the onset of these tics, my son started needing the toilet very frequently. Sometimes he would go 3 or 4 times in a 5 minute period. He has no UTI and ultrasound was normal. I understand that this frequent urination is common in PANDAs cases (often as a precursor to flare ups) but I am just trying to guage whether it happens in individuals with Tourette's too? My son is almost urinary incontinent when he is at home now - small bits of urine are constantly escaping into his pants. I'd welcome your views please - I'm in New Zealand and my GP thinks PANDAs but I don't think he fully understands Tourettes (based on the fact that he clearly doesn't understand what vocal tics are and thought they had to be words).

[JosyJoy]

I tried Coconut water, and seemed like helping my child. Not sure about your case.

[Chemar]

Hello Lucy

Frequent urination is not a TS tic per se as far as I know, but children with neurologicial issues do appear to sometimes have this. But what you are describing seems like actual incontinence? and I do believe that is more frequently noted in PANDAS

 

Also, it is very possible for a child who has TS to also have PANDAS

[Sheila]

Hello Lucy, this sounds like so much for you and your family to deal with after moving to New Zealand. So sorry, and I sure hope you find answers soon.

 

Question--when you say you moved to a "new house and new school" can you please describe those? Are either of them truly new--or recently remodeled or updated constructions? Also, is it possible that either of the locations is moldy?

 

I'm asking because it is possible to have the symptoms you have described from a significant exposure to mold, or to new construction or new items in a home/school -- like paint, carpet, cabinets with outgassing of formaldehyde etc. if your son is hypersensitive to these things.

 

Does your son (or your family) have allergies--or has he ever seemed overly reactive in any way to foods or exposures?

 

I'm not suggesting that's the issue, but it would make sense to try to think of all that is different in your new location, if he did not have problems before moving.

 

As you probably know, a diagnosis of Tourette's is not usually given until after 1 year of verbal and motor tics. But in any event, the main goal is to determine the underlying cause of his symptoms. Many who have symptoms of Tourette's are actually experiencing an immune reaction that is causing inflammation in the brain--and allergies, food sensitivities, and chemicals can all play a role.

 

That said, if the main issue is PANDAS or PANS, you would want to start treatment as soon as possible.

 

If you google enuresis magnesium you will see that some have found a connection between magnesium deficiency and enuresis (I recognize your son's situation goes beyond classic bed wetting). You could begin supplementing with magnesium and giving Epsom salt baths now, as tics are often improved with magnesium regardless of the diagnosis.

 

We are looking forward to hearing back from you, Lucy.

[LucyC]

Thank you for your replies - it is very much appreciated.

 

The house we have moved to is an old house that has been renovated in the last 10 years. There is mold on a very old window in his bedroom - when I made the potential connection a couple of days ago, I've moved him to sleep (with his dad) in our sleep out which doesn't have any mold in the hope that will resolve things. We will deal with the mold on the window as a matter of urgency.

 

Other potential triggers - he had a hepatitis B vaccine two days before the frequent urination started as part of New Zealand's standard vaccination programme. I bought your book and saw that the hepatitis vaccine was mentioned a number of times as a trigger. I did some rapid Internet research and found some research linking thimosel containing Hep B vaccines (only published last month) with tic disorders but NZ's vaccine's don't contain thimosel since 2012, so I'm a bit confused about the likelihood of the impact of that, or even what I could do about it if it was that.

 

In terms of the PANDA's link - my son had a sore throat 3 or 4 weeks before this started, which was not treated with antibiotics. In the week before he

[LucyC]

Oops sorry, posted before I was finished. In the week before the frequent urination started, I had bullous impetigo from infected insect bites and was treated with anti-biotics. I believe that bullous impetigo isn't usually strep A but can be strep B but I could be wrong.

 

Anyway, when I took my son to the doctors in early March, he did blood tests and my son did have an elevated strep titres. The GP gave us 7 days antibiotics, but at the time we started taking the antibiotics the tics were much much reduced (but never completely gone) and remained so whilst on the antibiotics. It wasn't until 2 weeks after he finished the antibiotics course, that the tics flared up again. I went back to the doctors and they gave us more anti-biotics (penicillin) for a longer course. We are 4 or 5 days into that and there is no reduction in tics or other symptoms just yet. So I'm not sure if the reduction we saw on antibiotics first time/exacerbation after finishing was just antibiotics related/normal waning of tics or related to other triggers not yet identified.

 

In the meantime, my doctor has been in contact with the PANDA's person in NZ, and has got a protocol for treatment and I see him again this week. The doctor I am seeing practises both medicine and alternative medicine. He did electromagnetic (or maybe muscle testing) on my son and strep showed as a problem from that - although I'm not sure how much I believe the muscle testing tbh!

 

We have no other known allergies in the family. He has never shown sensitivity to any foods/medicines/products before.

 

Thank you for any insight you can offer me. I feel very very far from my friends and family right now - I'm in a new town and its so hard painting a smile on my face when my heart is breaking inside for my boy.

[Chemar]

I would personally follow the doctor's lead on this as he seems to know about the strep/PANDAS possibility. The strep positive plus the sore throat before this began may be an important clue.

I am not sure what the antibiotics of choice are nowadays, but some years back azithromycin aka Zithromax was one of the most frequently mentioned helpful abx that I heard about for PANDAS.

 

Our PANDAS parents are very knowledgeable and may also be able to give input. http://latitudes.org/forums/index.php?showforum=17

 

re the vaccines...Sheila knows a lot more in that area, but I do know some immune systems do get compromised from them, especially in susceptible kids.

 

Hoping you get clear direction and effective treatment