Potty Training Regression

[KatieFletcher]

I have two kids with Chiari Malformations. My youngest is 3 and was diagnosed last March with a herniation of 1 cm. they said they would just keep an eye on him unless he was presenting problems. He has other health issues such as asthma and has had to have sinus surgery this summer. In June of this summer he was completely potty trained having very minimal accidents. Since then he has been doing great until about a month ago. He started having a lot of accidents and it has since gotten so bad he is back in diapers. Has anyone had an experience similar to this?  His pediatrician thinks it could be type 1 diabetes but he doesn't have any of the symptoms. Any advice would be appreciated. Thanks

[selmaS]

   No, but it is not the length of the herniation that is of importance it is the width and shape....if it is obstructing CSF or not....

Many with very long herniations can have no symptoms, while those with very minimal herniations 3mm or less can have a wider tonsil which obstructs CSF flow...

Yes, GERD can be related  to Chiari ....

Many Drs will monitor if there is no obstruction, did ur DS have a CINE MRI?

[KatieFletcher]

It is my understanding that 1 cm is not minimal?  Please correct me if I am wrong as I do not understand this all!  They did an mrI on his spine and said everything looked ok. He was sent to a nuero surgeon who didnt given him the time of day. We went to Houston to see a Chiari specialist who said he should be monitored more closely. His other symptom is intermitent toe walking. Do these kids just live witht the symptoms until they become unbearable?  My older son also has PKU and other health issues so its hard to know what is related to the Chiari. My youngest also has GERD is that related?

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry to hear u have 2 babies with this condition, as I know it is diff to have it urself, but to see ur children suffer is much more difficult.

AS for the regression it may be related to the Chiari as we can develop incontinence.....

I know the herniation is minimal, but more testing should be done...check to see if he may have a CSF obstruction, tethered cord, sleep apnea, ehlers-danlos, syringomyelia....

U need to locate a true Chiari specialist who will look to rule out ALL related conditions.